Me, opening one of my gifts.
Dan with one of his....
and Chip with his.
We were so worried that he was too attached to his bed that he wouldnt be interested in the new one, but he loved it :)
2 years ago
Dec 27, 2008
Christmas Picture Update
All the loot under the tree..
Me, opening one of my gifts.
Dan with one of his....
and Chip with his.
We were so worried that he was too attached to his bed that he wouldnt be interested in the new one, but he loved it :)
Me, opening one of my gifts.
Dan with one of his....
and Chip with his.
We were so worried that he was too attached to his bed that he wouldnt be interested in the new one, but he loved it :)
Back to work and CHRISTMAS
Wow, I have so much to blog about but its soo jumbled in my head lets see if I can get it all out and make sense :).
Lets start with last Friday, December 19th. Daniel and I were running around Hampton Roads trying to get all of the paperwork done and filed properly so that we can get reimbursed for our Mayo Clinic trip. Dan's shop was having there Christmas party that day at a restaurant called Roger Browns. It was very good food, but the people I am friends with were at a different table on the other side of the section that we were in :(. Anyways, right before we got to the restaurant Karen called and told me that she was quitting. She was going to email Mike Marshall and Dave with her resignation, telling them everything that was wrong with the hotel and the way they managed it. Because I know that Dave does not always read his emails I called Duane at Marshall Management and told him what was going on and asked what should I do. He went to his boss, Rick, and then called me back and told me that they had to tell Dave. After all was said and done, Dave came down for the luncheon with the owners on Saturday, which I did not go to do to other things that needed to get done at home. Dan got contacts and now is a sexy beast with no glasses to get in his way :)
On Sunday Dan and I woke up with the beginnings of a cold. Of course his was pretty much gone by the end of the day while mine just started to go away yesterday...We went and saw "Yes Man". It was very cute and a good entertaining movie. It was about time Jim Carey came out with a new movie so I was happy :).
Monday I went back to work and only worked for a few hours before I left for a physical therapy appt for my knee. Tuesday I worked a little longer because I had stuff to get done and because Dave came down to see what mess Karen had left. Not long after he came into the office he came up to me and said "I have already told Marshall this and I am telling you, if you want that desk it is yours you are more then capable." That made me feel so much better about all the work I put into that place. He told me that when I first got put into the hospital they started to notice that something wasn't right at the hotel. I guess Duane came in and was asking Karen for some reports and she had no idea how to get them. I do remember had calling me about how to find them but I had never thought that it was a "test" for her. Dave was very unhappy that she had to call me to find the information. I then told him what had really been going on it the hotel w/ me doing the owners report and Susan's marketing/budget report. I told him that I had done it and they didn't even try to do the reports with out me. He would ask why something wasn't done and I told him the answer to that question was "I wasn't here". Its a very sad answer, but it was the truth. I also realized that a lot of the problems the hotel had Dave was unaware of. Karen wasn't telling him when things broke, and she wasn't trying to fix them. Now I don't blame her for the not fixing part because there was no money, but she should have informed Dave about it. I left at lunch time to get lunch then to go to a counseling appointment with Dan. After that we just hung out at home. On Wednesday we both worked a half day and enjoyed a quiet Christmas Eve together. On Christmas day we woke up and opened presents and then went to see The Curious Case of Benjamin Button. It was a good movie but it sucked because the theater was small and full so it was very hot, and since the movie was long and on the slower side the hotter it got the slower the movie seemed to drag, plus for some reason I was very sleepy and with the heat it was very hard to stay awake. We just hung out at home and had ham, baked potatoes, corn bread and pumpkin pie for dinner. It was delicious expect I had no powdered sugar for the pie so that stunk!
Friday I went back to work with a completely new attitude. I have come to the conclusion that if I can get everyone to pull there own weight we can turn the hotel back around into the place that it was when it opened instead of the dump that it has become. If they don't to pay me and a manager salary they will be able to pay of some of the bills faster so that we are able to order the things we need in the hotel. Everyone seems to like that idea for a few reasons, the biggest being that they already feel less stressed coming to the hotel and want to keep it that way. Hopefully with me and the help of Dave we will be able to get this place back to the way it should be. I am very hopeful and have a lot of faith that it can be done...especially before we hit the busy season again.
I guess the big factor in all this is me. I need to be able to get through the pain and get stuff done, but make sure I don't over due it and make myself worse. I am very scared about taking on the responsibility of the entire hotel but I have done it before for a short period of time. I would rather have to do everything at my pace then have to train and do stuff for someone at a different pace. Lets hope everything will work out for the best. Pray! I need it!! :) Thank you! :)
Lets start with last Friday, December 19th. Daniel and I were running around Hampton Roads trying to get all of the paperwork done and filed properly so that we can get reimbursed for our Mayo Clinic trip. Dan's shop was having there Christmas party that day at a restaurant called Roger Browns. It was very good food, but the people I am friends with were at a different table on the other side of the section that we were in :(. Anyways, right before we got to the restaurant Karen called and told me that she was quitting. She was going to email Mike Marshall and Dave with her resignation, telling them everything that was wrong with the hotel and the way they managed it. Because I know that Dave does not always read his emails I called Duane at Marshall Management and told him what was going on and asked what should I do. He went to his boss, Rick, and then called me back and told me that they had to tell Dave. After all was said and done, Dave came down for the luncheon with the owners on Saturday, which I did not go to do to other things that needed to get done at home. Dan got contacts and now is a sexy beast with no glasses to get in his way :)
On Sunday Dan and I woke up with the beginnings of a cold. Of course his was pretty much gone by the end of the day while mine just started to go away yesterday...We went and saw "Yes Man". It was very cute and a good entertaining movie. It was about time Jim Carey came out with a new movie so I was happy :).
Monday I went back to work and only worked for a few hours before I left for a physical therapy appt for my knee. Tuesday I worked a little longer because I had stuff to get done and because Dave came down to see what mess Karen had left. Not long after he came into the office he came up to me and said "I have already told Marshall this and I am telling you, if you want that desk it is yours you are more then capable." That made me feel so much better about all the work I put into that place. He told me that when I first got put into the hospital they started to notice that something wasn't right at the hotel. I guess Duane came in and was asking Karen for some reports and she had no idea how to get them. I do remember had calling me about how to find them but I had never thought that it was a "test" for her. Dave was very unhappy that she had to call me to find the information. I then told him what had really been going on it the hotel w/ me doing the owners report and Susan's marketing/budget report. I told him that I had done it and they didn't even try to do the reports with out me. He would ask why something wasn't done and I told him the answer to that question was "I wasn't here". Its a very sad answer, but it was the truth. I also realized that a lot of the problems the hotel had Dave was unaware of. Karen wasn't telling him when things broke, and she wasn't trying to fix them. Now I don't blame her for the not fixing part because there was no money, but she should have informed Dave about it. I left at lunch time to get lunch then to go to a counseling appointment with Dan. After that we just hung out at home. On Wednesday we both worked a half day and enjoyed a quiet Christmas Eve together. On Christmas day we woke up and opened presents and then went to see The Curious Case of Benjamin Button. It was a good movie but it sucked because the theater was small and full so it was very hot, and since the movie was long and on the slower side the hotter it got the slower the movie seemed to drag, plus for some reason I was very sleepy and with the heat it was very hard to stay awake. We just hung out at home and had ham, baked potatoes, corn bread and pumpkin pie for dinner. It was delicious expect I had no powdered sugar for the pie so that stunk!
Friday I went back to work with a completely new attitude. I have come to the conclusion that if I can get everyone to pull there own weight we can turn the hotel back around into the place that it was when it opened instead of the dump that it has become. If they don't to pay me and a manager salary they will be able to pay of some of the bills faster so that we are able to order the things we need in the hotel. Everyone seems to like that idea for a few reasons, the biggest being that they already feel less stressed coming to the hotel and want to keep it that way. Hopefully with me and the help of Dave we will be able to get this place back to the way it should be. I am very hopeful and have a lot of faith that it can be done...especially before we hit the busy season again.
I guess the big factor in all this is me. I need to be able to get through the pain and get stuff done, but make sure I don't over due it and make myself worse. I am very scared about taking on the responsibility of the entire hotel but I have done it before for a short period of time. I would rather have to do everything at my pace then have to train and do stuff for someone at a different pace. Lets hope everything will work out for the best. Pray! I need it!! :) Thank you! :)
Dec 25, 2008
Merry Christmas
I promise I will post a update about my health here in the next couple of days, but most importantly right now I want to wish everyone a very Merry Christmas!!
Dan, Chip and I opened presents this morning. Dan and I are going to go see The Curious Case of Benjamin Button in a little bit. Its a family tradition that I want to continue with my family. :)
so..
MERRY CHRISTMAS!!!!
Dan, Chip and I opened presents this morning. Dan and I are going to go see The Curious Case of Benjamin Button in a little bit. Its a family tradition that I want to continue with my family. :)
so..
Dec 19, 2008
Little Shopping Spree
So Dan and I went shopping last night, there were a few things we needed to get like...Stocking holders so we don't ruin our mantel. They are so cute cause its a set of 3 Deer, BUT!!! One looks like a daddy deer, one looks like a mommy deer, and one looks like a baby deer!!
We also got a banana hanger so my bananas wont go bad so fast anymore. A TP and magazine holder for the hall bathroom so that it isnt so messy when another person starts using it. We also got a few other small things for around the house...
Then we got SHOES!! We both needed shoes so it was like a Christmas present to each other that we got to open early (we are both wearing them today). I was kinda bummed because the ones I got came in a white shoe with a blue design and were 10dollars LESS then the ones I got.. But they didnt have any but the show model which was a size 8, and I am a size 9. How much does that suck...
Anyways here are my shows..
And here are Dan's shoes.
I also finished decorating the tree yesterday, so here is the final result!
::EDIT 1/1/09 7:45pm::i had dan and my shows backwards, but its fixed.
We also got a banana hanger so my bananas wont go bad so fast anymore. A TP and magazine holder for the hall bathroom so that it isnt so messy when another person starts using it. We also got a few other small things for around the house...
Then we got SHOES!! We both needed shoes so it was like a Christmas present to each other that we got to open early (we are both wearing them today). I was kinda bummed because the ones I got came in a white shoe with a blue design and were 10dollars LESS then the ones I got.. But they didnt have any but the show model which was a size 8, and I am a size 9. How much does that suck...
Anyways here are my shows..
And here are Dan's shoes.
I also finished decorating the tree yesterday, so here is the final result!
::EDIT 1/1/09 7:45pm::i had dan and my shows backwards, but its fixed.
Dec 18, 2008
Dr Update and the beginning of Christmas
So I went to the doctor yesterday. It was a very good visit. He said my incision sites looked good. We talked a lot about what happened while we were at Mayo and what the future holds. He put in my prescription for my latix which is the diuretic. The diuretic is not for my every day pain, it is only for the pain i get with exertion. They think that removing some of the excess fluid in my body will help relieve some of the pressure in my heart. He explained how it all works and I understand it, but I can not explain it..sorry.. I am to continue taking the pain killers for my everyday pain. Because I do feel pain through the medication during exertion I will be able to tell if it is working or not. The diuretic hasn't been too bad, I haven't had to pee as much as I thought I would have to. I will go tomorrow to get my blood taken as the medication can cause some issues with my kidneys. It can make it so that my potassium level drops and remains low. We will not stop the medication but add on a potassium supplement and I will have to eat more bananas (yum). If all this doesn't work surgery will be necessary, but they do not believe the the surgery will help the everyday pain either. Because of how healthy I am otherwise it would take years to get a new heart if I went on the list now. However we may discuss putting me on a list in the near future.
In other news... Daniel and I have only a week and a half left of privacy as we are getting a roommate to help with the bills. While we are able to afford everything, money is tight. We also need to prepare for me loosing my job as the hotel is not doing well. Plus this gives me the ability to take a day off if I need to instead of going to work when I feel so awful.
Last night I put the Christmas tree up. Hopefully tonight I will get it decorated. I just need to get Dan to get the decorations down from the attic. We didn't know if we would get to put all this up so I am excited that we get to. Since my birthday has now passed Christmas can officially begin. My mom always wanted me to know there was a difference because my birthday and Christmas so we always waited until December 16th to start decorating and stuff. While I now know the difference, it feels weird not waiting...However I love Christmas and decorations to much from now on I think I am going to start earlier from now on. I don't like the idea of putting it up just in time to take it all down. So I guess we will see........
Anyways, here is a picture of me "forming" the tree.
And here is a picture of it all lit up.
Ill post another picture once I get it all decorated :)
In other news... Daniel and I have only a week and a half left of privacy as we are getting a roommate to help with the bills. While we are able to afford everything, money is tight. We also need to prepare for me loosing my job as the hotel is not doing well. Plus this gives me the ability to take a day off if I need to instead of going to work when I feel so awful.
Last night I put the Christmas tree up. Hopefully tonight I will get it decorated. I just need to get Dan to get the decorations down from the attic. We didn't know if we would get to put all this up so I am excited that we get to. Since my birthday has now passed Christmas can officially begin. My mom always wanted me to know there was a difference because my birthday and Christmas so we always waited until December 16th to start decorating and stuff. While I now know the difference, it feels weird not waiting...However I love Christmas and decorations to much from now on I think I am going to start earlier from now on. I don't like the idea of putting it up just in time to take it all down. So I guess we will see........
Anyways, here is a picture of me "forming" the tree.
And here is a picture of it all lit up.
Ill post another picture once I get it all decorated :)
Twas a Night Before Christmas... Coastie Style
Twas the night before Christmas and all through each state,
Coast Guard families were starting to celebrate.
Just then from the white House came an urgent call,
A crisis had arisen that would affect one and all.
In fact the U.S. State Department was frantic,
For Santa Claus had just landed in the Atlantic!
It Was foggy as ever; Rudolph had made a blunder.
Santa, sleigh, and eight reindeer were going under.
Though the stockings were hung by the chimneys with care.
Poor Santa gurgled, "I'll never get there."
When what to his wondering eye should appear;
But some coast guard cutters with their rescue gear!
The officers and crew were so lively and quick;
Sure was a lucky break for good ole Saint Nick.
With a nod from the captain. they went right to work.
Rudolph was embarrassed, he felt like a jerk.
Poor Santa was soggy, but as anyone could see,
He was very grateful to the U.S.C.G!
And we heard him exclaim as they towed him from sight,
"If it weren't for age and weight, I'd enlist Tonight!"
Coast Guard families were starting to celebrate.
Just then from the white House came an urgent call,
A crisis had arisen that would affect one and all.
In fact the U.S. State Department was frantic,
For Santa Claus had just landed in the Atlantic!
It Was foggy as ever; Rudolph had made a blunder.
Santa, sleigh, and eight reindeer were going under.
Though the stockings were hung by the chimneys with care.
Poor Santa gurgled, "I'll never get there."
When what to his wondering eye should appear;
But some coast guard cutters with their rescue gear!
The officers and crew were so lively and quick;
Sure was a lucky break for good ole Saint Nick.
With a nod from the captain. they went right to work.
Rudolph was embarrassed, he felt like a jerk.
Poor Santa was soggy, but as anyone could see,
He was very grateful to the U.S.C.G!
And we heard him exclaim as they towed him from sight,
"If it weren't for age and weight, I'd enlist Tonight!"
Dec 16, 2008
HOME SWEET HOME
Yeah!! We are home. oh how good it feels! We got home about 12 oclock ate some lunch, unpacked, cleaned a little, and I worked on fixing one of our computers and found that the mother board is part of the reason it doesn't work...its been a busy day...
We had a nice night at my daddy's last night. We watch Chuck and Heroes and then had breakfast at IHOP this morning before hitting the road. My dad asked "where was gas cheapest on your trip", my response had been home and boy was I right. When we got home today gas was 1.37!! How awesome is that? We paid up to 1.79 I think? (maybe that was high grade but I don't think it was).
I called Dr. Adinaro today to tell him that Dr. Ommen was going to try to call him and let him know what he thinks the next step should be. Since he hadn't heard from Dr. Ommen yet he said he would call him this afternoon. Around 5pm Dr. Adinaro called me back and said he had spoken with Dr. Ommen and if I could come in tomorrow morning. Therefore, I have an appointment tomorrow at 8:15am. Dan is going with my so that we can file all our paper work for our trip as it has to be done within 5 days of our return. (hey the faster we do it the faster we get our money!)
So tomorrow I will start having to pee tons which I am not looking forward to, but hopefully a low dose of this medication will do the trick!!
Cross your fingers!!
:)
We are now going out to Chili's for dinner with Jeremy, Esmie and baby Jayden for my birthday.. WAHOO!
Have a good night everyone!
We had a nice night at my daddy's last night. We watch Chuck and Heroes and then had breakfast at IHOP this morning before hitting the road. My dad asked "where was gas cheapest on your trip", my response had been home and boy was I right. When we got home today gas was 1.37!! How awesome is that? We paid up to 1.79 I think? (maybe that was high grade but I don't think it was).
I called Dr. Adinaro today to tell him that Dr. Ommen was going to try to call him and let him know what he thinks the next step should be. Since he hadn't heard from Dr. Ommen yet he said he would call him this afternoon. Around 5pm Dr. Adinaro called me back and said he had spoken with Dr. Ommen and if I could come in tomorrow morning. Therefore, I have an appointment tomorrow at 8:15am. Dan is going with my so that we can file all our paper work for our trip as it has to be done within 5 days of our return. (hey the faster we do it the faster we get our money!)
So tomorrow I will start having to pee tons which I am not looking forward to, but hopefully a low dose of this medication will do the trick!!
Cross your fingers!!
:)
We are now going out to Chili's for dinner with Jeremy, Esmie and baby Jayden for my birthday.. WAHOO!
Have a good night everyone!
Dec 15, 2008
BIRTHDAY!!
yeahh! its my birthday and i am so excited! I dont know why so many people hate there birthdays but i LOVE having a day that is all about me, even though I share it with thousand of people (even some *distant* family members). I love that people think about me and wish me a happy birthday.
We left Momma Jeans this morning (Dan's mom) and are now at my dad's for the night. We are about 3.5 hours from home so we will be home early afternoon tomorrow. I am excited to be home and do laundry and clean up the house and just be home. I have had fun seeing Dan's family and stuff but I am def. ready to be home.
To those who wished me a happy birthday, THANK YOU. To those who didn't... you suck!! lol :) but i still love ya!
Nite!
We left Momma Jeans this morning (Dan's mom) and are now at my dad's for the night. We are about 3.5 hours from home so we will be home early afternoon tomorrow. I am excited to be home and do laundry and clean up the house and just be home. I have had fun seeing Dan's family and stuff but I am def. ready to be home.
To those who wished me a happy birthday, THANK YOU. To those who didn't... you suck!! lol :) but i still love ya!
Nite!
Dec 13, 2008
Dec 12, 2008
Post Heart Catheter
Hey everyone. I am writing this in Microsoft word while I am laying in a hospital bed because the internet is being retarded :(. It is acting like the hotel was the other day and being “local” only.
Anyways! My catheter went well but was the worst so far! This morning was so crazy because I set my alarm wrong. I set it for 6:45 instead of 5:45 so that we could leave at 7 thinking my report time was 7:15. So I got up and took a shower with no idea about the time. I started to pack up my stuff so that we could leave quickly if we had to, if I had to stay overnight other something. When I started doing that I asked Dan what time it was and he said 7:06 and I was like ohh so 6:06 thinking he hadn’t changed the time on his laptop and he is like no it is really 7 and I was like SHIT we need to leave NOW! So I through on my sweat shirt, took my meds, and grabbed my phone and walked out the door. We headed down stairs into the subway. Once we got down there we looked on the map to see where we were supposed to go and realized that we needed to be at a different hospital across down (like 2 miles) that is no connected to the subway. I was really bummed because I had just taken a shower so my hair was wet and I was wearing pajama pants and a tank with my hoodie, so I wasn’t really dressed right to leave the hospital.
Then we got on the elevator we went up to our room so I could get the paper to see exactly where we had to go. That is when I realized we weren’t as late as I thought we were because we didn’t need to be there until 7:45. So we headed back down stairs to the parking lot and I was reading the paper that said I needed my medicine. I was completely frazzled at this point so I went back up stairs and got them and headed to the car. Now the streets out here are all numbers but the directions change so there is like 1st Street SW/SE and 1st Ave NW/NE or something like that (I’m not sure which way the Avenue’s are and which the Street’s are). So Dan started driving while I tried to read the map but as soon as I thought I had it figured out the direct change and I was confused again so I gave up and let Dan figure it out. I figure that’s what he gets for leaving the parking lot without knowing where he is going. We quickly found the hospital because as I said it was only about 2 miles total.
Once we were there parking wasn’t bad, Dan drove past the parking for the building we needed to be in because he wasn’t looking at signs and was driving too fast to give me a chance to read them and tell him where to go. So we got parked and went upstairs and checked in about 5 minutes early. When we got upstairs and checked in they gave Dan a pager that they would page to tell him when the procedure was starting, ending, and when he needed to come back. They gave me a number that matched to the pager so they would know which pager to page. I thought it was a pretty cool system. We sat there until 8:30-8:45 when they took be back to start prepping me. My surgery time depended on the person ahead of me so I didn’t get taken back until 10:30-11:00. They told me they were going to page Dan but I guess they didn’t because he told me he called around 12 because he was worried that he hadn’t heard anything yet and they said they didn’t start until about 11.
The doctor came in about 10 minutes before they took me back to tell me what he was going to do. He was a very nice man but told me very scary things. He told me that they would be putting the catheter in my neck and I started to tear up. He was so nice about it and told me I could still change my mind, even if they started I could tell them to stop and they would and that I did not have to do this if I did not want to. I told him it wasn’t that I didn’t want to I was just scared because I have never had it in my neck and was never told that was a possibility. Along with putting the catheter into my neck they were going to do an ultra sound and have me peddle a bike while lying down. I have had to do that before and while it wasn’t hard it wasn’t easy either. They gave me just enough medicine to help with my nerves a little, or so they said. They also gave me some local anesthetic and told me to tell them when it hurt. Well I cried and said owe multiple times. Then I could feel the stuff in my heart and my heart palpitations. So I cried a lot, the whole left side of my hair line was wet with tears. The hardest part about the bike is that I couldn’t see how fast I needed to keep it going and so they kept saying to go fast and keep it up in very high voices. I made it to the second level but could only go for about a minute on it so in total I made it 4 minutes. That test was to check for obstruction which they did not see any change in which is a good thing.
Because they did not find a problem there they did another catheter into my groin which did not hurt. Since I did not have to do anything they were able to give me more medicine to calm me down and help me get through it. I could feel the catheters in me which again was uncomfortable. This time they gave me something through my IV to make my heart rate go up as if I was exercising even though I wasn’t. The doctor had told me to take my medication this morning so that made me more tolerant of this special IV medication; therefore they had to use more in me to get any results. This test was to test for pressure. They said the pressure did increase at during excursion about when my symptoms got bad.
Since they got the answers to the questions they finished me up and took me to recovery. I was doing pretty well and since I did not have a lot of drugs to make me loopy I was awake and talking to them right away. Everything was fine and dandy until they got ready to take me down to a secondary recovery room. They checked my incision sites as Dan was brought back so that he could go with us, and everything looked good. The nurses moved on to check something else when all of a sudden I felt like my urinary catheter was leaking or something. It kind of freaked me out because all of a sudden I was wet. They asked me if I wanted to be cleaned up then or wait until I got down stairs which would take just a couple minutes. I said I would wait but about 30 seconds later I started to feel even wetter and asked to me clean up at that time. As soon as they pulled the covers off the realized I was bleeding from one of the incision sites in my groin. It completely freaked me out. It took one of the nurses putting pressure on it for a good 30-45 minutes and then putting a clamp on my leg for a while to stop the bleeding. They did have to give me fentinal which is a fast acting pain killer to help me get through that because the pressure hurt like hell. It took just over an hour to get it to completely stop.
At that time I was taken down stairs and cleaned up. I was also fed when I got down stairs. They asked me what I wanted and I choose a turkey sandwich with chicken noodle soup, vanilla ice cream, a banana and a sierra mist. Yum yum! It was good. They had given me a couple crackers when they started to re-pressurize my leg to settle my stomach.
As they were getting ready to do my discharge speeches the doctor came in. We decided that I would start off by taking a diuretic to help relieve the pressure. I will also be weaned off of one of my medications and put onto a medication I have taken previously. I was taken off it in the past because I was taking it with something else and my blood pressure was getting too low. So now we are going to try it alone. If these medication changes do not work over time then Dan and I will need to talk with this doctor again and discuss surgery. He says that removing some of the muscle can help relieve that pressure, however sometimes this diuretic can also. It is going to take a while to get to that point which really sucks, but it is a lot less time than if I didn’t have this pressure issue and we just continued to play with my medication.
Thank you for all your prayers! They worked and we now know why I am having so much pain.
Anyways! My catheter went well but was the worst so far! This morning was so crazy because I set my alarm wrong. I set it for 6:45 instead of 5:45 so that we could leave at 7 thinking my report time was 7:15. So I got up and took a shower with no idea about the time. I started to pack up my stuff so that we could leave quickly if we had to, if I had to stay overnight other something. When I started doing that I asked Dan what time it was and he said 7:06 and I was like ohh so 6:06 thinking he hadn’t changed the time on his laptop and he is like no it is really 7 and I was like SHIT we need to leave NOW! So I through on my sweat shirt, took my meds, and grabbed my phone and walked out the door. We headed down stairs into the subway. Once we got down there we looked on the map to see where we were supposed to go and realized that we needed to be at a different hospital across down (like 2 miles) that is no connected to the subway. I was really bummed because I had just taken a shower so my hair was wet and I was wearing pajama pants and a tank with my hoodie, so I wasn’t really dressed right to leave the hospital.
Then we got on the elevator we went up to our room so I could get the paper to see exactly where we had to go. That is when I realized we weren’t as late as I thought we were because we didn’t need to be there until 7:45. So we headed back down stairs to the parking lot and I was reading the paper that said I needed my medicine. I was completely frazzled at this point so I went back up stairs and got them and headed to the car. Now the streets out here are all numbers but the directions change so there is like 1st Street SW/SE and 1st Ave NW/NE or something like that (I’m not sure which way the Avenue’s are and which the Street’s are). So Dan started driving while I tried to read the map but as soon as I thought I had it figured out the direct change and I was confused again so I gave up and let Dan figure it out. I figure that’s what he gets for leaving the parking lot without knowing where he is going. We quickly found the hospital because as I said it was only about 2 miles total.
Once we were there parking wasn’t bad, Dan drove past the parking for the building we needed to be in because he wasn’t looking at signs and was driving too fast to give me a chance to read them and tell him where to go. So we got parked and went upstairs and checked in about 5 minutes early. When we got upstairs and checked in they gave Dan a pager that they would page to tell him when the procedure was starting, ending, and when he needed to come back. They gave me a number that matched to the pager so they would know which pager to page. I thought it was a pretty cool system. We sat there until 8:30-8:45 when they took be back to start prepping me. My surgery time depended on the person ahead of me so I didn’t get taken back until 10:30-11:00. They told me they were going to page Dan but I guess they didn’t because he told me he called around 12 because he was worried that he hadn’t heard anything yet and they said they didn’t start until about 11.
The doctor came in about 10 minutes before they took me back to tell me what he was going to do. He was a very nice man but told me very scary things. He told me that they would be putting the catheter in my neck and I started to tear up. He was so nice about it and told me I could still change my mind, even if they started I could tell them to stop and they would and that I did not have to do this if I did not want to. I told him it wasn’t that I didn’t want to I was just scared because I have never had it in my neck and was never told that was a possibility. Along with putting the catheter into my neck they were going to do an ultra sound and have me peddle a bike while lying down. I have had to do that before and while it wasn’t hard it wasn’t easy either. They gave me just enough medicine to help with my nerves a little, or so they said. They also gave me some local anesthetic and told me to tell them when it hurt. Well I cried and said owe multiple times. Then I could feel the stuff in my heart and my heart palpitations. So I cried a lot, the whole left side of my hair line was wet with tears. The hardest part about the bike is that I couldn’t see how fast I needed to keep it going and so they kept saying to go fast and keep it up in very high voices. I made it to the second level but could only go for about a minute on it so in total I made it 4 minutes. That test was to check for obstruction which they did not see any change in which is a good thing.
Because they did not find a problem there they did another catheter into my groin which did not hurt. Since I did not have to do anything they were able to give me more medicine to calm me down and help me get through it. I could feel the catheters in me which again was uncomfortable. This time they gave me something through my IV to make my heart rate go up as if I was exercising even though I wasn’t. The doctor had told me to take my medication this morning so that made me more tolerant of this special IV medication; therefore they had to use more in me to get any results. This test was to test for pressure. They said the pressure did increase at during excursion about when my symptoms got bad.
Since they got the answers to the questions they finished me up and took me to recovery. I was doing pretty well and since I did not have a lot of drugs to make me loopy I was awake and talking to them right away. Everything was fine and dandy until they got ready to take me down to a secondary recovery room. They checked my incision sites as Dan was brought back so that he could go with us, and everything looked good. The nurses moved on to check something else when all of a sudden I felt like my urinary catheter was leaking or something. It kind of freaked me out because all of a sudden I was wet. They asked me if I wanted to be cleaned up then or wait until I got down stairs which would take just a couple minutes. I said I would wait but about 30 seconds later I started to feel even wetter and asked to me clean up at that time. As soon as they pulled the covers off the realized I was bleeding from one of the incision sites in my groin. It completely freaked me out. It took one of the nurses putting pressure on it for a good 30-45 minutes and then putting a clamp on my leg for a while to stop the bleeding. They did have to give me fentinal which is a fast acting pain killer to help me get through that because the pressure hurt like hell. It took just over an hour to get it to completely stop.
At that time I was taken down stairs and cleaned up. I was also fed when I got down stairs. They asked me what I wanted and I choose a turkey sandwich with chicken noodle soup, vanilla ice cream, a banana and a sierra mist. Yum yum! It was good. They had given me a couple crackers when they started to re-pressurize my leg to settle my stomach.
As they were getting ready to do my discharge speeches the doctor came in. We decided that I would start off by taking a diuretic to help relieve the pressure. I will also be weaned off of one of my medications and put onto a medication I have taken previously. I was taken off it in the past because I was taking it with something else and my blood pressure was getting too low. So now we are going to try it alone. If these medication changes do not work over time then Dan and I will need to talk with this doctor again and discuss surgery. He says that removing some of the muscle can help relieve that pressure, however sometimes this diuretic can also. It is going to take a while to get to that point which really sucks, but it is a lot less time than if I didn’t have this pressure issue and we just continued to play with my medication.
Thank you for all your prayers! They worked and we now know why I am having so much pain.
Dec 11, 2008
Cath Time Update
Ladies and Gentlemen
My report time for my cath is 745am on Friday December 12th.
I will give you an update when I am conscious enough to do so.
Thank you and Good Night!
My report time for my cath is 745am on Friday December 12th.
I will give you an update when I am conscious enough to do so.
Thank you and Good Night!
Day 2
Today was the day I saw the doctor. I was kind of pissed because it said my appointment time was 9:15 so we go there early but NOOOO that was my check in time. My appointment time was 930, which they still ran late on. ANYWAYS
We talked to the doctor about what was going on and why I was here. Basically he said that there is nothing obvious that they can see that needs fixing. I asked him if I really needed the stress test that I was supposed to have this afternoon or if there was any way I could get out of it. We decided that I did not have to do the stress test PRAISE THE LORD! and that instead I will do another heart cathertizaton. This time with the cath. they will be looking more at the blood flow through my chambers to check for obstruction and they will check the pressure also. We know that I do have some obstruction but it is minimal. If they find that I have more later in the heart beat when I am doing stuff or they find that I have high pressure then they will do a myectomy (which is removing some of the muscle). If i do not have those things then I will go home and he will send some recommendations and we will continue to play with my medications. While I am relieved that I do not have to do a stress test I am still really stressed over my options. I do not want to go home and suffer while we play around I want to feel better and be done with all this garbage.
Sadly I am hoping something shows up on the cath so that we can do something the make it better.
I do not know what time the cath is yet. I am supposed to call between 7pm and midnight to find out what time.
I will let you all know when I find out.
NAP TIME
We talked to the doctor about what was going on and why I was here. Basically he said that there is nothing obvious that they can see that needs fixing. I asked him if I really needed the stress test that I was supposed to have this afternoon or if there was any way I could get out of it. We decided that I did not have to do the stress test PRAISE THE LORD! and that instead I will do another heart cathertizaton. This time with the cath. they will be looking more at the blood flow through my chambers to check for obstruction and they will check the pressure also. We know that I do have some obstruction but it is minimal. If they find that I have more later in the heart beat when I am doing stuff or they find that I have high pressure then they will do a myectomy (which is removing some of the muscle). If i do not have those things then I will go home and he will send some recommendations and we will continue to play with my medications. While I am relieved that I do not have to do a stress test I am still really stressed over my options. I do not want to go home and suffer while we play around I want to feel better and be done with all this garbage.
Sadly I am hoping something shows up on the cath so that we can do something the make it better.
I do not know what time the cath is yet. I am supposed to call between 7pm and midnight to find out what time.
I will let you all know when I find out.
NAP TIME
Dec 10, 2008
Day 1
Wow, I almost forgot to blog for today and i've been thinking about it all day about what i was going to say and all that..and then i almost forgot when i was finally at my computer. I am such a dork!
Today went fairly well. Because I had sent in all my admin paper work I was able to start off with my tests and didn't have to go deal with all the paper work. So my first appointment was at 720 and was for blood work. We walked threw the "subway" which was like the bottom floor of the hospitals. It was nice because we never had to go outside where it was maybe 3degrees.
Anyways, we walk up to the line and there are like 10 people in front of me. Dan and I thought the wait would be long but it wasn't even 5 minutes before I got checked in and sent threw the purple doors into the waiting room. The waiting room itself had at least 20 people and again it took me 5-8 minutes of waiting. They had soo many people taking blood.
Because we were done so early before my next appointment I thought I could go get my pulmonary function monitor early. They told me that I had to wait until my appointment time because it was a class like setting where they told you how it works.
So we went back down stairs and went to get my EKG done. We were again very early but I went ahead and checked in and was taken back in about 10-15 minutes. They had a bunch of changing rooms w/ a lock and key so you can lock up your stuff when you are getting the EKG done which i thought was really nice. They also had a bunch of EKG rooms so it went quickly. This office is where I was also supposed to get my holter monitor but I had to go get my chest x-ray first. When I checked in for my x-ray they gave me a pager which went off maybe 5 minutes later. I was on a roll and was glad I was getting stuff done quickly.
I was getting hungry but had to wait until after the first half of my research echo. Dan and I went down stairs to get my holter monitor which I again got done very quickly. While I was getting it the girl asked if I had certain things done before she put it on and I was saying yes. She then asked if I was going to try to get my stress test done today instead of tomorrow and I said no I see the doctor in the morning and I am still trying to get out of it. LOL! I can't have this holter on when I do the stress test.
I then had 90 minutes to kill before i could get my pulmonary function monitor. Because I was getting hungry I decided we would see if I could get the first half of my research echo done. First they couldn't find my name in the research stuff so the receptionist paged the doctors in the back who came out and talked to me to see why i was trying to do it early. When i explained I was getting hungry and was done with just about everything the lady told me she would she was she could do. When she came back out she asked me to come back as soon as I got my pulm. func. monitor and they would start then.
It was 930-945 at this point so Dan and I went upstairs to wait to get my monitor. The "class" i went into had 3 older men. I swear they made me stupid with there dumb questions. I felt like my brain cells were dying. My questions was logical. I asked what time i needed to bring it back so that it could be read before I saw the doctor because they were saying return it by 9 and my appt is at 915. I wanted to make sure that I could still just put it in the drop box or if i had to let someone know so that it could be read right away. These men couldn't figure out how to put it on there finger correctly even though she showed us. She told us to leave them in the cover and they asked if they could take it out.. then this one guy wanted to know how to get the results because he had nothing on his schedule for tomorrow and the lady said well you need to discuss that with your doctor, he will either call you or write to you and the guy was like okay I see him tomorrow afternoon.. I just wanted to die laughing.
Now it was time for all my echos which was def. the longest part of the day. The guy doing my research echo was Japanese, and has only been in the US for 8 months. HE was very funny and reminded me of Ando from Heroes. The only English he knew was what was written on a cheat sheet which I thought was kind of funny. He was going to use 2 machines that take slightly different pictures, but once we started someone came in to get one of the machines because it had an appt to be upgraded. The Dr was very confused I kind of felt bad for him but they gave him time to take the pictures he needed so it all worked out. There are times when I have to hold my breath or bare down to adjust the pictures. He would practically yell "hold it hold it hold it" or "keep pushing keep pushing keep pushing". It was so funny. I then got to eat and while they asked me to eat all of it I couldn't and wouldn't have because it had a hard boiled egg (EWW). It also had 2 chicken breast pieces, 2 rolls, sliced American cheese and some lettuce. So I made 2 sandwiches and ate most of it. There was also orange juice which I really don't like. I was so thirsty so I chugged it at first and then remembered w/ the after taste why i don't like it. I was still thirsty so I went to drink more but I was not thirsty enough so I had to stop because I just couldn't handle the EWWness. My chest hurt which is always does when I eat so that kinda sucked. But then they did the 2nd half of the echo. I pretty much dozed threw as much as I could because I was so tired. That whole process took about 2 hours.
When I was done w/ that I went back to the desk and checked in for my clinical echo. I waited for about 15 minutes which wasn't bad. I was actually called back at my appt. time. They did it in 2 parts, first she took pictures looking threw my mitral valve to look at the pressure and the time it takes to open and close. She sent that to another computer so that it could be read because it needs to be read on a different computer then the other (i think that's what she was saying). When she first went to send it though it didn't want to work so she had to go restart the computer in the back and try sending it again. Once it was sent they did the rest of the echo which again I dozed threw. It was cool though because you have to lay on your left side and they have the machines on your right, so they hooked up monitors on the left side so you could watch. The only part that sucked was that my baring down didn't give them a particular picture so I had to breathe in something called AMYL NITRATE. They warned me it smelled bad and could give you a headache. It makes it so that your heart speeds up as if you were jogging while you are laying down. It was awful. With the chest pain and headaches I have already been fighting this just made it so much worse. But once I was done with that I was done for the day.
I went straight back to the hotel and took a nap. It was great. I have been so tired all day, like I am every day but had not been able to sleep. I am so glad they were able to move up the research echo so that i could eat and sleep.
Dan and I went to Applebees for dinner which was nice because I was able to eat whatever I want. Tomorrow I can eat breakfast but I can not eat for the last 2 hours before the death ...i mean stress test. Its kind of scary because while I want to be okay, I kind of want there to be a small problems so that the doctors would move faster with there actions.
Anyways, it is about time for bed again. I hope that wasn't too much rambling for you all.
More tomorrow when know something. I will also post a few pictures of the sunrise from the 18th floor of the hospital. I also plan on taking some more of the amazing buildings.
Today went fairly well. Because I had sent in all my admin paper work I was able to start off with my tests and didn't have to go deal with all the paper work. So my first appointment was at 720 and was for blood work. We walked threw the "subway" which was like the bottom floor of the hospitals. It was nice because we never had to go outside where it was maybe 3degrees.
Anyways, we walk up to the line and there are like 10 people in front of me. Dan and I thought the wait would be long but it wasn't even 5 minutes before I got checked in and sent threw the purple doors into the waiting room. The waiting room itself had at least 20 people and again it took me 5-8 minutes of waiting. They had soo many people taking blood.
Because we were done so early before my next appointment I thought I could go get my pulmonary function monitor early. They told me that I had to wait until my appointment time because it was a class like setting where they told you how it works.
So we went back down stairs and went to get my EKG done. We were again very early but I went ahead and checked in and was taken back in about 10-15 minutes. They had a bunch of changing rooms w/ a lock and key so you can lock up your stuff when you are getting the EKG done which i thought was really nice. They also had a bunch of EKG rooms so it went quickly. This office is where I was also supposed to get my holter monitor but I had to go get my chest x-ray first. When I checked in for my x-ray they gave me a pager which went off maybe 5 minutes later. I was on a roll and was glad I was getting stuff done quickly.
I was getting hungry but had to wait until after the first half of my research echo. Dan and I went down stairs to get my holter monitor which I again got done very quickly. While I was getting it the girl asked if I had certain things done before she put it on and I was saying yes. She then asked if I was going to try to get my stress test done today instead of tomorrow and I said no I see the doctor in the morning and I am still trying to get out of it. LOL! I can't have this holter on when I do the stress test.
I then had 90 minutes to kill before i could get my pulmonary function monitor. Because I was getting hungry I decided we would see if I could get the first half of my research echo done. First they couldn't find my name in the research stuff so the receptionist paged the doctors in the back who came out and talked to me to see why i was trying to do it early. When i explained I was getting hungry and was done with just about everything the lady told me she would she was she could do. When she came back out she asked me to come back as soon as I got my pulm. func. monitor and they would start then.
It was 930-945 at this point so Dan and I went upstairs to wait to get my monitor. The "class" i went into had 3 older men. I swear they made me stupid with there dumb questions. I felt like my brain cells were dying. My questions was logical. I asked what time i needed to bring it back so that it could be read before I saw the doctor because they were saying return it by 9 and my appt is at 915. I wanted to make sure that I could still just put it in the drop box or if i had to let someone know so that it could be read right away. These men couldn't figure out how to put it on there finger correctly even though she showed us. She told us to leave them in the cover and they asked if they could take it out.. then this one guy wanted to know how to get the results because he had nothing on his schedule for tomorrow and the lady said well you need to discuss that with your doctor, he will either call you or write to you and the guy was like okay I see him tomorrow afternoon.. I just wanted to die laughing.
Now it was time for all my echos which was def. the longest part of the day. The guy doing my research echo was Japanese, and has only been in the US for 8 months. HE was very funny and reminded me of Ando from Heroes. The only English he knew was what was written on a cheat sheet which I thought was kind of funny. He was going to use 2 machines that take slightly different pictures, but once we started someone came in to get one of the machines because it had an appt to be upgraded. The Dr was very confused I kind of felt bad for him but they gave him time to take the pictures he needed so it all worked out. There are times when I have to hold my breath or bare down to adjust the pictures. He would practically yell "hold it hold it hold it" or "keep pushing keep pushing keep pushing". It was so funny. I then got to eat and while they asked me to eat all of it I couldn't and wouldn't have because it had a hard boiled egg (EWW). It also had 2 chicken breast pieces, 2 rolls, sliced American cheese and some lettuce. So I made 2 sandwiches and ate most of it. There was also orange juice which I really don't like. I was so thirsty so I chugged it at first and then remembered w/ the after taste why i don't like it. I was still thirsty so I went to drink more but I was not thirsty enough so I had to stop because I just couldn't handle the EWWness. My chest hurt which is always does when I eat so that kinda sucked. But then they did the 2nd half of the echo. I pretty much dozed threw as much as I could because I was so tired. That whole process took about 2 hours.
When I was done w/ that I went back to the desk and checked in for my clinical echo. I waited for about 15 minutes which wasn't bad. I was actually called back at my appt. time. They did it in 2 parts, first she took pictures looking threw my mitral valve to look at the pressure and the time it takes to open and close. She sent that to another computer so that it could be read because it needs to be read on a different computer then the other (i think that's what she was saying). When she first went to send it though it didn't want to work so she had to go restart the computer in the back and try sending it again. Once it was sent they did the rest of the echo which again I dozed threw. It was cool though because you have to lay on your left side and they have the machines on your right, so they hooked up monitors on the left side so you could watch. The only part that sucked was that my baring down didn't give them a particular picture so I had to breathe in something called AMYL NITRATE. They warned me it smelled bad and could give you a headache. It makes it so that your heart speeds up as if you were jogging while you are laying down. It was awful. With the chest pain and headaches I have already been fighting this just made it so much worse. But once I was done with that I was done for the day.
I went straight back to the hotel and took a nap. It was great. I have been so tired all day, like I am every day but had not been able to sleep. I am so glad they were able to move up the research echo so that i could eat and sleep.
Dan and I went to Applebees for dinner which was nice because I was able to eat whatever I want. Tomorrow I can eat breakfast but I can not eat for the last 2 hours before the death ...i mean stress test. Its kind of scary because while I want to be okay, I kind of want there to be a small problems so that the doctors would move faster with there actions.
Anyways, it is about time for bed again. I hope that wasn't too much rambling for you all.
More tomorrow when know something. I will also post a few pictures of the sunrise from the 18th floor of the hospital. I also plan on taking some more of the amazing buildings.
Quickie
Hey everyone! We made it last night safe and sound. I can't do a long update because I have to finish getting my shit together.... Its time to start all my tests.. :-/ eek!
Wish me luck and pray hard!
Ill update when the day is over
Wish me luck and pray hard!
Ill update when the day is over
Dec 7, 2008
Picture Update
Yesterday when we arrived it was snowing...
It continued to snow until sometime into the night. We enjoyed some time playing Wii fit (though I just watched which was just as entertaining).
Jean practiced her hula hoop
While Gordon was more into trying to box
Then Dan decided he would just run for a while
For a while Jean hung out with Mark and then played with Chip
Maggie decided she liked Chips bed
But that could have been because it was in front of the new wood burning stove...
Today was a beautiful day, so i went out to take some pictures of the snow covered scenery.
And piece of the lake that had frozen over
As the day went on family arrived and some of them tried out the Wii Fit also.
We had a wonderful turkey dinner, but it put some of the men to sleep...
Of course once i sat down and got comfortable I learned that Gordon was asleep in his room also :(
It was almost time for desert but first Jean needed to show her Mom a video clip and Little Daniel was so excited to watch
Finally it to celebrate my birthday :)
But you could choose from multiple deserts. There was Chocolate cake w/ chocolate frosting, spice cake, pumpkin pie and apple pie. (rocky road ice cream [YEAHH!!!] and also french vanilla)
The past two days have been a lot of fun. The snow is beautiful though Chip hates it. Not only did he run into the door last night trying to get into the house but Dan told me that when he took Chip out this morning Chip jumped off the step and sunk into the snow up to his head. Sadly, my camera and I missed that moment.
I hope everyone enjoys my picture update. For all the pictures taken you can go HERE.
Dan and I are thinking of leaving Monday (tomorrow) afternoon due to the weather, but we will check the weather again tomorrow. We don't want to get to the hospital too early because there is not much to do.
Thank you everyone for the prayers. I am looking forward to possible getting an answer in a few days! I can't wait until I feel better and have enough energy to get threw an entire day without needing a nap or going to bed early.
Good Night!!!
Dec 6, 2008
And the trip begins...
Hey everyone. Here I am blogging from Momma Jean's kitchen!
We left yesterday about 2:30pm. Dan drove for about an hour before the sun flashing threw the trees exhausted him. He asked me if I could drive. Now i was already exhausted an had really just started dozing. I said yes and drove for about an hour while Dan napped. I was so exhausted that I just couldn't drive anymore. Dan still wasn't ready to drive so we pulled into a parking lot and took a nap. When he woke up and was ready to drive the sun had gone down enough that it wasn't bother some anymore. He then decided that since he wasn't tired he would just continue to drive. He did stop twice to nap for about an hour and a half or two and then would continue to drive. We arrived at Jean and Marks house at 8:30 this morning. (mileage wise it should be about 12 hours.) Around 930 I went to bed and then got up again about 230. I feel so much better that i got some sleep but I am still really tired.
Tomorrow we will be having another Thanksgiving with Jean, Mark, Gordon, Gma and Gpa Nusbaum, Amy, Jim and the kids and Callie and Mark. Should be fun. I am excited because there is pumpkin pie!! YEAH!!!
Chip does not like the snow. It is hilarious! We were on the deck and made him go out into the snow to pee. When we let him onto the porch he tried to run into the house and ran into the sliding glass door. It was HILARIOUS! He is fine and still is.
I will post pictures of the snow later when I have my laptop out and can get the pictures off of the memory card.
Its almost time for cottage cheese patties for dinner. .yummm food!
We left yesterday about 2:30pm. Dan drove for about an hour before the sun flashing threw the trees exhausted him. He asked me if I could drive. Now i was already exhausted an had really just started dozing. I said yes and drove for about an hour while Dan napped. I was so exhausted that I just couldn't drive anymore. Dan still wasn't ready to drive so we pulled into a parking lot and took a nap. When he woke up and was ready to drive the sun had gone down enough that it wasn't bother some anymore. He then decided that since he wasn't tired he would just continue to drive. He did stop twice to nap for about an hour and a half or two and then would continue to drive. We arrived at Jean and Marks house at 8:30 this morning. (mileage wise it should be about 12 hours.) Around 930 I went to bed and then got up again about 230. I feel so much better that i got some sleep but I am still really tired.
Tomorrow we will be having another Thanksgiving with Jean, Mark, Gordon, Gma and Gpa Nusbaum, Amy, Jim and the kids and Callie and Mark. Should be fun. I am excited because there is pumpkin pie!! YEAH!!!
Chip does not like the snow. It is hilarious! We were on the deck and made him go out into the snow to pee. When we let him onto the porch he tried to run into the house and ran into the sliding glass door. It was HILARIOUS! He is fine and still is.
I will post pictures of the snow later when I have my laptop out and can get the pictures off of the memory card.
Its almost time for cottage cheese patties for dinner. .yummm food!
Dec 4, 2008
Urinary Depression
OkeyDokey people... I am allergic to morphine and sadly 95% of narcotics are based on morphine.. Wow does that suck!
When I was at Portsmouth Naval Medical Center last month (where I had my heart catheter)and I was taking the dilaudid every couple of hours I got to a point where I could no urinate. I was able to go at first then it got harder to go and then I wasnt able to go anymore. After about 20 hours of not urinating the docs/nurses finally became concerned and gave into my begging for a urinary catheter. However when I asked if it could be because of the medication they all said no.
This morning when I got up and went to pee like I do every morning I was unable to go with out a lot of effort. Because i had just started the morphine yesterday I figured I should bring it to the doctors attention. Everyone was quite shocked as they had never heard of someone having this problem before. Dr. Browder looked up the effects and say that urinary depression was a side effect and I needed to go off it ASAP. He told me that if I get to a point where I need to urinate and can not go to go to the closest ER and have my bladder catheterized so that it doesn't explode.
Then came the part where he had to decide what he could put me on. There is a pain patch that is fentynal but it takes 24-28 hours to start working and if i had a reaction to it and had to stop it would have taken up to 24 hours to get out of my system. Given that we are leaving tomorrow that would not work. We discussed Vicadin but in the end he decided to put me on methadone. Methadone is best known for weening heroin addicts off of heroin, but is also used for pain. It is a twice a day medication just like the morphine pills were. The only condition I had to agree to with taking it is to wait until I was able to pee normally again to make sure that if I have the same reaction we know it is from the methadone and not lagging from the morphine.
This whole thing has been soo fun and I am almost out of options so lets hope this works!!
So I packed my clothes so that we can leave tomorrow! I am such an over packer but there are things I needed to take and then I took some extra "comfort" clothes. Things that are an emotional comfort to help get me through all of this.
Tomorrow we will leave when Dan gets off work. He told me earlier that Chief was going to try to let him go early. Originally we were going to stop at my dads tomorrow but Dan wanted to drive a little further. Then we learned that Dan's grandma isnt doing well and is in a hospital in Pittsburgh because of a couple mild strokes that she had and her doctors wanting to put stents in her head. Therefore we have decided that we are going to stop in Pittsburhg tomorrow and see Grandma Bigelow saturday morning. From there we will go to Jean and Marks and will stay there until Monday. Monday we will get back on the road for a few hours and then finish the drive on Tuesday. We will be in Rochester Tuesday, Wednesday and Thursday night leaving on Friday morning to drive home (if they send me home). We will definitly be stopping at Jean and Marks as we will be leaving Chip there while we are gone. If Grandma B is still in the hospital we may stop there again on our way home. Our expected arrive home day is..... MY BIRTHDAY!! wahoo!!
That is all for tonight, remember if it doesnt make sense I am drugged up and can't help it!
When I was at Portsmouth Naval Medical Center last month (where I had my heart catheter)and I was taking the dilaudid every couple of hours I got to a point where I could no urinate. I was able to go at first then it got harder to go and then I wasnt able to go anymore. After about 20 hours of not urinating the docs/nurses finally became concerned and gave into my begging for a urinary catheter. However when I asked if it could be because of the medication they all said no.
This morning when I got up and went to pee like I do every morning I was unable to go with out a lot of effort. Because i had just started the morphine yesterday I figured I should bring it to the doctors attention. Everyone was quite shocked as they had never heard of someone having this problem before. Dr. Browder looked up the effects and say that urinary depression was a side effect and I needed to go off it ASAP. He told me that if I get to a point where I need to urinate and can not go to go to the closest ER and have my bladder catheterized so that it doesn't explode.
Then came the part where he had to decide what he could put me on. There is a pain patch that is fentynal but it takes 24-28 hours to start working and if i had a reaction to it and had to stop it would have taken up to 24 hours to get out of my system. Given that we are leaving tomorrow that would not work. We discussed Vicadin but in the end he decided to put me on methadone. Methadone is best known for weening heroin addicts off of heroin, but is also used for pain. It is a twice a day medication just like the morphine pills were. The only condition I had to agree to with taking it is to wait until I was able to pee normally again to make sure that if I have the same reaction we know it is from the methadone and not lagging from the morphine.
This whole thing has been soo fun and I am almost out of options so lets hope this works!!
So I packed my clothes so that we can leave tomorrow! I am such an over packer but there are things I needed to take and then I took some extra "comfort" clothes. Things that are an emotional comfort to help get me through all of this.
Tomorrow we will leave when Dan gets off work. He told me earlier that Chief was going to try to let him go early. Originally we were going to stop at my dads tomorrow but Dan wanted to drive a little further. Then we learned that Dan's grandma isnt doing well and is in a hospital in Pittsburgh because of a couple mild strokes that she had and her doctors wanting to put stents in her head. Therefore we have decided that we are going to stop in Pittsburhg tomorrow and see Grandma Bigelow saturday morning. From there we will go to Jean and Marks and will stay there until Monday. Monday we will get back on the road for a few hours and then finish the drive on Tuesday. We will be in Rochester Tuesday, Wednesday and Thursday night leaving on Friday morning to drive home (if they send me home). We will definitly be stopping at Jean and Marks as we will be leaving Chip there while we are gone. If Grandma B is still in the hospital we may stop there again on our way home. Our expected arrive home day is..... MY BIRTHDAY!! wahoo!!
That is all for tonight, remember if it doesnt make sense I am drugged up and can't help it!
Dec 3, 2008
Thanksgiving Weekend Update
Yeah! I am finally "getting off my butt" and writing!
The past week or so has been...interesting to say the least. I am still working part time which stinks because it takes so much energy that I really don't have to spare but I am almost done!!
Last week Dan and I went to my moms. I was so excited that we got to go because I miss my mom so much. This whole being sick thing with my mom not being around physically has been incredibly difficult. While we were at my moms my chest started to hurt worse. At first I thought it was just all the craziness that was wearing me down. I took a nap every day just so that I could function. The whole weekend was fun, but very overwhelming. Dan and I arrived Wednesday at 12:30 in the morning. Tim, Beth, Kate, Megan, Erin, Tyler, Grandma and Grandpa arrived around 5-5:30 on Thanksgiving day.
See, they drive to North Carolina first to visit with my Aunt Toots and then my grandparents have a thanksgiving lunch with her and then they come to my moms. Lars, Connie and the kids were supposed to come also but Connie was sick so they didn't. It was really scary because when Tim, Beth and everyone else arrived Erin was saying she didn't feel good. Since they had been around Connie, who was sick,I got really nervous. It ended up that she was just having a reaction to a couple bee stings, benadryl and riding in the car and after having laid down for a little while she was much better.
On Friday we all went to see Four Christmases. It was cute but not as funny as most of us were expecting. I was very proud of my grandpa because I think he was actually awake through the whole movie! Of course grandma fell asleep during the previews but she did wake up after a while.
Then we have Saturday...By Saturday I really wasn't feel good. When I ate that morning my heart hurt so bad but it went away fairly quickly. That afternoon my mom, Dan and I were headed off to go see Twilight so my mom could see it since Dan and I had already seen it. We got to about a mile from the theater when I said "I hate to do this, but I think I need to go to the hospital". I had eaten again and my heart was now burning. You have to know that all I ate was some banana bread!! So i should not have been hurting like that. Anyways we went to the hospital and got treated by some really sucky people. They gave me some pain killers and some anti nausea medicine..and then left. My blood pressure dropped and the machines kept beeping and no one came in!! Once when my mom went to get a nurse she was shoe shopping online! Another nurse was just getting rude it stunk! But after about 5 hours in the hospital they sent me home and while i still felt bad i did feel a little better.
On sunday we drove home. Dan drove most of it because I was way to out of it to drive. I did drive for a while but sitting up was very difficult, it made it very hard to breath and was very uncomfortable.
Monday I spent all day trying to get a hold of doctors but didn't get any of them to call me back until Tuesday. After talking with them it was decided that i have built a tolerance to the pain killers I am on and that is why I was having pain even when I was taking them.
This morning I ate a cookie and started having that burning and nauseousness again. I had to get Dan to come pick me up at work and take me to the hospital to get my new pills... So now here I am finishing this blog, I just took the pill and now it is time for a nap!
Hope everyone has a great day!!!!
(LESS THEN A WEEK!!!)
Oh yea, before i forget. One of the doctors from Mayo called on Monday, they want me to be part of a research study they are working on. I guess 1/3 of HOCM patients experience cardiac symptoms when they eat (which I have been dealing with for a long time). So when I go to the doctor next week they are going to do a couple extra echocardiograms. One echo will be with me fasting for I think he said 4 hours, then I will do my clinical echo across the hall.. then they will feed me and do another research echo. They will be measuring how food effects me.. Sounds like fun!!!
Now I am done. NAP TIME
The past week or so has been...interesting to say the least. I am still working part time which stinks because it takes so much energy that I really don't have to spare but I am almost done!!
Last week Dan and I went to my moms. I was so excited that we got to go because I miss my mom so much. This whole being sick thing with my mom not being around physically has been incredibly difficult. While we were at my moms my chest started to hurt worse. At first I thought it was just all the craziness that was wearing me down. I took a nap every day just so that I could function. The whole weekend was fun, but very overwhelming. Dan and I arrived Wednesday at 12:30 in the morning. Tim, Beth, Kate, Megan, Erin, Tyler, Grandma and Grandpa arrived around 5-5:30 on Thanksgiving day.
See, they drive to North Carolina first to visit with my Aunt Toots and then my grandparents have a thanksgiving lunch with her and then they come to my moms. Lars, Connie and the kids were supposed to come also but Connie was sick so they didn't. It was really scary because when Tim, Beth and everyone else arrived Erin was saying she didn't feel good. Since they had been around Connie, who was sick,I got really nervous. It ended up that she was just having a reaction to a couple bee stings, benadryl and riding in the car and after having laid down for a little while she was much better.
On Friday we all went to see Four Christmases. It was cute but not as funny as most of us were expecting. I was very proud of my grandpa because I think he was actually awake through the whole movie! Of course grandma fell asleep during the previews but she did wake up after a while.
Then we have Saturday...By Saturday I really wasn't feel good. When I ate that morning my heart hurt so bad but it went away fairly quickly. That afternoon my mom, Dan and I were headed off to go see Twilight so my mom could see it since Dan and I had already seen it. We got to about a mile from the theater when I said "I hate to do this, but I think I need to go to the hospital". I had eaten again and my heart was now burning. You have to know that all I ate was some banana bread!! So i should not have been hurting like that. Anyways we went to the hospital and got treated by some really sucky people. They gave me some pain killers and some anti nausea medicine..and then left. My blood pressure dropped and the machines kept beeping and no one came in!! Once when my mom went to get a nurse she was shoe shopping online! Another nurse was just getting rude it stunk! But after about 5 hours in the hospital they sent me home and while i still felt bad i did feel a little better.
On sunday we drove home. Dan drove most of it because I was way to out of it to drive. I did drive for a while but sitting up was very difficult, it made it very hard to breath and was very uncomfortable.
Monday I spent all day trying to get a hold of doctors but didn't get any of them to call me back until Tuesday. After talking with them it was decided that i have built a tolerance to the pain killers I am on and that is why I was having pain even when I was taking them.
This morning I ate a cookie and started having that burning and nauseousness again. I had to get Dan to come pick me up at work and take me to the hospital to get my new pills... So now here I am finishing this blog, I just took the pill and now it is time for a nap!
Hope everyone has a great day!!!!
(LESS THEN A WEEK!!!)
Oh yea, before i forget. One of the doctors from Mayo called on Monday, they want me to be part of a research study they are working on. I guess 1/3 of HOCM patients experience cardiac symptoms when they eat (which I have been dealing with for a long time). So when I go to the doctor next week they are going to do a couple extra echocardiograms. One echo will be with me fasting for I think he said 4 hours, then I will do my clinical echo across the hall.. then they will feed me and do another research echo. They will be measuring how food effects me.. Sounds like fun!!!
Now I am done. NAP TIME
Nov 22, 2008
New Camera
I got the new camera I wanted.. WAHOO!!!! Happy Birthday to me...3 weeks and 2 days early!!! :)
Here is the first picture ever taken with the camera.. CUTE HUSBAND!!
Here is the first taken of me :)
And a picture of Chip!
Here is the first picture ever taken with the camera.. CUTE HUSBAND!!
Here is the first taken of me :)
And a picture of Chip!
Nov 21, 2008
June 8th 2001
Here is a link to the story I wrote in high school (my senior year) about the beginning of all my heart troubles. It is a great story for all of those who have not read it. Enjoy!!
STORY
STORY
explanation
So a friend of mine asked about my heart and this is what I wrote..so for those of you who don't really know this is it.. PLUS part of it is from when I spoke with the doctor the other day.
As for my heart... I have a heart disease called hypertrophic cardiomyopathy. It causes a lot of sudden death in athletes because it is not easily detected unless they are looking for it. My father had it so they just watched for it in me and I was diagnosed when I was 7. When my family moved to Kentucky is when i really started having problems. They put in a defibrillator and put me on medication. The disease causes the muscle between the ventricles to be enlarged. In my heart not only is the muscle between the ventricles large but the muscle all the way around my left ventricle is big. On top of that the muscle grew over one of the main arteries causing it to close when my heart beats. They put in a stent a couple of years ago but it isnt holding the artery open enough.
Right after my 17th birthday I was supposed to have surgery to remove some of the muscle to make it smaller but also release the artery. They canceled the surgery the night before because the surgeon didnt feel comfortable doing the surgery and at the time they thought the risks out weighed the benefits. Every time I move I see a different doctor and they tell me I need surgery but again they didnt think that the risks were worth it so instead they just played with my medications. One doctor talked about doing an alcohol ablation which is where they put alcohol into my heart and cause a heart attack which would kill off some of the muscle. I have been completely against that since the beginning, it scares me more then anything because I would have to be awake during it. So over time i started getting pain in my chest/shoulder/arm as if I was having a heart attack whenever I walked more then a few steps, now I have the pain constantly. The cardiologists I see do not do this kind of surgery, it is much more then they can handle at the hospitals here so they are sending me to the best specialist in my disease at the best cardiac clinic in the country.
The other day I was asking my cardiologist what he thought my options were and he said that he wasnt sure. He can find no documentation of them doing the surgery to remove the muscle in my circumstances. Usually the surgery is to remove muscle because it is causing problems with the valve and blood starts flowing backwards, in my case I am having pain because the muscle isnt getting enough blood. He said that they may try to remove the muscle and see if it helps however depending on the shape of my heart from the outside it can cause more problems. When I asked him what the chances were of me having a transplant he said it was likely because of the above. He told me that they may put me on the list and do the other surgery basically as more of an experimental surgery. If it works they would take me off the list, but if not then my name would be working its way up.
When I was 16 they told me by the time I was 25 I would need a transplant, but I tried so hard to believe that it wasnt true. My father had a transplant a few years ago, but not just because of the disease. He got a cold that never went away and became congestive heart failure that he was more susceptible to because of the disease.
I really hope that makes some sense! I know its a lot.
As for my heart... I have a heart disease called hypertrophic cardiomyopathy. It causes a lot of sudden death in athletes because it is not easily detected unless they are looking for it. My father had it so they just watched for it in me and I was diagnosed when I was 7. When my family moved to Kentucky is when i really started having problems. They put in a defibrillator and put me on medication. The disease causes the muscle between the ventricles to be enlarged. In my heart not only is the muscle between the ventricles large but the muscle all the way around my left ventricle is big. On top of that the muscle grew over one of the main arteries causing it to close when my heart beats. They put in a stent a couple of years ago but it isnt holding the artery open enough.
Right after my 17th birthday I was supposed to have surgery to remove some of the muscle to make it smaller but also release the artery. They canceled the surgery the night before because the surgeon didnt feel comfortable doing the surgery and at the time they thought the risks out weighed the benefits. Every time I move I see a different doctor and they tell me I need surgery but again they didnt think that the risks were worth it so instead they just played with my medications. One doctor talked about doing an alcohol ablation which is where they put alcohol into my heart and cause a heart attack which would kill off some of the muscle. I have been completely against that since the beginning, it scares me more then anything because I would have to be awake during it. So over time i started getting pain in my chest/shoulder/arm as if I was having a heart attack whenever I walked more then a few steps, now I have the pain constantly. The cardiologists I see do not do this kind of surgery, it is much more then they can handle at the hospitals here so they are sending me to the best specialist in my disease at the best cardiac clinic in the country.
The other day I was asking my cardiologist what he thought my options were and he said that he wasnt sure. He can find no documentation of them doing the surgery to remove the muscle in my circumstances. Usually the surgery is to remove muscle because it is causing problems with the valve and blood starts flowing backwards, in my case I am having pain because the muscle isnt getting enough blood. He said that they may try to remove the muscle and see if it helps however depending on the shape of my heart from the outside it can cause more problems. When I asked him what the chances were of me having a transplant he said it was likely because of the above. He told me that they may put me on the list and do the other surgery basically as more of an experimental surgery. If it works they would take me off the list, but if not then my name would be working its way up.
When I was 16 they told me by the time I was 25 I would need a transplant, but I tried so hard to believe that it wasnt true. My father had a transplant a few years ago, but not just because of the disease. He got a cold that never went away and became congestive heart failure that he was more susceptible to because of the disease.
I really hope that makes some sense! I know its a lot.
Nov 18, 2008
Dr. A to John Hopkins F* U
Today I went to have my EKG done to make sure that the new medication wasn't changing my heart rate too much. Dr Adinaro told me last week to come in this week to have it done just for precautionary reasons. I have only been taking the medication in the morning but because it hasn't caused any shaking I am going to start taking it at night also. When I had the EKG done they took it to Dr. Adinaro and then I went to talk to him. He told me that John Hopkins called and he told them that I was going to go to the Mayo Clinic. I guess the doctor, that I was supposed to see, called about appointments that they opened up the first week of December. Dr Adinaro I guess told him that he would talk to me, but since I have already started the paperwork and stuff for Mayo Clinic we will just keep my appointment the way it is. Dr Adinaro said Ill just tell them to fuck off or fuck you. I about died laughing. He told me that he would send me to Mayo Clinic if he had the choice so while I still think JH would be more convenient, Mayo is the better choice for many reasons.
Admissions from Langley called today also about my TDY (temporary duty) paperwork. Since we have no specifics when it comes to whats going to happen and how long we are going to be there they are going to wait to do the papers until we get back. Then she will back date from the day we left until they day we get back. With these papers and all of our receipts (for gas, food, parking, hotel, etc) we will get reimbursed. They can not put Dan's name on the papers because he is Active Duty Coast Guard. So Dan has to talk to his Chief and Sir to have them file for him to go TAD (which they said they would do, just to let them know). Once all that is taken care of we can put all charged on his military credit card so that we don't have to spend any of our money. Then once we get back and get reimbursed we can pay off that credit card and we wont have to worry about adding debt to any of our personal cards.
It is all so confusing and complicated but it is coming together and is almost done.
3 weeks until my testing starts!!!!
Admissions from Langley called today also about my TDY (temporary duty) paperwork. Since we have no specifics when it comes to whats going to happen and how long we are going to be there they are going to wait to do the papers until we get back. Then she will back date from the day we left until they day we get back. With these papers and all of our receipts (for gas, food, parking, hotel, etc) we will get reimbursed. They can not put Dan's name on the papers because he is Active Duty Coast Guard. So Dan has to talk to his Chief and Sir to have them file for him to go TAD (which they said they would do, just to let them know). Once all that is taken care of we can put all charged on his military credit card so that we don't have to spend any of our money. Then once we get back and get reimbursed we can pay off that credit card and we wont have to worry about adding debt to any of our personal cards.
It is all so confusing and complicated but it is coming together and is almost done.
3 weeks until my testing starts!!!!
Nov 14, 2008
Mayo Schedule.
So I got a package from Mayo in the mail with my appointment schedule.
It is as follows :
December 10th, 2008
7:20am : Blood Tests
8:40am : EKG
9:15am : Chest X-Ray
10:30am:MRI canceled due to defibrillator/pacemaker
pick up oximeter for overnight Pulmonary Function Test
1:50am : Echo
December 11th, 2008
9:15am : Consult with Dr. Ommen
1:00pm : Stress test :(
2:00pm : Holter monitor (return -- pick up afterMRI chest x-ray)
While most of this schedule does not bother me the stress test terrifies me! I haven't had the best of luck with them before so I am very scared of doing another one. The rest of this is simple! I have had all of these tests many MANY times before.
25 days!
It is as follows :
December 10th, 2008
7:20am : Blood Tests
8:40am : EKG
9:15am : Chest X-Ray
10:30am:
pick up oximeter for overnight Pulmonary Function Test
1:50am : Echo
December 11th, 2008
9:15am : Consult with Dr. Ommen
1:00pm : Stress test :(
2:00pm : Holter monitor (return -- pick up after
While most of this schedule does not bother me the stress test terrifies me! I haven't had the best of luck with them before so I am very scared of doing another one. The rest of this is simple! I have had all of these tests many MANY times before.
25 days!
Nov 12, 2008
Flu Shot
So when Dr. Adinaro called me on monday is was just to see how I was doing, but this morning it was actually in response to my call...
The immunization clinic is not giving the flu shot to dependants right now unless you have a prescription, so Dr. Adinaro is giving me one :). I am also going to get a tetanus shot because I don't remember my last one, I just remember it was a long time ago. If they wont give it to me Dr. Adinaro just said to stop by his office and he will do a script for that too. Yeah! shots!!
We also discussed trying the ranolizine again now that I have gotten some sleep. Instead of taking it 2 times a day though I will just take it in the morning. I dont mind being a little shakey during the day I just cant do it at night when I need to sleep.
I am very thankful for having such a helpful doctor. Hopefully the specialist makes me feel this comfortable!
27 days!!
The immunization clinic is not giving the flu shot to dependants right now unless you have a prescription, so Dr. Adinaro is giving me one :). I am also going to get a tetanus shot because I don't remember my last one, I just remember it was a long time ago. If they wont give it to me Dr. Adinaro just said to stop by his office and he will do a script for that too. Yeah! shots!!
We also discussed trying the ranolizine again now that I have gotten some sleep. Instead of taking it 2 times a day though I will just take it in the morning. I dont mind being a little shakey during the day I just cant do it at night when I need to sleep.
I am very thankful for having such a helpful doctor. Hopefully the specialist makes me feel this comfortable!
27 days!!
Nov 11, 2008
So this weekend was kinda sucky. I had started taking the new medication, but I was shaking so much that I couldnt sleep. We arent sure if it was the medication or just that I was so tired from barely sleeping before I started taking it. But I was also barely eating.. (still am barely eating) I am just not hungry which kinda sucks because I love food.
Yesterday after talking with the doctor we decided that I should take ambien to help me sleep. Boy did it help! I woke up once in the middle of the night and that is like amazing. On top of that i fell asleep pretty quickly!
Yesterday I also went back to work. i am going to work part time so that while we are in Mn we are able to pay some bills.
Thanks for the prayers
I will update more later :)
Yesterday after talking with the doctor we decided that I should take ambien to help me sleep. Boy did it help! I woke up once in the middle of the night and that is like amazing. On top of that i fell asleep pretty quickly!
Yesterday I also went back to work. i am going to work part time so that while we are in Mn we are able to pay some bills.
Thanks for the prayers
I will update more later :)
Nov 6, 2008
Grey's Anatomy
I don't know about any of you but I love Grey's Anatomy, but tonights episode is like a high speed chase on KTLA (news channel in Southern California). I want so badly to not watch it but I just can not turn it off.
With in the first 5 minutes they said that the guy had my disease. Then they give him an alcohol ablation. If I wasn't already terrified of the procedure I definitely am now!
ok i feel better but it could need to vent more in a bit....
once I stop shaking and catch my breath!
With in the first 5 minutes they said that the guy had my disease. Then they give him an alcohol ablation. If I wasn't already terrified of the procedure I definitely am now!
ok i feel better but it could need to vent more in a bit....
once I stop shaking and catch my breath!
Nov 5, 2008
Mayo Clinic
So Dr. Adinaro talked to a doctor at the Mayo Clinic and I have an appointment on DECEMBER 8th!!!! How great is that! Sooo much better then February!. It does suck because it is further away and hard for family/friends to visit if I have surgery!! Plus it makes the situation with our dog more difficult but we will figure out something. The doctor agrees with putting me on this new medication and had mentioned another one but I have tried it before and would prefer not to go back on it. I am soo relieved that this pain may be over soon.
YEAH!
YEAH!
Hmm..
Ok so firstly I would like to say I am completely bummed by the outcome of the election yesterday..
Now that is over...
I went to see Dr. Adinaro this morning. I will be starting my new medication today and going back next week for a EKG follow up to make sure the medication doesnt effect my heart rate in a bad way. He is going to contact the Mayo Clinic to see if they can get me in faster. He said he doubts it will take longer then a month for me to get in there. He has previous experience with them and while he does think Johns Hopkins is great he is more into Mayo. Soooo.. we shall see.
Now its time to lay down for a bit with my little cuddle bug.
Now that is over...
I went to see Dr. Adinaro this morning. I will be starting my new medication today and going back next week for a EKG follow up to make sure the medication doesnt effect my heart rate in a bad way. He is going to contact the Mayo Clinic to see if they can get me in faster. He said he doubts it will take longer then a month for me to get in there. He has previous experience with them and while he does think Johns Hopkins is great he is more into Mayo. Soooo.. we shall see.
Now its time to lay down for a bit with my little cuddle bug.
Nov 4, 2008
Dr. A
Dr. Adinaro called just a few minutes ago. He didn't remember my appt was tomorrow. He wanted to see if I started the new medication which I haven't because i feel too crummy today to drive all the way down there and wait and all that fun stuff. So I will start the meds tomorrow if they have it in the pharmacy. He also asked if I wanted to up the dosage of one of my other medicines but I decided I didn't want to change too much too quickly. So we will see how this medicine works and then go from there..
g'night
g'night
Johns Hopkins Appt
They scheduling nurse just called. My appointment is February 18th!! Can you believe it?! She said I am on the cancellation list, however there are people ahead of me is what they told me yesterday. So pray hard that I will magically move to the top of the list and someone will cancel.
McCain/Palin 2008
So i voted. and it sucked lol!! I thought "its raining, all those working people wont want to get there work clothes all wet and muddy they will go later.." I was very wrong. Originally i had planned on going around 8 am.. Instead I went at 6:30.. I should have gone with my original plan! i waited an hour and half to vote. Got hit in the head half a dozen times by the umbrella of the guy behind me. Plus he kept moving the umbrella and all the water off of it dripped on my. I was pissed! I was also in a TON of pain. I was in pain before I went but figured I would go vote and then come home and be in bed by 730 and take a nap. Sadly, I have still not taken a nap and it is almost 930. My groin hurts from the heart cath. Im not supposed to be standing on it for that long so yeaaa.. So with that, my chest and being hit int he head im hurting and tired and happily drugged now that I am home.
That is probably why i am rambling so much.. So im going to shut up and watch TV until my mom calls to tell me that Jake's nose had be cauterized and then go to bed..
later :)
btw.> GO VOTE!
::EDIT @ 12:42PM :: Jake is a baby and didn't have his nose cauterized...
That is probably why i am rambling so much.. So im going to shut up and watch TV until my mom calls to tell me that Jake's nose had be cauterized and then go to bed..
later :)
btw.> GO VOTE!
::EDIT @ 12:42PM :: Jake is a baby and didn't have his nose cauterized...
Nov 3, 2008
Good News & Bad News
(GOOD NEWS) A nurse from the Johns Hopkins heart clinic called this morning. While they are going to have to call me for more information she called to tell me what a consult consists of.
First they do a cardiac MRi, which I will not have done unless my other test show that I need one. This is because of my defibrillator, I can not have an MRI done with out previous tests to make sure that it is safe to turn off my defibrillator.
Second, they will do an EKG that takes 20-30 minutes, which is INSANE compared to the fact that every time I go to the cardiologist I have an EKG done that lasts about 10 seconds.
Third, The will do an extensive ECHO that takes approximately 3 hours, which again is INSANE compared to the ones I normally have that last 45minutes to an hour.
(BAD NEWS) After the tests are done then I will meet the doctor. This is all done in one day which is nice but then she tells me that they wont be able to get me in until after the first of the year!! She said it would be around the end of January! I started to cry, i dont think I can last being in pain that long. If by chance there is an opening they will call me, thought they have a long list of people who would like an earlier appointment. She said most people wait for a few months to get in.
This is really hard for me because when we did this process years ago, it moved really fast and then got canceled.
So now I have to decide what to do about work, because getting disability isnt going well so far I may have to work to pay the bills, which is going to suck but atleast I will have something to do. If i go back to work it will be strictly part time, like 7am-11am Monday-Friday. The only bad thing about this is that the hotel is AWFUL! It is even worse then when I left 2 weeks ago. Its hard because the hotel is such a stressful place to be. I was there for maybe 30 minutes earlier today and I wanted to shoot myself. Its just awful!
So please pray that things will work out. I really want a new job but don't feel right getting a new job when I could have to leave for a long period of time.
I am still going to my cardiologist wednesday, so we will see if I am even allowed to work (a LARGE part of me hopes he says no!).
That is my update with what I know now.. More later!! :)
First they do a cardiac MRi, which I will not have done unless my other test show that I need one. This is because of my defibrillator, I can not have an MRI done with out previous tests to make sure that it is safe to turn off my defibrillator.
Second, they will do an EKG that takes 20-30 minutes, which is INSANE compared to the fact that every time I go to the cardiologist I have an EKG done that lasts about 10 seconds.
Third, The will do an extensive ECHO that takes approximately 3 hours, which again is INSANE compared to the ones I normally have that last 45minutes to an hour.
(BAD NEWS) After the tests are done then I will meet the doctor. This is all done in one day which is nice but then she tells me that they wont be able to get me in until after the first of the year!! She said it would be around the end of January! I started to cry, i dont think I can last being in pain that long. If by chance there is an opening they will call me, thought they have a long list of people who would like an earlier appointment. She said most people wait for a few months to get in.
This is really hard for me because when we did this process years ago, it moved really fast and then got canceled.
So now I have to decide what to do about work, because getting disability isnt going well so far I may have to work to pay the bills, which is going to suck but atleast I will have something to do. If i go back to work it will be strictly part time, like 7am-11am Monday-Friday. The only bad thing about this is that the hotel is AWFUL! It is even worse then when I left 2 weeks ago. Its hard because the hotel is such a stressful place to be. I was there for maybe 30 minutes earlier today and I wanted to shoot myself. Its just awful!
So please pray that things will work out. I really want a new job but don't feel right getting a new job when I could have to leave for a long period of time.
I am still going to my cardiologist wednesday, so we will see if I am even allowed to work (a LARGE part of me hopes he says no!).
That is my update with what I know now.. More later!! :)
Oct 30, 2008
yummy pain killers
Daniel and I just got back from the hospital pharmacy where I got my new pain killers (lets hope they work). While I was there I stopped by the cardiologist office to see if Dr. Adinaro was available because I just had a heart cath done and the bandage was coming off and so I wanted the wound check and re-bandaged if it needed to be. The nurse was like "Bigelow?" lol!! And i was like yes that is me and she told me to hold on and went and found the doctor. He looked at the incision and said it looked good so I do not need to have the bandage anymore.
We talked for a few minutes and he does want me to start a new medication called ranolozine which we have discussed a few times recently.I will start that as soon as the pharmacy gets it which should be Monday.
We also briefly discussed referrals and decided that the referral would be for John Hopkins. He is going to start working on the referral and let me know where we are at with it on Wednesday at my appointment.
Here is a link for the hypertrophic cardiomyopathy division of the heart clinic at John Hopkins.
Click Me
We talked for a few minutes and he does want me to start a new medication called ranolozine which we have discussed a few times recently.I will start that as soon as the pharmacy gets it which should be Monday.
We also briefly discussed referrals and decided that the referral would be for John Hopkins. He is going to start working on the referral and let me know where we are at with it on Wednesday at my appointment.
Here is a link for the hypertrophic cardiomyopathy division of the heart clinic at John Hopkins.
Click Me
BOYS!!!!!!!!
I am incredible irritated right now!
When i left the hospital yesterday they only gave me 15 doses of pain meds which i thought was the stupidest thing in the world. I am not going to the doctor until next wednesday and i average 5 to 6 doses a day. So basically I would run out on saturday and be back in the ER crying in pain. So after getting the run around of who i needed to talk to to get more medication I talked to my PCM. He could not believe that they put me on this particular pain killer. He said it was highly addictive and not something that should be taken regularly like I am taking it. Instead he is going to give me a different medication and said i can take this stuff for pain that may come through. So i tell Dan that it was time to go (he stayed home to make sure i was okay since this was my first day home and therefore my first day doing stuff besides walking from the bed to the bathroom and back in the hospital). So I get ready and THEN he decides he is going to eat. Now he started saying he was hungry 2 1/2 hours ago and when i mentioned mac & cheese he said ok. So i figured he would make it because I can't stand that long to cook anything.When i asked him about it 10 minutes ago he was like i didnt know i was supposed ot make it. I was like wlel there was no way in hell I was going to be cooking. ANYWAYS! I am irritated that I got ready and was ready to walk out the door and he decides to eat now! I am so tired and in pain I really don't want to be going to get the meds. I want him to go by himself but I know that its just easier for my to shut up and go then to fight with him. So he is going to drop me off at the pharmacy in the hospital and then go to the commissary and get some food then come get me.
ANYWAYS sounds like he is almost done so hopefully now it is time to go..
yeah for pain killers!
When i left the hospital yesterday they only gave me 15 doses of pain meds which i thought was the stupidest thing in the world. I am not going to the doctor until next wednesday and i average 5 to 6 doses a day. So basically I would run out on saturday and be back in the ER crying in pain. So after getting the run around of who i needed to talk to to get more medication I talked to my PCM. He could not believe that they put me on this particular pain killer. He said it was highly addictive and not something that should be taken regularly like I am taking it. Instead he is going to give me a different medication and said i can take this stuff for pain that may come through. So i tell Dan that it was time to go (he stayed home to make sure i was okay since this was my first day home and therefore my first day doing stuff besides walking from the bed to the bathroom and back in the hospital). So I get ready and THEN he decides he is going to eat. Now he started saying he was hungry 2 1/2 hours ago and when i mentioned mac & cheese he said ok. So i figured he would make it because I can't stand that long to cook anything.When i asked him about it 10 minutes ago he was like i didnt know i was supposed ot make it. I was like wlel there was no way in hell I was going to be cooking. ANYWAYS! I am irritated that I got ready and was ready to walk out the door and he decides to eat now! I am so tired and in pain I really don't want to be going to get the meds. I want him to go by himself but I know that its just easier for my to shut up and go then to fight with him. So he is going to drop me off at the pharmacy in the hospital and then go to the commissary and get some food then come get me.
ANYWAYS sounds like he is almost done so hopefully now it is time to go..
yeah for pain killers!
Oct 29, 2008
New Update from Katie
Hi everyone...
Just a quick note from me and Katie. She is being released today from the Naval Hospital. They do not do the surgery that she needs done there. She will see her regular cardiologist within the next week, and he will refer her to a surgeon, most likely at John Hopkins Med Ctr in Baltimore. They are the third highest rated heart specialty hospital, after Cleveland Clinic and Mayo Clinic. So, she will probably be having surgery sometime int he near future, but we don't know when yet. She'll keep you posted...
Kim
Just a quick note from me and Katie. She is being released today from the Naval Hospital. They do not do the surgery that she needs done there. She will see her regular cardiologist within the next week, and he will refer her to a surgeon, most likely at John Hopkins Med Ctr in Baltimore. They are the third highest rated heart specialty hospital, after Cleveland Clinic and Mayo Clinic. So, she will probably be having surgery sometime int he near future, but we don't know when yet. She'll keep you posted...
Kim
Heart Cath Video
For those of you like me, who find medical things interesting even though you don't know what you are looking at download this file.
CLICK ME
This file contains the program to watch the video (also in the file) of my heart cath yesterday. You can see my mesh stent in the video which is pretty cool. :)
Enjoy the confusion. I know I did.
CLICK ME
This file contains the program to watch the video (also in the file) of my heart cath yesterday. You can see my mesh stent in the video which is pretty cool. :)
Enjoy the confusion. I know I did.
Quick Update from Katie
Hey everyone.
I appreciate everyones thoughts and prayers as they mean so much to me. I am doing alright for now. I am still waiting to find out all the details but for now this is what I have been told.
I will be going home today and meeting a cardiac thorasic surgeon HOPEFULLY next week to discuss treatment. They told me that my cath. yesterday looked just like I told them it would. When the doctor this morning was explaining it to me it actually sounded worse then my last one. When they put my stent in it was helping my artery stay open enough that i was getting minimal blood flow through it as my heart compressed, whereas before the stent it closed completely. In yesterdays cath, although the stent was in fine condition there was no blood going through the artery during compressions. There were also some other areas getting little to no blood. I am okay with this information as it is what I was expecting.
What I was not expecting however, was having to go home before ever even speaking with the surgeon who would do the other procedures. Let alone having to wait for the procedure.
Hopefully they will give me enough meds to go home with to help with the pain.
Please keep up the prayers and good thoughts that this will continue to move quickly and not be a repeat of 7 yrs ago.
thank you again. :)
I will update more when I know if i am going home for sure. Therefore if you order anything before my mom or I give another update, please send it to the house.
:-D
Poor Poor Pityful Me...
SO i am having a little difficultly sleeping. I keep waking up so i figured if I stayed up for a bit when i fell back asleep it would be a little deeper... SO i have been playing on my laptop cause reading will just put me straight back into the sleep I was already in. I was bored and thought I would show you all how pathetic i look.
Thank God for built in web cams.
So there I am, waiting pathetically in the dark for some pain killers... it takes so long :(
Thank God for built in web cams.
So there I am, waiting pathetically in the dark for some pain killers... it takes so long :(
Oct 28, 2008
update about Katie
Hi
Katie asked me to send a quick update. She had her catheterization this afternoon. Because she is an inpatient, she had to go last. She called me at 2:45 and said they were getting ready to take her in. Dan called about 4:20 and said they were done, and she was back in her room, but they didn't know anything yet. When I spoke to her this evening, a doctor had been in to see her, to pass on some info from her doctor. Her stent is functioning properly (not crushed or obstructed) and they had found exactly what they had expected to find. This doctor told Katie that he thinks that she will be discharged, and then come back for surgery later, but he couldn't say for sure. Her doctor will be in tomorrow to discuss what comes next. I will send another update as soon as she asks me to.
Several people have emailed me with a location to send flowers and or cards. Katie doesn't think that she will go home earlier than Thursday. She is at the Portsmouth (VA) Naval Hospital, Progressive Care Unit #B, Room 14.
If you need her home address...
306 Cannon Dr
Carrollton VA 23314
If you have any specific questions, or messages...please do not hesitate to email me. Katie does have her computer with her, but I believe that the internet there can be sporadic...
Take care, and thank you all for your thoughts and prayers..
Kim
Katie asked me to send a quick update. She had her catheterization this afternoon. Because she is an inpatient, she had to go last. She called me at 2:45 and said they were getting ready to take her in. Dan called about 4:20 and said they were done, and she was back in her room, but they didn't know anything yet. When I spoke to her this evening, a doctor had been in to see her, to pass on some info from her doctor. Her stent is functioning properly (not crushed or obstructed) and they had found exactly what they had expected to find. This doctor told Katie that he thinks that she will be discharged, and then come back for surgery later, but he couldn't say for sure. Her doctor will be in tomorrow to discuss what comes next. I will send another update as soon as she asks me to.
Several people have emailed me with a location to send flowers and or cards. Katie doesn't think that she will go home earlier than Thursday. She is at the Portsmouth (VA) Naval Hospital, Progressive Care Unit #B, Room 14.
If you need her home address...
306 Cannon Dr
Carrollton VA 23314
If you have any specific questions, or messages...please do not hesitate to email me. Katie does have her computer with her, but I believe that the internet there can be sporadic...
Take care, and thank you all for your thoughts and prayers..
Kim
another Katie Update by katie
After posting the blog this morning a lady from the cath lab came in just to see if I had any questions and to ask a few of her own. She was very nice and left shortly after arriving. Because of not being able to eat my stomach was getting very acidic and with my nerves I was slightly nausous so they gave me something to calm my stomach. They warned me it would make me sleepy which was fine because I had woken up around 430 and was trying to take a nap anyways. I stayed pretty groggy up until they came and got me around 2pm to take me across the hall for the surgery. I was awake enough that I could talk and listen to them but was drugged enough that I kept dozing off. It was fine I guess but the doctor made a comment that he know how something was going to be needed to be fixed. When I asked what he said he would tell me later. After the surgery I never saw him again. Just about 30 minutes ago the on call dr came in to check my wound to see if I was able to sit up at all. I asked him if he knew anything and he said they found exactly what they expected. He couldnt tell me much more then that because that is all he knows. But from the sounds of it the Drs will be here tomorrow discussing surgery. This doc. says they will probably discharge me and bring me back for the surgery which will suck. Lets get thte shit done and over with.
Well time for a few more crackers (they told me i should eat when i was laying flat on my back... like they wanted me to choke or something!!) and sleep.. good night everyone
Well time for a few more crackers (they told me i should eat when i was laying flat on my back... like they wanted me to choke or something!!) and sleep.. good night everyone
Katie Update fromt he beginning.
Alright, so before the fun begins I thought I would write an update of what has lead me to this point.
Last Tuesday, October 21st, I went to work like any other Tuesday. I had done most of my weekly reports Monday so that Tuesday would be quick and painless. Of course last Tuesday I had to finish the budget which I had also started Monday, but silly me didn't save the file as a new file only the temp file which by Tuesday was gone. So I finished my Tuesday reports except for the bills which needed to be coded when Karen got to work. Since I was done with that it was time to work on the budget.. oh joy! Around 10am or so I was working on the budget and Karen came in and asked me a question. As I turned to look at her I got a really bad dizzy spell that lasted for quite a while. When it didn't go away after a few seconds I started to get worried but continued to do my work.
About 30 minutes later I got slightly dizzy again and my chest started to hurt. At that point I called Daniel and told him I was going to call the doctors and I might need him to drive me to the hospital. I called both my cardiologist and my primary care doctor (who is actually and internal medicine doctor, so when I can't get a hold of my cardiologist I can call him and he has some extra experience with hearts.) After about 10 to 15 minutes an internal medicine nurse called me back and said that they wouldn't be able to get me in so to go to an ER. I decided that I would go to the Urgent Care Center at Langley Air Force Base instead of an outside hospital because that is where my doctors are stationed. I have had bad luck with going to hospitals where my doctors are not and getting sent home with out proper care.
Once I got to Langley I was taken into the back very quickly. It is amazing how fast they can move when you say you are a cardiology patient with chest pain. With in 10 minutes of being taken to a bed my Internal Medicine doctor came in saying that he saw I was hear and heard a rumor that a patients defibrillator had fired. Knowing that I had one he thought that it was me. He told me that he had called my cardiologist and he was on his way. After I convinced them that my device had not fired they calmed down. They tried recreating my dizziness to see if it was an inner ear problem that had set me off. When they were unable to recreate the world spinning they decided to give me fluids because I was slightly dehydrated as a result of the cold I was finishing getting over. They told me that I am much more susceptible to dehydration from a cold and it is something that would affect me more than a person with out my disease.
After the fluids were pumped into me they came back in to see how I was feeling but the chest pain I had was still there. It was decided that I needed more fluids so I was admitted. They didn't want to pump in the fluids with out me being admitted because they didn't want me to say I felt better just to go home. If I was admitted I had to stay for at least the night. So I stayed in the hospital for observation Tuesday night.
On Wednesday, they did an echo which results were the same as previous echos. Because they had no obvious reasons for the pain they sent me home with some pain killers and told me to come back if the pain got worse. The only catch was to no go back to Langley as they do not have the tools that would be needed to care for me.
I stayed home from work on Thursday and Friday to get some sleep and rest so that I would hopefully feel better. Instead a headache that I was starting to get in the hospital was getting to bother me so much I wasn't able to sleep well and my chest pain was increasing, especially when I was trying to do things to stay slightly active.
Saturday morning when I started to wake up my head hurt so bad that I couldn't open my eyes so I tried to sleep longer and when I finally woke up I was feeling decent. I had thought about going back to the hospital but because I wasn't that much worse then when I left the hospital I figured I would be okay. But on Sunday, that was a different story.
On Sunday I woke up with an insane craving for McDonald's pancakes. To fulfill my craving (and to just shut me up) Dan took me to get my pancakes. Once we got home and I ate I was hanging out on the couch and was starting to hurt again. The movie Hook was on so I just tried to concentrate on that and convince myself that the pain wasn't that bad. After a short while I was on my right side in a ball with my right arm under my head and my left arm over my head with my hands clasped squeezing my head with tears in my eyes. My head was hurting so bad, along with my chest pain I couldn't take it. It was time to visit the ER again.
Dan had wanted to wait to take me until Monday but because I was in so much pain we went to Portsmouth Naval Medical Center ER on Sunday afternoon. When we got there I didn't even get out the whole reason I was there before they were telling me to come into the back. All I had been able to say was "I have a heart disease and I am having chest pa....". They got my vitals and an EKG in triage and then moved me to a bed in the back for monitoring. They gave me fentinal fairly quickly for the pain because I was hurting so bad. The ER called in the on call Internal Medicine doctor to evaluate me and then he called my PNMC cardiologist. He said he didn't want to make a decision to keep me or send me home, that was up to my doctors.
Obviously... My doctor decided I needed to be admitted. They brought me upstairs and started to get me settled into a room with an older lady. With in 30 minutes they were moving me to a private room because the conclusion about my headache was that it wasn't a simple headache I was having a migraine and needed a dark and quiet room. They put my on oxygen and more fluid and started giving me a stronger pain killer. The IV beeped at me for one reason or another all night which sucked but I was able to get some sleep and with the oxygen, pain killers and dark room my head started to feel a bit better.
On Monday they re-did my echo and started discussing options. One thing they want to do is change one of my medications to a new medication. With the change they have to wait until one of my medications is out of my system. Because it is a new medication they need to monitor me on it for the first day or so therefore I was told I would be staying in the hospital.
As they continued to discuss my case and what should be done they decided we were finally out of options and needed to do a heart catheter to check my stent and other measurements from the inside of my heart. They want to check the pressure of the muscle and see how many of my arteries are being pinched shut as my heart pumps. This procedure should be happening very soon. (it is 7am and they told me around 8:30am).
After the procedure is done they will look over the results and discuss the next option. While speaking with both of my cardiologists, if there is a problem with my stent, more arteries need to be stented or the pressure is just to high (or other problems that may arise), the next step would be open heart surgery.
This surgery is the one that was discussed and planned my senior year of high school. We made it all the way to the night before pre-op and then the surgeon called and said he was not comfortable doing the surgery. He felt at the time that the risks were greater than the benefits and that he was the not the best surgeon to do the procedure under those circumstances.
This surgery has been discussed and swept back under the rug many times over the past few years. I know your thinking "So why now". My doctors feel that we have exasperated all other options at this point and I am still having pain that at this point is only getting worse.
The surgery they want to do consists of 2 parts. The first part is called an unroofing or unbridging of the L.A.D. (Left Anterior Descending Artery).This condition is also known as myocardial bridging. The procedure will remove muscle that has grown over the artery and is now pinching it shut with each beat. The part of this artery that goes deepest into the muscle is where my stent is, however the artery worms its way through the muscle and is embedded it multiple areas.
The second part of the surgery is called a septal myectomy. In this procedure they will remove some of the extra muscle that has grown into my ventricle. My septum is 3.3 centimeters, a normal septum is approximately 1 centimeter.
So that is where we stand at this point. Whether I am having the full surgery or not is still unknown but after going threw previous caths and knowing those outcomes I know that the chances of surgery are on the higher side.
I have tried to make this as easy to understand as possible, but for more information here are a few sites that explain the procedures.
HOCM (the disease itself)
be careful googling the disease as it is a common disease in cats so most sites that come up are about cats.
Hypertrophic Cardiomyopathy Organization
Septal Myectomy
Myocardial Bridge (look closely at pictures.. Fig 1A & B>
Another option that has been on the table before is an alcohol ablation. It is similar to the septal myectomy but is less invasive. For this procedure they would do a heart cath and put alcohol into a particular spot of my heart causing a heart attack to kill off some of the extra muscle. The doctors here are not fans of the procedure, especially in my case. Even the doctor who brought the procedure to the US who I have had a consult with says that I am not a good candidate.
Here is a website that compares the alcohol ablation and the septal myectomy.
Comparison
Last Tuesday, October 21st, I went to work like any other Tuesday. I had done most of my weekly reports Monday so that Tuesday would be quick and painless. Of course last Tuesday I had to finish the budget which I had also started Monday, but silly me didn't save the file as a new file only the temp file which by Tuesday was gone. So I finished my Tuesday reports except for the bills which needed to be coded when Karen got to work. Since I was done with that it was time to work on the budget.. oh joy! Around 10am or so I was working on the budget and Karen came in and asked me a question. As I turned to look at her I got a really bad dizzy spell that lasted for quite a while. When it didn't go away after a few seconds I started to get worried but continued to do my work.
About 30 minutes later I got slightly dizzy again and my chest started to hurt. At that point I called Daniel and told him I was going to call the doctors and I might need him to drive me to the hospital. I called both my cardiologist and my primary care doctor (who is actually and internal medicine doctor, so when I can't get a hold of my cardiologist I can call him and he has some extra experience with hearts.) After about 10 to 15 minutes an internal medicine nurse called me back and said that they wouldn't be able to get me in so to go to an ER. I decided that I would go to the Urgent Care Center at Langley Air Force Base instead of an outside hospital because that is where my doctors are stationed. I have had bad luck with going to hospitals where my doctors are not and getting sent home with out proper care.
Once I got to Langley I was taken into the back very quickly. It is amazing how fast they can move when you say you are a cardiology patient with chest pain. With in 10 minutes of being taken to a bed my Internal Medicine doctor came in saying that he saw I was hear and heard a rumor that a patients defibrillator had fired. Knowing that I had one he thought that it was me. He told me that he had called my cardiologist and he was on his way. After I convinced them that my device had not fired they calmed down. They tried recreating my dizziness to see if it was an inner ear problem that had set me off. When they were unable to recreate the world spinning they decided to give me fluids because I was slightly dehydrated as a result of the cold I was finishing getting over. They told me that I am much more susceptible to dehydration from a cold and it is something that would affect me more than a person with out my disease.
After the fluids were pumped into me they came back in to see how I was feeling but the chest pain I had was still there. It was decided that I needed more fluids so I was admitted. They didn't want to pump in the fluids with out me being admitted because they didn't want me to say I felt better just to go home. If I was admitted I had to stay for at least the night. So I stayed in the hospital for observation Tuesday night.
On Wednesday, they did an echo which results were the same as previous echos. Because they had no obvious reasons for the pain they sent me home with some pain killers and told me to come back if the pain got worse. The only catch was to no go back to Langley as they do not have the tools that would be needed to care for me.
I stayed home from work on Thursday and Friday to get some sleep and rest so that I would hopefully feel better. Instead a headache that I was starting to get in the hospital was getting to bother me so much I wasn't able to sleep well and my chest pain was increasing, especially when I was trying to do things to stay slightly active.
Saturday morning when I started to wake up my head hurt so bad that I couldn't open my eyes so I tried to sleep longer and when I finally woke up I was feeling decent. I had thought about going back to the hospital but because I wasn't that much worse then when I left the hospital I figured I would be okay. But on Sunday, that was a different story.
On Sunday I woke up with an insane craving for McDonald's pancakes. To fulfill my craving (and to just shut me up) Dan took me to get my pancakes. Once we got home and I ate I was hanging out on the couch and was starting to hurt again. The movie Hook was on so I just tried to concentrate on that and convince myself that the pain wasn't that bad. After a short while I was on my right side in a ball with my right arm under my head and my left arm over my head with my hands clasped squeezing my head with tears in my eyes. My head was hurting so bad, along with my chest pain I couldn't take it. It was time to visit the ER again.
Dan had wanted to wait to take me until Monday but because I was in so much pain we went to Portsmouth Naval Medical Center ER on Sunday afternoon. When we got there I didn't even get out the whole reason I was there before they were telling me to come into the back. All I had been able to say was "I have a heart disease and I am having chest pa....". They got my vitals and an EKG in triage and then moved me to a bed in the back for monitoring. They gave me fentinal fairly quickly for the pain because I was hurting so bad. The ER called in the on call Internal Medicine doctor to evaluate me and then he called my PNMC cardiologist. He said he didn't want to make a decision to keep me or send me home, that was up to my doctors.
Obviously... My doctor decided I needed to be admitted. They brought me upstairs and started to get me settled into a room with an older lady. With in 30 minutes they were moving me to a private room because the conclusion about my headache was that it wasn't a simple headache I was having a migraine and needed a dark and quiet room. They put my on oxygen and more fluid and started giving me a stronger pain killer. The IV beeped at me for one reason or another all night which sucked but I was able to get some sleep and with the oxygen, pain killers and dark room my head started to feel a bit better.
On Monday they re-did my echo and started discussing options. One thing they want to do is change one of my medications to a new medication. With the change they have to wait until one of my medications is out of my system. Because it is a new medication they need to monitor me on it for the first day or so therefore I was told I would be staying in the hospital.
As they continued to discuss my case and what should be done they decided we were finally out of options and needed to do a heart catheter to check my stent and other measurements from the inside of my heart. They want to check the pressure of the muscle and see how many of my arteries are being pinched shut as my heart pumps. This procedure should be happening very soon. (it is 7am and they told me around 8:30am).
After the procedure is done they will look over the results and discuss the next option. While speaking with both of my cardiologists, if there is a problem with my stent, more arteries need to be stented or the pressure is just to high (or other problems that may arise), the next step would be open heart surgery.
This surgery is the one that was discussed and planned my senior year of high school. We made it all the way to the night before pre-op and then the surgeon called and said he was not comfortable doing the surgery. He felt at the time that the risks were greater than the benefits and that he was the not the best surgeon to do the procedure under those circumstances.
This surgery has been discussed and swept back under the rug many times over the past few years. I know your thinking "So why now". My doctors feel that we have exasperated all other options at this point and I am still having pain that at this point is only getting worse.
The surgery they want to do consists of 2 parts. The first part is called an unroofing or unbridging of the L.A.D. (Left Anterior Descending Artery).This condition is also known as myocardial bridging. The procedure will remove muscle that has grown over the artery and is now pinching it shut with each beat. The part of this artery that goes deepest into the muscle is where my stent is, however the artery worms its way through the muscle and is embedded it multiple areas.
The second part of the surgery is called a septal myectomy. In this procedure they will remove some of the extra muscle that has grown into my ventricle. My septum is 3.3 centimeters, a normal septum is approximately 1 centimeter.
So that is where we stand at this point. Whether I am having the full surgery or not is still unknown but after going threw previous caths and knowing those outcomes I know that the chances of surgery are on the higher side.
I have tried to make this as easy to understand as possible, but for more information here are a few sites that explain the procedures.
HOCM (the disease itself)
be careful googling the disease as it is a common disease in cats so most sites that come up are about cats.
Hypertrophic Cardiomyopathy Organization
Septal Myectomy
Myocardial Bridge (look closely at pictures.. Fig 1A & B>
Another option that has been on the table before is an alcohol ablation. It is similar to the septal myectomy but is less invasive. For this procedure they would do a heart cath and put alcohol into a particular spot of my heart causing a heart attack to kill off some of the extra muscle. The doctors here are not fans of the procedure, especially in my case. Even the doctor who brought the procedure to the US who I have had a consult with says that I am not a good candidate.
Here is a website that compares the alcohol ablation and the septal myectomy.
Comparison
Oct 27, 2008
Hospitalization Updates Start Here
These updates will be emails from my mom. She will be sending updates as news comes in and they will also be sent here.
Here is the first update
Hey...I am sending out a mass email to ask everyone for your prayers and good thoughts for Katie. She is in the hospital in Portsmouth. Last week, she spent a night in the hospital with extreme chest pains. They ran some tests, and gave her some meds to help with the pain. They didn't work...as a matter of fact, she got an incredible migraine. Yesterday, Dan took her back to the hospital, and they admitted her for observation and more tests. Her chest pains have increased, although the headache has subsided. They discussed changing one of her heart medications. After doing another echocardiogram today, and talking with a cardiovascular surgeon, they have decided to do a heart catheterization tomorrow morning. The stent that was placed in January 2005 may be obstructed, or there may be other obstructions. Based on the cath results, they may decide to do an unroofing procedure and a myectomy, possibly later this week. This is open heart surgery!! These two procedures are the ones that we were going to do back in January 2002, but the surgery was cancelled at the last minute.
Thanks...
Kim
Here is the first update
Hey...I am sending out a mass email to ask everyone for your prayers and good thoughts for Katie. She is in the hospital in Portsmouth. Last week, she spent a night in the hospital with extreme chest pains. They ran some tests, and gave her some meds to help with the pain. They didn't work...as a matter of fact, she got an incredible migraine. Yesterday, Dan took her back to the hospital, and they admitted her for observation and more tests. Her chest pains have increased, although the headache has subsided. They discussed changing one of her heart medications. After doing another echocardiogram today, and talking with a cardiovascular surgeon, they have decided to do a heart catheterization tomorrow morning. The stent that was placed in January 2005 may be obstructed, or there may be other obstructions. Based on the cath results, they may decide to do an unroofing procedure and a myectomy, possibly later this week. This is open heart surgery!! These two procedures are the ones that we were going to do back in January 2002, but the surgery was cancelled at the last minute.
Thanks...
Kim
Oct 26, 2008
Oct 11, 2008
leading up to Jayden Michael
What a few couples weeks these last have been!
It started out with one of our front esk clerks quiting because he couldnt get to work. The reason he couldnt get to work is because he thought it would be a good idea to drive a barely working car through flood water. It didn't make it, instead it flooded the car and he didn't know when he would be able to get it fixed. So we started off by covering his hours. Then, Nikki when out of town for a weekend but some stuff happened and she didnt come back right away. So then we had to cover HER hours.. then on top of that it was time for Frances PLANNED vacation. So we had to cover her hours. So btwn Karen and I we were working the front desk alot. THEN!!! last saturday morning the girl that worked the weekends didnt show up so I got a call at 7:30 telling I needed to come in. So i did. It sucked because my throat was killing me. That night Kurt came over and we hung out for a bit.
On sunday i woke up feeling even worse. I had a full blown cold at this point. Monday I worked and was feeling a little worse. By tuesday I worked and begged to go home because I felt so terrible. I went home and slept. I was only awake for about 3 hours btwn 1pm tuesday and 6am wednesday. 6 am because my smart husband left his ID card at work so I had to drive him to work.
On wednesday Esmie had a dr appt that she was very nervous about. They told her the previous week that on wednesday they would tell her if they were goingt o have to enduce labor early on Oct 24th. So i txted her and wished her goodluck. As i left my house for MY dr appt Esmie txted me back and said that they were keeping her and going to enduce her that day. So I went to my appt and did my Xray and got my antibiotics and then went up stairs. I spent all day with Esmie while they started the process. Jeremy was there for most of the day, he left long enough to get some baby stuff they needed and to pick up dan from work since i had dropped him off. Esmies dad also showed up on wednesday afternoon. He was very nice.
Thursday I went to work for the morning, but once Karen got in I left to go back to the hospital since there was still no baby. The started moving the process a little further giving her more meds and stuff to get her body into labor. Finally thursday around dinner time things really started going. She got her epidural around 7-8pm and then had Jayden by an emergency C-section -- He was borned at 11pm, 10/9/08. She had to have a c-section because his heart rate started dropping too low with each contraction, but they couldnt do the c-section earlier because labor is good for the baby as it helps mature the lungs and other organs.
Yesterday (friday) I got to the hospital on the early side and was there until about 1:30. We got to go see Jayden a few times (i went once with Jeremy and then again with Esmie) The nerse was very funny when it came to esmie seeing him because she hadnt seen him yet the nurse was in shock. She couldnt believe that it was 1:15 in the afternoon and Esmie still had not seen her baby.
That little boy is soo cute and looks just like his daddy.
I am so happy for them and can not wait until he is big enough to come!!
Jayden Michael
11pm on 10/9/08
4lbs 7oz
18 3/4 inches
It started out with one of our front esk clerks quiting because he couldnt get to work. The reason he couldnt get to work is because he thought it would be a good idea to drive a barely working car through flood water. It didn't make it, instead it flooded the car and he didn't know when he would be able to get it fixed. So we started off by covering his hours. Then, Nikki when out of town for a weekend but some stuff happened and she didnt come back right away. So then we had to cover HER hours.. then on top of that it was time for Frances PLANNED vacation. So we had to cover her hours. So btwn Karen and I we were working the front desk alot. THEN!!! last saturday morning the girl that worked the weekends didnt show up so I got a call at 7:30 telling I needed to come in. So i did. It sucked because my throat was killing me. That night Kurt came over and we hung out for a bit.
On sunday i woke up feeling even worse. I had a full blown cold at this point. Monday I worked and was feeling a little worse. By tuesday I worked and begged to go home because I felt so terrible. I went home and slept. I was only awake for about 3 hours btwn 1pm tuesday and 6am wednesday. 6 am because my smart husband left his ID card at work so I had to drive him to work.
On wednesday Esmie had a dr appt that she was very nervous about. They told her the previous week that on wednesday they would tell her if they were goingt o have to enduce labor early on Oct 24th. So i txted her and wished her goodluck. As i left my house for MY dr appt Esmie txted me back and said that they were keeping her and going to enduce her that day. So I went to my appt and did my Xray and got my antibiotics and then went up stairs. I spent all day with Esmie while they started the process. Jeremy was there for most of the day, he left long enough to get some baby stuff they needed and to pick up dan from work since i had dropped him off. Esmies dad also showed up on wednesday afternoon. He was very nice.
Thursday I went to work for the morning, but once Karen got in I left to go back to the hospital since there was still no baby. The started moving the process a little further giving her more meds and stuff to get her body into labor. Finally thursday around dinner time things really started going. She got her epidural around 7-8pm and then had Jayden by an emergency C-section -- He was borned at 11pm, 10/9/08. She had to have a c-section because his heart rate started dropping too low with each contraction, but they couldnt do the c-section earlier because labor is good for the baby as it helps mature the lungs and other organs.
Yesterday (friday) I got to the hospital on the early side and was there until about 1:30. We got to go see Jayden a few times (i went once with Jeremy and then again with Esmie) The nerse was very funny when it came to esmie seeing him because she hadnt seen him yet the nurse was in shock. She couldnt believe that it was 1:15 in the afternoon and Esmie still had not seen her baby.
That little boy is soo cute and looks just like his daddy.
I am so happy for them and can not wait until he is big enough to come!!
11pm on 10/9/08
4lbs 7oz
18 3/4 inches
Oct 3, 2008
Chip and his Spider
So I hear Chip in the kitchen making some weird noises, huffing and puffing and scratching the floor. So I went into the kitchen to see what he is up to and he is playing with a spider. I went and grabbed my camera and made a little video.
Enjoy the entertainment :)
Enjoy the entertainment :)
Sep 26, 2008
Been a while.
Helloooo
So i havent written since i got my new laptop, basically because i am LAZY :).
I love my new laptop, its so purrrrdy!
A lot has been going on since then though. Firstly, Karen (my manager) went on a trip to Manager school for Carlson. So all of last week I played manager, but because of personal issues between me and the person that works the front desk I avoided this place for all that it is worth. She tries to push every button and if i tell her to knock it off she gets bent out of shape. Since we couldnt afford to loose her I couldnt piss her off so I just avoided the situation.
On top of that I started doing physical therapy again for my knee because it was hurting so badly I couldn't stand it anymore. I also went to the doctor for my stomach (since I was sick in Utah) and he wanted me to get an echocardiogram done and see my cardiologist.
That was a piece of work, let me tell you! I went to make an appointment for my echo and they told me they didn't have any appointments open because they were doing some type of training so to keep calling and as soon as they had an appointment they would give it to me. Then i told them I needed to see the cardiologist afterwards and they were like oh well his wife is about to have twins so he only gives us a few appointments per day, etc etc.. Well because of that they got me in to get my echo last friday (i first tried to make the appt tuesday, but finally was able to make it when i called thursday). And i saw the cardiologist on wednesday of this week.
The doc told me everything looks great.. well as great as it can look. There have been no changes to my echo which is fantastic! We have decided to increase one of my medications to try to help the pain I get when walking. I ALWAYS feel like I am having a heart attack just because of the way my heart is. We also talked about trying a new medication to help with the pain, but we will see if this dosage increase works first.
So now everything is good to go. YEAH!!
Now if only i didnt have to work tonight because people usck then life would be just dandy!
Oh and Kurt (our previous manager) is going to come visit next week for a day which will be awesome! Can't wait to see him, even though I will be seeing him next month when we go to DC...
fun!
So i havent written since i got my new laptop, basically because i am LAZY :).
I love my new laptop, its so purrrrdy!
A lot has been going on since then though. Firstly, Karen (my manager) went on a trip to Manager school for Carlson. So all of last week I played manager, but because of personal issues between me and the person that works the front desk I avoided this place for all that it is worth. She tries to push every button and if i tell her to knock it off she gets bent out of shape. Since we couldnt afford to loose her I couldnt piss her off so I just avoided the situation.
On top of that I started doing physical therapy again for my knee because it was hurting so badly I couldn't stand it anymore. I also went to the doctor for my stomach (since I was sick in Utah) and he wanted me to get an echocardiogram done and see my cardiologist.
That was a piece of work, let me tell you! I went to make an appointment for my echo and they told me they didn't have any appointments open because they were doing some type of training so to keep calling and as soon as they had an appointment they would give it to me. Then i told them I needed to see the cardiologist afterwards and they were like oh well his wife is about to have twins so he only gives us a few appointments per day, etc etc.. Well because of that they got me in to get my echo last friday (i first tried to make the appt tuesday, but finally was able to make it when i called thursday). And i saw the cardiologist on wednesday of this week.
The doc told me everything looks great.. well as great as it can look. There have been no changes to my echo which is fantastic! We have decided to increase one of my medications to try to help the pain I get when walking. I ALWAYS feel like I am having a heart attack just because of the way my heart is. We also talked about trying a new medication to help with the pain, but we will see if this dosage increase works first.
So now everything is good to go. YEAH!!
Now if only i didnt have to work tonight because people usck then life would be just dandy!
Oh and Kurt (our previous manager) is going to come visit next week for a day which will be awesome! Can't wait to see him, even though I will be seeing him next month when we go to DC...
fun!
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