Here is the first picture ever taken with the camera.. CUTE HUSBAND!!
Here is the first taken of me :)
And a picture of Chip!
2 years ago
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!! :)
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