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!

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

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.

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!!!!

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 after MRI 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!