I Have Marfan Syndrome

Wednesday, 26 May 2010 15:37

Today is the anniversary of my Mitral Valve surgery.

One year ago last week, I was having extreme difficulty breathing. I spent the night trying to sleep sitting up, and breathing shallow. Luckily, I used my old Tai Chi training to breath using my diaphragm and did not feel anxious or scared. When nothing had changed by the next morning, and things were actually hurting in my chest, I then started to get concerned and decided to make the trip into Manhattan to the emergency room at Weil-Cornell Medical Center.

From previous experience, we had decided that it was better to make the two hour trip down, instead of going to the local ER and then going through the rigamarol of trying to get transfered should my issue be seious (which I was most certain it was). My cardiologist, and many Marfan experts are located at Weil-Cornell, so that seemed the logical choice.

One year later I am definitely breathing much better than before the surgery. However, the size of my heart has not decreased- my heart is still 3 times the size it should be. It is easier to climb the stairs, run, and do so many things, but now I am dealing with other issues.

My scoliosis is causing problems. I have a very serious S curve that I have not had evaluated in over 10 years, so who knows how bad it is now. All I know is that my knees have started to hurt, and my lower back is almost always tired, and the muscle on the left side of my lumbar vertebrae is almost as hard as a rock. This has caused some pain in my kidneys as well from time to time.

All this "pain" sounds so much more serious when I write it down... and it is. It's just that from day to day, I've learned to live with the pain and just push it aside and go on. Not necessarily a good thing, as a year ago, I could have potentially kept going through the day with the pain in my chest without having it checked - which would not have been good, as it was fluid backing up into my lungs because two leaflets had broken inside of the Mitral Valve in my heart.

So, it's been a year. What have I learned? That my wife is strong, and there was a reason that I married her - I saw that strength in her, and I knew she could handle this. And that a lot of my patience issues had to do with lack of sleep - even though I was sleeping enough, I wasn't sleeping while I was sleeping because of my Sleep Apnea.

I learned that I can take care of two kids. I was VERY scared of that when Olivia was born. And I was deathly afraid of that when all of my help left town two weeks after I came home from the hospital. But I did it, and I am doing it.... and it's still tough.

This better be the last surgery dammit!

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