July 28: On my own, explanation of surgery

Well, it's Saturday afternoon. Beth decided to leave last night. I can't blame her; between vacation and me she's been away from home for over 6 weeks. Joanne came over last night and we got a bunch of things accomplished. It's mostly small stuff that you "normal" people don't think twice about but for me is painful. So, for the first time in 3 1/2 weeks I am alone. It's kind of scary. Not that I can't take care of the basics, but it has been good to know that someone has been right there to step in and help. But time to advance onward!

For clarification purposes (and for new readers) I wanted to explain some of the medical stuff. Since my case has stumped many board certified cardiologists & surgeons it is difficult to understand everything. The first heart repair on the mitral valve (opening or door between the top and bottom chambers on the left side of the heart) corrected one thing and left something almost as bad. The second heart repair corrected that badness and, for a few weeks, seemed to make me feel better. The the lung surgery (thoracotomy) was the result of the first surgery: instead of splitting my breastbone/sternum they separated the ribs on the right side about 4-5 inches for 10 hours and the ribs stayed spread too wide letting the lung come through with coughing, laughing, etc. So they put mesh on the inside of my chest wall to keep the lung from coming through the ribs. (Hernias--not just for the groin and belly!) That surgery caused the most pain. I continued to feel worse and worse after that surgery; testing showed that the valve area was too small, not allowing enough blood to flow quickly enough to meet the demands of my body. No one knew why.

This third heart surgery showed the reason: there was a huge overgrowth of tissue in the valve area causing the opening of the mitral valve to become increasingly small. It's like a keloid, or too much scar tissue just going wild. No one's fault--just my body. But the biggest surprise was this: my mitral valve was so small it was the size of an 8 year old child's. They couldn't tell until they cut the whole thing out. Dr. Cohn said it was the tiniest valve he had ever seen in an adult. So that kid-sized valve was trying to support an adult sized heart and body, while also being malformed. All of this is congenital, and worsened as I got older. While I always seemed to tire quickly and be out of breath everyone assumed that it was because I was pudgy and out of shape. (I wish I could tell a few mean gym teachers from high school about this!)

Because of the small size area and the over-growth of tissue, Dr. Cohn had no choice but to replace it with a mechanical valve. The tissue won't overgrow the metal, so while he put in the smallest valve he has ever used, it will hopefully be a larger opening. He then took out every piece of tissue he could in the left ventricle so that there was as much room as possible for blood, hoping that because the ventricle squeezed well that it would be able to handle all the supports being cut out. He also decided that he should check out the tricuspid valve (on the right side between the top and bottom chambers) because it was always leaking. It was assumed that it was because of the back pressure from blood not flowing through the mitral valve, but on getting in and actually seeing it he found that it was structurally abnormal and flopping all around. So, just like the repairs on my mitral valve, he put a ring and some stitches in to narrow the opening. (I like to think of it as a tummy tuck for the tricuspid valve!) So my heart and lungs have lots of new things to keep them behaving themselves for the first time in my life. While everyone is being very conservative about the outcome, considering the other surgeries, it is hoped that I will be able to do more and be less tired after I recuperate. Time will tell how much of an improvement, but to avoid disappointment I am keeping expectations somewhat low. Hoping for a pleasant surprise.

Well, I've rattled on long enough, but wanted to clarify some confusing stuff. I've gotten some lovely flowers and several more cards; both of these mean a lot to me. Thanks for checking in, Laurie