I went over to the Cleveland Clinic yesterday to be evaluated by one of their cardiologists. Left at 3:30 in the morning, no traffic! I was very impressed with the place and the doctor. When it came time for him to go over my 3 ECHO tests from my cardiologist, he comes in and says what they sent over was worthless because they just sent still shots, not any movies of the heart pumping. So they changed the schedule around and I met with him after they ran their ECHO. His analysis is that I have a severe regurgitation of my mitral valves, but the leak is not active during the entire ventricular contraction. The result is that the volume of blood going back is not as large as it could be and that is why my heart has not started to compensate (enlarge, thicken, etc.). Because my cardiologist screwed up with what he sent over, they have no idea how this is changing with time . So because my heart is doing fine, he felt that we can take time in evaluating the situation. He wants me to come back in August and have a stress ECHO where they would make their measurements while I am exercising. He suspects that the leak gets worse with exercise. That is probably what causes shortness of breath, even with simple tasks like picking up my 85 pound 14 yr. old dog to put in the station wagon. So I think I am in good hands over there in having them follow my valve disease, and I will make the effort to do the drive rather than take the convenient route and try to work with the group over here. Bottom line, no surgery at least for a while.
A lot of the questions Adam is getting for the Mitral Valve Conclave he is attending in NY has to do with durability of the repair. We recently had a post from a heart valve brother that had a very rapid failure. It will be interesting to read the answers.
I would like to share my good fortune with all my heart brothers and sisters, especially Robyn who is having a real tough go of it.
Journal posted on March 23, 2015
I had my appointment today with the cardiologist to go over my ECHO from March 3rd. As I suspected the valve regurgitation is now rated as severe and the doctor said it is now time to look into getting the valves repaired. The rest of the heart has not suffered any damage yet, so this is the prime time to get it fixed before damage happens. So I will be calling Cleveland Clinic this week and arranging going over there for them to evaluate things (probably do a TEE who knows what else) and get me on the waiting list to get the surgery. I am guessing this is ballpark four months out. I am ready to git ‘er done!
About 5:00 tonight I get a call from the cardiologist ‘s office and the nurse says “the doctor has read your ECHO”. I am a bit unsettled as in the past it has taken about a week to get any feedback. The ECHO technician must have red flagged the scan because the nurse said the doctor found that your condition has worsened and wanted to know if I wanted to move up my appointment. She also wanted to know if I was experiencing fatigue and shortness of breath. Well, yea. I am sticking with the original appointment on the 23rd, but because I was already at moderate to severe regurgitation, I guess this means I am on the road to getting this fixed. Yes!
I just got back from my third ECHO to check on my mitral valves. This time the technician performing the test was this lady that has been doing it for over 20 years. The last girl had me facing away from the screen and didn’t say boo, but this one had me facing the screen and talked non-stop about what she was looking at and measuring. I am glad I had educated myself enough on the subject to be able to ask good questions. I now know that most, but not all the prolapse involves the posterior leaflet vs. anterior leaflet. This is good news as it is the easiest one to have fixed, and from what I have read it can sometimes be done minimally invasive vs. full sternectomy. She was looking at the regurgitation and showed me that the jets were going directly back into two of the pulmonary arteries (there are a total of four) and that is what is giving me shortness of breath. On a good note she said my heart function is still good and she did not observe any dilation or the left atrium or left ventricle. My appointment with the cardiologist is March 23rd to go over the results and find out if regurgitation is stable at moderate to severe or has ticked up to severe .
Taking advantage of this miserable weather in PA, I have been reading Heart 411 by Marc Gillinov and Steven Nissan. Marc is the Dr. at the Cleveland Clinic that I would like to have do my valve job when the time comes. Although the primary focus of the book is keeping your heart healthy so that you never end up in the hospital with coronary heart disease (CHD), there is a lot of information pertinent to those of us with valve issues. At 550 pages, it is sort of the “War and Peace” of heart health. Give it a read.
Along with my MV regurgitation I have a rather low LVEF (55%). I have been doing some research on the effects of surgery on LVEF, which one would intuitively expect to go up. This journal article http://content.onlinejacc.org/article.aspx?articleid=1126867 indicates just the opposite occurs…it goes down! Also, there was no increase in exercise capacity.