Bill's Journal

Mike Roskowinski  Love to see this as I am going to get mine done at the Mayo Clinic on May 6th. Lucky to have this option right here in my state!!

Bill L.  Hey Mike. Congrats. on your selection of the Mayo Clinic. Wishing you much success, comfort, and a rapid recovery.

Darren Ketchley  Hi bill. I had mitral valve regurgitation and my OHS to successfully repair the valve in june 18. I was diagnosed with a murmur aprox 25 yrs ago but no follow up from my gp was ever done.my symptoms like shortness of breath. Some palpatations became apparant in 2013 where i was diagnosed as moderate. I believe the earlier surgery is done the better and wish id been more knowlegable about my condition. Theres a danger of enlarged left atrium which can lead to atrial fibrillation which i now have and at one point a lowered ejection fraction down to 35% from a pre op ef of 65%. I find the attitude of some specialists quite dis interested and found myself re searching my own condition which is a stressfull thing to deal with. I knew next to nothing about the possible problems of leaving surgery too late and at times have been very pissed off. Sll i can say is its youre life and you deserve the very best care and treatment so you get the best chance of full recovery. Good luck.

Thomas Brusstar  I had OHS to repair my mitral valve in July 2018, at age 54. My mitral valve prolapse was stable until 2017 when the prolapse progressed to ruptured chordae and a "flail" leaflet in the valve. (My problems were disdiagnosed as pneumonia at first, and I blamed increased fatigue on getting older. Finally about a year later an echo showed the flail leaflet.) My pulmonary hypertension was 78, which is severely elevated. It is a symptom of very bad backup in the lungs. Kudos to my heart/ lungs, and yours, for putting up with it without major debilitating symptoms; but that kind of backpressure creates dilation of the left atrium and also does damage to lung tissue over time. My left atrium was dilated more than double normal before surgery, and came down by 50% within a few days. I hope it's still re-modeling closer to normal, but it's still abnormally large. Pulmonary pressure also came down a lot right away. The longer you make your LA put up with those resting pressures, the more it will dilate. While it sounds conservative to wait until absolutely necessary for surgery (I didn't look forward to it!), I think the presence of that pressure is really good evidence of major dysfunction within that circulation loop. As Darren says, you might develop afib if you stress that LA too long. I'll bet your left atrium is dilated. You don't want to wait long enough that you get a torn leaflet like I did, or ruptured chordae. I am not Mr. Super Athlete, but at 54 and no real co-morbidities, I was a strong patient and basically wish I had known my heart was in such distress earlier. I recovered really well. Went skiing out west 3 times this season, and I'm going kayaking/ hiking in the Galapagos next week. So I'm way better than before last summer's surgery!

Bill L.  Thanks, Darren and Thomas. Both of your stories are extremely helpful for me, particularly your cautions about delaying surgery.

Darren, did you finally undergo your OHS in 2013? Has your ejection fraction returned to normal? I sure hope so. I understand that ejection fraction, especially for those with MVP and asymptomatic can decrease post-surgery. I think my situation may be unique. My ejection fraction has always been normal (typically on the high end); last echo: 81%. At age 64, I am really fit and worry that my breathing/stamina/lifestyle will be compromised from surgery.

Thomas, I appreciate the revelation about your pre-OHS pulmonary pressure of 78 and that it decreased quite a bit. I have not been able to connect with many others with MVP and severe regurgitation who have pulmonary hypertension. Your insight regarding the left atrium dilation is also appreciated. Both your recovery and active lifestyle post-OHS are inspiring.

Darren Ketchley  Hi bill. Wifh mitral regurgitation a high EF is mostly false as everything is compensating for the extra work the heart does to pump enough blood. The LA stretches with the blood the eaks back into it as the valve does not close. My personal feelings are as i said the sooner its fixed the more chance the LA has to recover. Its calle reverse re modeling. It can return to normal soon after the valve is fixed or take many months to come back or it may remain enlarged. This can often be a cause of atrial fibrillation where the pump function of the LA becomes weaker and the electrical system tries to make it pump faster to keep up. Its a condition that can be treated with some drugs like ameoderone which is a nasty drug with side effects or catheter ablation if successful can last several years but another ablation may be needed later on as AF has a nasty habit of coming back. What i have learned on my journey is to do research. Ask questions. And get to know and understand youre condition thoroughly. The experts merrily skip over things and send you out the door with more questions than answeres. OHS is something you go through and it is a journey unique to yr condition. I have found that many things improve with time. Life will change and the way you see the world also changes.take care and keep us updated