Thomas's Journal

Today is my 7-year "valversary." My mitral valve repair is still all good.

I still like getting an annual echo for peace of mind, but it isn't really necessary. My cardiologists tell me my valve is all good, but they're happy enough to see me if I want. My other doctors say they can't tell from the stethoscope that I ever had a valve defect, but they believe me when I show them the scar (although it's pretty faint -- I was kind of fond of it as a souvenir).

I moved from Chicago to Seattle a few years ago (and found a new cardiologist here by referral from my Northwestern cardio guy). The hiking and skiing opportunities are far better in Seattle than Chicago!

Good luck to all those with upcoming surgeries: heart valve repair is such an empowering inflection point in your health. It was so satisfying in its success and finality for me.

I've since found a sneakier and more vague health problem. I'm not fundamentally optimistic about fighting a vague, progressive problem (with therapy with a success rate way worse than mitral valve repair); but I remind people how chipper and empowered I was by the success of my valve surgery and my healing course in the following months. So the odd flipside of fixing these fixable valve problems is that we live to see other unrelated health problems! I'll take it.

Today is my 6th Valve-versary. My mitral valve was repaired at Northwestern, and went from a "flail" disaster to zero leakage after a little 90-minute nap. It's still doing well today. Several friends have had valve surgery since, and it's nice to be able to provide some reassurance based on my experience. I'm still grateful for this forum to share and support!

I had a successful valve repair 5 years ago. I get an annual echo just as a checkup. I don't mind getting the echo at all, but I'll admit I'm so paranoid. The echo technician said a staff cardiologist would prepare a report and give it to my cardiologist before my scheduled appointment with him for 6 days from now -- then she added, "or maybe he'll contact you before then." Perhaps she meant nothing by it, but I don't really like the idea that there's anything to discuss!

Today is my 5th valve-versary! I had a mitral valve repair with a sternotomy at Northwestern early on this day in 2018. It still doesn’t leak at all, so far so good! Thanks to this community for giving me lots of information and support over the years. It’s hard to feel a sense of control over a process that will happen while you’re unconscious — but this site helps to understand it all better. Thanks to Adam and all of you.

I had a successful mitral valve repair in 2018. This site has been a great resource for information and mostly kind support. So thanks again to Adam. I wish I knew of a site just like this for chronic lymphocytic leukemia. Does anybody else have the bad luck of having both genetic problems in the family?

Hello. I just had my 2-year echo checkup, following mitral valve repair in July 2018. Things are generally good: the mitral valve has no leakage at all, and none of the valves has any stenosis. The ejection fraction is 64%, so that's fine. The only worse findings are that my left atrium has gone back up in size, to "severely enlarged," at 106 ml. It was at 180 before surgery, then it came down to 90, then 80 a year ago. I don't know why it's gone up. I understood when the mitral valve was leaking, it was putting lots of pressure on the weak little left atrium; but with zero leakage from the mitral valve, I don't know why it's gone back up. This was the written report from a reviewing cardiologist, from the echo on Friday, but I will actually have a visit with my cardiologist in a few weeks. I suspect he'll say it's not ideal, indicative of the huge stress my heart endured prior to the valve being fixed, but that there is nothing to do about it. Does anybody else have a left atrium that's increasing in size, even post-surgery? My right ventricle is mildly dilated, but they say pulmonary pressures look fine, the aorta is fine, too.

Today is the two-year anniversary of my mitral valve repair. I just got back from two weeks with my wife and son out west — hiking in Glacier National Park, digging up some fossils on ranch land in Montana (and Lots of driving). Hiking between 4,000 and 7,000 feet was no problem, other than the unavoidable effects of altitude on a flat lander like me (Chicago). In the last six months, the slight ache in my sternum after lifting things has just about disappeared, and for some reason the visual disturbances/ auras that seemed to increase after surgery (from very infrequent a couple times a year to once a week) have also disappeared. So I’m grateful for the inventive surgeons that make these repairs possible, and for this community which makes the valve surgery process less stressful!

I'm 14 months post-surgery for a mitral valve repair. I met with my cardiologist yesterday to interpret my recent echo. He says it's all fine under the circumstances. I try to understand the echo reports. The mitral valve leakage is zero, so that's good. There is some "thickening" of the mitral valve leaflets, but that was always there, and the sutures etc add to the thickening. Not a problem. My left atrium is still "mildly enlarged" at 78 ml, having come down from 180 ("severely enlarged") pre-surgery and 92 ("moderately enlarged") a year ago -- and he bets that's about as far as it will "remodel" toward normal. But that's OK. The ejection fraction and "strain" measures are within normal parameters (strain is borderline), so the function is fine. He mentioned something I hadn't understood before, namely that numbers for left ventricular ejection fraction with severe mitral regurgitation (which I had) are misleading. The EF number seems so important, but it can be misinterpreted. The EF measures the percentage of blood that the LV chamber pumps out every beat, BUT it doesn't measure whether the blood goes in the right direction. With severe mitral regurgitation, a lot of the blood is going the wrong direction, back into the left atrium instead of down the aorta and off to feed the body. So an EF that looks healthy with mitral regurgitation might be misleading, because the blood is not being pushed the right direction. So in the past my layman's look at my EF in pre-surgery echoes said "Oh, the EF is still ok;" but now I know it wasn't really ok. Before surgery, my right ventricle was "mildly dilated" and had extreme pressure, as the mitral valve failure pushed blood backwards into the lungs and backed up pressures into the RV ("severe pulmonary hypertension"), which was a real point of concern before. Two months after surgery, the RV function was still "mildly decreased." Now he says those RV pressures and function all look normal now. He said any wet cough lingering after a cold isn't because of cardiac insufficiency. As to any visual disturbances/ auras, which I have more frequently after surgery (1 a month after exercise or under stress, compared to 1 every two years before), he says no idea, maybe anesthesia or the pump? There's nothing to do about it. He spent as much time with me as I wanted, and he says he can see me in "1 or 2" years, because I'm doing as well as can be expected. I'm happy with that, of course. No point to this, really, just wanted to get it off my chest, so to speak.

One-Year Echo I had an echo this week, about a year (13 mos.) after my open heart mitral valve repair. Good report generally. Before the surgery, my mitral valve with a "flail" leaflet had severe regurgitation, and my left atrium had dilated to a severely enlarged 185 ml. The surgery brought regurgitation to zero. The left atrium volume was down to 95 ml just two days after surgery, and 92.8 ml two months later. This week, regurgitation is still zero (yippee!), and left atrial volume is 78.7 ml. Closer to normal on that volume, so it has re-modeled a bit more (it lost 15%) since last September. (Ejection fraction was 60% before surgery, 55-58% in the months after, and was 63% this week. No stenosis on any valves.) There is a new metric on this echo report, one I haven't ever seen in past reports. It says "Global LV myocardial strain is borderline abnormal at -17.03 %." My Googling skills say strain is a measure of physical contraction of the chamber, and is another way of expressing ejection fraction. I intend to ask my cardiologist what this "borderline abnormal" measure of strain means. Does anybody else have experience with how important "strain" calculations are? It sounds like it's a new way of predicting cardiac weakness.

One Year Anniversary This week is my 1-year anniversary of OHS to repair my mitral valve. I have been very fortunate in my recovery. At this point I take one baby aspirin every day, and that’s it. I feel better than before the surgery, and the only negatives would be that there is still sometimes a slight ache in my sternum when I am particularly active, or right afterwards ( I am told that might go away in the next year); and it is true I have more visual disturbances, especially after strenuous exercise. But overall I have done really well, and I’m happy we identified the need for surgery when we did. It had gone too long, with my valve being a “flail” valve (meaning partially torn); but I hope to find out at my next ultrasound in August that my enlarged left atrium continues to go down in size, hopefully approaching normal by now. My scar is hardly noticeable at all. I’ll post a picture. Thanks so much to this website and all its posters for guidance and support!!!

I used to donate blood all the time, just because it seemed like a nice thing to do. I'm coming up on 1 year post-surgery for a mitral valve repair. I'm on a baby aspirin every day, that's it. Feeling fine. Is there any reason I couldn't start donating again if I want? Has anybody else done it?

I am just back from a 12-day trip to Ecuador/The Galapagos Islands, one which I postponed from last summer due to my urgent valve repair last July. It was a great trip, with a very busy schedule of sea kayaking, snorkeling, and hiking every day while at sea, and some hiking at 9,000 feet near Quito. I did great. Baring my chest to put on a wetsuit had me telling my heart story (and also claiming the scar was from a close call with a shark...), and, as usual, finding people who know others facing heart valve problems. I'm always happy to de-stress the process of diagnosis and treatment for others. One other vacationer pulled me aside to tell of her heart problems (cardiac arrest and some stents 2 years ago), which she didn't want to share publicly; but she was glad I talked about my heart recovery so openly. So 9 months after surgery, I "cashed in" the rain check on my vacation of a lifetime and did great. Thank you to this site for all the support!

Today is 8 months from my OHS for mitral valve repair. Doing great. Tomorrow I fly to Montana with my wife and 13-year-old boy for my third ski trip out west this winter. I'm not a great skier, but it's great fun, and I love I'm able to spend with my son before he gets too busy for dear old dad. Feel better than ever, no limitations skiing (other than my poor athletic ability). So for those in the pre-surgery or immediate post-surgery stage, it gets better fast.

My 13-year-old son drew a Valentine Day card for my wife. Maybe because the last year has taught us all a lot about hearts, this one is anatomically correct! So happy Heart Day to you all!

I got the results of my 8 week post-surgery echo. Looks good. My mitral valve shows "no" regurgitation, so that's good! The annular ring they implanted is well seated, of course. I'm interested in the left atrium size, because my mitral valve failure had my left atrium severely enlarged: pre-surgery, it was 65 mL/m2 in Feb of 2017, then 91.5 mL/m2 in May 2018! Post-surgery, it was 47 two days after surgery, and 46.8 eight weeks after. Those are still larger than normal, but I'm happy with coming down to HALF my pre-surgery size! My right ventricle was getting mildly dilated pre-surgery, but it is back to normal. Ejection fraction is 58%.

Does anybody else have any weird recollections about anesthesia? I woke up from a nap yesterday, sitting in a chair at home, and I could see the ceiling but I felt paralyzed for a second. Then I was fine. But it was weird, like my mind recalling feeling paralyzed (which is was 4 days before). Just curious. I've also been having tons of vivid dreams, mostly just bizarre, some funny (one made me wake up laughing, which hurt, of course), lots of long lost names and friends from my past making cameos.

OK, I am doing really well on day three after my open heart mitral valve repair. I was awake in the ICU when they pulled my breathing tube. The less you remember about that the better. By about 24 hours after the surgery, I was having a hard time with pain (I said eight out of 10). They gave me a Toradol, which is an opiate, and that solved my problem for a while. I think we only use one of those, then moved down to tramadol. That is another opiate. I was simultaneously on Tylenol by then, because the tramadol made me feel so exhausted and flaky, my last tramadol was about 48 hours after surgery. I have been on Tylenol since, managing the pain adequately. Getting tubes out as a real highlight. Some, like the breathing tube and the chest Drainage tubes are kind of a big deal and don’t so much hurt as just freak you out. The catheter in your neck just slides out, and the pain pump at the incision just slides out. I just got my temporary diagnostic pacemaker leads taken out also so at this point I’m not connected to anything anymore. Just wireless EKG leads that get displayed on a monitor. So I will be discharged this afternoon on the third full day after surgery. I’m looking forward to sleeping at home tonight.

My open heart mitral valve repair was a complete success yesterday morning! The rest of yesterday and the night was occupied with pain management. This morning I had chicken soup and Jell-O and some juice for breakfast, and just walk down the hallway for a while. Thank you all for your support!

I have a pre-surgery angiogram scheduled for Friday 6/29. I guess they'll map the mitral valve flows and also check for any coronary arteries that need touching up. I hope it all looks good so the repair surgery can be simple -- but if there are borderline blockages, they might as well fix them while they're in there. From some studies, it looks like maybe 1/3 of valve surgeries also have some coronary artery bypass work done. I assume that increases surgery length a lot, and recovery time as well. I don't see people here talking a lot about that. Have others had bypasses done during valve surgeries?