Darlene's Posts

My 2-Year Anniversary! Two years ago today, I had OHS to fix my severely regurgitating mitral valve. I was diagnosed with a heart murmur in 2012, but by 2014 the leak had gone from mild to severe. My cardiologist at the time not only said I didn’t need the valve fixed, he also said I didn’t need to have a TEE because I was asymptomatic. I remained asymptomatic in all the days leading up to my surgery. Had I taken his advice, I may not have had my valve fixed and who knows what would have happened other than the leak would not have gone away and my heart could eventually have been compromised. Instead I’m living my life with a normal heart and a valve with no leak, not even trace. During the time I contemplated surgery, I did my research and found that doctors and surgeons do not agree on when asymptomatic patients should have surgery if at all. I decided surgery was the answer and referred myself to Dr. David Adams at Mount Sinai in Manhattan. After the consult, I knew this was the right person to perform my surgery, and I canceled my consult at the Cleveland Clinic. Dr. Adams told me he was 100% sure he could repair my valve. When I asked him the last time he was wrong and had to replace a valve, he said 2002. I decided those odds were good enough for me. My husband, who distrusts most doctors and surgeons, is the one who said I didn’t need to look any further. He totally trusted this guy to take care of me (which if you knew my husband, you’d be very surprised). The surgery went perfectly and I was discharged after 5 days. The only complication was developing post pericardiotomy syndrome. I ended up back at Mount Sinai on August 13th in the ER, and the next day a chest tube was inserted to drain the fluid. After the first 15 minutes, there was already a liter of fluid drained. That chest tube was more painful that the surgery recovery. But I was discharged after 4 days, and Mount Sinai was finally in my rear-view mirror. I went back to work after 6 weeks, but thankfully I had an amazing supervisor who let me telework full time for the first 4 weeks back. Showering and getting ready for my day was still a lengthy process at that point, so staying home in my pjs really helped as my brain and my fingers were fine. In some ways it’s been a surreal journey. It just doesn’t seem possible that I went through this experience and I’m totally fine. My advice to those of you who haven’t been scheduled for surgery, do your research and find out as much as you can about your condition and whether early intervention is for you. Don’t necessarily wait until a cardiologist tells you that you need surgery. Know your own body, take charge of your health, but don’t panic either. Get yourself educated so you have the best possible outcome with a surgeon that is an expert at fixing whatever your issue is. A general cardiac surgeon is not good enough in this case. And most of all, if the doctors you are seeing do not make you feel comfortable, see someone else. There are plenty of doctors out there and finding the right one for you is key. If you don’t feel comfortable asking questions, or you feel rushed, then maybe looking elsewhere is the right choice for you. For everyone with upcoming surgery, try as best as possible to make peace with your condition. You probably won’t sleep the night before, but try to accept the situation so that you are not overcome with fear. Can bad things happen? Of course. But you could get in your car today and not make it to work. Perspective is critical. And being on the other side has just been the best thing in the world. I almost can’t describe how wonderful it is even with the complications and the long recovery. It just feels so good!! And to those of you on this side with me, we have a great community here even after surgery and recovery. I dropped off the site for a while I admit, but I’ve been back and getting excited about all the wonderful stories of folks who have made it and are now living life better than ever. We have a wonderful support group, and I personally have made two friends from this site. We continue to see each other and to catch up on all the wonderful things going on in our lives. I will never forget the support I myself received here when I was scared and couldn’t begin to comprehend what was happening and why. The community has been a wonderful source of support. Take care, and I hope you all have a wonderful day!

As silly as it may sound, I was shocked to realize this is my one year anniversary post mitral valve repair. At this time last year I was still in surgery, but would be awake by 7pm. What an amazing journey it has been. I could not have more respect for the wonderful surgeons at Mount Sinai who visited me twice a day, and the nurses who were beyond amazing. The care was outstanding. When I reflect on the ups and downs, the ups have by far outweighed the downs. Was recovery hard? Yes. But every day I’m thankful I made the decision to have this elective surgery. I didn’t have any symptoms pre surgery, but it’s clear the valve wouldn’t have fixed itself. And my heart would have eventually suffered. I’m exercising full out these days, I’ve lost another 10 pounds since the surgery (22 pounds before surgery), and am now 10 pounds from my ideal weight. I’ve discovered healthy yet delicious recipes with ingredients I might not have tried in the past. I feel like I’ve made lifestyle changes for the best and I’m feeling very good about my long term prognosis. On the downside, I still have some shortness of breath issues that my cardiologist and surgeon are trying to determine the cause of, but my heart does not appear to be the culprit at this point. I also had 4 days last week of what felt like PVCs. I see my cardiologist tomorrow for a regular checkup, and I will mention the irregular heartbeat. But it came and went and hasn’t been back. Strange, but I won’t be concerned until she tells me I need to be. Thanks to all the folks on this site for helping me get through my surgery and recovery. This is truly an amazing support group. We all understand each other in ways our families and friends cannot. Too all those with upcoming surgeries, you will be amazed at how relieved you will be on the other side, and how much progress you will make each day. Some days will be harder than others, but overall, you will feel so much better.