Darlene's Heart Valve Journal

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!

I can't believe its been 18 months since my OHS to repair my mitral valve. It still seems surreal sometimes!! Things have gone very well over the last 6 months since I posted my one year update. I'm back to a fully normal life!!

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.

Goofing around with Uncle Sam.

Wow, its hard to believe its been 9 months since my surgery to repair my mitral valve, and about 2 and a half months since my last post. I decided to take a (short) break from my doctors and the fact that they all disagree with each other! It all started with some shortness of breath that started about two months ago and hasn't gone away. I'll skip the part about all the conflicting theories and just say that my cardiologist eventually did a stress test and compared it to the one I had done a year ago before my surgery. I was 30 pounds heavier then and had my bad valve, yet I was able to exercise longer. My cardiologist noticed the shortness of breath right away, but she said its definitely not my heart. She thinks it could be permanent lung damage from the post pericardiotomy syndrome I had after the surgery. So now she wants me to have a lung function test, which I am having on Thursday. Other than the breathing issues, I really do feel completely recovered. I can do everything I did pre surgery, and have been for about 3 months now. I'm so glad I made the choice to have "elective" surgery. The road is definitely bumpy and sometimes very discouraging, but overall, I'd do it again in a heartbeat!!

My sister (left) and I on the gondola at Breckenridge. I am 6+ months post OHS and I had no issues with stamina or altitude! I feel great!

Less than 6 months out from OHS and I just finished shoveling the driveway with my husband. Feel great and no issues with exertion!!

My husband and I in Cooperstown, NY for New Years.

It's been a while since I last posted. It's weird, nothing has been going on! I feel great and my life is back to normal. I'm back on my eating plan (I lost 22 pounds pre surgery and 8 pounds post surgery, not really for my heart, but just for overall health), working out with no limitations including using weights, and working full time, which I've been doing since the six week mark. I'm so thankful I only had one complication and that it has resolved. I'm also thankful for finding this site and meeting people who have become new friends. I feel truly blessed!!

I'm 15 weeks post op and still feeling great, which makes me very happy. What doesn't make me happy is finding out that the co-surgeon that Mount Sinai used is out of network for my insurance. Mount Sinai asked me to ensure the surgeon that I had the consult with was in network along with Mount Sinai itself. Both were preferred providers. I had no idea Dr. Adams would use a co-surgeon or that he would be out of network, and now I have a bill for $14,228.80. Very very unhappy with this news. How am I supposed to know that other surgeons would be participating in my surgery unless someone from the office indicated so? And why would the other surgeons on the same team accept a fraction of the insurance companies accepted by the primary surgeon?

Hello to all my heart sisters and brothers! During the last three weeks since my previous post I have felt great. I'm not only working full time but I only took 6 weeks off, which really shocks me in hindsight. I'm back to how I felt pre-surgery, i.e. I do not feel like I had heart surgery at all. The fluid around my lungs continues to hang around (I'm on week 12 of that nonsense), but I'm happy that there has been no pain since Sept 21st. My cardiologist is continuing to watch the fluid to make sure it doesn't build up again, and I have a follow up with her on Oct 31. Maybe it will actually be gone by then. If not, hopefully it will be like it is now, and not causing me any distress. To those of you who have followed my story, I hope all is well with those of you in recovery, and for those who have upcoming surgeries, just remember that there will be challenges during recovery. Its hard! But you will get through it, and you will feel better! In fact, you will feel amazing! But recovery is like a bumpy road, with many ups and downs. And we are here to support you!!!

My sister and I having dinner before the Maroon 5 concert during my visit to Colorado.

I haven't posted in a while. I am now 11 weeks post op and hoping the pain from this post pericardiotomy syndrome is finally over. Pain has been quite erratic over the last several weeks with the worst of it lasting a full 9 days of continuous pain that the narcotic barely touched. Surgeon thinks I will be over this soon, but its so hard to be patient. I've had this fluid around my lungs for 9 of the 11 weeks!!! They started me on a new drug cocktail and now I've been pain free since Sept 21st. Fingers crossed that this complication is the last and I'm finally home free. Thankful to be able to get back to my walking. I leave later this week for a prior planned trip to CO to see my sister, and I want to feel good while I'm there.

My friend and I doing a short hike to Kaaterskill Falls in Hunter, NY over Labor Day weekend. Felt so good to get out and do something "normal".

This is my mitral valve before and after the repair.

I am just shy of 6 weeks post op. I decided to start working part time from home. Logged 16 hours last week, and boy did that make me tired! How can it be so tiring to think??? I have an office job and I didn't expect to have to take a nap each day after putting in 3-4 hours. I guess I need to work on my patience.

My first two weeks post op were amazing. I don't think my recovery could have gone better. Since August 2nd, I have been in the ER three times. The first ER visit was to my local hospital and they gave me the diagnosis of pleural effusion. I was admitted to the hospital and they got my pain under control. I was discharged two days later and told the effusion would resolve on its own. On August 12th, I went back to the same ER as the pain had come back along with a fever. They said the effusion was worse and I might have pneumonia, but they discharged me anyway. I called Mt. Sinai on Sat and they told me to get up there if I could. Went to their ER and was admitted immediately. Diagnosis was post pericardiotomy syndrome. They inserted a pigtail catheter on Sunday, and drained over a liter of fluid in under 15 minutes. They left the catheter in for 24 hours. The pain of that catheter insertion almost put me over the edge. My pain level was off the chart and the pain meds only took the edge off, it never removed the pain. By Monday morning I honestly wanted to die (I know that is a terrible thing to say). The catheter was removed later that morning, and for the first time in two weeks I could breathe!!! Most of the pain left with the catheter, and my ability to take a deep breath has improved tremendously. I didn't realize how compromised by breathing had become. That liter of fluid was slowly crushing my left lung. So glad I went back to my surgeon and stopped going to my local ER. Because my immune system is overreacting to the surgery, I am now on steroids to ensure the fluid does not accumulate again. I was discharged on Weds and will need weekly chest xrays to monitor the fluid. I hope I am finally over the hump as these last two weeks have been more than challenging. Its rocked my confidence and taken a toll mentally.

Today is day 21 post op. Had a little setback, and ended up in the ER last week with a diagnosis of both pleural and pericardial effusion. The pain was actually worse than the valve surgery itself (seriously). I was discharged after 3 days and am mostly pain free as of today. So I'm back on track with my walking and exercising. I know there will be ups and downs, but ending up in the ER was actually surprising to me. I felt things were going so well, nothing could stop me. So onward and upward!!!!

Day 15 Post Op having lunch with my twin sis who flew out from CO to see me.

Today is day 10 and I can't believe how fantastic I feel! I received outstanding care at Mt. Sinai. It may not be the prettiest facility around, but the doctors, nurses, nurse practitioners, and patient care assistants were top notch each and every one of them! Even the food workers were professional and just all around good folks. I was treated with the utmost respect. I also think it helped that I've been hospitalized before, so I knew exactly what to expect with round the clock care and continuous interrupted sleep. Luckily I'm an excellent napper, so I was able to get all the rest I needed. I've been recovering at home since July 23, and except for a little shortness of breath and fatigue, I have no complaints. My BP is 100/66, my resting heart rate has gone up from pre op of 66 to post op of 80, but I expect that to continue to come down as I get stronger. My new cardiologist said I look great although she has nothing to compare too since I just met her yesterday. Met with a PT today who gave me a walking program since I am nervous about how much to use my heart. But overall, I could not be happier with my progress post op. For those with upcoming surgeries, I have you all in my thoughts, and keep a positive outlook. I came to acceptance, and was not terrified, and my outcome has been fantastic. I hope you all follow in my footsteps!!

Someone I met on this site just stopped by as she was doing her pre surgery testing today. It was sooo nice to meet you Diane!!! I will be thinking of you!!!

Had surgery on Mon at Mt Sinai with Dr Adams and his outstanding team. Doing well and will go home Sat. Breathing tube, no big deal. Chest tubes, probably the most pain I've ever experienced when they ripped those puppies out. Luckily I now feel great and can walk without the PT. Getting there!!!

My daughter and I at Metlife Stadium for Coldplay. 12 hours from now, I'm on a train to NYC and Mt Sinai to check in for surgery!!!!

I can't believe my surgery is only 5 days away. This has certainly been an interesting 4 months. I cannot wait to be done with it. I think if the hospital called me today and said there was an opening tomorrow, I'd take it! Planning a fun weekend, then one last work day on Monday to square away all my projects for others to look after. Thanks to Adam for starting this website and to all the supportive folks here encouraging and helping each other. It really is invaluable to know there is an entire community out there who knows exactly what I'm going through right now.

My surgery is 9 days away. I spent a week at the end of June in the Poconos at a house on a lake, just returned from a 3 day scrapbook retreat, and next weekend will see Coldplay at MetLife Stadium. Celebrating to the maximum extent possible the wonderful life I've been able to experience up to this point, and the next chapter post op!!

My surgery is coming up on July 19th. I've been looking at the news feed to see what folks are experiencing post op. I have to say its a little depressing. I'm trying to prepare myself mentally for a long road and to not expect too much too fast. But the list of possible complications seems endless. I'm also looking for folks who had their surgery at Mt. Sinai. I see some hospitals allow family to spend the night on the floor and to accompany patients to the pre op area on the day of surgery. Mt. Sinai does not allow this and also states cell phones and e-readers are also not allowed. These last two "rules" seem a little overly restrictive. Any patients out there who had their surgery at Mt. Sinai?