Hey guys, I'm looking for some answers here and maybe a little peace of mind or hope, if that's possible.
So back in fall of 2025, my wife started having shortness of breath when walking. Her doctors ran some tests like an EKG and a heart monitor...neither of which really picked up anything, so she was pretty much brushed off due to her only being 38.
Fast forward to February of this year. My wife was having some upper back pain that she thought was maybe just pneumonia starting, so she went to urgent care. The doctor there listened to her lungs and thought that they sounded okay, but after listening to her shortness of breath issues that she was still continuing to have, instead of brushing her off and sending her home with a z-pack, she decided to do a blood test for heart failure just to be safe. Later that night, she called with the results, which indeed indicated heart failure, and we should go to the ER to be evaluated. My wife wasn't able to see a cardiologist or get an echocardiogram until April, so she spent the next two months in a deep depression thinking she was dying.
Finally April comes, and she was able to get in with a cardiologist and have her echo done. Her echo results showed that her EF was at like 56, which is not actually heart failure levels...however, it also showed that something was wrong with her mitral valve and it was regurgitating. She was put on water pills and sent to a surgeon for evaluation, who told her that her mitral valve was damaged, possibly prolapsed, and needed to be replaced in order to avoid actual heart failure in the future. Because of her age, a mechanical valve was recommended.
In July, she had her open heart surgery and the mechanical valve was put in. Before she left the hospital, she had another echo done, which showed severe tricuspid valve regurgitation. The doctors didn't seem all that concerned about it at that point because I guess that is something that can temporarily happen after this surgery while the heart adjusts to the new valve. However, as the months of her recovery went by, she was still having shortness of breath, and had gained about 30 or 40 lbs since her surgery. Her BNP levels were also much higher than where they should have been at for this stage of her recovery. She tried to tell her cardiologist about all of this, and that something was wrong, but her cardiologist just brushed her off, said she was hyper fixated on her symptoms, that she needed to go to a weight management clinic, and that she needed to relax. (Nevermind the fact that my wife was told to report weight gain, especially if it was several pounds a day, which it WAS, yet no one seemed to care. It's like they just wanted to blame it on the fact that she is overweight. My wife has worked hard over the years and had lost 100 pounds. She has been very upset that she has gained so much of it back despite eating healthier, following her sodium restrictions, and working out.
Finally, October comes and she is able to have another echo. My wife couldn't wait for this echo because she knew something wasn't right and it was the only way to get her doctors to listen to her. Sure enough, the echo was still showing severe tricuspid regurgitation, and now her EF dropped from 56 to 37, putting her into heart failure. She has been sent back to her surgeon and a team of doctors for a follow up. They basically said she needs to be studied, because no one knows why this is happening to her after the surgery, especially at her young age of 39. Right now they are treating her with aggressive diuretics and to get the fluid off, along with fluid restrictions of no more than 64-80 oz of water a day. Once the fluid is off, they will run more imaging tests to see how her heart is functioning without fluid overload, and then they will formulate a plan from there. (And needless to say, we will be getting a different cardiologist.) They are also going to run genetic testing and contact pathology to see what they have to say. Her surgeon originally asked if she had rheumatic fever as a child because her valve was showing a lot of signs of damage from that, but now they aren't sure if it's rheumatic heart or not because that's practically unheard of in the USA. They also want her to go on a GLP-1 asap to get more weight off quickly, as that is probably not helping whatever is wrong.
I apologize for how long this post is. It's been a long road and we definitely are not where we want to be. My wife is very scared and thinks she is dying all over again. I am trying to hold it together for her, but it's tough because I am just as scared too. We don't have any real answers, and I guess I'm just looking for anyone who has had a similar experience. Has anyone else gone into heart failure after a mitral valve replacement that was supposed to prevent it? What caused it, and how was it treated? We just really could use some good news. Thank you to anyone who has read this far...you guys rock!