r/valvereplacement

Hey everyone! I am a 30 year old female who was born with a bicuspid aortic valve, without stenosis. I see a cardiologist every 2-3 years and I was told that I may need surgery in my 50s-60s but no guarantee. I’ve been an anxious person my whole life but it’s been higher lately due to stress. I work a sedentary job and I want to lose 30-50 lbs.

I gained weight from previous pregnancy and previous anxiety medication. I sometimes have high bp at the doctors due to anxiety. I carry a lot of my anxiety and sheas in my neck and shoulders which makes it hard to breathe, and I also sometimes get heart palpitations or double beats and a skip.

I’ve seen the cardiologist for these symptoms between appointments before, and nothing was ever wrong. Anyways I’m wondering if anyone has had anxiety as well and how to cope. I’m always worried it’s my heart, even though I know I’m under stress. Thank you!

Edit: I’ve known for years that surgery may be down the line. I was last seen in 2025 and I’m due again in 2027

How many members in this group had unicupsid arotic valve
Can anyone comment when they diagnos and at what age u need surgery??
This valve is very rare am 26 years old right now in modertae stenosis 30mmhg mean gradient can anyone share their experience because i rarely notices unicupsid always bycupsid which is comman.

Hello, I am a 30 year old female with TOF about to get my pulmonary valve replaced in a few days. I have had 3 open heart surgeries all before I was 12. The last one was in 2009, and it was a pulmonary valve replacement. This time around they will be doing it via transcatheter and I am grateful I don't need a 4th open heart surgery. My pulmonary valve is regurgitating about 50% as of April.

My quality of life for about 9 months has been terrible. My daily symptoms have been extreme shortness of breath, very fatigued (napping during the day), persistent nausea, edema, chest pain, palpitations, very anxious, and irritable. I feel sick and tired all the time, the nausea is out of this world some days. I am unable to exercise at all since April, and I am typically a very active person. I have been feeling like this for many months now and worry that the procedure is too late and that my heart, body, and mind will not be able to heal and recover fully. How long has anyone else gone on feeling this badly? How long have you had to wait for this procedure? How was recovery? Does anyone have experience with persistent nasuea?! Sorry for all the questions, I know everyone is different and has a different experiences with TOF, but I am so nervous and wondering if all of this is normal before PVR.

I am also very anxious about the procedure itself. Looking for words of inspiration, or similar experiences, similar symptoms before PVR, anything to soothe my nerves because I feel very alone right now. However, I am so excited to finally get this procedure done. It's been a long time coming, and I just want to feel healthy in my mind and body again!

Just got my first echo results 4 months post surgery. While in the hospital the surgical team measured the aortic root at 3.9cm. The test did say technically difficult. My echo I just did is showing 4.3cm and is showing as technically fair. I let the surgical team know and now they are reaching out to my cardiologist to get the actual images to see if the root was measured the same, compare images,etc

Anyone else experience this?

Hi all! I am a 37F, had two OHS at 6 and 8 to remove a subaortic membrane and now have severe aortic stenosis and moderate regurgitation. I am having a surgical consult in a few weeks and we are discussing both the Ross procedure and a mechanical valve as valve replacement options. What questions would you suggest or wish you had asked your surgeon during the planning phase of things?

Here it is at midnight. I have been suffering from old man syndrome for as long as I can remember and am in bed and asleep by 9:00-9:30 every night. But since having a Bentall procedure and having an On-X valve installed I am starting to think sleep is a UFC match that I am losing repeatedly.

Recovery has been a breeze compare to what I thought it was going to be. But this valve is driving me nuts. After doing some reading I guess it’s a combination of the valve and the Dacron graft that causes an echo effect.

It’s not the “sound” that is killing me though. It’s feeling it. I am laying in bed trying to sleep and when I inhale I feel it start thumping like it is getting ready for a drum solo on my neck. I have tried melatonin, I have tried a pillow on my chest, trazadone, but still team no sleep.

Just for reference this will be my 5th week post surgery. Any ideas or suggestions? If you can help me sleep I will love you long time!

Hello. I'm 53, and I'm hoping to hear from anyone who's been through something similar.

I was diagnosed a while back with:

• Severe aortic stenosis
• Heavy calcification of the aortic valve
• Bicuspid aortic valve
• Dilated ascending aorta, 46mm

I've been in a bit of a daze since. I thought I'd done everything right. Ate well, trained consistently, hardly ever sick, never needed medication, rarely saw a doctor. I was cautious enough that I didn't even take the Covid vaccine. And I still ended up here. I've been extremely angry about it.

One thing I've noticed: the more I think about it, the worse I feel. The more I carry on the way I did before I knew, the better I feel. I haven't trained in a while, but I feel like I could pick up right where I left off. Then I read more about what these numbers actually mean and start thinking I could drop at any moment. It swings between those two.

Yesterday I had my coronary angiography. My arteries came back clean. The cardiologist put it as "you're in perfect condition, apart from what you were born with." There are moments now where I think I may as well eat and drink whatever I want.

That's the mental side. Here's what I'm actually hoping to learn from people who've been through it:

Recovery and training. How was recovery for you? Did you get back to training hard, or is that off the table for good? I'm not asking about walking round the block, I mean real loaded work.

Options I may not have found. I don't want my chest cut open, though I'm aware that what insurance covers and what I can afford may be two different things. I'm in Greece. My understanding is there are approaches through the groin or between the ribs. For anyone who had one of those, how did it go, and were you actually offered it as an option or ruled out?

The Ross procedure. I found this one and it sounds like the option most likely to get me back to where I was. It also sounds like the most complex and the highest risk. Has anyone here had one? How did you find a surgeon, and how did you satisfy yourself they'd done enough of them?

Mechanical valve. I'd rather not be on warfarin for life. I've read that cayenne pepper has blood-thinning properties, and I already take it daily. I understand it's not the same mechanism, but is there anyone here managing a mechanical valve on anything other than warfarin, or any combination approach your cardiologist has been open to? And for those on warfarin: how much does it really change day-to-day life and training?

Tissue valve. I've read they last roughly 10 to 15 years. Does that mean you're simply doing the whole thing again in your 60s, or is it more complicated than that?

Thanks in advance for anything anyone can share. Information, options, or just how it went for you. Any of it helps.

PS. Reddit disclaimer: I'm well aware most people here aren't medical professionals, and I won't be taking anything said here as fact. I'm just inviting people to share what they went through.

Questions to ponder:

Here we discuss the heart valve replacement process: which valve, and how best to decide the details & methods of your surgery?

But how were you diagnosed? How did you find out?
And after that, how long until all the “workup” tests began?
How long from your diagnosis until your surgery?
Thanks.

BAV with aneurysm and severe aortic regurgitation

I am officially less than twelve hours away from my procedure! The surreality of it all is kicking in and it still does not feel like this is happening to me. It's a little weird knowing that, this time last year, I was the happiest I have been, and now my life is about to get turned upside down for a bit.

I feel pretty okay all things considered (BIG step-up from me having panic attacks every night for the first three months of the year over all of this) but am still having moments of "everything that could possibly go wrong is going to go wrong and I am not going to make it out of it." I keep having to tell myself that there is a less than one percent chance something will happen and, even if something does, I am in the best possible place (and also won't know if something actually happens, although I do not know if this is a comfort or not).

I really just hope that everything goes okay, and I won't need another surgery for at least twenty years. Also hoping that this fixes my heart palpitations because dear LORD has that been the worst part about all of this.

Given everything goes okay, I should only be in the hospital for five days so I hope I will be home by the end of the week. Anyway, I will hopefully give an update sometime later this week.

Has anyone here been diagnosed with this congenital heart disease?

I’d love to hear about your experience. If you’ve undergone open-heart surgery, how did it go? How was your recovery, and how are you doing now?

Thank you in advance for sharing your journey. Your experiences would mean a lot to me.

Hi,

I have a functionally bicuspid valve. It also has a mild to moderate leak. I’ve played soccer and tennis for years. My cardiologists said I could keep playing.

I’ve been out of the game for a while now (2 month since diagnosis) and want to get back into it. But I worry about it every time, and that’s actually what’s keeping me from returning. Sometimes I’d rather go for a jog instead.

How about you guys? Any Tips or ideas?

Cardiologist couldn’t care less about what I’m going through. I know what will happen if I don’t, but that’s my choice. I just feel like my rights and my feelings are being dismissed.

Maybe I can face it in time, but not right now. I just feel so alone and lost.

I forgot to add: I lost my husband of 30 years in April. It was a devastating experience.

Cut my finger with a vegetable peeler. Anyone know the procedure for antibiotics for after surgery wounds, it has been 2 months. I know I have to take them when I have dental work just wondering about something like this never thought to ask. Going to call the doc tomorrow but just wondering what they have you do in this situation. I got the bleeding to finally stop, Elliquis really works. Poured the peroxide to it before I gauzed it up. Going to put the triple antibiotics after a little while longer, that whole bleeding thing was quite much.

I’m consumed with thoughts about needing surgery one day. I started therapy for health anxiety a few weeks ago and it’s helped some but I don’t know when I’ll need surgery. I’ve been monitored for 8 years since my diagnosis and after having my son I’ve been riddled with anxiety. I just want to hear about people coming out the other side and this not being your entire personality

20(M) born with a unicuspid aortic valve so surgery early on was inevitable. I have pretty bad anxiety so the months leading up to the surgery were very difficult as I was trying to determine if my symptoms were anxiety based or heart based and went to the ER and discharged the same day 3 times cause of that. Symptoms included irregular heartbeat/ fluttering, shortness of breath, feeling like I'm going to faint, sharp pains on the left side of my chest under my left nipple, and once a sharp pain in the center of my chest which was one of the ER visits. On the night of the surgery my blood pressure was 145/83 and only got 2 hours of sleep just because I was so nervous. But on the day of, knowing it was going to inevitably happen I was much calmer. I came in 2 hours early as they prepped me for the OP room and sent love to my family before heading in. shortly after I was put under via IV and woke up moments later in the ICU thankfully not intubated as my family came in one by one to greet me. Pain wasn't really a problem on day 0 but I had 3 chest tubes that needed to stay in for a couple days so those became a huge problem for me. After getting not much sleep night 0 just because of broken sleep from vital/pill checks, I woke up day 1 with pretty bad pain in my back and whole lung area which really started bothering me because slowly every breath i took had to be shorter to prevent pain. Pain in the sternum wasn't much of a concern. Pain killers were barely helping with the pain as the pain in my lungs and back progressively got worse, when i informed the nurses and doctors they said it was normal because the chest tubes touch the lung walls which have lots of nerves and push against the back as they bend. I went to bed night 1 breathing really shallow and in quite a bit of pain so i got less sleep than the night before. Day 2 was a living hell for me, when I woke up i noticed the pain in my back and lungs was significantly worse and could now only take very small breaths to reduce the pain. I told the nurses that I need them removed today because the pain was too great and they responded they couldn't because there was too much drainage but they could get me a nerve block to numb the pain for 8-12 hours. About an hour later the anesthesia team came in and gave me the nerve block numbing only my chest wall which was not the area where the pain was as it was in my lungs and back but they said they couldn't do anything about that just more pain meds so it didn't do anything to help. about 5pm of day 2 and the pain was getting unbearable, i couldn't even breathe lightly anymore to prevent pain and every breath felt like a knife to the back with a pain level of 10 and i told them i at least need some of the tubes to come out because i can no longer handle it. they said they could do that but will have to leave 1 in for remaining drainage. However it was time to move to the recovery room which was the peak of the pain. Every breath i took was followed by an audible ooo exhale as and anything deep felt like slicing deeper and deeper the deeper the breath. they needed me to stand up and move to the wheelchair so i can be rolled to the recovery room. they gave me a pillow to brace, i started standing and i was basically screaming at this point from the effort, the breaths i had to take to stand, and the pressure on my back and lungs. after about 10 excruciating minutes of moving to the new room and getting settled in, they told me it would be another 3 hours before the 2 of the 3 tubes could be removed so i just had to sit and wait which was the most pain ive ever been in. after those 3 hours of horrible pain with very very shallow breathing passed they finally came in and removed them which there was instant relief and i could finally take decent sizes breaths without horrible pain. I rested the most night 2 now that i could breath and the pain was manageable at like a 6/10. day 3 i noticed a strange popping feeling in my left chest when i took deep breaths. i informed the nurses and doctors and they said it's likely from the lungs because they were collapsed during the surgery and i needed breathing exercises to bring the back to full function. on the afternoon of day 3 the final tube was removed and i was feeling better. Pain was manageable for the rest of the stay and the day to day consisted of waking up, going for walks, doing breathing and arm exercises, eating (which i forgot to mention i couldn't because of the pain till day 3), then sleep. After passing stool i was released on day 5. I believe the trauma from the breathing tubes is still pretty major because on the drive home i could feel every bump hurt more in my lungs and back than my sternum. after getting home shaking from the pain of the hour long car ride i went straight to bed and day 6 and 7 have consisted of walking more, and pushing my lungs to get deeper breaths though still one problem persists which is the back and lung pain, and popping/ sharp pain when breathing deeply one i reach a certain point of the deep breath. I started writing this after walking up from pain at 3am on day 8 waiting for my pain meds to kick in and its now about a 4/10 and the pain is pretty equal between the sternum and lungs/back. The thing im most concerned about is the healing of my lungs and a timeframe for when that popping sensation will go away if any of yall have similar experiences. I also figured I would share my experience because I dont see many posts describing pain as bad as this and in much detail, sorry if i missed your post however! I am feeling much better health wise after the procedure, my heart rate is constantly high hovering around 95 - 105 but the shortness of breath/ dizziness are completely gone as well as my anxiety about my heart health for the most part. Feel free to ask any questions and I will respond if I have the time. take care 🙏

44 male AR, getting an On-X valve

just three weeks back i was running carefree and then I found out that my valve needs to change. Took 3 surgen opinion and they all said the same thing. All my doc said, now there is no symptoms but all the reading just very near the line where i need to get a surgery, So rather than waiting for symptoms to start better get operated.

so in the beginning all i know was i need to get mech or bio valve. I tought the answer was easy. Oh boy then i understood its not an easy decision. Then i stumbled upon this reddit group and i learned a lot of things which i want to put it here for new people who will be joining our party which no one wish to join

• For majority of us, There is no perfect solution. All we have is a two option, where we have to choose which price to pay.
• Option 1 we have a mech option where you open up once(apart from rare cases) and then we have the management mode of life long blood thinners. This come with its own burden of weekly or monthly blood checks, stroke and bleeding risk etc
• 2nd , We have the bio option which gives us freedom from blood thinners but in future we have the uncertain timeline of valve degeneration, calcification etc and then maybe a TAVR (if your valve allows) and then another OHS depending upon your age and luck (some valves run for 5 years some for 10, some for 15 etc) . Always remember if someone got X years doesn't means you will get the same. you may get more or less no one knows as each body is a marvellous machine which have its own unique way to work . Also some unfortunate ones end up taking warfin for other needs which make them get bad side of both worlds
• We do have ROSS but you need to be the right candidate and with right high volume ROSS surgen and hospital, It have its own unique burden for turning 1 valve problem to 2 , and some unlucky ones needs another set of OHS for one or maybe both valves.
• One thing i learned is don't take all the data eyes closed. For eg Resila data is more around 65-60 year age group ( so a young person cant take that data eye closed) where as ON-X 1.5 INR push has its own risk as well. also some of the studies are done by the firm itself which have its own bias ( at the end they need to sell their product)

So there is no right answer. the only answer is what you want for yourself. Do you want a mech valve and manage the know risk or you want a bio and manage an unknown timeline. Find answer to this and you will get the clarity you need. Remember this is your burden to carry. So take your time, do your research and then commit.

In the begnining i felt we the unlucky ones who need to make such tough decision. In one of my hospital visit i meet a young chap who has brain tumor. He can chose between couple of years of life where he dont do anything but the chances of paralysis grows as well or a surgry with a good chance of recovery but with its own risk of paralysis or even death. So we are not that unlucky

Just want to end this with a statement from my wife.

" You are getting extra time in this world via a new valve and there will be a price to pay. There is no free lunches "

Just got back home! Phew! What a tricky 10 days it's been. I had open heart surgery to replace my aortic root, ascending aorta and a mechanical valve (43F). Sometimes called Bentall procedure (although not in the UK it seems).

This was after a nasty endocarditis bout in March that caused an abscess near my root.

I had a stroke during surgery but that has resolved. It just affected my vision for a few days.

The first few days were very tough indeed. The drains coming out were unpleasant but not as bad I'd worried. I'd argue the pacing wires coming out were worse!

Each day I got stronger. It was noticeable. And once I was off the opiates then the weird visions and hallucinations went. Just on paracetamol now for pain relief. And some tablets for my heart (beta blockers) as well as the Warfarin, obviously.

My warfarin took about 6 days to get into INR range of 2-3. As soon as it got over 2 I was discharged, and will join the outpatient anticoagulation clinic here in Sheffield, UK for the next few months. Long term I hope to manage it myself.

I am a 44 year old guy. waiting for surgery on monday, I never wanted an Mech valve and wished and fought for a bio ( resila ) but a couple of points made me to go for On-X (almost decided)

1 : The initial strategy as to go for RESILIA , hope it run for 10-15 years and then a TAVR (hope for 5 - 8 years). By my 60s i will get another OHS and may go for the best one available that time . This was all based on a big IF i get X number of years, But at my age i think its a wishful thinking that i will get 20 years (maybe i am wrong)

2. I had a chat with a person who works in US especially in medical field . as per him don't take the data eyes closed . He said the data of bio-valves will always be skewed towards older people. even if they mention all age group, they make the study in such a way that they get good results. so always take the data with bag of salt. Also his wife who works in a cadac hospital said at your age (less than 50s) we don't even give the choice of bio only mech, unless the patient is adamant on it

3. my strategy of SAVR - TAVR and then a second OHS may look good on paper, but the reality of 15 years of valve - tavr and second OHS has its own high risk it's not easy for the surgeon to navigate the remnants of first surgery, remove the calcified valve and then remove almost struck TAVR and then do another valve fitting, this will scar the heart tissues which will give me problems onwards. Also with a TAVR i read its hard for any future stent or for some cardiac procedure that why they are option for 70+ as the life span is less than a 60s guy

also sometime in future TAVR maybe not feasible for me due to various reasons and i heard TAVR has a high chance of failure as well

4. I know going with On-x has its on set issues but what i understand is that most of them are manageable and can almost be worked up if we put heart to it. we may face issues in 70s but thats 25 years away and hope someone bring some new drugs which will help our INR. Also On-x is running in markt for almost 25 years and we have a fair idea of the product amongst all age groups.

5. All i am doing is to avoid warfarin but who knows in future i still need to get warfarin for maybe some other issues then i will be struck with worst of both worlds

I may be wrong but i tried my best to make bio work but at the end i am sure i need a second OHS by 60s or even worst 50s .

For people who opte RESILIA , I wish that this is the best product out there and hope and pray people who opted gets 20 years and they never had to look back

If you guys have any good points to add or criticize pls help me (I am shit worried of strokes and extremely anxious )

21F. I had a Bentall with mitral valve replacement at the beginning of August, and seemed stable enough in the hospital, but after arriving home I've somehow slithered to an average of 80/60 blood pressure and 100 beats per minute.

My average while at the hospital was 110/something and 80 beats. I could walk around pretty fine as long as it didnt involve running, but now I run out of breath almost instantly and need to sit back down again.

I have a check up in a week, but I want to ask: is this normal? What is my heart cooking? I'm taking all my meds as prescribed, so am I missing something else?

I went for some pre-op blood tests today. The woman was asking if I ever had a transfusion before, and then some related questions. I asked why all these questions. She said they need to know my exact blood type to have extra blood on hand for my upcoming procedure (SAVER + Maze one week from today).

That was a jolt that hit hard. I never thought about possibly needing a transfusion! This is all getting real and coming up fast.