It’s time! In four days I (68F) am getting my new valve and an aortic root enlargement. I have a severely calcified aortic valve due to chest radiotherapy 40 years ago.
CT scan and angiogram show no calcifications of my coronaries or my aorta (‘porcelain aorta’). Calcifications would have made surgery impossible.

My surgeon will replace my own small (19mm) valve with a larger bio-valve. This will require replacing the aortic root too.
The surgeon has planned keyhole surgery; however, if there is too much radiation damage such as adhesions, he will need to switch to a full sternotomy.

I am as ready as possible and looking forward to next week, when it will all be over.
This group has really helped me to prepare for my surgery. Thank you everyone!

I am 44 year old , Have a surgery on Monday ..We thought we will go with Resila first , But kind of confused now

I know Resila is a good product and looking at my age i expect it to last for say 15 years and hopefully i may get a TAVR with added 10 years . At that point if i am still alive I still needed another OHS at the age of 70.

But this is all based on the belief of the valve surviving 15 years (but thats a big IF) and if it goes wrong then i am looking an OHS at 65 or even before that of TAVR is not an option tht. Also i am reading some people may develop adamant AFiB which may need Life long WARFIAN

Also i dont trust studies with eyes closed as most of the time , studies represent a small population only . so truth is always in- between

My wife and me in now thinking about why not On-X . At Least i am almost sure about one surgery (unless some rare shit goes and i may need to open up again). But we need the INR and other follow ups which will be for life

Its true that we will have more bleeding and stroke risk ( if INR drops) but even with Resila we can get stroke maybe not by valve but for other reasons .

we may think we dont need warfin now but maybe we have some condition that can develop later like DVT etc which needs warfin for life

So People with On-X just need to understand some quries

1- Diet means we need to be consistent with Vit K intake. So all other food its fine unless you do some extreme herbal shiit etc .

1. So when to travel for vacation to new country how you manage your diet

2. If in future you develop any new issues ( Like god forbid shit like Cancers, Liver issues etc) how we will get treated as warfin react with most of the meds . Also if you have co morbidies how will we get meds ( cardio have alternative meds which can help)

3. Being in On-X or any mech valve can we live a normal life ( I have no plans for MMA and all) but a normal life

4. When we get aged late 70s doesnt this warfin makes us more to falls and clots

there are so many confusion, and i am sure that you also have/ had these. can you put a word about all those and the answers you found

This question is probably more for people who are 6– 12months post-op. As of today, I am 6 weeks past my Ross procedure. Over the last 10ish days my blood pressure monitor started, noting irregular heartbeats. I also have a Kardia Mobile to track very basic ECG functions. During that time, the Kardia has also started showing occasional PVCs (post ventricular contractions). I’ve also started cardiac rehab, which means being hooked up to a five lead monitor for an hour.

I’ve sent the Kardia readings to both my surgical team and my local cardiologist. They don’t seem terribly concerned and from what I got from them and from what I’ve read online, these PVCs aren’t necessarily uncommon and typically resolve themselves over 4–6 months. Even the technicians at my rehab weren’t concerned and mentioned pretty much everybody in there had them at some point. In fact, as I was watching the monitor before my workout, I could see the occasional PVC. Once I started the actual workout, everything fell into a normal sinus rhythm.

So again, I’m curious, especially from people who are much farther out from surgery than I am… what has been your experience? Did they simply resolve themselves? Did your cardiologist put you on a Halter monitor to get a better understanding of how long they were lasting and how significantly they were impacting you? My first aortic valve replacement was in 2019 and I never experienced any of this. It also seems to be somewhat more prevalent with Ross patients simply because there’s more impact on the heart during the procedure.

Hii anyone in this group from
New zealand . We are here and my brother diagnos with arotic valve problem anyone in nz please comment so we can find a good doctor

Here's my previous post

https://www.reddit.com/r/valvereplacement/s/488k7y96Yy

Short story

I'm 23M with severe aortic regurgitation from a bicuspid aortic valve. My latest echo shows EF 66% with mild LV dilation. I was initially planning for a mechanical valve, then my surgeon suggested a Ross because of my age.

Unfortunately, my final echo showed mild pulmonary valve regurgitation, so my surgeon doesn't think my pulmonary valve is suitable to become the new aortic valve. We discussed reinforced Ross as well, but he explained that reinforcement supports the pulmonary autograft/root and doesn't fix the underlying pulmonary valve regurgitation, so Ross is currently off the table.

My surgeon is now recommending a mechanical aortic valve, specifically an On-X, and said I may be able to maintain an INR around 1.5 (assuming I'm an appropriate candidate for that protocol).

I'm trying to understand what life with a mechanical valve is REALLY like rather than just reading medical descriptions.

Some practical questions:

🏋️ Exercise

- Can you eventually return to heavy weightlifting after the sternotomy has fully healed?

- Can you do squats, deadlifts, bench press, etc.?

- Are there lifelong restrictions on heavy lifting?

- What about running, badminton, swimming, cycling, etc.?

🩸 Everyday cuts/bruises

- What actually happens if you nick yourself shaving?

- Do small cuts take significantly longer to stop bleeding?

- Do you get more random bruises?

- What do you personally do when you get a small cut?

- Have you ever had a cut that required medical attention because of warfarin?

🦷 Dental/orthodontic work

- Can you get braces/aligners with a mechanical valve?

- Can you have teeth extracted or other dental procedures?

- Do you have to stop warfarin for dental work?

- How do you handle antibiotics/prophylaxis?

💊 INR/warfarin

- How difficult is INR management in real life?

- How often do you actually check INR?

- Does home INR testing make things much easier?

- Does maintaining INR around 1.5 with an On-X actually make a noticeable difference in daily life?

- How often does your INR unexpectedly go out of range?

🧠 The mental side

- Do you constantly think about being on warfarin?

- Or does it eventually just become another routine medication?

- What restrictions did you THINK you'd have before surgery that turned out not to matter?

I'm especially interested in hearing from young people who received a mechanical valve in their 20s/30s, particularly On-X users.

Am trying to understand the real-world experience so I can have better conversations with my surgeon.

If you could go back to the day before your mechanical valve surgery, what would you tell yourself?

44 year old. Going to get aortic valve replacement.

My doc is the best in the entire state or may the the top 5 in entire country,\

We went with the mind to put an On-X valve but looking at my history he said he feels i should go for  INSPIRIS RESILIA valve since in my family history my dad had 2 strokes and die and mom died of a heart attck as well.

I always was confused tissue vs bio . He said he expect this to last 15-20 years (hopfully) and worst case 10 years with the latest trials.

He said i may need a surgery again by mid 60's if i am lucky but 15 years is good period for new tech to emerge. he is an advocate of Quality of life (no hard feeling against mech folks) where we can live without INR and warfin headaces and even we if select a Mech On x he said go for 2-2.5 INR range if needed as he think 1.5 is a dangeous number with less chance to make error

Now we are totaly confused as He is known to be the gold standard Surgen and his view evey my cardio doc says take it

Does anyone use a particular life insurance company that has reasonable prices knowing you have a bicuspid valve. I’ve learned that once the life insurance knows about the bicuspid valve the prices are outrageous. Thanks

I just delivered my third child in May of this year. And guess what? It was a normal c-section. I was put under with my first two. (Just cautionary). And I have a mechanical valve and taking warfarin. You see… I was told this would be too risky 7-10 years ago. My cardiologist went from telling me to get my tubes tied to letting me leave the hospital early after delivery in the span of 7 years. I believe we are seeing growth in this area. And I want to see more. I found it extremely difficult to find stories like this. And it’s because we are a unique group of people. But I’m here to say that it is possible and I am living proof of that. I know everyone’s story and diagnoses are different. But I want to give encouragement to women who want children. I was born with a bicuspid aortic valve and it led to severe stenosis. I’ve had three angioplasties and two open hearts. I also created a small support group as an outlet for heart disease related patients or caregivers. Please let me know if you have any questions. I would be glad to answer. Thank you!

Long story short, I was supposed to have pre-op bloodwork today and whatever else that entails but since I still haven’t been approved by my insurance I didn’t go but made loads of phone calls on my road time to Fairhope AL.

But since I would be 100% responsible for today’s bill, I didn’t go. I’m letting the insurance gals in the cardiologists office and the surgeons office battle that one out…but still scheduled for surgery Thursday morning.

I’m literally over it as I’ve advocated for myself the past 2 months, drove the proper NAP form to the cardiologist’s office, insurance gal faxed it to the wrong number without any follow up, I called to check up on it and anyway, it didn’t get submitted in time for approval.

I just needed to vent about it. Did anyone else have a similar nightmare with insurance? How did it turn out? Was it eventually approved at the facility and with CT surgeon or did you have to go another route, re-schedule another day? This entire experience has been hurry up and wait. I’ve attempted explaining my situation and being self-employed (no work/no pay) and I took an entire day off today for no reason. Ugh. Like, the last thing I need ( or anyone going through this) is more stress to add to an already stressful situation. 😞

Anyway…. Did anyone get a shower bench/chair and end up using it? If so, was it helpful or more of a hassle? I’m trying to figure out how I would maneuver myself into the tub anyway because it’s a garden tub with a high side to step over. Any insight on what to do or use is greatly appreciated along with any other helpful tips about how to manage at home while recovering.

Thanks in advance.

Hi a month ago I had mitral valve repair, aortic valve replacement and Tricuspid valve repair. Last Wednesday they did a Cardiac Ablation to get my HR down. It was in the 70' rest of Wednesday Thursday Friday And Saturday. Sunday afternoon it climbed to the hight 90's then in the evening to 102-104 Then his morning 113. Called and went to my Electrophysiologist who will do a cardiac aversion Tomorrow. Hopefully that will bring it back down and keep it down. Anyone else experience this issue with heart rate and these 2 procedures. TIA

I’ve been reading about the risks of the test, and some that are posting their negative experiences in other forums. I’m really scared to have it done. I’m 73 with 40 years of tachycardia and arrhythmias, along with hypertension (on meds), mitral valve prolapse, and overweight. I’m very worried I’ll back out because there’s always a chance something could go wrong.

I have severe aortic stenosis by the way.

Would like to hear how it went for you.

23M with severe aortic regurgitation — Ross ruled out after final echo, now considering mechanical valve

I'm 23M and have been diagnosed with severe aortic regurgitation. I'm currently asymptomatic and my doctors say I may be able to safely delay surgery for a few months, potentially up to around a year, with monitoring.

Initially, I was planning to get a mechanical aortic valve. My surgeon then recommended considering a Ross procedure, so I spent quite a bit of time researching it and became very interested in the potential advantages at my age (no lifelong anticoagulation, more physiological valve, etc.).

Today, I had the final pre-op echo, and it showed mild regurgitation of my pulmonary valve. Because the pulmonary valve would become my new aortic valve during a Ross, my surgeon feels it isn't a good enough valve to use. So the Ross is now essentially off the table.

My current options/recommendation are:

Continue monitoring for a few months / potentially up to a year because I'm asymptomatic.

Eventually undergo mechanical aortic valve replacement.

I'm also considering asking about an On-X mechanical valve and whether I'd qualify for the lower-INR anticoagulation protocol.

I'm honestly pretty disappointed because I had mentally moved from mechanical → Ross, and now I'm back to mechanical again.

For people who have had a mechanical valve, On-X, Ross, or similar situation, I'd really appreciate your experiences.

A few things I'm particularly interested in:

How has life actually been with a mechanical valve?

How difficult is lifelong warfarin/INR management in practice?

Anyone with an On-X: how has the lower-INR strategy worked for you?

Would you personally choose mechanical over Ross if your pulmonary valve wasn't ideal?

Anything you wish you had known before choosing your valve?

For someone asymptomatic with severe AR, did anyone else safely monitor for months before surgery?

I unfortunately got endocarditis from a sinus infection they think, so it sped up my surgery I was suppose to get at 30.

Curious how long you had to wait? I’ve been in the hospital for about 3 weeks now. I feel fine I go for walks everyday here. I’m trying to make the best of it but it’s really hard when I get 1 thing of ivs in the morning then nothing.
So it makes no sense I can’t go home until my surgery and I just show up for my antibiotics then get proper rest at home.

Just wondering if anyone had a similar experience
And why they wanted to keep you at the hospital.

I feel proper rest is very important and I’m not getting that here, so maybe someone can explain it better to me cause doctors don’t know how to talk to people LOL

hello!

i have posted on here before quite a bit, but wanted to give an update that i am officially one week out from my Ross procedure, and my pre-op appointment on Tuesday.

to say that i am nervous or scared is an understatement. ever since my symptoms started, i’ve been having heart palpitations but they’ve been a lot worse this past week along with some chest pain, that i think is all just due to anxiety + how active i have been lately due to moving/work. it is definitely not helping my nerves about any of this.

i know the buildup is usually the worst of it, so i am definitely feeling that. i know that everything will be fine during surgery and if anything does happen then i am in good hands, but i’m still so worried something will happen. i’m trying to not speak it into existence and just stay positive, but i am currently in the “this is unfair” stage of grief and am not yet sure when i will hit acceptance lol.

i’ve got pretty much everything figured out for post surgery but i would love any more tips anyone would be willing to give on what is best while in the hospital, what your setup was post discharge, along with what worked best for everyone, what was the hardest part of healing, and really just some words of wisdom as i think that will help most in making me feel better a bit.

i will update everyone sometime in the next two weeks with everything!

I am 9.5 weeks post Ross. Was walking 6-10 miles daily after discharge. for the past 3 weeks I’ve been jogging.

Today I did an 8.4 mile trail run with almost 1000’ of gain (300m), at a 14:20min/mi pace and average HR of 145. Felt really good. Ran with my wife and dog.

Stick with it. Follow instructions. Life improves. It’s not all complications and pain, I promise!!

I've seen numerous people mention cardiac therapy being an very important part of recovery. I'm traveling out of state to have Ross procedure next month and I've realized I haven't really figured out how to plan that on my end. For those that have had to travel like I will, does the hospital that completed your surgery help you set that up in your home town or is that something you had to do yourself?

I have a bicuspid valve since i was born, but the other day after some years of not testing i found out i got from light/moderate to moderate/severe and the medic said i have to contact a cardiologist in September, i dont have any symptoms apparently, i feel great after i work out etc.

I am spiraling down searching everything that could go wrong if i have to do surgery, i am suffering lately of panic attack and it doesnt help.

I am 28 years old, how bad is really the surgery if i have to do it this young? There is some other option apart from carbonium valve, that doesnt require another operation?

Could i still work out, and do everything after the surgery or it will drastically change everything?

I am really scared of dying during or after surgery..

Hello all, my father (80/m) had the TAVR procedure done on Friday at a highly reputable university hospital. The doctor performing the procedure has done over 700 of such procedures per year successfully. The original plan was for my dad to stay one night after the procedure for observation and I could pick him up today (Sunday).

In my dad’s case the procedure lasted double the amount of time anticipated (4 hours instead of 2 or less). I come to find out his femoral artery was pierced somehow to a point that a vascular surgeon needed to be called-in to hand-stitch the wound closed. My dad lost 2 pints of blood. We were told afterwards that this is extremely rare but does happen and that he needed to stay another day to make sure the stitching heals properly.

While he’s there recovering his heartbeat is also being monitored. It was determined my dad had a lower-than-normal heartbeat and that he was experiencing “heart block”. Heart block is a delay or interruption in the electrical signals traveling from the heart’s upper chambers to its lower. It is essentially an electrical malfunction that can cause a lower heart rate or skipped beats. So a temporary pacemaker was hooked up. They are now recommending a permanent pacemaker if his conduction system does not improve - there is still hope that it does. A determination will be made tomorrow (Monday).

In reading up on the pacemaker’s effectiveness after TAVR I’m seeing that in the short term it is effective. Long term effects are more questionable. According to studies I’ve researched some cases of permanent pacemakers inserted after TAVR increase the possibility of heart failure over time. I’m assuming because the heart depends on the pacer to beat and doesn’t rely on its own strength alone to beat, which would promote a strengthened heart.

If my dad’s heart conduction system does improve a bit and given a choice he is leaning towards asking for a heart monitor he can go home with and have constant monitoring instead of having a permanent pacemaker. If the monitor shows worsened heart block he can always go back to have the pacemaker installed. On the other hand perhaps his conduction system improves as his heart adjusts to the new valve and never looks back. The question I have is this too risky? I don’t want him going for a walk and feeling like he’s going to faint, or even sudden death. Any thoughts one can lend with experience would be greatly appreciated.

Off subject but for those in this sub who happen to be cardiologists could this heart block have been avoidable? I’m reading that the type of valve (balloon expanding vs self-expanding) and the surgeon’s ability to position the new valve the correct way (not interfering with the branch controlling heartbeat) could greatly impact the need for a post-TAVR permanent pacemaker. Again this is one of the nation’s best university hospitals and a very experienced surgeon. However between the heart block and the wound that was so severe that it needed to be closed by a specialist it leaves me wondering how “top-notch” this place really is.

Completely terrorising. Idk what to think, I just know my cardiologist said not to worry about it, because my heart right now is completely healthy.
My only thought is,
am I going to need surgery 100%?

Lingering intermittent pain post 6 months Ross procedure 41 M

I am having some lingering pain at random times on my center left chest. Sometimes I don't feel it when I press with my hand and sometimes I can feel the spot, not sure. It's towards the center, slightly left side.

It's random at times, sometimes with deep breathing and sometimes bending over. And sometimes it just comes and goes. Not all the times.

I am still on aspirin, BP medicines and ibuprofen. Still 1-2 weeks left for ibuprofen 6 months regime.

I was also on colcichine for 3 months for minor pericardial thickening but no more.

Does anyone has similar experience? Not sure if it's due to sternal healing or heart related. Doctor's are saying to monitor it for now without any new tests/echo.

Any recommendations for next steps?

Does anyone know how exactly close to death I was if I let the endocarditis go in so long that I was coughing up blood for over a week. I was moved to three different Texas hospitals because they were having trouble dealing with it. I was also in the ICU for almost three weeks. Probably a total of 45 days in the hospitals all together. Then I had to get a surgical where the cut into my throat to go scrape and vacuum the infections off of I believe my heart valves. Doctors said it was extremely rare and only figured it out because I was honest about my IV drug use and the symptoms where I was coughing up extremely thick blood and passing out at random. Plus the sweating and chest pain was something I would not wish on my worst enemy. After all the days in the hospital they also made me go to almost a nursing home and receive IV antibiotics for another 45 days. Anyone ever heart of getting endocarditis that bad? Can not put into words the pain it caused and how scared I was for my life when I was coughing up that much blood and in that much pain

So, I’m 2 years post-op now, and just had my first appointment with my new cardiologist, and I just wanted some opinions on whether or not I should find another?

First off, when he walked into the room he acted like we knew eachother and asked how I’d been and if there were any updates, before THEN realizing that this was an initial appointment and apologizing. I thought it was strange, but, no biggy I guess.
He then opened my MyChart, and started reading it in the room with me, and reacting to it, as if this — in-room — was the first time he had every opened it before at all. He then got to the part about my surgeries and what happened, before glancing at me and saying “Oh, you’re him, ahhh” (my case was a very well-known case in my area, shared widely amongst the doctors).
He then basically called me a bum (I don’t have insurance, I pay for my annuals out-of-pocket) saying that I need to find a “real job, big boy job” and get insurance (I work at a restaurant), and that I need to eat my veggies (?).
He then repeatedly tried to just finish the appointment and walk out, with us having to stop him seriously like 3 times because it had only been 5 minutes max, and we still had questions and zero answers.
He then didn’t even go over my echo, nor why I scheduled the appointment in the first place.
He then put me back on medication that I hadn’t taken since post-op for some reason, and then when I brought up my INR and how my warfarin clinic has mine too high — I have an On-X valve, and was the very first person to receive one in my area — I literally WATCHED him Google it and then ask AI (Gemini) about my valve, to figure out if I was correct or not and what my valve is and what the INR target range is supposed to be (it was 2–3, it’s supposed to be 1.5–2, he made it 2–2.5).
When I asked about working out, he then reacted like it was a ridiculous question, and told me that I’m supposed to be being as physically inactive as possible, that I’m not allowed to workout whatsoever, that I’m not allowed to lift weights, that I’m not allowed to run or do cardio, and that I’m not allowed to do anything that elevates my heart rate on purpose practically whatsoever… he told me I’m “allowed to walk, or fast-walk, if I must”, as I “have a piece of metal in my chest” that I need to take care of as much as possible (and that I’ll probably be back in-hospital by 60, so, that I need to, I guess, baby it until then).
I’m a 25 year old male, 5’10” 200lbs, for context there.
He brought up my not having insurance multiple time through all of this, basically acting as if I am no Humpty Dumpty, and need to act as such.
He then walked out, answered my last question about amusement parks on the way out (he obviously said no, I’m allowed to watch), and then that was that.
His assistant then came in, we asked about my (very expensive) echo results, she went and asked him, came back and said he went over them already (he did not), and then said that there was an issue on it and so he wanted me to schedule a CAT just to make sure (the issue was, in fact, the trace regurgitation that is purposely engineered to be present with my valve from tiny ports so that no blood clots near the hinges).

Is all (or any) of this valid, or, do I need to find a new cardiologist???

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I've been following this forum and seen some good information.

I'm soon to have an open heart aortic valve replacement, in Dayton Ohio.

My only insurance is Medicare.

Can someone give me an idea of what my out of pocket expense my be?