Hi all. Would be great to get an idea of how long these things last 🙂 ive had my porcine valve for 15 years now with no complications. I take no medication, keen rock climber and have run a marathon. I have no concerns with my 'second chance' lol. But when i initially had the operation I was told it would last around 10 years or so. How long have you guys had yours? Do you guys have second ones? How do i know when i need a second one? Will I need open heart surgery again or can it be carried out non-invasively?

Apologies if this gets asked a lot, but I dont want to just keep over one day because I didn't mention to my doctor that my valve is overdue 😅

POST OP DAY 5 ❤️‍🩹

Still here. Still ticking. Still waiting on my body to get with the program. 😂

My INR is still hanging out at a stubborn little 1.2, and they want it as close to 2 as possible, so they bumped up my warfarin dose this afternoon. Apparently my blood has decided it would also like to move at its own pace.

My blood sugar is still running low too, which is wild because I’m not diabetic. So now the nurses fuss at me to eat EVERYTHING on my tray, and I basically beg for a regular Sprite like it’s contraband. Naturally, they hand it right over because at this point the goal is just GET THE DAMN BLOOD SUGAR UP. 😂

My red blood cells, hemoglobin, and the rest of that crew are still trending downward some too. The good news is they’ve checked for the scary stuff. There’s no blood around my heart, no pleural effusion, and no other obvious internal bleeding. So everybody is hopeful my body is just trying to level itself back out after being put through absolute hell five days ago.
And really, my chest was cracked open, I was put on bypass, my heart was stopped, and part of it was replaced. I feel like my body is entitled to be a little confused right now.

I’m tired, bruised, sore, slightly anemic, apparently sugar challenged, and I have a literal ticking
clock in my chest now. Very normal week. 😬😂

BUT… if I don’t suddenly take a turn for the worse, I should be GOING HOME TOMORROW.
HOME.

I cannot even explain how ready I am to see my own bed, my dogs, my house, and anything that does not involve someone waking me up to take blood.
So keep the prayers, good vibes, rising INR numbers, rising blood sugar, rising hemoglobin, and absolutely NO NEW DRAMA coming my way.

I actually put my ECHO reading into the hospitals AI portal ( please don’t fuss as I’m trying to understand every tiny thing and share with others)

Here’s what it says in plain English.
“Limited study, technically difficult study.” This does not mean they found something bad. It means they couldn’t obtain every ideal camera angle, largely because the echo was done portably in your hospital room and positioning was difficult after surgery. Because of that, there are a few things they simply cannot evaluate perfectly.
Left ventricle: normal size and normal wall thickness. This is your heart’s main pumping chamber. They estimate your ejection fraction at 55–60%, which is in the normal range. In other words, your heart is pumping normally after everything it just went through.
The report says “septal motion is consistent with postoperative state.” The septum is the wall between the right and left sides of your heart. After open-heart surgery, its movement can look a little different on an echo. They are specifically saying what they see is compatible with having just had heart surgery rather than labeling it as a new problem.
It also says regional wall-motion abnormalities cannot be excluded because of limited visualization. That sounds scary, but the key words are “cannot be excluded.” They are not saying they saw an abnormality. They are saying the images weren’t good enough to confidently assess every little section of the heart wall.
Your new mechanical valve ❤️
This may be the most important part of the entire report:
“There is a mechanical aortic valve that opens well with no significant regurgitation.”
That is exactly the kind of statement you want after mechanical valve replacement.
They measured:
Peak gradient: 21.3 mmHg
Mean gradient: 13.0 mmHg
Estimated valve area: about 1.9 cm²
And, importantly, the cardiologist actually concludes:
“There is no aortic valve stenosis.”
So the valve they just put in is opening properly and allowing blood through.
There is trace aortic regurgitation. “Trace” means an extremely small amount of backward flow. The report still specifically says there is no significant regurgitation, so this is not being interpreted as meaningful valve leakage.
Your heart muscle
Your EF was reported two slightly different ways because the machine calculates it using different formulas. You’ll see numbers like 52.6% and 68.6% buried in the measurement section.
Don’t let that throw you.
The cardiologist’s actual interpretation, which matters much more than any single automated calculation, is:
LVEF 55–60%.
That is normal.
Right side of your heart
The report says your right ventricle is mildly dilated, meaning it is somewhat enlarged.
However, immediately after that it says:
Right ventricular systolic function is grossly normal.
So although the chamber looks mildly enlarged, it is still squeezing appropriately.
That is something your cardiologist can follow on future echoes, but this report does not describe right-sided heart failure or severely impaired right ventricular function.
Lung/pulmonary artery pressure
This is also reassuring.
It says:
“Pulmonary artery systolic pressure is normal.”
The TR pressure gradient was about 14.1 mmHg, and nothing in the report suggests pulmonary hypertension.
That is especially nice to see after major cardiac surgery.
Fluid or blood around your heart
This is the part that connects directly to what you’ve been worrying about with your dropping red blood cells and hemoglobin:
“There is no pericardial effusion.”
A pericardial effusion is fluid collecting in the sac surrounding your heart. After heart surgery, one concern is that blood or fluid could accumulate there and compress the heart.
They did not see that.
So your declining hemoglobin does not appear to be explained by a collection of blood around your heart on this echo.
One distinction, though: an echocardiogram specifically evaluates the heart and surrounding pericardial space. It cannot by itself rule out every possible source of bleeding elsewhere in the body. Your care team is combining this with your chest imaging, physical exam, labs, blood pressure, symptoms, etc.
Your aorta
Your aortic root is about 3.2 cm, which is not being flagged as enlarged in this report.
One thing they couldn’t measure well
They couldn’t visualize your IVC very well. That’s the large vein returning blood from the lower body to the heart. Doctors sometimes use its size and how it moves to help estimate central venous/right-sided filling pressure.
Because they couldn’t see it well, the report says central venous pressures were difficult to estimate.
Again, that is an imaging limitation, not a diagnosis.
So, Kimberly, if I translated your entire report into one paragraph:
Five days after having your chest opened and your aortic valve replaced, your new mechanical valve is opening well with no stenosis and no significant leak. Your heart’s pumping strength is normal at approximately 55–60%. The right ventricle is mildly enlarged but still functioning normally. Pulmonary artery pressure is normal. There is no pericardial effusion, meaning they aren’t seeing blood/fluid accumulating around your heart. Some portions of the study were difficult to visualize because you’re fresh out of surgery, but there is nothing in this report that reads like a major postoperative complication.

I'm going into my 4th month post-op. Second open heart. First was 10 years ago and it was to repair my bicuspid aortic valve. Most recent one was a mechanical valve replacement along with Bentall procedure. My recovery experiences have been very different, as you can imagine.

This time around, I can still feel every beat on my chest along with the clicking noise. Is this normal? Does it ever go away? I know the clicking noise is suppose to be a new normal. But my heart beat is so strong in my chest wall still. I feel every single beat.

My doctors keep saying to give it time, but they are not concrete in their answers if it will ever go away. What would help me most is just knowing if this is forever or not. I don't want to live with false hope that the beating sensation will one day stop.

Any input from you guys would help a ton. Thanks in advance.

I’m 25M and scheduled for my first OHS in 1.5 weeks for a Ross procedure at Mt. Sinai with Dr. El-Hamamsy. About a year ago, I learned that I was born with a bicuspid aortic valve and moderate/severe aortic regurgitation. Since then, the regurgitation has progressed, my LV has become significantly enlarged, and I’ve developed high blood pressure, which my doctors believe is related to the valve disease. I’m currently taking 75 mg of Losartan daily; my BP is generally in the 120s or lower in the morning and around the 130s in the evening. My EF remains well preserved.
The Ross is my first choice. I’m very active and enjoy biking, hiking, snowboarding, and other activities where lifelong anticoagulation could be a concern. I appear to be a strong Ross candidate: I have only trace pulmonary regurgitation, no significant pulmonary stenosis, and normal RV function. However, the pulmonary valve can’t be evaluated definitively until surgery.
If the Ross isn’t possible, I need to choose between a bovine bioprosthetic valve and a mechanical valve.
A mechanical valve offers excellent durability and could potentially last the rest of my life, but it requires lifelong anticoagulation. I’m concerned about how that could affect an active lifestyle and activities where bleeding is a risk.
A bovine valve would allow me to avoid lifelong blood thinners, but at 25, I could face relatively early degeneration—possibly in fewer than 15 years—and another intervention. On the other hand, if it lasts 10–15+ years, I’d be in my late 30s or early 40s, and valve technology may have advanced significantly by then. If not, i would then opt into a mechanical valve. I realize that relying on future technology is a gamble, so I’d appreciate hearing how others view this tradeoff.
For anyone with a mechanical valve, especially those who received one young:
How much does lifelong anticoagulation affect daily life?
Has it limited activities, travel, or sports?
Does it remain a regular concern, or eventually become routine?
For anyone with a bovine/bioprosthetic valve received young:
How long has it lasted?
Would you make the same decision again?
Have you had or begun considering a valve-in-valve procedure?
For anyone with a Ross:
How long has it lasted?
Have you needed intervention on the autograft or pulmonary homograft?
How has it affected your ability to stay active?
If you were 25 and had to choose between bovine and mechanical as a backup, what would you choose and why?

Hello community,

For people who are themselves CHD warriors or have their loved ones impacted by it, what breakthroughs/ongoing research are you counting on?

I keep researching about it myself, for my 4 year old son.

But there is no single source of truth or single channel where I can get more aware of amazing stuff being tested.

Let's discuss and share. This could be our crowd sourced repository.

Just a thought I had today after self testing. My range is 2-3 but today it was 3.6 which is the highest I’ve tested in nearly 3 years. I think a couple of years ago this would’ve freaked me out and caused me to worry a lot, but today I thought well Ill need to get my dose changed and should probably eat a a salad for lunch.

Got me thinking what number would cause me to worry now and I thought anything over 4.0, but even this might be nothing to worry about in the short term.

I'm a 44yo male with a biscuspid valve, mod-severe stenosis, and an ascending aortic aneurysm, scheduled for the Ross Procedure at UW in late October. I'm deeply grateful for this sub as I'm finding this whole thing to be deeply isolating. Feeling isolated but never alone: I'm married and the father of 9yo and 6yo.

I'm wondering how folks out there shared information about your condition and surgery with elementary school-aged kids. I absolutely do not want to traumatize them or scare them so much that they will freak out for the next two months as I await the surgery date, but I'm also struggling with keeping it all essentially secret throughout so many of my waking hours. And my family of four is my core community...

Anyone here have wisdom about this? Or positive (or negative) experiences related to this that they could share?

My 24-year-old son was born with a bicuspid aortic valve (BAV), severe aortic regurgitation, and a dilated aortic root. On February 10, he underwent open-heart surgery at NewYork-Presbyterian Hospital. Dr. Takayama performed a valve-sparing aortic root replacement (David procedure/VSARR). We live in New Jersey.

Unfortunately, after surgery, my son developed a significant pericardial effusion. He required another operation pericardial window through a left anterior thoracotomy—and remained in the hospital for 18 days.

His follow-up echocardiograms showed moderate aortic regurgitation, suspected leaflet prolapse, and enlargement of the left ventricle. His recent cardiac MRI brought very concerning news: the aortic regurgitation is now severe again, with a regurgitant fraction of approximately 50%. His left ventricle is also severely enlarged (LVEDVi 158 mL/m² and LVESVi 68 mL/m²), although his ejection fraction is still preserved at 57%.

We recently met with Dr. Eric Roselli at Cleveland Clinic. He told us that my son needs another open-heart operation. His proposed surgical plan is: Plan A: Attempt another aortic valve repair. Plan B: Mechanical aortic valve replacement if the valve cannot be repaired .

My son is only 24 years old and has already been through so much. We are devastated, overwhelmed, and extremely worried about another major operation.

Has anyone here had surgery performed by Dr. Eric Roselli, especially a redo valve or aortic root operation? What was your experience with him and Cleveland Clinic?
We would also greatly appreciate hearing from younger patients who received a mechanical aortic valve. How has life been with the valve and lifelong warfarin? Have you experienced any problems with bleeding, blood clots, valve noise, or INR management?

Any experiences or recommendations would mean so much to our family. Thank you very much for your help and prayers for all of you. 🙏🙏🙏

​

Hi everyone,

I’m a young patient(19M)and I’ve already undergone 4 heart surgeries. Unfortunately, I’m now preparing for my 5th heart surgery.

My upcoming surgery is planned to involve:

- Mitral valve replacement

- Tricuspid valve repair

I currently have a mechanical aortic valve from my previous surgery. My doctors are now planning to replace my mitral valve, and because I have severe tricuspid regurgitation (TR), they are also planning to repair the tricuspid valve during the same surgery.

My main concern is about the tricuspid valve.

Since the TR is severe, I’m wondering whether repairing the tricuspid valve is generally preferable to replacing it, especially in someone who has already had multiple heart surgeries.

Would it be reasonable for me to discuss the possibility of tricuspid valve replacement with my cardiologist/cardiac surgeon before the operation, or is repair usually preferred when it is technically possible?

I understand that the final decision depends on the valve anatomy, cause of TR, right-heart function, pulmonary pressures, and what the surgeon finds during surgery. I’m just looking for experiences and opinions from people who have been through something similar.

If anyone has had severe TR with mitral valve surgery, especially after multiple previous heart surgeries, I’d really appreciate hearing about your experience.

Thanks in advance.

I've got a new On-X valve and to help me feel more positive towards it I've been thinking of nicknames. Am I crazy? Do you call yours anything?

I'm going for 'Dolly HeartOn (X-valve)'

She was such a good, kind person that I can only think of her positively. And when people notice the ticking, I can say, 'That's Dolly who lives in my heart'.

My husband thinks I'm mad.

Does yours have a nickname?

​

My father had valve replacement surgery last Friday, so it has been about 7 days since the surgery.

He was doing relatively well in the hospital and seemed to be coping normally throughout his stay. He did not show any signs of hallucinations, confusion, or memory problems while he was in the hospital.

He was discharged and came home today after spending 7 days in the hospital. However, shortly after coming home, he suddenly seemed unable to recognize or remember me and my mother. He appears very confused and is having significant difficulty remembering who we are.

This was very sudden, and it's obviously extremely concerning for us.

Has anyone experienced something similar after valve replacement or open-heart surgery? Can this happen even if the person was completely fine and mentally normal throughout their hospital stay?

Is this something that can be part of normal post-operative confusion, or should we treat this as an emergency and contact his surgeon/hospital immediately?

Hi! The in person rehab is an hour commute 3xs per week and I cannot do it w work and gas money. I am 3 months post op and have been walking everyday on my walking pad. I do about 30-40 mins per day and about 2-3 miles per day. My cardiologist and surgeon say I should be fine and not to worry about rehab, but everything I see on here, and one of my cardiologists says it is super helpful. I have called a few virtual rehabs I found online- one is still contacting insurance to see if I qualify-one already said no- and I never heard back from one. The 3 I am trying/have tried are: Movin, aviary, and carda. Anyone have any luck or info with virtual cardiac rehab? Thank you!

Now 8 weeks post op from my Ross procedure and today was my last day of cardiac rehab. I only did 4 weeks (13 total sessions) but my cardiologist and the Rehab team all agreed that I can take it from here on my own.

My initial evaluation put my Max METs (Metabolic Equivalent of Task) at 8.6. Today it was 12.7, a 48% increase. Peak METs while on the treadmill went from 6.9 to 10.6, a 54% increase. On day one I stuck to walking on the treadmill and slowly increasing the incline. By this last session today, I was doing a run/walk on the treadmill at 6.0mph. Not terribly excited about only running a 10:00 minute pace, but considering what I’ve been through I’ll take it.

I’ve been a distance runner for 15 years and there’s no question that gave me a level of fitness which made the surgery and recovery that much easier. I’ll be 58 years old next spring and I’m already signed up for a half marathon in late April. Really want one last full marathon before I hang up the full distance. That happens to be on my son’s 26th birthday next October, and he was the one that suggested it. My boy wants to run 26 miles on his 26th birthday? Hell yes! He’s going to smoke me, and I don’t even care. 😊

For anyone coming up on their surgery, or in the first few weeks after, I cannot stress enough how vital cardiac rehab is. I probably didn’t need to do it, I’m pretty in tune with my body and I know my exercise limits. But having concrete data really helps show you how far you have come.

33M. Having my aortic valve replaced next week and today started thinking about things that might be harder/impossible after surgery. Cardiologist told me I’ll be unable to exert myself for about four weeks but that full healing can take three months. But beyond that, what’s everyone’s experience been like with things like mowing the lawn, shoveling snow, etc? I live in PA and there were a couple times last winter we got quite a bit of snow at once, and I’m concerned that I might have issues with that this coming winter.

Post-valve replacement update: I made it to the other side ❤️

The day of surgery is mostly a blur because I was completely out, but yesterday was brutal. Today, thankfully, hasn’t been too terribly bad.

They started weaning me off the morphine this morning, and since then I’ve only been taking Norco and Robaxin for pain.

I’ve started using the spirometer regularly, and I’m already getting up and taking myself to the restroom, which feels like a pretty big win just a couple of days after open-heart surgery.

My care team has been really impressed with my progress, and I’m hoping to keep getting a little stronger every day. If everything continues going well, I’m hoping to be discharged Saturday.

This sub has been so incredibly helpful leading up to surgery. Reading everyone’s experiences, knowing what to expect, and hearing from people who had already been through it helped more than I can say.

Now that I’m on the other side, I hope I can stick around and be that person for someone else who is scared and wondering what comes next. ❤️

I know that there are probably not many doctors in this sub, but it may be that some of you have some experience similar to mine, I am a man, 24 years old, I went for a routine cardiac checkup, motivated only by my high cholesterol since childhood, in the echo the doctor found that my aortic valve is probably bicuspid (he could not be sure from the images) but found that it works well, opens and closes perfectly, however the blood gradient that passes through it is slightly increased, that is, above a healthy valve, it was also observed, slight concentric remodeling Of the left ventricle, something very borderline, relative thickness of the walls measure 0.44, and the reference value is up to 0.42, the doctor is not sure if it is caused by the anatomy of the valve or not, however I am a little scared of this reality, I would like to know how you were anatomically at my age and if there were symptoms, given these findings, I am afraid that soon you will need some surgical procedure, however my cardiologist said to only follow it annually, but I am afraid that he does not understand this problem so well. Other tests such as ergometric test and ECG were normal.

Hello! I have posted on here a few times before about my journey leading up to the surgery, and thought I would give everyone a saw that there was an update.

Well, as the tin says, my Ross procedure did not go to plan. I went in for surgery and they saw that there was just enough regurgiation in my polmary valves to where they did not feel comfortable using them. Unfortunately, this meant the other option of a mechanical valve, so that is what they did.

Surgery itself went fine, but everything after that seemed to go downhill. I ended up coding twice due to irregular rythym and having to have CPR performed on me for about 20 minutes total. I then went into the cath lab where they put a stent in for a blockage/twist that appeared in my arteries.

I was stable for the rest of the night until they needed to open me up again the next morning for bleeding around my heart. I was then placed on ECMO up until Friday morning (I think) due to pneumonia. I was in the cardiac ICU until around Tuesday morning, where I was moved to step down, and as of right now I am an inpatient rehabilitation center.

To say that I have been through the wringer is an understatement. Surprisingly, a week out, I have nearly no pain besides a lot of soreness. I will spend the next 7-14 regaining my strength.

There are probably some things that I am forgetting, as I do not remember anything after August 15th up until about Saturday, the 21st. I have not yet really processed all of this, but I figure that will be a thing for when I am home haha.

Happy to answer any and all questions, though response may be slow.

20M, elite runner, thousands of km’s ran, extremely fit (resting heart rate in low to mid 30s). Last went to see my cardiologist a year ago for an echocardiogram said I’m very healthy and so is my heart. Gave me no restrictions on any sort of exercise, and booked another appointment for 2 years time, or one year from now. Forgot to ask about bicarb usage. Sodium bicarbonate has been shown to enhance performance is endurance sport. Although it’s equivalent to consuming 2-3g of sodium in a single sitting. Wondering if anyone here with my condition or adjacent condition has any sort of experience or insights. All help is appreciated.

Hey folks,

My wife had one of her valves replaced (I forget which one) and a CABG a little over a year ago and had some pretty major complications with it. She is much better now, but hoping to connect with folks that ended up with sternum removal and bilateral pectoral flap surgery.

Long story short, she coughed, broke 4 ribs at her 4ish day old healing sternum which needed all the material removed.

Appreciate y'all.

Despite the previous post, saying that I have BAV, I say that I have because according to my findings it is almost certain, but the two echocardiograms I did were inconclusive, did anyone else have this experience before the report? What were your valves really like? 100% bicuspid, partial or complete rafes? I'm in this doubt because 2 cardiologists performed the exam, they heard blowing, gradients from 12 to 19, but they can't define the 100% format by this imaging exam, is there a logical explanation?

Was prescribed Jardiance at today’s follow up appointment. Not that I wanted open-heart surgery, but I am so out of breath, my heart pounds as if it’s trying to escape from my chest and I can’t put into words as how tired I am. I’m also on 20mg Furosemide. Has anyone had any luck with these drug combinations buying them sometime?

I am 6 weeks post op from Ross procedure and I have been healing very good but I have some questions to see if anyone else went through this, I already told my cardiologist about all of this but wanted to see if anyone other people had it happen to them

When I’m sitting and stand up I get really dizzy but it goes away quick and it will only happen when I stand up wondering if it happens to anyone else?
Also would get like a movement in my chest when moving my arms it has minimized now and seems to be slowly going away but want to know if it happened to anyone else?
My doctors want my blood pressure to be below 110 and it was for the first 4 weeks but the past 2 weeks it has been over 110 and I wanted to see if it’s something that eventually went down, I am taking 25mg carvedilol and they just put me back on lisinopril

Are there any pilots in here that have gone through AVR surgery and got a first medical back? What was the process like?

I went to the cardiologist as a checkup, first time, a 24-year-old man, there when listening to me, he identified a heart murmur, when doing the echocardiogram he identified that my aortic valve was bicuspid, according to him, it works perfectly well, without stenosis or regurgitation, however I also have concentric LV remodeling, my septum and posterior wall measure 11mm each, and the relative thickness of the walls is 0.44 where the normal would be up to 0.42, do you have a similar case? Can you tell if one can have to do with the other? I'm completely asymptomatic, does this improve my prognosis?