Had no idea

[Protimenow]

I think we probably handle the idea of heart surgery in our own unique ways.

I was 23 when a pre-med student heard my murmur -- all the doctors I had seen previously must have been deaf to it.

I was told that my valve will continue to fail, and that I'll probably need surgery in 20 years or so.

I had decades to get my head around it, and really didn't worry about it. I didn't have the Internet to throw me a lot of misinformation. I had to trust my doctors.

I was 41, had a good job, good insurance, and asked my cardiologist how sick I had to be before I can get my valve replaced. I was still relatively strong -- my chances for recovery were probably better than they would have been if I had waited. Also, surgeons were getting pretty good at this type of surgery, and had OR and follow-up teams that knew what they were doing.

If I learned that I needed a valve while in an E.R. after, perhaps, passing out, things may have cn different. If I heard that I'll need the surgery in a few weeks and shouldn't wait, my reaction (and fears) may have been a lot more panicked.

Don't necessarily trust Dr. Internet -- there's good stuff, and a bunch of garbage.

Many of us at this forum have been through similar challenges and can speak from experience

I'm 38, and just had a mechanical aortic valve put in. Second surgery, had a valve sparing aortic root replacement when I was 30. I also looked up life expectancy and was shocked when I saw how short it was, then I talked myself off the ledge. Math, the average age of heart valve patients is way older then I am. We are outliers.

The survival rate for heart valve patients is likely to rise in the future.

The higher rate is a result of valve implantations into old people -- the survival rates of these people was mixed in with overall survival rates for everyone with valve replacements (although I'm sure there are other studies that broke it down by age.

Now that they are doing TAVI and TAVR on older patients, we should see the overall survival rates for valve recipients rise and, not surprisingly, not so great survival rates for the people who are get the TAVx valve 'repairs.'

The TAVx procedures are good for older people whose surgical risks are high (although the surgery has been approved for a wider population). This procedure has its limitations - the repair doesn't last forever, and each time the procedure is repeated, the valve gets smaller and smaller. It's not ideal, but for many people it may be a better alternative to OHS.

 

[pellicle]

I’m leaning towards playing occasionally, but at a much lower / less competitive level

FWIW I exactly thing you should do that exact proposal

 

[Chuck C]

Hi and welcome to the forum.

You’ve already had some very good input here. I would agree with the comments that suggest that you should not look back and live your life without worry, not being anxious about some study you found, which may not be very applicable to your own situation.

In that you have concerns over the study you came across, which suggested that those who have undergone tricuspid valve surgery have short life expectancies, I wanted to address this and suggest that it is not nearly as concerning as you suggest and give you my thoughts of a recent study which would seem to indicate that you can probably expect to have a normal life expectancy.

I believe that the study that you came across is the one linked below, because when one Googles “Tricuspid valve surgery”, this is the first one that pops up, in many different publications. Yes, those numbers look bad, with survival at 10 years of just 49%. The problem is, only the abstract comes up, which does not give the average age of the study participants. A little more digging and I was able to find and download the full published study. I was also able to eventually find a much more recent study which has significantly more favorable data for someone in your shoes. Links to both studies below.

First, some comments on the gloom and doom study, which I believe that you have already stumbled across:

-The average age of those in the study was 57 years old at the time of surgery. That’s about 20 years older than you were at the time of your surgery. Age matters. Some of those in the study were over 70 and some over 80. These individuals will skew the mortality figure, and can be misleading for the young patient trying to apply these results to their own situation. In other words, you have a much better outlook that someone going into this surgery who is 80 years old.

-This study was on patients who underwent their procedures between 1986 and 2006. Surgery has improved since then, especially if we are looking at those procedures done in the 80s and 90s.

-The abstract, and even the full study, do not differentiate between which tissue valve was used, bovine or porcine. There is a significant difference with outcomes between these two types of valves in the tricuspid position, which the more recent study will address. The study, which I refer to as the "glood and doom study", is linked below.

The abstract:

Outcomes of tricuspid valve repair and replacement: a propensity analysis - PubMed.

Same study, but the full publication:

http://www.sbccv.org.br/residentes/downloads/valvar dez.pdf

The more recent study, published in 2021, and attached in PDF to the following post, is much more hopeful for your situation. It involves procedures that were completed more recently. It also differentiates between bovine and porcine, which contains some good news for you.

Here are some points from this study:

-Porcine significantly outperformed bovine. This should be welcome news for you, in that you have a porcine valve. It also suggests that your medical team knew exactly what they were doing in equipping you with a porcine valve, which appears to do very well in the tricuspid position.

-The long term outcomes were very good for porcine, with high survival rates.

Combining both bovine and porcine results, this is what the survival numbers look like:

“The 5-, 10-, and 15-year overall survival rates were 74.3%, 54.9%, and 30.0%,”

But look what happens when you separate bovine from porcine in these outcomes. You get these survival rates:

“respectively; they were 73.2%, 50.8%, and 22.7% in the BTVR group and 80.8%, 80.8%, and 64.6% in the PTVR group”

Take that in for a moment. 80.8% survival at 10 years and 64.6% survival at 15 years are very good numbers.

-These survival numbers for porcine valves should be very encouraging for you, but even more so given how much younger you are than the average age of study participants. In this study the average age for the porcine wing was 57 years old at time of surgery. 20 years older than you were at the time of your procedure. There were folks in their 70s and 80s and, as noted for the previous study as well, this would skew survival to the downside, when compared to what someone could expect who is much younger, such as yourself.

-80.8% is an outstanding survival figure for 10 years. But, there is even more positive data on this for you. Most of those deaths in the porcine wing were considered “operative mortalities”, which occurred within 30 days following their surgeries. 11.5% of those on the porcine wing died in the first 30 days. So, you have already made it past the most difficult part. If you take out the early mortalities, which you should because you are well past the initial 30 days, the 10 year survival is beyond 90%.

-There is also very good news on the SVD front. As Nobog indicated, the tricuspid valve is on the low pressure side of the heart. The results for SVD would appear to reflect this and are remarkably low.

“5-, 10-, and 15-year cumulative incidences of SVD were…. 0.0%, 9.7%, and 9.7%, respectively, in the PTVR”

To have only 9.7% of valves showing SVD at 15 years is excellent for a tissue valve.

Edit: The link to the more recent 2021 study, from which I took the above points, did not link properly. I have attached the downloaded PDF in the next post in this thread that follows.

These are small studies. There is going to be less data for this valve compared to the aortic or mitral position, as those are much more common procedures. But, although limited, the recent data would suggest that you should be optimistic about your future and what you can expect from your valve. In all probability, you can look forward to a normal life expectancy. Taking good care of your health, by controlling your weight, controlling your blood pressure, exercising regularly and eating healthy will also improve the prospects of having a very long life.

 

[Chuck C]

Part 2 of my above post. The link to the recent study did not work, so I am attaching the downloaded PDF. This is the more recent 2021 publication on the Tricuspid valve comparing bovine to porcine tissue.

 

[Jack Julles Jackson]

Great advices here. Aways.

Im facing the surgery soon and, in the beginning, I was panincing too!

I say to you, dont be alone. Here they are lots of persons who will support you. But get togheter with people in real life too.
Also: inform yourself. Remember panic is fear. We fear what we dont know. Here we have LOTS of information, but dont forget to talk to your doctors and ask ALL the questions you need. Dont leave the room in doubt, if leave, take another apointment. Dont like what you hear? If you can, talk to another professional.
Since I got informed about my condition and the procedures I need to do anxied was almost gone. I still will have my chest oppened, and I still think a lot about it, but, with support and information, that dont freeze me no more!

Best of luck for you!

 

[TVRjon]

I finally got an appointment with a doctor after a month of trying. I just got out of prison for possession of heroin. I got sick in there with a bladder infection.when I told them I wasn't feeling well they ignored me. I ended up developing sepsis and from there a domino effect of bad things happened. But I got out of prison august 7th. I'm homeless and really disabled because before heart surgery I had spinal surgery because a pocket of staphylococcus settled on my spine. So now my legs barely work. They said In prison they would help me get disability and find me some transitional housing but they didn't. I'm so depressed and alone. I'm just a big pity party right now. I hope things get better. I want to live and not struggle so much. But it's not happening yet.thanks for the positive words everyone.

 

[Chuck C]

I would listen to Nobog any day.

Absolutely. I would too.

He's a physician (as far as I know)

Well, no. There is another explanation for his knowledge in this field. Then again, maybe it's this:

 

[Chuck C]

I just got out of prison for possession of heroin.

I'm not sure if your endocarditis was caused by your heroin use, but they are heavily correlated. See study below. I hope that you are getting treatment for this and that, if nothing else, fear of endocarditis returning will motivate you to stay away from future heroin abuse.

"Among drug users, most endocarditis infections stem from the use of non-sterile syringes, allowing bacteria to enter the bloodstream and, eventually, the heart.
Among people with opioid use disorder, the rate of endocarditis jumped from 4 per million per day to 30 per million per day."

https://www.statnews.com/2023/01/17...rs, most endocarditis,30 per million per day.

 

[carolinemc]

Ive been googling long term recovery from a tricuspid valve replacement and i keep seeing basically im going to die within a few years in im lucky. Im scared to death. I had endocarditis and my valve went bad so they put a pig valve in. why is our survival rate so low? is this just a myth im reading about....i need help...im 36 and just had this valve put in this last april. now im scared to death im not gonna make it to see my daughter graduate.

You are looking up old, out of date misinformation. I was 36 when I had my aortic valve replacement with St. Jude's Aortic leaflet valve and am now 58 and still ticking along. And with the pig valve, your survival right is greater than it was 20 to 50 years ago. Please do not research on the internet, for there are many links to fake misinformation. You are doing fine, you are still alive and that counts. So sorry you are scared. We are here for you.

 

[nobog]

Absolutely. I would too.

Well, no. There is another explanation for his knowledge in this field. Then again, maybe it's this:

I really prefer the Radisson or Hilton

 

[Jack Julles Jackson]

I finally got an appointment with a doctor after a month of trying. I just got out of prison for possession of heroin. I got sick in there with a bladder infection.when I told them I wasn't feeling well they ignored me. I ended up developing sepsis and from there a domino effect of bad things happened. But I got out of prison august 7th. I'm homeless and really disabled because before heart surgery I had spinal surgery because a pocket of staphylococcus settled on my spine. So now my legs barely work. They said In prison they would help me get disability and find me some transitional housing but they didn't. I'm so depressed and alone. I'm just a big pity party right now. I hope things get better. I want to live and not struggle so much. But it's not happening yet.thanks for the positive words everyone.

Man this is a heavy history, but you still here and thats what matter. Keep goin on! Get all the help you can! Dont face it alone!

 

[pellicle]

I really prefer the Radisson or Hilton

it seems to me that Cruise ships should add this as an on board service.

They could also get some interventional cardiologists on board too, offer a whole raft of services ... TAVI and Stents

 

[dornole]

I hope you’ve gotten into a good shelter that can help you access permanent supportive housing and hopefully you can improve your overall health and wellness from there.

 

[Cris N]

I'm 38, and just had a mechanical aortic valve put in. Second surgery, had a valve sparing aortic root replacement when I was 30. I also looked up life expectancy and was shocked when I saw how short it was, then I talked myself off the ledge. Math, the average age of heart valve patients is way older then I am. We are outliers.

This is a major point. In the couple of articles I read on the tricuspid replacement and the statistics, they failed to mention the age of the patients. I suspect the average age was considerably greater than 30ish. Makes a huge difference.

 

[pellicle]

they failed to mention the age of the patients. I suspect the average age was considerably greater than 30ish. Makes a huge difference.

the key point right there

 

[TVRjon]

Well my anxiety wasn't unnecessary. Got a bunch of bad lab tests. Low calcium low iron saturation high GCFT normal Ferratin low hemoglobin almost.5 months post op. Ugg

 

[Springdogg]

Hello fellow hockey player! I’m getting a mechanical sometime in the next few months. I’m curious - do you think you’ll still play hockey once you’re in the Warfarin club?

I’m leaning towards playing occasionally, but at a much lower / less competitive level. (Feel free to DM me if you’d prefer)

Sorry I missed replying to this last year. I was told today that my valve is failing and I will need to get it replaced with mechanical. I found your post as I am too wondering what others decided to do. No idea what my anti coagulation will be just yet.

 

[pellicle]

No idea what my anti coagulation will be just yet

OK, well this is perhaps a good reference
http://cjeastwd.blogspot.com/2014/09/managing-my-inr.html

Best wishes