Anyone had 3 valve replacement surgeries?

[TomM]

Did the aneurysm drive the reoperation?

In January 2020 I had a regular appointment with my cardiologist who noted my ascending aorta was close to the limit for requiring surgery but not needed yet. In late October 2020, at night when all was quiet I could hear an unusual swishing with each heart beat. I asked my wife to put her ear to my chest and we figured it was best to go to the GP (local doctor). I was admitted to hospital that day. I was treated for an infection for a week or so until a trans osopheagal echo was done. One of the leaflets of my heart was pretty much flapping around. There was no infection.

I was personally worried that I'd wake up with a pacemaker

When I woke up in 2004 after surgery I got upset seeing two leads coming from my chest. I thought it was a permanent pacemaker. That would have meant for me the risk of going for a homograft was not worth it as I would have been limited in my lifestyle at that age.

I hope neither of us need reoperation

Out of interest to the group I'll share the following. After the mechanical valve was installed in 2020 I started taking warfarin. When I was discharged from hospital I was discharging blood when I went to poo. It turns out I had a large polyp in my colon, that turned out to be cancerous. If I did not take warfarin I would surely not have known anything about this. I don't think I'm lucky in fact I think I'm blessed. I needed a section of my colon removed. That surgery went well and fingers crossed that will be that with surgeries.

I'm sure I paint a picture of a very sickly guy. I'm doing alright considering and to demonstrate some bit here's a photo of me taken this summer just gone.

 

[pellicle]

That surgery went well and fingers crossed that will be that with surgeries.

Thanks for sharing that with me (and us).

It was a story of good luck as well as a testimony to your resilience.

I wish you well for the future.

(and no, I don't consider you sound any more sickly sounding than me.)

Best Wishes

 

[Chuck C]

It was basically a lifestyle choice. I was 22 at the time and wanted for playing contact sports and to socialize without impediment. I played Gaelic games and though not at a high level I really enjoyed playing. I was given the option of a Ross procedure, homograft or mechanical valve. Information on these was not as readily available to me back in 2004 as it is now. I had no internet at home when making the decision. I ruled out the Ross procedure though this is what the cardiac team was pushing for and for the lifestyle reasons above I chose another homograft. I guess to put it another way I was young and had great intentions of "sowing my wild oats" though with relatively only minor success as it turned out . I was aware of the consequences of the decision. I guess if the cardiac team had put more emphasis on a mechanical valve rather than the Ross procedure I would have considered this option and went with the mechanical valve. In fact, now that I think back on it, I was left to make the decision up until the morning of the procedure. When I didn't choose the Ross procedure the surgery was postponed until later that month. The reasoning they gave was another patient was in need of surgery.

@pellicle I'm 40 years old now.

Thanks for sharing your story TomM.

I guess to put it another way I was young and had great intentions of "sowing my wild oats"

And I thought that I had already heard every warfarin myth under the sun.

"Young man, now that you are on warfarin, your days of sowing your wild oats are over."

In my view, you made the right decision in choosing the homograft over the Ross. They both have about the same track record, in terms of how long the valve lasts in the aortic position, but with the Ross you end up with a 2 valve problem instead of one, typically 20 years down the road. It's unfortunate that your first homograft only lasted 5 years, which is not typical. But, you have a great attitude in how you are accepting the hand that you've been dealt and it sounds like you live your life to the fullest.

 

[carolinemc]

100% agree, anyone can find a study that validates their viewpoint (Which I see over and over on this forum).

TO ANYONE READING THIS FORUM LOOKING FOR ADVICE ON WHICH VALVE TO CHOOSE:

A surgeon (and/or cardiologist) with years of real world experience combined with years and years of education, the ability to evaluate your entire medical history, your unique medical situation (maybe you have other conditions or family history that would complicate a receiving a mechanical or tissue valve), your personal preferences and desired lifestyle after surgery, your desire or ability to follow anticoagulation routines now or in the future, knowledge of cutting edge medicine and how it could benefit you... and then backed up by a world class support system/facility... will be much better able to advise you on which valve is best for you and your unique situation than some random guy/gal on an internet forum who, no matter how many old studies they drag up on Google, is in no way qualified or equipped to do any of the above.

It's your life people, be smart about it.


My advice:

1. Find the best cardiologist and surgeon you can find and listen to their advice.

2. Prepare for surgery the best you can (for both before and after and what to expect). THIS FORUM IS EXCELLENT FOR THIS!

3. Go to the best high volume valve surgery center/hospital you can.

4. Spend time with people that matter to you.


What not to do:

1. Waste time going down internet rabbit holes that will stress you out when you could be doing something productive, like preparing for surgery or spending time with loved ones.

2. Take advice from unqualified internet people over the advice of your doctors and surgeons.

3. Let unqualified internet people sow distrust between yourself and your doctors and surgeons.

I HATE TO BURST YOUR BUBBLE, BUT MANY HERE TALK FROM MANY YEARS OF EXEPRIECNE OF TALKING TO SURGEONS, NOT UNSOUND POLLS TO GET MEDICAL ADVICE. I never give unsound advice, since I was born with Aortic valve defect and had it replaced with a ST. Jude's' aortic valve. I would rather people here talk to the professionals than just looking it up from unreliable sources from internet. I got great advice of how to deal with after surgery here on this site. And when all possible, talk to the cardio and surgeon. Do not knock down us that have been here advising others for years. We always say to go reliable sources.

 

[TGM]

My son, aged 20, has 2 prosthetic valves (one tissue and one mechanical). He has had 4 OHS (1) Septal defect closure and pulmonary valvotomy in 2003 (2) placement of St Jude’s mechanical in the mitral position and homograft in the pulmonary in 2007 (3) failure of homograft which was replaced by a Hancock II porcine valve in 2009 (4) double valve replacement with another set of St Jude’s and Hancock II in (2018). That last surgery was extremely challenging with numerous complications and some extremely scary moments for this traumatized parent but thankfully he is on the other side of it and managing his INR pretty well on his own while away at college.

 

[pellicle]

and some extremely scary moments for this traumatized parent

Hugs

 

[Earthsciencerocks]

In January 2020 I had a regular appointment with my cardiologist who noted my ascending aorta was close to the limit for requiring surgery but not needed yet. In late October 2020, at night when all was quiet I could hear an unusual swishing with each heart beat. I asked my wife to put her ear to my chest and we figured it was best to go to the GP (local doctor). I was admitted to hospital that day. I was treated for an infection for a week or so until a trans osopheagal echo was done. One of the leaflets of my heart was pretty much flapping around. There was no infection.

When I woke up in 2004 after surgery I got upset seeing two leads coming from my chest. I thought it was a permanent pacemaker. That would have meant for me the risk of going for a homograft was not worth it as I would have been limited in my lifestyle at that age.


Out of interest to the group I'll share the following. After the mechanical valve was installed in 2020 I started taking warfarin. When I was discharged from hospital I was discharging blood when I went to poo. It turns out I had a large polyp in my colon, that turned out to be cancerous. If I did not take warfarin I would surely not have known anything about this. I don't think I'm lucky in fact I think I'm blessed. I needed a section of my colon removed. That surgery went well and fingers crossed that will be that with surgeries.

I'm sure I paint a picture of a very sickly guy. I'm doing alright considering and to demonstrate some bit here's a photo of me taken this summer just gone.

Love it! So good to hear of similar stories of decisions made and reasoning for surgical choices! Surviving 4 puts my perspective back on life and less focus on meeting my maker "prematurely." God must still have plans for us.

 

[Mr V]

I have only had 2 but they were only 4 days apart. The first one was a mitral valve repair. I had hoped to avoid the lifetime of warfarin by having the repair done. Repair has probably advanced a lot since 1996. I had made it out of the ICU and was in a regular room on the heart floor when I woke up with what I thought was heartburn. When it got worse the did an echo and I believe one of the flaps was blocking something else causing fluid to back up into my lungs. Cardiologist turned up the temporary pacemaker thinking maybe it wouldn't block if the heart was beating faster. That has to be one of the strangest things I have ever experienced. I was breathing fast for hours and it felt like I wouldn't be able to keep breathing with my chest muscles wearing out. So back to the ICU and a TEE while the cardiologist tried all the things that would usually get this to stop. When none of that worked they intubated me and waited for a operating room to open up. The surgeon thought he knew how to fix what was going on with another repair but they decided not to chance it with my oxygen levels dropping to around 10% before I got into the OR. Guess GOD was not ready for me yet. After what my wife went through she did not need to hear them tell her they were surprised my organs hadn't started shutting down. They didn't find any brain damage although my wife disagrees with that . I never hear my valve unless I listen for it. Probably helps that I use a CPAP so background noise anyway. It's my restless legs that keep me awake now. My ST Jude valve has been working great for 26 years now and GOD willing, hopefully can another 20 years out of it.

 

[Jack Julles Jackson]

PLEASE, TELL ME MORE ABOUT IT

There is yet a third option for the young patient. Find a surgeon, they exist, who will tell you that, the new tissue valves will last 30 to 45 years. That way you can go tissue and get the best of both worlds. No warfarin. No clicking. And, even though you have a tissue valve, you never have to get a reoperation in your lifetime, in the little imaginary world that he painted for you. Evidence smevidence. If a surgeon says so, it must be true.

Im 36, diabetic an high blood pressure. My surgeon told me about this magical biologic valves that I cant find anywhere on the internet. Can you explain me more? Thank you for tell me that.

 

[pellicle]

Im 36, diabetic an high blood pressure. My surgeon told me about this magical biologic valves that I cant find anywhere on the internet. Can you explain me more? Thank you for tell me that.

I think this is covered in the other post, but:

rule 1 don't believe everything you read or hear​

rule 2 attempt independent verification of any point across multiple sources​

rule 3 only bother on peer reviewed journals.​

Also, in case you get an On-X magic valve merchant, please read this post and its associated links:
https://www.valvereplacement.org/threads/inr-how-low-should-you-go.889228/post-926604
Best Wishes

 

[Chuck C]

Im 36, diabetic an high blood pressure. My surgeon told me about this magical biologic valves that I cant find anywhere on the internet. Can you explain me more? Thank you for tell me that.

Hi Jack,

I'll give a more thorough reply to the other thread in which you introduced yourself to the forum. Regarding theh "magical valves", sorry if you missed my point. My point is that there are no magic valves, but some really good marketing done by certain valve manufacturers, which makes some people (and even some surgeons) believe that these valves will last nearly forever. But, better to make decisions based on evidence, not based on the marketing from a valve manufacturer. There is currently no evidence that these valves will last longer than previous tissue valves. There is hope that they will do a little better. For someone who is 36 years old, you should probably expect 8 to 12 years from a tissue valve, even the one with all of the marketing. You will then face another procedure and at 36, you would be looking at many future procedures.

 

[Earthsciencerocks]

Any one else have a 3rd OHS valve replacement on the horizon?
The last post was mid 2023.
Thanks!!!

 

[tommyboy14]

I didnt and hope I wont, but my surgeon said that he did a 6th AVR successfully on someone no problem.

 

[Gail in Ca]

I’ve had 3 aortic valve replacements.
At 34, surgeon wanted to give me porcine in case I wanted another child. Then after he saw my aorta fall apart in his hands during surgery, he still gave me porcine but recommended I not have another pregnancy. He said he’d seen porcine last 15 yrs, but mine lasted 11, and that was considered really good. (8 yr was average then). So, at 46 I got Carbomedic top hat mechanical. That was my roughest recovery as I was in CHF going into the surgery. Pig leaflet had torn.
Then, 8 1/2 yrs later, endocarditis from a nasty rare bacteria. After picc line for 6 weeks, needed 3rd surgery to replace aortic valve, old graft placed in 89, and mitral repair. Long surgery but I awoke feeling good. I had a partial lung collapse but it resolved. My tongue was sliced by the Dr that intubated me and I got thrush in the hospital. I had a pressure sore on my heel from the long time on my back I guess. I still left the hospital in 6 days. I walked a lot in CCU. Nurses always offered me snacks. Not many people walk at 3 am but the bed was so uncomfortable! Now I’m in my 60’s and my mitral repair has failed. I’m looking into what the future holds for my heart.

 

[pellicle]

Now I’m in my 60’s and my mitral repair has failed. I’m looking into what the future holds for my heart.

Hoping for good choices laid before you.

 

[Eva]

I’ve had 3 aortic valve replacements.
At 34, surgeon wanted to give me porcine in case I wanted another child. Then after he saw my aorta fall apart in his hands during surgery, he still gave me porcine but recommended I not have another pregnancy. He said he’d seen porcine last 15 yrs, but mine lasted 11, and that was considered really good. (8 yr was average then). So, at 46 I got Carbomedic top hat mechanical. That was my roughest recovery as I was in CHF going into the surgery. Pig leaflet had torn.
Then, 8 1/2 yrs later, endocarditis from a nasty rare bacteria. After picc line for 6 weeks, needed 3rd surgery to replace aortic valve, old graft placed in 89, and mitral repair. Long surgery but I awoke feeling good. I had a partial lung collapse but it resolved. My tongue was sliced by the Dr that intubated me and I got thrush in the hospital. I had a pressure sore on my heel from the long time on my back I guess. I still left the hospital in 6 days. I walked a lot in CCU. Nurses always offered me snacks. Not many people walk at 3 am but the bed was so uncomfortable! Now I’m in my 60’s and my mitral repair has failed. I’m looking into what the future holds for my heart.

Best of luck, Gail.

 

[Chuck C]

Wishing you all the best with the upcoming procedure Gail. We're with you!

 

[Survived03]

I love hearing and reading generalizations about Warfarin and food, etc. I assume (perhaps incorrectly) with most if not all pharmaceuticals you need a pathway to drug metabolism. These pathways are unique in all of us and although rare (6-8% per article) you may very well carry a polymorphism affecting warfarin's therapeutic effect. Blame your parents, not the spinach.

A good reason to measure INR's periodically.

https://www.pharmacytimes.com/view/2008-06-8583

Pharmacokinetic interactions with warfarin can alter its absorption, distribution, or elimination. Interactions affecting warfarin metabolism are the most susceptible to genetic influence. Specifically, several cytochrome P450 (CYP450) enzymes, including CYP2C9, CYP3A4, CYP1A2, and CYP2C19, contribute to the elimination of warfarin. While the activity of both CYP2C19 and CYP2C9 are genetically determined, CYP2C9 is more important because it is the primary pathway for the elimination of S-warfarin, the warfarin enantiomer considered to be the most potent anticoagulant.

For the record, I am not on warfarin. I chose an Edwards Resilia bovine valve.

 

[Earthsciencerocks]

I’ve had 3 aortic valve replacements.
At 34, surgeon wanted to give me porcine in case I wanted another child. Then after he saw my aorta fall apart in his hands during surgery, he still gave me porcine but recommended I not have another pregnancy. He said he’d seen porcine last 15 yrs, but mine lasted 11, and that was considered really good. (8 yr was average then). So, at 46 I got Carbomedic top hat mechanical. That was my roughest recovery as I was in CHF going into the surgery. Pig leaflet had torn.
Then, 8 1/2 yrs later, endocarditis from a nasty rare bacteria. After picc line for 6 weeks, needed 3rd surgery to replace aortic valve, old graft placed in 89, and mitral repair. Long surgery but I awoke feeling good. I had a partial lung collapse but it resolved. My tongue was sliced by the Dr that intubated me and I got thrush in the hospital. I had a pressure sore on my heel from the long time on my back I guess. I still left the hospital in 6 days. I walked a lot in CCU. Nurses always offered me snacks. Not many people walk at 3 am but the bed was so uncomfortable! Now I’m in my 60’s and my mitral repair has failed. I’m looking into what the future holds for my heart.

Thank you so much for your valuable information! It is encouraging! Our stories continue! I tell my wife that God must still have work for me here to do. I pray you have many amazin' decades to go! God Bless!!!

 

[pellicle]

A good reason to measure INR's periodically.

a good article and I just wanted to say that the genes you inherit are usually going to express themselves (especially mitochondrial ones) pretty much consistently after you've passsed from embryo to born. There are a few exceptions and we are of course still learning.

The reason why none of that has found its way into clinical practice are (in my view)

1. ethical issues surrounding genetic testing
2. we could just measure and know

however all of that Cytochrome P450 stuff is why you don't drink grapefruit juice on any medication.
https://cjeastwd.blogspot.com/2021/05/grapefruit-and-warfarin.html

Best wishes