Parent of 19 yo with valve replacements

[TGM]

Hello folks,

I‘m not actually new here but it’s been many years since I’ve been on this site. I’m the parent of a 19 year old with 2 prosthetic valves (pulmonary and mitral). He’s had 4 OHS, the most recent in 2018. I came back to this site as it has become clear that the St Jude’s mechanical valve is not going to last as long as we’d hoped. I’d love to hear of any innovations in mitral replacements.

 

[pellicle]

Hi ... welcome back

so, what are they saying is the reason for the valve not lasting ...

also, where are you (on the planet)

also, I found in your Bio (but not mentioned in the above this:

. I came back because of increasing gradient across mitral valve

I'd maybe ask @nobog for some conjectural speculation on what may be possible causes for that (cos we're out of my depth on that one).

My first thoughts run to INR management and obstructive thrombosis. In which case imaging would clarify that proposition.

If its that then PICC administered tPA may be the best (and should be the first) non surgical go to.

 

[TGM]

Hello and thank you for responding. I am in the mid-Atlantic region of the US. My son goes to an Adult Congenital Heart clinic. His first St Jude was implanted when he was 4 years old and lasted 11 years. It was still a good size for my son but there was tissue growth impeding flood flow. We thought it may have been associated with his use of growth hormone therapy. However, fast forward to 4 years with another 23 mm St Jude and he has a pressure gradient in the teens. We will pursue a TEE this summer to get a better look but it has me in knots just thinking about another cardiac intervention. He’s had 4 OHS already, 5 catheterizations and will have a major orthopedic surgery later this month. The theory right now is tissue growth again. He has a history of keloids and overgrowth of scar tissue. His INR has been stable for the past 4-5 months in the 2.5-3.5 range. We have not started treating him with a beta blocker but my understanding is that could be recommended soon.

 

[Superman]

Hello and welcome back. Sorry to read about your situation. Initially I was surprised as the valves themselves are fairly bullet proof. But tissue growth or some other similar issue would make sense. Unfortunately, I don’t know of any new solutions that would change that. However, On-X does advertise a longer something or other designed to help mitigate or prevent the effects of Panus growth. The design uses a longer cylinder (I’m sure it’s called something).

I don’t know how effective it is, but if it’s a recurring issue, I’d be ready to try a new brand and test their claims. That is, if your son needs a new valve and there isn’t a non-surgical solution.

 

[TGM]

Interesting that you bring up the OnX. That was supposed to be the valve they would implant back in 2018 due to the INR therapeutic range being a bit lower. For some reason they couldn’t manage to get it in place and had to revert back to a St Jude. I didn’t know there was another benefit. Thanks for the info

 

[pellicle]

Hi

I am in the mid-Atlantic region of the US. My son goes to an Adult Congenital Heart clinic.

so first class medical treatment is available then (we get posts from India and 3rd world countries where that's not a given and being able to read and write English is not a geographical locator).

His first St Jude was implanted when he was 4 years old and lasted 11 years.

ahh, important factor ... and yes that decision will necessitate a swap out at some time as it can't grow.

...but there was tissue growth impeding flood flow.

that's called Pannus and can be removed by catheter these days ... but as you identified it grows back. I don't know how much you've read about it but here's two good articles

https://pubs.rsna.org/doi/full/10.1148/radiol.2015142400
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3493295/

However, fast forward to 4 years with another 23 mm St Jude and he has a pressure gradient in the teens.

a bit confusing, while good conversational communication style its not good for helping with the facts. So if you could, when were each valves replaced and which valve has a pressure gradient problem and when was it identified. Bullet point would be perfect.

We will pursue a TEE this summer to get a better look but it has me in knots just thinking about another cardiac intervention.

that's good ... always best to get data before making calls as to what may happen. Planning ahead is a good idea, worrying in advance isn't.

The theory right now is tissue growth again.

given the history that's a reasonable suggestion, but best to wait for the actual facts. I'll suggest this method:

*Marcus Aurelius (about 180AD)

He has a history of keloids and overgrowth of scar tissue.

as you can see from my scar picture (which I see you found elsewhere) I had that issue too. It stopped as I got past 20.

Interesting that you bring up the OnX. That was supposed to be the valve they would implant back in 2018 due to the INR therapeutic range being a bit lower. For some reason they couldn’t manage to get it in place and had to revert back to a St Jude. I didn’t know there was another benefit. Thanks for the info

Well you may have dodged a bullet there because there is a body of evidence suggesting that 1) that guideline may be premature and harmful in long term 2) the valve is huge with relation to its diameter. See this post


https://www.valvereplacement.org/threads/it-makes-a-clicking-sound.888370/post-915825
keep us informed (which is said mainly for you because we can't do anything except offer organisation for your thoughts, but talking about it will do something for you).

Best Wishes

 

[goffrey]

I too have a long history of OHS and scar tissue and keloids. My scar tissue around my last valve was so bad they had to remove a portion of rib just to get my old valve out. I am only 25 but scarring and wound healing are both big issues for me.

 

[TGM]

I too have a long history of OHS and scar tissue and keloids. My scar tissue around my last valve was so bad they had to remove a portion of rib just to get my old valve out. I am only 25 but scarring and wound healing are both big issues for me.

Do you mind sharing your surgical history?

 

[TGM]

Hi



so first class medical treatment is available then (we get posts from India and 3rd world countries where that's not a given and being able to read and write English is not a geographical locator).



ahh, important factor ... and yes that decision will necessitate a swap out at some time as it can't grow.



that's called Pannus and can be removed by catheter these days ... but as you identified it grows back. I don't know how much you've read about it but here's two good articles

https://pubs.rsna.org/doi/full/10.1148/radiol.2015142400
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3493295/



a bit confusing, while good conversational communication style its not good for helping with the facts. So if you could, when were each valves replaced and which valve has a pressure gradient problem and when was it identified. Bullet point would be perfect.



that's good ... always best to get data before making calls as to what may happen. Planning ahead is a good idea, worrying in advance isn't.




given the history that's a reasonable suggestion, but best to wait for the actual facts. I'll suggest this method:

View attachment 888527
*Marcus Aurelius (about 180AD)




as you can see from my scar picture (which I see you found elsewhere) I had that issue too. It stopped as I got past 20.



Well you may have dodged a bullet there because there is a body of evidence suggesting that 1) that guideline may be premature and harmful in long term 2) the valve is huge with relation to its diameter. See this post


https://www.valvereplacement.org/threads/it-makes-a-clicking-sound.888370/post-915825
keep us informed (which is said mainly for you because we can't do anything except offer organisation for your thoughts, but talking about it will do something for you).

Best Wishes

Thank you for the resources. Here’s a rundown of his interventions keeping in mind that he was born in 2002:
2003: AV canal repair and pulmonary valve removal
2007: Mitral valve replacement with St Jude 23mm and pulmonary valve replacement with homograft
2009: pulmonary valve replaced with Hancock II after homograft failure due to immune system over reaction
2018: mitral valve replacement with another 23mm St Jude (problem was tissue growth) replacement of pulmonary with larger Hancock II

current pressure gradients across the mitral valve are in the teens…TEE scheduled for mid May while he’s in the hospital for scoliosis surgery

 

[goffrey]

Do you mind sharing your surgical history?

I have undergone 7 open heart surgeries, I had a unifocalization and non valved conduit placed when I was 6 months old, then a closed heart surgery where a BT shunt was placed by thoracotomy, I had a VSD closure, 4 pulmonary valve redo's ( one due to fungal endocarditis), my tricuspid valve tightened and repaired and a few re-dos on my sternum due to scarring and non-healing wounds. I have been on ECMO and had my chest open for a week after surgery twice. Had 8 heart catherizations with ballooning of my pulmonary arteries one with a complication where the balloon would not deflate so the surgical team was called in to do a cut down on my artery in my groin/leg area to get the balloon out. I have a history of poor wound healing and lots of scaring.

 

[TGM]

Wow…you weren’t exaggerating. That is an extensive history. Have you been to several programs or do you use one specific hospital program? Also, how are you doing now?

 

[pellicle]

Hi

Thank you for the resources. Here’s a rundown of his interventions keeping in mind that he was born in 2002:
2003: AV canal repair and pulmonary valve removal

removal? what was it replaced with? Was there no valve until 2007?

2007: Mitral valve replacement with St Jude 23mm and pulmonary valve replacement with homograft

wow, 5 yo right? I'm not familiar enough to discuss this but I recall that I had mine delayed to 10yo (which was my first OHS) which was a repair.

2009: pulmonary valve replaced with Hancock II after homograft failure due to immune system over reaction

that's sad, I've only heard of that if tissue typing was done incorrectly. I had a homograft at OHS #2 which lasted about 20 years (until 48yo).

I did know that the duration in that age group (of your son) was less than ideal, but it is what it is. This is the reoperatoin data from the center that did mine (Brisbane, Queensland Australia)

For all cryopreserved valves, at 15 years, the freedom [from reoperation] was ​

⦁ 47% (0-20-year-old patients at operation), ​

I don't know the causes for the reoperations, which makes my above assumption about tissue typing only based on my memory of discussions with my surgeon. A quick google revealed this:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3484936/

The future of homograft valve banking is actually a past revisited. From previous experiences and data gathered from homografts implantation over the years, perspectives on where else we can improve is a tremendous challenge. Over the past 25 different preservation processing and storage, as well as surgical techniques have evolved to optimize the therapeutic possibilities for patients indicated for implantation of a homograft. Although long term follow-up shows satisfactory results, it is hard to pinpoint the key success and failure factors in homograft implantation.​

2018: mitral valve replacement with another 23mm St Jude (problem was tissue growth) replacement of pulmonary with larger Hancock II

so, pannus ... was there any attempt to excise the pannus transcatheter before re-operation?

All interesting stuff.

Thanks for sharing, you can find my history (briefly) in (my bio here)

Feel free to ask anything about that if you are curious.

Best Wishes

 

[carolinemc]

Hello folks,

I‘m not actually new here but it’s been many years since I’ve been on this site. I’m the parent of a 19 year old with 2 prosthetic valves (pulmonary and mitral). He’s had 4 OHS, the most recent in 2018. I came back to this site as it has become clear that the St Jude’s mechanical valve is not going to last as long as we’d hoped. I’d love to hear of any innovations in mitral replacements.

It happens a little that St. Jude's does not last. We had a person on hear on the 1990's that had one and she passed in the 2010's. It happens and so sad when it does fail. They can do another St. Jude's again, but there is a limited choice of mechanical replacements. Just confer with the surgeon on what might be available for your son. Hope he is doing okay anyway. It is hard to be young and have so much to deal with.

 

[goffrey]

Wow…you weren’t exaggerating. That is an extensive history. Have you been to several programs or do you use one specific hospital program? Also, how are you doing now?

I have always gone to Mayo Clinic. My mother made the decisions when I was a child and now that they know my anatomy so well I continue using them. My surgeon was the president of the Thoracic Society of Surgeons and is very good at what he does . My previous surgeon Dr. Puga was pioneer in my particular defect.

 

[TGM]

that's called Pannus and can be removed by catheter

I have checked with the American College of Cardiology whom have stated that Pannus across the mitral valve cannot be excised in the cath lab. Do you know of a place where they are doing that?

 

[pellicle]

I have checked with the American College of Cardiology whom have stated that Pannus across the mitral valve cannot be excised in the cath lab. Do you know of a place where they are doing that?

I do not, I had been thinking of aortic and had read that it's done. I have never paid attention to which valve was being discussed in the literature, and (incorrectly) assumed that it was done on both.

My mistake and I'm sorry if I have caused you any duress.