Back in the waiting room...

[pellicle]

I really can't believe anyone would recommend tissue for someone in their 20s,

Common when women wish to have children. Warfarin causes problems in gestation and needs to be switched to daily heparin injection.

 

[Lisa from LJ]

Common when women wish to have children. Warfarin causes problems in gestation and needs to be switched to daily heparin injection.

As a woman who knew I'd eventually be having valve replacement from the age of 14 on, and who made the decision at 28 and again at 30 to get pregnant before the replacement, even though it could have ended with an early baby and me in the OR, I know that. I just hope the surgeon told her that the life of the tissue valve after going through two pregnancies would be significantly affected. As my cardiologist said, "A pregnancy is like a 9-month long game of basketball where your heart doesn't get much time to rest."

 

[Lisa from LJ]

Here is my biggest concern:

"The surgeon said she has never actually put in a mechanical tricuspid valve."

I feel that "It's the way I've always done it and I"m not willing to change now is the problem."

 

[pellicle]

Hi

As a woman who knew I'd eventually be having valve replacement from the age of 14 on, and who made the decision at 28 and again at 30 to get pregnant before the replacement, even though it could have ended with an early baby and me in the OR, I know that. I just hope the surgeon told her that the life of the tissue valve after going through two pregnancies would be significantly affected

I'm betting strongly that they underplayed that risk ...

I think its interesting that in places like India they still fit mechanical valves in younger women who need a valve replaced and expect them to just manage heparin injections.

https://www.valvereplacement.org/threads/aortic-valve-replacement-03-2016.888682/post-918474

https://www.valvereplacement.org/threads/mechanical-valve-and-pregnant.866326/#post-913828

also any post by Shiv on this topic: this whole thread

https://www.valvereplacement.org/threads/pregnancy-on-mechanical-valve.887847/post-902113


So (as Shiv says) rheumatic fever is a driver for valve replacements and women need to have mechanical valves for both durability (being around 19 often enough) AND manage heparin during the correct trimesters if pregnancy is desired (and why shouldn't it be).

(I've learned so much outside of my required box of "warfarin management knowledge" by being here these last 12 years)

So I'm sure that India has far more younger female patients

Here is my biggest concern:

"The surgeon said she has never actually put in a mechanical tricuspid valve."

I feel that "It's the way I've always done it and I"m not willing to change now is the problem."

agreed ... so my view is "run, don't walk" out of that trap.

 

[dornole]

I think Elcarim is in a bit of a tough position with this being a tricuspid valve. From reading the ACC/AHA guidelines Section 8 (https://www.ahajournals.org/doi/10.1161/CIR.0000000000000923) this kind of damage to tricuspid valves from pacemaker leads is an increasing problem. In addition it seems like mechanical valves are rarely used for tricuspid due to very significant thrombosis risk. Did a quick google (paper here: https://onlinelibrary.wiley.com/doi/10.1111/jocs.16209) and:

"Tricuspid valve (TV) prosthetic is associated with an 11.7 times higher risk of thrombosis in comparison with other heart valves and it may occur in approximately 20% of the patients during the first postoperative year."

and

"The results of the present study showed that recurrent thrombosis requiring intervention is a major complication of mechanical TV"

"As mechanical TV replacement is rarely performed, there are little data about the outcomes in large studies."

All of which indicate to me that Elcarim's surgeon may have excellent reasons for never doing tricuspid mech valve replacements.

Wishing you best of luck, Elcarim. It is a serious bummer that this happened to you but sending best wishes for a successful replacement, improved quality of life, for the new tricuspid to last as long as possible, and for the catheter-based TTVRs now in clinical trials to be an option for you if needed down the road.

 

[Elcarim]

As a woman who knew I'd eventually be having valve replacement from the age of 14 on, and who made the decision at 28 and again at 30 to get pregnant before the replacement, even though it could have ended with an early baby and me in the OR, I know that. I just hope the surgeon told her that the life of the tissue valve after going through two pregnancies would be significantly affected. As my cardiologist said, "A pregnancy is like a 9-month long game of basketball where your heart doesn't get much time to rest."

Lisa, I was very heavily pressured, at 22yo, to have the tissue valve, both by my doctors and by family members who were very keen for me to have children. I was not at any point told that the valve would be under more pressure and more likely to fail if I had pregnancies. I was treated as a baby-machine first and a human being second. After that first surgery I basically decided that since I would have to go through it again anyway, I might as well go ahead and have babies. The whole situation was messed up.

This time, while a 'forever' valve would be ideal, my cardiologist and surgeon are of the opinion that the risk of a mechanical valve in the tricuspid position is too high with regard to clotting. It is also my surgeon's intention that nobody ever crack my chest again. The tissue valve sets me up for 'valve in valve' procedures when needed down the track, which are already being successfully performed in people like me (younger, female, pacemaker, previous valve replacement).

 

[pellicle]

I was not at any point told that the valve would be under more pressure and more likely to fail if I had pregnancies.

I want to be clear here that I didn't "like" to support the behaviour that you were subjected to. It feels selfish (on the part of those who were not there to support you) and irresponsible.

hugs

 

[dornole]

What the actual …Elcarim I am so sorry the people in your life treated you like a freaking brood mare. For sure pregnancy is hard on valves and heart in general. My twin pregnancy was how my valve problems were discovered and it was actually life threatening for all three of us.

Sounds like you’re in good hands now with a team that’s putting you first. I may be having tricuspid repair or replacement myself this week as part of my mitral valve replacement (that will be a mechanical). I appreciate that you shared your team’s reasoning on why tissue for the tricuspid.

Sending a lot of good vibes that things go your way this time and you’re set up for a while.

 

[Lisa from LJ]

Elcarim, that is ridiculous and I'm sorry they treated you that way! I know there are people with mechanical tricuspid valves who are just fine. The following sentence is the conclusion from a study I found on a quick google search:
https://www.ajconline.org/article/S0002-9149(24)00436-3/abstract

"...our results suggest that TVR with mechanical valves, whenever considered clinically reasonable and accepted by patients as an option, can offer a better long-term survival and lower risk of reoperation in the long run."

If your surgeon has never placed a mechanical in the tricuspid position, I'd get another opinion.

 

[dornole]

FYI Elcarim had surgery Oct 1.

 

[Lisa from LJ]

FYI Elcarim had surgery Oct 1.

Oops! Then I guess all went well and I'm sure the surgeon's decision will be fine in the short and long run!