Jackie's Journal

Robert Miller  I am male and much older so maybe I am not qualified to answer this. So first of all, get a second or third opinion. At that age, a mechanical valve is making the most sense. But that means your daughter probably has to take warfarin. This can create various complications including bleeding, passing the medicine on to the unborn child, etc. I am no expert in this but I believe with careful management with a cardiologist and obstetrician, having a child should be quite possible. It might be helpful to also talk to an obstetrician regarding this. Hopefully, they can do a repair in which case all of this becomes a moot point. 

Rita Savelis  I am sorry that your daughter needs to have sugery at such a young age. I had surgery at 53 and am jealous of those who had it at 70. Women have a more difficult situation that men do. Having a child is possible with a mechanical valve but a doctor needs to be on board and supportive. Having periods while on anticoagulants also means one will have heavier bleeding. Many women pick the tissue route and get reoperated later. It is highly likely that your daughter's mitral valve will be repaired and she won't need to have a valve decision made although they need to know in case. It's a difficult situation and warrants more discussion with a surgeon about what his experience has been.

Pamela Gregory  I believe that a biological mitral valve replacement lasts much longer than 7-10 years? Definitely get another opinion or 2

Amy Minto  I had minimally invasive mitral repair 7 years ago. I did not have a great experience, but I had a side approach done incision where an underwire sits under my right arm. I have had, for 7 years now, pretty unpleasant nerve damage from my ribs being wrenched apart and small movements like scrolling/typing on my phone are very painful. I cannot ever wear a traditional bra or even the wire free ones bc seams hurt. I have since learned many people who do this type of minimally invasive surgery have similar problems like me bc ribs are not meant to be wrenched open like that. Multiple pain management drs, PT, etc have corroborated this happens a lot. My cardiologist warned me it would be very painful, but this out of town surgeon (recommended on tis site) was promising with 95% certainty to repair my badly damaged rheumatic mitral valve when all my local surgeons game me a 50/50 shot at waking up with a mechanical valve, and I too wished to avoid coumadin. Unfortunately now I am in urgent need of a replacement and am severely symptomatic. I already had a 4 year old at time of surgery. Happy to chat more. I do have a good friend (I met on here!) who had a mini sternotomy a week before me with very little residual pain. I know people question the longevity she's been quoted for a bioprosthetic, but I have been told the same- it was explained like this: if you loan a car to a 16 yr old, it's going to come back with different wear an tear than if loaned to a 70 year old. Published data on 10-15 years for a bioprosthetic applies to an older demographic. If she ever is to consider having children, then she needs to consider a bioprosthetic. But pregnancy is hard on the heart. That's how my valve issue was discovered- I went into heart failure when my son was born. I had been induced, and had I gone through with labor, I was told I would not have survived. Our son was crashing on his fetal heart monitor, so they did an emergency c-section, which saved my life. Again, happy to chat more if you want. I am older- now 50. 

susan harris  my son is 26 and for past 6 mos, we debated and stressed over same decision but aortic. he decided not to do mechanical. if your daughter in the most remote case thinks maybe children, she should do tissue. i’d hate to think of consequences if she thought later about kids. my sons surgeon said “i’d rather open you up 4 - 5 times and keep replacing valve. and at large volume center like his, risk is no higher. other surgeons said no way do i want to open you up again. keep meeting w surgeons until you feel totally comfortable. we met w 4 - all at diff hospitals. happy to talk more!

Jackie Cossette  Wow!  I want to thank all of you for replies. So nice of you!!! Definitely a lot to consider.  I will share with her and will reach out if any further questions.
Wish you all well!!!

susan harris  lots to consider w mechanical-most often, people talk about consistent diet and daily meds. INR testing has gotten easier w at home testing. but…ask hcp about mechanical valve when older. drug interactions w blood thinner?  dental procedures and random surgery in lifetime?  what if i get cancer down the road?   how often do mech valves get replaced (ie blood clots on valve and body rejects it?).   how do i manage warfarin when i’m elderly?  risks?  think about long haul, not just today. 

Susan Lynn  I'm sorry your daughter has to go through this at such a young age. I had a minimally-invasive mitral valve mini-thoracotomy that was pretty easy and virtually painless. There was some tingling and pins and needles sensations while my nerves regenerated, but I didn't have any long-term issues.

Experienced mitral valve surgeons repair these valves over 90% of the time. Replacements are avoided whenever possible. While patients are often asked to choose a valve prior to surgery, the probability that they'll be used is small.

The most important part of heart surgery is finding a surgeon who successfully performs a high volume of the procedure that's needed. Cosmetics are pretty far down on the priority list, but, since your daughter is 28 years old, it may be important to her not to have a sternotomy or mini sternotomy scar. Even at my ripe old age (57 at the time of my surgery), I was grateful that my surgeon hid my incision on the side of my right breast when he performed my procedure.
Remember, repairing a mitral valve is the same, only the surgeon's access to the heart is different. If you can get a good repair and good cosmetic result, your daughter may be more accepting of this procedure and be less self-conscious about it in the future. If performed correctly, mitral valve repairs by qualified surgeons are expected to last a lifetime. Wishing you, both, all the best.

J Alexander Lassally  I'd like those that say 6-7 years  durability to cite the academic source for this....  

Agreed, the chance of a replacement is low for your daughter.... a repair should be more than attainable !! Best of luck to her. 

Robert Miller  @J Alexander Lassally, I am not sure where you got the 6-7 years from. Jackie said 7-10 years. It still seems a very conservative estimate. However, from what I read is that for younger people tissue valves don't last as long as for older people. It is my understanding that it has something to do with the immune system which is more active at a younger age. But don't quote me on this. In any case, as others said, hopefully they can just do a repair. As I said earlier, if I were female in this position, I would talk to the cardiologist and an a couple of obstetricians. I suspect I would go for a mechanical valve.