If you were in my shoes....

[kerri73]

For those of you who have heard my story before... I've been in the waiting room a while (really, I've known my artificial mitral valve has been getting worse for 4-5 years now)... I did a stress test in January (bike with oxygen meters - I should post a pic of that, it was a good time!).

My surgeon reviewed it and compared it to the one I did a year ago, and to be blunt... I failed. He thinks I should be looking at surgery in 6-18 months in order to keep any damage from occuring and to do it while I'm still healthy. Scary!

In addition, I've been having some symptoms - just being super tired and not being able to gain energy... a flight of stairs kicking my butt... Monday I had one of my weak spells where my legs/arms feel rubbery. And Tues night my brain went to mush where you're almost in a dream state and your thoughts just aren't clear... (if anyone can relate to those, please chime in!)

I've posted on here in various aspects... one of them being pregnancy. I could risk doing a pregnancy with an artificial valve, or I could go for a tissue one this time - knowing that I may have to have another surgery down the road sometime. It's such a tough decision! If I went for a mechanical valve, I could have to have another surgery like the boat I'm in now...

My history - I've already had 4 surgeries. Three through the sternum, one through the ribs. Three by the time I was 5 years old, one at age 24. I'm now 35.

We've looked at adoption (the openness is kind of scary), we have a meeting on surrogacy in July. I'm all about doing my homework and making the best decision based on all the facts... but it's hard to tell the heart that you can't have your own kids - or at least just one.

So the question... if you were in my shoes, already looking at having to have another surgery... would you just do the safe thing and go mechanical and pray that you're not at this point in another 11 years again?

I'm just curious to hear everyone's opinions on it. Still doing my homework, haven't even consulted on valve choices yet as we're not sure the exact time frame for the surgery just yet. The surgeon's input will be a whole other point of view factored into everything.

And how many surgeries have people had... and how many is too many? I know that's a grey area question and varies by person... when does scar tissue just get to be too much?

Thanks all - I know I'll be coming to you a lot more in the near/far future whenever the surgery does get scheduled and we move forward with this. I appreciate that you are all here! Family and friends can listen and give advice, but they just can't 100% relate.

Kerri

 

[Ross]

Flat out, if you plan on becoming pregnant, go tissue. Yes I know, another surgery perhaps 15 to 20 years down the road. Mechanical only if your not going to get pregnant. The chances of needing it replaced are very very small. As you know, no guarantees no matter what you choose or do, but this is what I would do in your shoes.

 

[geebee]

Kerri,

As you are fully aware, mechanical does not guarantee no more surgeries. However, it does give you the best chance of avoiding future surgeries. Some folks will tell you that you can do many surgeries without problems. I can tell you, from my experience, each surgery takes more out of you. It is nothing I can explain but.....

I think you have had enough surgeries already to last a couple lifetimes. If I were you, I would go mechanical. I usually advise otherwise for someone looking to have children but your history leads me elsewhere.

Best wishes - this is not an easy decision for you.

 

[netmiff]

mmmm, good question ! I am not sure of the history referred to, but if your heart (no pun intended!) is set on having your own child, tissue is probably the best choice; however, if you really don't think you can take another surgery, mechanical is the way to go. Depends on how much you want your own child compared to how much you do/don't want another surgery .... I think your surgeon may have some input, too. At least you are aware of the consequences and are weighing your options, not too long ago you wouldn't have had these choices.

I have not been in your position, and have not done the homework you have, but have to wonder about the low anti-coag possibilities of ON-X valves; just putting it out there as something else for you to consider and ask the surgeon about - as if there wasn't already enough for you to weigh up

 

[BigOwl]

Kerri: this is truly a difficult choice, and I concur with most of what's been said. If you're open enough to consider adoption and/or surrogacy, and don't want to endure another surgery (with your experience, who would?), your best choice would undoubtedly be mechanical.

On behalf of all the babies and young children in the world who have no parents and are waiting for parents to love them, I'd encourage you to look more deeply into adoption if you're considering surrogacy, because even though the latter involves your genes and your husband's, you still don't get the pregnancy. As any adoptive parent will tell you, the genes don't make the attachment. I have two of my own, but if I'd had them younger than I did, I'd have adopted more--especially after discovering the crappy genes I have to pass on (fortunately only one of my kids got the bad ones).

In many ways it's a good thing you've got a bit of a window. Good luck to you no matter what you decide--but remember that parenthood itself is a worthy goal, regardless of where the genes actually come from.

 

[kerri73]

Thanks everyone - I appreciate the input. I think I'm with all of you and am leaning towards the mechanical. When it was more of a "if I have to have another one" idea, I was more thinking along the lines of tissue, but now that it's a good reality, it's a little scary to think about, and mechanical seems more comforting. I'll see what opinions my surgeon has to offer as well, but I like to hear what you guys think as well.

Thanks again!
Kerri

 

[ALCapshaw2]

Kerri,

There was a recent thread about someone's experience with "Pregnancy with a Mechanical Valve". Here is the link: http://www.valvereplacement.com/forums/showthread.php?t=29907&highlight=pregnancy

Do a Search on VR.com for keyword "pregnancy" and you will get LOTS of links, even if you limit the search to Thread Titles. You can see ALL posts by setting the Time Window at the bottom of the Search Page to "Anytime".

Personally, at 5 Surgeries, I would NOT be inclined to set myself up for yet another after this upcoming surgery, 'even if I were female'.

Regarding timing: I heard one Surgeon say:
"Call me when your Quality of Life is No Longer Acceptable.

Bottom Line: It's not just the numbers!

'AL Capshaw'

 

[Karlynn]

Kerri - If you were my daughter, I wouldn't want to see you sign yourself up for at least 6 total surgeries by going tissue. Pregnancy is very hard on the heart. We have some who have made it through unscathed, but there are many of us (including me) who ended up having to have valve replacement due to the toll that a pregnancy took on our hearts. If this was your 2nd surgery, I'd still be cautioning you on that. Remember that any child you have, whether it is one you birthed, one that has your genetics or one that was born in your heart through adoption, this child will need a healthy Mom to take care of them.

Having my 2nd child is what tanked my mitral valve. I spent 5 years being pretty sick and miserable before having my valve replacement. I missed t-ball games, play days with friends, hardly had the energy to lift my children, I had volunteers from church coming in to care for my baby and toddler when I couldn't and so much more. There's nothing that breaks your heart more to have your 3 year old ask "Daddy, why isn't Mommy coming with us again?" as they head off to something that I just didn't have the energy to do. It's been over 17 years and my heart still aches to think of it. And my children both still vividly remember that time. Thankfully, I had my replacement and life became so much better. Now these days, I'm sure they would have done the surgery much sooner since I was so symptomatic (even though my valve wasn't fully blown yet -but it was when I finally had it done.) But my point is that you just don't know what kind of physical condition you will come out of surgery with and I wouldn't want to see anyone have the grief and depression I went through not being able to be the Mom I felt my children deserved.

I think you need to do what will make you the healthiest and keep you from having any more surgeries as much as possible. I know the thought of not growing your own child within you is a tough one to ponder. But in a child/parent relationship it is but a minuscule part of the experience. There is oh so much more that will fill your life with joy.

I have several friends with adoptive children and they are just as close and bonded as my children are to me. We have a few members who are having, or have had, children through gestational surrogacy. It's a wonderful option for women who want to have a child that is genetically theirs, but who cannot carry one.

For anyone else posting this who was looking at a 1st or 2nd surgery, I would have just posted - make sure the doctors clear your heart for pregnancy and if they do - go tissue. But I'm really concerned for you with adding more surgeries to your already long list and what a pregnancy would do to a heart that has already been operated on so many times.

Best wishes.

 

[Megan]

kerri. ive been in your shoes with one less surgery. I had my 3rd ohs with a tissue valve so i could get pregnant knowing id have a 4th. i was 29. ive had my 2 babies actually on the bovine pericardial valve and did great- normal everthing- one regular, one c-section. And now my time is here for the 4th surgery -to be scheduled soon. Here is my first thought---your Dr said between 6-18 months? thata big window. did he give advice for or against trying to have a child now, then have the surgery? i had a caridologist tell me i shouldnt get pregnant (after I already was!) that dr was not an adult congenital specialist. i went to the adult congenital specialist and they gave me the go ahead to "be pregnant" and to "get pregnant again"--and that was now 4.5 years ago! i guess what im trying to say is...did you get a second opinion?

also, I know you failed your test but dont overestimate the influence of stress on your condition. I was working a VERY intense time consuming job as a financial services compliance attorney and having TONs of symptoms like the ones you describe. I quit- and so did those symptoms! just my own 2 cents--hope it helps a bit.

Megan--feel free to email me directly- [email protected].

 

[Karlynn]

PS - if you are already having those symptoms, I'd try and get the surgery scheduled. Most times the valve is worse when they get in there and take a look at it than they can predict through testing.

 

[laurad37]

My thoughts... as a mother of 5 (two of them being my stepchildren that my husband has custody of them) and I have always thought of them as my own, if your "own" child is important to you than I would go with a tissue valve. You will still have to have to go through surgery to replace a tissue one in about 10-15 years anyway. I would also continue to look into adoption. There are alot of children out there with nobody to care for them. Even if they don't come from your tummy directly, you still love them the same and don't think of them any different than you would your own children. I hope this helps.

 

[Lotti]

Hi Kerri. A tough decision.
My advice from my own experience is start approaching baby consultants and your own cardiologist with a view to getting advice on becoming pregnant and the care you would need and if they are willing to take you on.
I say this cause I went tissue so I could have a baby without discussing it with anyone other than the surgeon. I did not have loads of time for research. The surgeon said tissue and you can have children, but three months after surgery I was told that I could not risk pregnancy even with a tissue valve. If they had told me that I would have gone mechanical. I can tell you I was pretty angry with the surgeon for not telling me the whole possible story.
Saying that I know there are quite a few here who have successfully had a family after surgery.
So that's my advice...research...research...research and if you can find a Doctor willing to take you through pregnancy then go for it.

Lotti

 

[bit of a chicken]

Well, for what it is worth... It is your life, you will know what is right for you. There are lots of children in the world who need loving parents and if you and your husband want to adopt then I think loving parental relationship does not have to be genetic. There is more to any relationship than the genes you share, I think you need to speak with your husband and get the full input from your cardio. All of my pregnancies have been fully managed and overseen by the cardiologist and I am at a point where I would not consider any more children, would love another one but , have three so must not be greedy !! One thing is certain , it is not just about physically having a baby , it is where u are afterwards, how much you want to be well to actively look after that child, in your position , and with a large surgical history I would have to put my physical well being close to the top... Good luck, Kerri

 

[Bridgette]

I think if it was me, I'd go for a mechanical valve, and investigate surrogacy or adoption.
You have already been through so much and to line yourself up for surgery no 6? by going tissue now seems like a tough call.

But that's only my opinion. You have received some really good advice so far, especially from people who have had mutliple surgeries and can give you the benefit of their first hand experience, not just from quoting "studies".

Good luck with whatever you decide to do.

 

[lilteach3234]

10 days post op I am probably not the best person to respond, but I don't think I could ever do this again. This has taken a toll on my and I'm not a weakling.

I am just curious.....can a woman not get a mechanical valve and then have a scheduled c-section? This is probably a stupid question, but just curious.

 

[Marguerite53]

Being a mother, I just want to chime in. I was lucky and had a green light for all 3 pregnancies prior to any need for surgery (murmur detected, echoes fine, bicuspid aortic presumed). The babies were 3 wks early/6 lbs.; right on time/8 lbs and 3 weeks late (failed induction at 2 weeks) 10.4 lbs ). I was 34 years old with the last one and she kicked my butt!!! (a hard and fast 4 hour delivery)

You have never been pregnant. You have no idea how your pregnancy would go whether you had these heart issues or not. You are already 35. If you are getting your valve fixed before the pregnancy, then you have to mend that sternum (ouch on the growing tummy with a baby!!), how old will you be when you finally give birth? And if you have a particularly gruelling labor (back labor, hours of pushing, etc..) are you really going to look back on that romantically? FWIW, I honestly don't see how the act of being pregnant is really that important these days, when so many options are available. My children are all in their 20's and I honestly don't remember anything that wonderful about the pregnancies except that lots of people opened doors for me (and people are far more rude now and probably don't even pay attention to pregnant women anymore!!! ). It's the children that matter. OMG, it's the children!!! They are the most amazing gift.

I vote surrogacy. That way you know that the seeds are yours and it's more of a business arrangement instead of any emotional undertaking with open adoption.

Sorry to be so blunt. IMHO you need to keep your health, strength and longevity at the top of the list of what's important.

You are a brave woman. I admire you your wishes and your courage.

Best wishes.

Marguerite

 

[kerri73]

Thanks again, everyone, for all of your input! It's been good to hear from those of you who have been there (both from a valve standpoint and a mother's standpoint). You've made me laugh and smile...

I guess for me, all my life I've never really been one to have the "why me" attitude about my health.. it is what it is, and I can't change my cards. Not being able to give my husband a child is probably the only obstacle I've come across that has just been hard. He's been great and has joked that we'll just get more dogs. But we both want a family, and hopefully some day we'll get that.

I'll be honest, I'm slightly terrified enough of surgery #5 and any risks that may go with it... which is why I'm leaning towards mechanical again to hopefully avoid #6! My 4th surgery is the only one I have any real memories of, thank goodness (I was too young for the rest)... but it was no walk in the park. I bounced back pretty quickly, but I had a good period of time awake on the respirator and that was no fun! I'll have a serious talk with my surgeon about this before we move forward.

Anyway, thanks again all!

 

[pamela]

It seems that you're willing to plan this pregnancy so, before your decided ovulation period why not start using the safest ACT therapy and continue on with it through your first trimester? You can then resume warfarin treatment for the remainder until you need to bridge for a scheduled C-section. Just a thought, but isn't it yet another avenue to be explored?

 

[blkrino]

Kerri, if you were my wife or daughter I would vote for surrogate motherhood. Your health is still the most important thing. I would then go for the mechanical valve which should be a lot more reliable than your old one. . I have one and it works great. If you were lucky to get a baby through surrogacy you would have it all, a baby, your genes and no stress on your heart.
Bye the way I am really impressed with all the different opinions you are getting and most of them sound well thought out, giving you the best of more than one side.

Stay healthy and good luck whichever way you go

Reinhard

 

[Eva]

PS - if you are already having those symptoms, I'd try and get the surgery scheduled. Most times the valve is worse when they get in there and take a look at it than they can predict through testing.

Wha Karlynn said is very true. I am one of those whose valves were much more worse than what the tests revealed!

As for having kids, I would adopt! I applaud and praise couples who can provide a home and a future for a child who is deprived of them!

Good luck