Introduction & Handy Hints Needed!

[Tori 34]

I just wanted to introduce myself and say hello to all the very helpful people who have posted on this forum. I discovered the forum a couple of days ago, and have been lurking reading your posts and learning a lot. I'm afraid I am not very clued up at the moment so reading info on here has been wonderful!

I have known from a very young age - since I was a toddler - that in time I would need a valve replacement. I've never worried about it because my mum always said that medicine changes a lot so "who knows" what will happen in the future, so naturally assumed I would somehow escape the process! I had my first child 6 years ago, and my aortic stenosis didn't cause any issues. The doctors were a little concerned and said they wouldn't allow me to push my baby out for very long, but I managed to get her out in an hour, so no issues there! This confirmed to me, that really I didn't have a serious issue.

Three/four months ago I went to my doctor as I wanted to train for the Paris half marathon, and I needed a doctor's sign off to allow me to enter. Cutting a very long story short, on the back of an ECG the doctor refused to sign me off and I was sent for an echo and an ECG at the hospital. The cardiologist told me that I needed to limit my running to no more than 20 minutes light jogging and I was to stop weight lifting - he then sent me for a cardiac MRI at a different hospital. I find out this Friday what the results of the MRI were "officially", but after having the MRI I chatted to the guy who'd done the MRI. He said nothing could be certain until I'd had all the measurements and results fully analysed, but on first look and taking he would classify the stenosis as "high medium/low severe". He said my heart is a bit enlarged, but there's no issue with aorta itself, and he showed me on a screen how the aortic valve isn't opening and closing properly (apologies for being so unscientific about this!). There's an issue with the mitral valve as well, but that's pretty mild. As I don't think I have any symptoms, he says its probable that the doctors won't go ahead immediately, but in his opinion an operation would be about 6 months to a year away (understandably he put loads of ifs and buts around it, saying the results need to be looked at properly and sometimes patients surprise you with swiftness of downturn/no downturn in symptoms at all)

My real dilemma is that I really want to have another baby. Until I read this forum I didn't even realise that you would need to take anti-coagulants after the operation (I actually didn't even realise it was an open heart op until I spoke to the people doing the MRI! ) The idea of having a tissue valve doesn't appeal because I definitely only want to have the operation once and given my age the op would end up having to be done again. Having read the potential side effects of carrying a baby whilst taking anti-coagulants that's also not a route I want to go down. Obviously I will speak to the cardiologist on Friday about exactly how well my heart is coping, but I wondered if anyone here has been in a similar situation and had gone through a pregnancy when they were told the op might be about a year away. I'm keen to understand how much of a strain they thought the pregnancy put on them and whether the symptoms got any worse? In my first pregnancy I can't really say that I felt any worse than any other pregnant woman does towards the end!

I really would love to have another baby so if any one has good suggestions about what I should be asking the doctor so I can make the most informed decision, that would be much appreciated.

Thanks in advance for your help, and having the patience to read such a long email from a very uninformed individual!

Tori

 

[Ross]

Hello Tori and welcome to the forums.

First thing, get copies of all of your medical reports to keep for yourself! We really need more information. It sounds like your needing surgery sooner then later since your heart is already enlarging. Left go too long, it may never recover.

Secondly, if you still want to have children, you should go with either a porcine or bovine tissue valve. Doing that, so long as you don't develop Atrial Fibrilation after surgery, would keep you off of anticoagulants. The down side is you'll need the valve replaced again at some point in your life.

You could go with a Mechanical valve and anticoagulants, but it is highly risky to have a baby while on anticoagulants and takes a special team of doctors to deal with it. In short, it certainly is not recommended, but it is possible. The downside here is anticoagulation for life. The upside is, you'd likely never have to have the valve replaced.

There are no guarantees that you won't have to have either replaced again.

There have been a couple, though I don't know if they're still around, that had babies before heart surgery. Most of them did well, but yes, it does place an extraordinary strain on your heart and to be quite frank, if yours is enlarging now, I don't think I'd risk it. I'll let the others talk with you since I'm male and baby stupid.

 

[Mileena46]

Hi Tori,

First I would tell all you have told us to your doctor, but like Ross I think if my heart was already beginning to enlarge I would do the surgery within the next few months (at least).

I KNOW how heart breaking it is to want another baby and not feel your body can handle it. I guess you would have to weigh the options of a tissue valve and re-op or having a new baby.

I can tell you what I would do....but you still need to put a lot of weight on your doctors response. I would have a tissue valve and then have another baby. Next surgery I would go with mechanical. Luckily, I was unable to conceive after my son and now at my age it wasn't an option. I went mechanical, but if I were younger even now, and could have another baby I would still try to do that.


I wish you the best with any choice you make!

Mileena

 

[Marguerite53]

Welcome to our wonderful community!!

Breathe deeply, for all is well! You are young and healthy (other than your little valve) and whatever plan you make, you will be fine!!

So think of this as the first stage of building your plan. You are not in crisis -- your valve sounds like it is definitely on the downhill -- but you have time to work with your husband and create a plan for your family. All is well.

For many of us with a stenotic aortic valve, it went downhill very slowly for the first major time span, then towards the end, say in the last 4 months, it closed up more quickly. Not as in good one day, horrible the next, but a steady closing, stiffening toward a dangerously low opening. When the valve is closing down, it puts more work to the heart in general. Thus, the heart enlarges. That is the indication that your heart cannot take too much more hard work like that, and surgery is indicated.

I was 52 when this happened to me. I had 3 children in my early 30's; normal births (well, the 3rd one was over 10 pounds-- nothing normal about that!! ) I did not have any idea about how all of the heart stuff would unfold either. They really don't tell you much unless you need to know.. Obviously you and I did not really need to know until the time came. So that part is fine.

My heart was described as mildly enlarged. I don't think this has changed much since my surgery -- oh well -- it's a little bigger than it should be. It isn't damaged and that's the important part.

Here's where the plan comes in. For me, just before my surgery, I needed 2 other medical procedures, unrelated, done. I was close to hysterical -- why should this all happen all at once!! But my husband recommended that I get my general doctor on board to help me coordinate all this and help me make my choices. WONDERFUL advice. So I am passing it on to you. You get in touch with your obstetrician. Let that doctor know what is going on. Have that doctor talk with your surgeon and your cardiologist and have them decide what is the best plan for you. They can see things that you cannot. THey have experiences to compare that you cannot.

Again. This may all be possible for you. Keep the faith!!!

Please keep posting and let us help you through in any way we can.

BEst wishes.

Marguerite

 

[coach14]

Tori,

Welcome to the forum and feel free to ask away.

Valve selection is a very personal decision and for every opinion you find on here, there will be an argument againt it. It comes down to what you are most comfortable with.

While I cannot tell you how to decide, I can only give you my experience. I am 42 and had an AVR on 7/27. I choose a tissue valve - edwards/carpenter bovine, 29mm. I am very active and was not ready to commit myself to a lifetime of anti-coagulants. I will say this - the operation and recovery was much better than I expected. I realize that I may be in the minority, but it was much easier that expected. If you are a runner, then you should be in good shape and recover very quickly. I am only a recreational runner (3-4 miles at at time), but it definitely helped. Given my intitial experience, I am not worried about the unavoidable future surgery (assuming I don't step off a curb and get hit by a bus). Good luck with everything and let me know if I can be of any help.

Coach

 

[neil]

tori
welcome to the forum,you will find lots of useful info on here,good luck.........

 

[Mentu]

Hi, Tori, welcome to VR. Don't Panic. As Marguerite pointed out, most of us know about the problem with our valve long before significant symptoms appear. You need to make your decisions with your Doctors based on the measurements revealed by the tests, how you are feeling and what their experience tells them about your condition. Ask your Doctors specific questions about the size of your valve area, the pressure gradient and how advanced is the heart enlargement.

I knew I had a problem 10 years ago but it didn't interfer with my life until this past year and I didn't start feeling really ill until about 3 months before surgery. You, may find that you also have some time before surgery is recommended.

 

[river-wear]

Hi Tori, welcome! I'm sorry that you've ended up here so soon.

Another option you should ask your doctors about is the Ross Procedure. It isn't for everyone, but MIGHT keep you off anti-coagulants and not require another surgery. They use your pulmonary valve to replace the diseased aortic valve and a human donor valve for the pulmonary position.

Michele

 

[Ashley]

Hi Tori,
I'm in a similar situation and my doctor is looking at a few options for me with regards to pregnancy. Check with your doctor to see if you might be a candidate for a Ross Procedure - if you are and can find an excellent surgeon to do it (from what I understand there are probably only a handful of surgeons in N. America who you would want to have perform it) then that might be a good option for you. We are also exploring the possibility of a balloon cath to try and open up the valve a bit to get me more safely through a pregnancy, although this is really just a short-term solution - the valve will have to be replaced eventually.
My Cardiologist has told me that there isn't a lot of information/research about heart disease and pregnancy available...so good luck with your research (and please let me know if you find any good sources). I'm happy to share what I do know if you have other questions.
Ashley