Attempting to pull myself together

[*Jo]

I've been on here less than a week, and I think I'm actually starting to get my head around things. Don't get me wrong, still petrified, but you guys and my colleagues at work have been just what I need.

So here I am, I've spent all my life thinking I couldn't conceive. In the middle of march I found out I was pregnant. At the beginning of April I found out I'd miscarried and I needed my valve replaced, and once done I wont be able to have children. What got me through my miscarriage? The knowledge that had it not happened I wouldn't have had further tests on my heart, and I wouldn't have known I need surgery. My baby saved my life. I'm terrified. I have chronic anxiety and always think the worst. So naturally my head focuses on the 'what-ifs'. However, after reading several posts on here and talking to colleagues who have had major surgery for other things, here's where I'm at now.

I want to know more but not seeing my surgeon for potentially another 5 weeks - I went on the British Heart Foundation website, made a donation, and ordered some useful leaflets.

A couple of folks on here recommended the GUCH website - I've been on and introduced myself

My anxiety is playing tricks with me - I can go get medicine, and also have the 'CBT Workbook for Dummies' I can go through.

My mind is working overtime with the 'what-ifs' - started compiling my list of questions for the surgeon (I can't do anything else).

I'm petrified - my colleague said why worry about something you can't change - and they're right

I'm feeling every niggle and 'symptom' since seeing my Cardiologist - accept that it's anxiety and nothing worse.

Panicked when seeing the phrase 'SDS' - as you guys said, they wouldn't have let me out of the door if there was any risk!

I don't think I'm totally there yet, as even now, as I write this I'm so scared, but I need to think more positively. I read somewhere that recovery is improved through positive thinking (that and my desperate need to stop smoking!). Negative thoughts will do me absolutely no good!

I already feel like a member of this lovely family and I can't thank you all enough for the support you have already shown me.

Jo x

 

[Sarah_Louise]

Hi Jo,
Nice to see you on the GUCH boards you'll find lots of help from people on there too,
Keep us updated
We're all behind you,
Love Sarah xxx

 

[Jeff Edmonton]

Hey Jo!
I was a mess myself. You have already been through so much "you will be fine" fear is a great motivator. We are only 3 hours away, jump in a boat and meet me in the North Sea. The weather is wonderful out here...lol
Like you said, stay positive, focus and prepare yourself.
Jeff

 

[Greg a]

WAITING IS THE WORST PART it is the family's mantra

 

[Luana]

I
So here I am, I've spent all my life thinking I couldn't conceive. In the middle of march I found out I was pregnant. At the beginning of April I found out I'd miscarried and I needed my valve replaced, and once done I wont be able to have children.

There's no reason why you can't have children after VR as long as you get a tissue valve.

 

[Duffey]

Hey Jo,

I'm sorry about the circumstances that brought you to VR.com, but I'm glad that you found our group and hope that we can help.

Try to stay positive; we're here for you.

Mary

 

[selma]

Hi, Jo --
Try not to beat yourself up for feeling anxious. It's normal and educating yourself is the best possible thing you can do. I'm an anxious, what-if kind of person myself -- well, I *was.* Interestingly, this whole process seems to have changed that for me. I came here like pretty much everybody else, scared witless and convinced I'd die. Over the months, reading everybody's posts and learning all I could, I feel soooo much calmer. It wasn't even a conscious act of will to stop worrying -- it just happened naturally. I'm going to have my surgery this Friday (today's my last day at work) and am truly amazed at how much my attitude has changed, in large part due to the positive stories I've heard here and at heart-valve-journals. You are going to be FINE!
Selma

 

[AgilityDog]

Absolutely you should speak with your surgeon about getting a tissue valve, so you can carry a child after your recovery.

Don't rule it out if children are important to you. You CAN get a mechanical valve in 10 or 15 years, after you get a baby or two! Lots of women feel getting babies is well worth having a second surgery when necessary to replace the tissue valve.

 

[*Jo]

Hi Jeff - I'm setting off now I'm hoping being on here helps me build my strength

Hi Greg - I agree, it's the waiting. The nurse said to me "it's not like we are saying you need it tomorrow" - I'm not sure that would've actually been better!

Hi Luana - They've already confirmed that afterwards they expect an 18mm valve with at least 50mmHg, and I have no choice, I have to have a mechanical one.

Hi Mary - Thanks for the welcome - it's true that you only go in search of something when you really need it

Hi Selma - That's exactly it, I'm scared of being the 1 in 50

Hi Laurie - As I've said above, they said my best chance of recovery is a mechanical one, and they also said "ideally" they only like to open you up twice out of choice - and I've already been opened up once. Whilst I really wanted to be a mother, I want to be healthy more. My Cardiologist gave me stats, and in last year, out of all valve replacements, 9 out of the 11 who have got pregnant have had serious problems. My other half has said there are other ways of having children than me having to carry and give birth, and he's right. If it's meant to be then I will find that path another way

Thank you all so much, I was telling Sarah earlier that I have already seen a change in myself, although still slightly pertrified x

 

[Lynlw]

Hi, Sorry you are having to deal with so much. Was it your cardiologist who told you you dont have a choice, mech or tissue, or a surgeon? I would definately be getting a second opinion. Also I'm not sure where those bad stats from pregnancy with a valve replacement came from and IF that was all valvers or just those with mechanical, since there are quite a few mothers who've had children with tissue valves and even other more complex CHDs. I know you mentioned you will be having a CHD surgeon, but does your cardiologist also specialize in CHDs orhereadults with CHD? if not i would probably try to see one that is.
Ok rereading i see you havent spoken to a surgeon yet, I would probably wait to hear what the surgeon reccomends, before making up yur mind about all the choices since usually they have alot more knowledge that cardioloists.

 

[*Jo]

Hi Lyn, they said last week I would meet my surgeon in 6 weeks, and it was the Cardiologist who recommended it. She specializes in pregnant women with heart problems and children with heart defects. Like you said though, the surgeon will be better placed. xx

 

[Orangebrittainy]

I am 26 years old. I was told I would never have children, but God blessed me with a beautiful boy. A year and a half ago I choose the mechanical valve when it was time to have my surgery. I felt that since I already have been blessed with one child, that it would be foolish for me to put that child and my family through a second surgery. It was the toughest decision of my life and one I struggle with pretty regularly. I understand that the mechanical valve is not by choice, but I want you to know a few things.
1.It is possible but extremely high risk for you to have a child with a mechanical valve. Women who are pregnant are at an increased risk of clots and woman who have clots during pregnancy have to have regular injections of Heparin. I am not telling you to do this, but I want you to know there is the option, although it would be hard finding a doctor to agree to help you.

2. Seek some form of counseling to help you with your grief. Although overall I am getting better and accepting the fact that I won't be having more children, I still struggle with it.

3. Consider Foster Care or Adoption. My husband and I have, and although I would love to do either, the doors haven't opened for us.

((((HUGS)))) I understand that this is a very trying time.

 

[*Jo]

Hi Brittainy, thanks for your comments above. You're right, it is really difficult to accept things. It never really bothered me because I truly thought I couldn't conceive. It kind of changed things when I realised in March that I had and was pregnant. To be then told I had miscarried and it was not recommended I got pregnant again was a bit of a kick in the teeth. However, I'm still firmly of the belief that my body allowed me to get pregnant and go through what I have to highlight my deteriorating AV. Without that I would never have found out until possibly it being too late. Yes I'd like to have children, but I want a good working valve and my life more. I do feel a bit selfish saying that, but your option 3 is something my other half immediately said when I told him.

Guess I will just have to hang fire and wait and see. Who knows what will happen after my dreaded op

Jo x

 

[Jkm7]

Why are you given no choice as to tissue or mechanical?
That is such a huge, personal decision for most of us and we evaluate carefully before making that choice.
I never would have accepted being told I had to have a mechanical valve. I knew for sure tissue was my right choice though, of course, I know that is not the case for everyone........ but that is exactly my point.

When I had my tissue valve implanted, it was my second OHS.

 

[Luana]

Hi Luana - They've already confirmed that afterwards they expect an 18mm valve with at least 50mmHg, and I have no choice, I have to have a mechanical one.

You're having the aortic valve replaced? Mechanical valve sizes start at 19mm and increase in increments of 2mm to 20-something, maybe 27mm, so that number does not sound right at all. 50mmHg is confusing as it sounds like a pressure number of some sorts and not anything to do with the size of a valve. mmHg is millimeters of mercury, not a size measurement.

I would definitely get a second opinion, too. I know some people who've not been able to have a mechanical valve but have not heard of one who cannot get a tissue valve, so this seems a bit suspicious to me.

 

[Sarah_Louise]

You're having the aortic valve replaced? Mechanical valve sizes start at 19mm and increase in increments of 2mm to 20-something, maybe 27mm, so that number does not sound right at all......

Luana,
You need to remember Jo is a CHD'er so therefore valve sizes are a comletely different story to a "normal" heart & valve replacement, and sometimes us CHD'er do need smaller valve & bit and pieces because when we are born out hearts aren't of a normal size so the surgeons adapt the valves etc to fit into our hearts,

Love Sarah xxx

 

[njean]

A big welcome to you, Jo and glad you found us.

I am so sorry to read about your miscarriage and to the devastating news that you may not be able to have children. But I also think that the good Lord blessed you in that your heart condition was discovered during this terrible time.

I was 24 years old and waiting for my first surgery when I became pregnant and had to have the pregnancy aborted because I was told that I would not be able to go to term and both my child and I would die. You can imagine how devastating this must have been for me. But in time, I learned to accept things as they were, and later on in life, I married a man with two wonderful children that I have loved as my own. I'm even a great, grandma!!!

I pray that you can be a candidate for a tissue valve and can have children of your own someday, but if this is not meant to be, then it isn't. I have heard there have been women with mechanical valves that have gone on to have children but as 'Orangebrittainy' said, it is extremely risky and not many doctors will support this decision.

The fear and anxiety that you are feeling right now, is very normal. We all went through it, but here we are and you will be too. Praying and hoping for the very best for you!

 

[*Jo]

Hi nJean, thank you for your kind words. My Cardiologist has said that the recommendation, because of the current issues with my valve, is to have part of the muscle cut away and a mechanical valve put in. She said it would give the best result with minimum risk. I think I was misunderstood earlier. My current pressure in the heart chamber is 105mmHg, and after having a replacement they predict I will still have a pressure of at least 50mmHg. This has nothing to do with the size of valve. My own valve is 14mm and the smallest they will fit in is 18mm. I'm not sure if there is a difference between sizes in the UK and US, but they definitely said 18mm. I guess I will have to wait and see. Thanks again, Jo

 

[Orangebrittainy]

Just want to let you know I am thinking of you Jo!