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CF mom, pgd, ivf

anonymous

New member
I am a 26 year old CFer whose husband has just recently been tested for mutations. We don't have the answer yet, but we're trying to plan for all possibilities.

We would really like to have our own child if at all possible. My parents have already volunteered to pay any and all costs for IVF, PGD, etc... if necessary, so we should be able to go through with this. My PFTs are all is the 115-120 range and I've been polyp free for five years now, so I'm in excellent health to be thinking about having a baby.

My question from reading the PGD stuff is: have there been any CF patients pregnant wtih twins? Uneducated, I tend to think that having twins might actually be better for me healthwise than two pregnancies, because I'd only have one period where I couldn't take a lot of my drugs. Obviously, I don't plan to set out to TRY to have twins, but from my understanding we can dramatically increase the likelihood of having a successful pregnancy if we are willing to entertain the possibility of twins.

Also, is there some way that we can allow partially for the likelihood of multiples without signing onto the highest risk level? I know that Julie had triplets with only two embryos implanted, but is that normal?

Another question I have is whether the thicker mucus that I have will affect the likelihood of the implanted embryo implanting and being carried to term or if it just affects the likelihood of a natural pregnancy? And if it does, should we have more embryos implanted?

Hopefully he will come back as a non-carrier and we can do this more simply, but I just feel the need to know just in case. And, I'm curious about the twin thing independent of PGD, because it sounds kind of like a good idea to me. . .
 

Scarlett81

New member
A patient at my cf center recently had twins. Of course I dont know her b/c I have cepacia, I only heard all this through word of mouth from my cf staff.
You are right that in theroy, provided you can sustain the pregnancy-it is easier to have twins b/c of the medication issues. Esp is you know you want to have more than one child anyway! Of course, you only have so much control over this!<img src="i/expressions/face-icon-small-smile.gif" border="0"> Youre pfts are awesome! I'm sure you'll be ok. I have several twins in my family, and from being around the mothers, yes its harder. But it all boils down to support. If you have support around you, esp a supportive partner-you'll be fine! It will all come naturally.

The twin pregnancy I heard about went great. The mother had to have a C section, which is common in mulitiple births anyway. Now the only added complication in that case for a cf mom is with a c section ,it takes longer to get back to your chest pt routine, b/c you can't do that forced coughing/vest. And in turn that can make things harder b/c you have to try to get your pfts back up after pregnancy asap. But it is definately not a dealbreaker by any means!

In most cf pregnancies there is a high risk of delivering pre-term. In the safe zone, but still preterm. This is b/c the baby is taking alot of your oxygen out of the bloodstream, and the cf lungs just say-I've had it! And you go into preterm delivery. I have been told this risk goes a little higher with a mulitple birth. But again, not in a danger zone.

My hubby and I are trying now, so we just went through all the risk/most likely scenario stuff with the cf team and OBGYN.<img src="i/expressions/heart.gif" border="0">

I can't help you with the genetic stuff, but there are tons here that can! JULIE!!!!
 

anonymous

New member
Christian,

Thanks for the info. I appreciate all the help I can get :). I definitely do not want an only child. I have one brother and I would identify him as one of the best parts of my life. Oddly, his wife was insistent on not having any more children after their first, so he has an only child. Touchingly, this woman who I adore has not only volunteered to serve as a surrogate mother for us if we find it's needed, but has actually seen a doctor about the feasibility of it. This may not seem touching, but she was not a fan of being pregnant with her daughter, so this offer really was amazing to me. However, despite her insisent research and frequent re-offers, I just don't feel comfortable asking anyone to do this for me... Also, missing out on the pregnancy bothers me a little, but mainly it's the imposition on another human.

The argument that she and my brother present is that if being pregnant means that I can't take drugs or do things which might impair my current great health, they would do anything to prevent that. They've recently switched to what they are calling the "selfish argument" -- I'm their daughter's only aunt and so I shouldn't risk my health for her sake. As you can tell, these two are amazing...

At the moment I just can't bring myself to think that having a surrogate is hte best idea. I think that after one pregnancy I might be more willing to consider this for a second, but I just can't wrap my mind around it.

Based on what I've read, I think I'm a stellar candidate to have pregnancy while having CF. I was a nationally competitive athlete until a couple of years ago, so my PFTs used to be phenomenal (upper 130s) and are still pretty darn good. I still have to use an electronic peak flow meter because the others only go up to 800...

On one more related question: what drugs can you keep taking during pregnancy? I'm assuming the vest is way out because of the vibrations, but what about cpt?
 

JazzysMom

New member
Basically there is always a chance of multi births, but its increased greatly when using outside means (fertility drugs, IVD etc). Each CFer is different. I would like to point out one thing about mutlibirths. The idea that one pregnancy would be easier on you then two is acceptable tho not completely accurate & you need to remember the actual after care. My pregnancy (1 baby) was fabulous & I worked the whole time. My difficulties came with caring for her. Thankfully my daughter was an excellent baby otherwise I would have more problems & sooner. BTW I had a c section & doing treatments is painful, but not impossible. I had a good clean out prior to the c section so I had a few days where it was imperative that I cough so hard. I was home & moving furniture withing the week (shhh dont tell the doctor)!
 

julie

New member
Anon, if you can email me at division902@verizon.net I have a friend who has CF and she had twins who are now 19 months old (I may be off a few months <img src="i/expressions/face-icon-small-smile.gif" border="0">). She's happy to share her story and answer questions that anyone might have but I personally prefer to share her email privately as opposed to posting it publicly on this board. So, please do email me and I can put you in touch with her, she's great!!!
 

julie

New member
We did something called assisted hatching with our IVF. It is NOT always used, but since we had so many eggs but only 4 fertilized (which is VERY common with sperm retrieved from the testicles) the doctors wanted to give us the best chance possible. The decision was further "grounded" when we went in for the morning of the embryo transfer and only 3 had made it through the night. So if you do Assisted Hatching (AH), it increases your chances of implantation, but it also increases your chances of identicals. We didn't know that at the time. Would I do it differently? Probably not, these children will be in our lives for a reason. But I would have prefered that someone tell me that it increases the chances of the embryo splitting. Identicals are NOT genetic, there is no rhyme or reason for them (contrary to what you might hear) but they do know that AH with IVF contributes to the splitting. Fraternal twins ARE genetic, but since you are going to be doing IVF that's a mute point.

Thicker mucus is generally not a factor in an IVF pregnancy because the implantation directly into the uterus skips the thick cervical mucus. Before you have IVF (If you go that route) you should have an HSG done to make sure that everything flows and is "working properly" in your uterus. The HSG can detect some problems and you can work to correct them before the IVF if needed.

Hope that helps, and please email me so I can give you her email address and you can ask her twin/CF mom questions <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

anonymous

New member
I stumbled across an article looking at pregnancy in those with CF. It seemed like it had a lot of good information, but since it's not really relevant to me, I didn't read the whole thing. HOpefully someone will and can report back.

it's located at: <a target=_blank class=ftalternatingbarlinklarge href="http://www.chestjournal.org/cgi/content/full/124/4/1460">http://www.chestjournal.org/cgi/content/full/124/4/1460</a>
 
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