Has anyone been pregnant with low FEV1?

[anonymous]

Hi, Just curious if anyone has been pregnant with a FEV1 between 40or 50%? How was the pregnancy? How did you feel? After pregnancy how was your health?

 

[thelizardqueen]

My doc says that he has seen pregnancy where the person has an FEV1 of 40 to 50%. He says while that is not a good number to be in while pregnant, you can have a healthy and successful pregnancy. In fact, majority of the low FEV1 pregnancies he's seen have had good outcomes. It isn't reccomended, but it is possible. Remember, the healthier you are, the higher your FEV1 is the better.

 

[anonymous]

Thanks for your reply, my CF center says they can not give the okay my FEV1 number is too low but they said I should get a second opinion because other adult CF centers may have handeled more pregnancies. I realize my number is low- but I feel really good and feel like it is the right time. So thanks again for responding. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[thelizardqueen]

You don't need the permission of your CF doctor to get pregnant. What are they going to do it you are pregnant? Force you to get an abortion? No. You know your body the best. All your team can do is give you the best treatment you deserve. I'm not saying to run out and get pregnant, but its your body, your choice. You know what you can handle and what you can't.

 

[anonymous]

My PFT ranges between 55-60, 60 usually right when I come out of the hospital. Anyway, my husband and I are thinking about trying to have a baby, and I talked with my CF doctor about it. There are a few things that your doctor should tell you before you plan to have kids, your health risks, and the possiblitiy that your child could end up having CF because you are a carrier.
My husband got tested about a week ago to see if he too is a carrier, and the results come back in two. That way we will know what the chances of having a child with CF are.
No one can stop you from having a child, or wanting a child. Utimately the decision is between you and your significant other.
Just my two cents.

Megan

 

[anonymous]

Hi

My last and final pregnancy my fev1 was low 40's. I was very tired through the whole pregnancy. my fev1 four days before delivery was 39. I had no doubt that it would come back up after delivery. My boy decided to come 5 weeks early and small for his age. He is now a wonderful healthy 10 month old baby. Before I got pregnant I lived a very normal life. I worked full time, ran around with my 7 year old daughter, I could handle all the household chores. Now..... well have things changed. Immediatley after delivery I felt great. I spent a week in the NICU with my baby. I did have a lung infection but some good antibiotics cleared it up. I started having headaches not to bad at first and as the month went by they were terrible. To make a long story short, 1 month after my boy was born I was put on oxygen, I ended up getting a bad infection and now in the process for being listed for a transplant. The doctor feels that this was all a result of my pregnancy. I never in my wildest dreams thought I was even near this point of this wonder disease. Another thing to keep in mind is I only have lung involvment so no nutritional problems, I can't imagine if I also had that to contend with.

Good luck with whatever you decide, babies are a wonderful thing but remember there is more than one way to get them.

Charlene
33/cf

 

[Scarlett81]

Well, I'm not telling anyone what to do here-just relating my experience. My hubby and I recently took a trip to the cf center to discuss pregnancy and family planning. My FEV1 at the time was high 50s, low 60s. Now I have a good relationship with my doc-mind you-I'm NOT an android who listens to every word of every doctor she has, and doesn't think for herself. I've explored alot of alternative therapies on my own. But, I really have found a doctor that I trust 100%.
She says that she can't TELL me what to do, and makes it clear that all they can do is give a best estimated guess, not an exact outcome. But, she strongly felt that I was not healthy enough to carry and give birth. I also have cepaica so that's an extra little monkey wrench in there-keep that in mind. She wants to see me at 70+ and holding that for 6mos-a year to then decide if I'm healthy enough. We also talked about adoption which we are also comfortable with and just as happy to do, though it has its own complications. So to make a long story short-there's pros and cons to each options-there's no care free easy way to be a mom with cf. And as a few mentioned-the one thing they do feel is that usually a healthy patient before baby is a healthy mom after baby. That goes for adopting too-still gotta do all those therapies and rest enough even with the added responsibilites.
So now I've gotten my PFT up to 75% with ALOT of work and new exersize routine-and I'm hoping to hold this for a while-test myself. And we'll go from there. THough we are still leaning more towards adoption-due to cepacia comlpications and the burden of carrying the baby.

 

[anonymous]

I was just wondering what kind of therapies you do to make your PFT go up like that? It's wonderful that you have come back from 60's!!

 

[anonymous]

i have a question about it. if your doctor told you that your baby haves a good chance to have cf, would you still try to have a baby?

 

[anonymous]

Come on people, what about all those children out there with no good homes to go too????? Adoption is a very good idea! The mother needs to be healthy to take care of the children!

 

[thelizardqueen]

Adoption is an idea yes, but I do know there are people out there that want to be pregnant, that want to enjoy every little thing about pregnancy, etc. I'm all for adoption, but keep in mind that there are also waiting lists, screening, etc.

 

[anonymous]

I agree that adoption is a good idea but how can we adopt. I thought that no one would allow CF people to adopt, given the outcome. Even foreign babies

Sue 24w/CF

 

[thelizardqueen]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

I was just wondering what kind of therapies you do to make your PFT go up like that? It's wonderful that you have come back from 60's!!</end quote></div>


Exercise, exercise, exercise. PLus being diligent with your treatments, nutrition helps as well.

 

[thelizardqueen]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

I agree that adoption is a good idea but how can we adopt. I thought that no one would allow CF people to adopt, given the outcome. Even foreign babies



Sue 24w/CF</end quote></div>


You don't have to tell them you have CF. You really don't. This topic has been brought up before. I'm pretty sure that they can't put CF against you. I mean what happens if you are both healthy and your husband dies of a heart attack? - you're left with one parent.

 

[blindhearted]

My PFTs are in the mid to low 30s, my doctor old me if my husband and I plan on having kids we better do it sooner than later, but personally I think my PFTs are a little too low and my husband agrees. I think the risk would be too high, not only to me but the possible survival of the baby. I have thought of adoption as well and talked to someone (w/ CF and has adopted, I believe it was on this site) about it and I have heard that they do ask for your medical records. So I'm sure if you are sick enough, they will use CF against you. I was told it could come into play...not always, but could...it just depends on your agency and where you are adopting from (some countries are strick), etc. Plus there are long waiting list for certain places. But that shouldnt stop you from trying to adopt. And if you want to get pregnant and have a baby, look at ur risk, your docs experiance, how much they can help, and how fast your health declines, etc. If you decide to go for it then get in the best shape possible (excerise, healthy weight, go in the hospital for tune-ups, etc.) Good luck in your decision.

 

[Mathews]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

I agree that adoption is a good idea but how can we adopt. I thought that no one would allow CF people to adopt, given the outcome. Even foreign babies</end quote></div>

We adopted both of our children. Hubby has CF and disclosed it for both adoptions. One domestic adoption in US and one international adoption.
Hope this info. helps!!!

Adoption is a wonderful adoption to bring children into your home!!!

 

[Allie]

We were the same as Mathews, only it was one domestic adoption.

 

[ladybug]

I have checked several agencies for foreign adoption and ALL of them have specifications on what the different countries will allow. For example, many places in Russia need your medical records and their docs do an exam. There are several other places that won't even look at you if you don't have a "normal life expectancy".... and, yes, you do have to have medical evaluations as part of the home study process and disclose all meds, etc.... I have also talked with people who have adopted that say they just really down-play their CF and make it sound to the social worker that does the home study that its not a big deal and they're very very healthy. It usually works out. But, again, certain countries DO have restrictions (much like China won't adopt to anyone younger than 30, etc....) It really pisses me off, but its the cold, hard truth...

As far as FEV1 and pregnancy, I was always told by 2 of my CF clinics that if I feel great and am diligent with treatments and can maintain lung functions of mid 50's and up, I should have no problem carrying a baby. I'm still a skeptic though and worry a lot about all of this. I actually have a chat set up to address such questions if you want to post with other women with CF who may want to have children (by whatever means) and CF moms.

Feel free to check it out:
<a target=_blank class=ftalternatingbarlinklarge href="http://groups.msn.com/CFandmotherhood">CF and Motherhood</a>

 

[anonymous]

We are in the adoption process right now. But, we have been turned down by Russia, Khazakhstan, and China. On the domestic front we are on a waiting list to get on a waiting list to see if we are chosen by a mom. You have to disclose your medical history for domestic and international. This is done during the home study.
I have always been told 'just adopt', well when you actually try to, it is almost impossible. I know a lot of this depends on the agencey also. We are using several.

We are now trying to see if we can save up for surrogacy. We will never actually have enough to do surogacy though. I think my husband is just humoring me with trying. But, I know he wants to be a daddy too. Does anyone know if the cff or anyone offers scholarships or grants to people trying to have a baby through unconventional ways? When I die I may start one <img src="i/expressions/face-icon-small-tongue.gif" border="0">

If none of this works, I may just try to get pregnant myself.
But, we are not giving up hope. I know we were meant to be a family. Just don't put all of your eggs in the adoption basket. I did, and got burned pretty bad. Adoption also depends on your age. Well, at least the wait--and if you are patient enough. I have been told a minimum of 7 for domestic. That will put me at about 36 before I even have a child. I should have gotten married and pregnant when I was 20-24!!! Oh well. I am not worried though. Well, I am, but I am done griping. It will happen for us. I know it will!

On a side note--- I wonder if they are stricter on us (or females with cf in general) because I am the 'mom', and when I die it will be just a dad left?? I know Allie said she adopted domestically????
<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Allie]

Yep, Ry and I adopted domestically. We waited only about 2 years. Don't let ANYONE tell you the minimum wait time is 7 years, that's ridiculous, and I'd change agencies. Obviously, they vary tremendously, but we were told our wait time of about 2 years is normal. It depends on the type of adoption you want. Ours was open, didn't care about race, any gender. Again, it's totally random, but I was told 3 months to 4 years is about normal. Depending on if you located a good agency, areas you look in, openness to race, etc.

I would ask any agency:

How many adoptive families do you currently have on your list?
What is your annual number of adoptions that you are involved in?
Of your annual adoption number, how many of those adoptions did your agency find the birth parents?
What is your average wait for an adoption?

In our case, a girl from our temple knew we wanted to adopt and contacted us, so we weren't 'found' a child. But we had an asoption that the birthmother had chosen us, and then decided she wanted to keep the baby, because clearly a 17 year old single mom would be better. <img src="i/expressions/face-icon-small-tongue.gif" border="0">

OKay, I digress lol.