Asking for Opinions From You-please

[Scarlett81]

....I said "please"

OK I changed this topic title b/c what I'm asking isn't directed at "mom's" only.

1st off-Just know that if some of you are wondering why in the world am I asking this to such a broad range of people-I'm not going to run out and get pregnant or tie my tubes based on what someone here says. I guess that's my "disclaimer". So please feel free to leave your opinion.

2nd-We've had the "is it right or wrong for a cfer to have a baby" debate. That is not what I'm asking. I'm asking based on my personal info-do you think someone like me could/should get pregnant?-I know big question. And I KNOW you're not doctors-so don't get all politically correct on me.

So I'm still in the planning/development phase of starting my family. We were heading towards adoption, however my health has improved alot recently. Even my doctor said I should not be closing that door. So now we're leaning more towards pregnancy.

I am 23, steady 125 lbs-I've never had the weight issue-My lung funcion is FVC-95, FEV1-75, FEV2-56. (In the past year my function has actually climbed higher!) To put it sort of textbooky, I am healthier than I've ever been.

The bad part-I have cepacia. There's not alot of info on preggers with cepacia. I feel that lung function should precede wether or not you have cepacia in deciding to get pregnant. But, it still is the major concern.

Ok, the floors open. I just want to kind of take a poll here. In all seriousness I really appreciate anyone for taking their time to help me out. I need to hear some things. No one in my life really understands just how big a decision this is.

 

[Jem]

I can tell that you are really torn, Christian. And you might be looking for an answer that doesn't exist because like you said there is not enough information out there with how cfer's with cepacia do going through a pregnancy. You and your husband have to decide together, if for you, as a couple, this is right or not. And when you do, either go for it with all your heart and determination or close the door to pregnancy and adopt.

Your numbers are higher than my were when I went through my three pregnancies but I do not have cepacial. Your doctor seems to be thinking you might be able to do this. That certainly is encouraging.

If your are looking for a "yes, get pregnant" or a "no, adopt" from me, well, I can't do that because like you said no one really knows how big a decision this is for you. So maybe my post is not much help. Somehow thought I think maybe you might already know what you should do deep in your heart but are looking for support. My advise is be patient, focus on your health and follow what your inner voice is telling you. I wish you well in making this tough decision and I will keep you in my prayers.<img src="i/expressions/heart.gif" border="0">

 

[JazzysMom]

OH Christian Honey......I wish this was a cut/dry answer for you. I think its great that your health is improving. I am proud of your effort in that. I dont know enough about Cepacia to give much input. I never heard of it until coming here. I do know that its a bug that can be pretty unpredictable at times. It has varied greatly from the those dealing with it for years to a short sprint with it like Ry. I would say as a Mom with CF that it scares me to think of you having something additional to the usual CF problems to deal with. You dont know how your body will respond to a pregnancy & the unknown is what your biggest obstacle is. I know in your heart you want to have a child & experience the pregnant, but then your head kicks in & goes thru the rational reasons to do it or not do it. You will be a great Mom whether you conceive or adopt. Dr. Walker is telling you not to rule it out completely? How does she feel about the Cepacia factor alone? Not your state of health per say, but having this bug? Sorry Sweetie....dont have much else to really offer. Aint it a b!tch when you cant just have someone make these difficult decisions for you?!

 

[Scarlett81]

dr. W is looking more at my lung function #s as a sign than my cepacia. As was said, cep is a bug that flares its head when no one is looking. It's hard to predict. The plus is I haven't had a cep flare up in 3 or more years.

What Janet said about her #'s during pregnancy is kind of the info I was looking for. My numbers compared to what others who have done it have been.

It would be awesome if I could just ask my CF Fairy "what to do....?" But alas-I'm not Cinderella and this is not a fairy tale. Darn.

Anything you all have to say helps me. I need to hear support-not support like yeah, go ahead get preggin. Just support.

What you said Janet about following my heart-so true. I think my heart knows what I want to do. I just keep kicking it and telling it to shut up so I can think this through. (God I don't want to cry!)

Like some of you may have experienced-I was told my whole life I can never have children. It's the big ugly monster on my back. Now things are different today, and I find what I was told might not be so. But I'm having a hard time dealing with this.

 

[Tess]

Christian,

When I got pregnant it was a complete surprise ... I had been smoking near everything and wasn't doing much for treatments besides taking my pills and nebs once a day.

When I found out in March '03 that I was pregnant I quit smoking and started taking my vitamins properly... along with other meds I was suspose to be taking ...
It turned out that 'my' pregnancy was the best thing for 'me' because I took such good care of myself for my babies sake that I became the healthiest I had been since I was like 14.... I did have one issue while I was pregnant... like a month before I had her I got a sinus infection .. I was hospitalized they gave me IV antibiotics..... from October 10th until like the 27th or 28th...... and then on the the 29th I was induced and Leah was born at 8:13pm..

I only cultured cepaca like a year or so after having my daughterdid I have it while I was pregnant lying dormant in my lungs could have, I dunno.. If you want your own child then in having CF there is unfortunately a risk.... however is having your own child worth what ever my happen good or bad?.... For me having my own child was worth anything and everything .. so when I found out that I was pregnant (and we weren't really trying) I was so at ease and happy... the only thing I didn't enjoy was the actually being pregnant part.... but I got over it ....

I hope my thoughts help you in making your decision Christian ... good luck with what ever you choose..

 

[littlemisssilly]

Christian,

I just had to respond to your post. I've noticed in some of your other posts that you seem to think that B.Cepacia is contra indicated for pregnancy and I'm not sure whether such this comes from your doctor or something you've read, i'm not sure.

It breaks my heart to see you put such emphasis on one bug. Yes, I know that B. Cepacia is and has been devastating in some people's lives but try not to compare your health to others, CF is so individual. Not sure if you remember, but I have had B. Cepacia since 1998 and I really think that there is too much mis information around and to be honest, sometimes hysteria around B. cepacia and I think that sometimes even CFers that don't have cepacia can be insensitive (without realising it I'm sure) to people like us that do have B. cepacia by posting comments along the lines of 'cepacia this and cepacia that.... that's the one to watch out for.... that's the bug that you want to avoid... ' etc and implying that cepacia makes us some walking time bomb and I really have to make a conscious effort not to put too much emphasis on comments like that.

My point is, there are other factors to consider when weighing up the decision: first and foremost, the mental aspect, are you ready to take on the responsibility, your relationship etc. As others have mentioned your lung function and not so much numbers but whether those numbers fluctuate or are they stable? Weight, again, whether it's stable. Yes, Cepacia is a factor but try to look at it more broadly, for example look at your clinical history since you cultured it, has there been a progressive decline? Look at your sensitivities, eg which antibiotics is the cepacia sensitive to? what is your response to iv's? eg do you get better quickly or slowly? All these things put together are much more important than just the label "i have cepacia".

I also tried to look for info on cepacia and pregnancy and you're right there isn't much or the only info that's available are the worst case scenario reports. Remember that it's unfortunately these cases with poor clinical outcomes that make journals because they're of educational value to other practitioners I guess.

Like I said, I've had cepacia for a long time now and the medical journals at the time, predicted me to have a rapid decline in my health, lung function and they predicted I most likely would have had cepacia syndrome and not be alive today and clearly that hasn't happened, I don't know why, but it just hasn't.

Listen to what your treating team thinks, canvass a strategy plan with them in case you do get pregnant and you do get sick what options would be avavilable to you, in terms of iv's, maybe delivering pre-term, staying in hospital longer etc.

Look I've rambled enough, you sound like you'd make a great parent, I'd hate to see you get caught up in some of the hysteria that surround cepacia.

Good luck <img src="i/expressions/heart.gif" border="0">

 

[julie61554]

Christian:

I know this is a very difficult decision for you to make. I wanted to have a child so bad. My husband and I went to a specialist to try and get pregnant and they talked me out of it. But then, surprise....after 9 years of marriage I got pregnant! My fev1 was about 35% when I got pregnant. I didn't have too many hospitalizations though. My breathing function improved a little bit during pregnancy (fev1-39%). I didn't have problems with my weight so that wasn't a factor. However, I didn't gain a lot during pregnancy...16 lbs. I did go into preterm labor at 28 weeks but held it off until 36 weeks. I don't know if it had anything to due with my cf though.

There is one thing I feel that should be considered also that I don't hear anyone talking about and that is after the baby comes and especially when the child starts school would that expose you to more illnesses? Again though, this would be different with everyone, but I know with me, my health declined somewhat after having my boy. He catches anything and everything and then in turn I end up with it and usually end up on antibiotics. But even it I had thought about this factor before wanting a child, I don't think it would have changed my mind. The hardest thing for me now though are the questions from my son....why are you sick, are you going to die, etc. He is 7 now. I am not afraid to die....but I worry about the ones I will be leaving behind, especially my little one.

Anyway, I know that probably isn't much help. I pray that all will go well for you no matter what decision you make.

Julie, 38, w/cf, b. gladioli, staph

 

[Scarlett81]

little miss silly- I love your screen name by the way.

Like I said, it's the big ugly monster on my back that's been put there for years by med professionals, sad stories I've heard, and mostly an overprotective-negative mother- machine I had growing up. People mean well, but now there's this issue in the cf world I think-we are over sensitive and over scared. I agree with you. I'm one of em-but I'm working on it.

But you made me think-I was DX with Cep in 95 or 96. Wow-10 years ago. It hasn't reared its ugly head in a while.

 

[anonymous]

I have no answer for you, I just wanted you to know that I hear your plea and you and your decision are in my heart.

Listen to your heart ~ you will never go wrong.

I was adopted and my parents were healthy and could have children. So, many healthy people just choose to adopt not based on health. Its a personal preference.

I think it sounds as if you have made up your mind to me, you just need to realize it and be at peace with it.

I am so happy for you that you are healthy enough to even have the choice. You sound wise beyond your years and I think you will be happy with either decision.

I do know this for certain~ you will never be disapointed. I cant even imagine you adopting a child and one day saying "I wish we didnt have this wonderfull child to love, I wish we had tried to have our own." Or, if you do try and succeed to get pregnant, no matter the complications, you will never regret any of it. Just ask Emilee.

Either way, I wish you luck and I cant wait to see where your heart leads you.

Much love

Karenb

 

[Diane]

Hi Christian,
You have two things on your side at this point, Your age and your fev1 . Cepacia is a problem or rather can be a problem when it wants to be. Some decline fast, some decline slower ,and some dont decline at any accellerated rate. If you have had it for 10 years now and not really declined much, than you are one of the lucky ones. I've had it since 1997 and i have declined a bit , but mostly thru my own negligence. My best advice about pregnancy is....if you are really fixated on getting pregnant, dont wait too long. You want your lungs in the best shape, with the highest pft's you can get . You dont want to wait till you are starting to decline for several reasons. One it will be unhealthy for you, and you also will want to be well afterwards to take care of your baby. babies are demanding and need a lot of attention, and there isnt always enough time to rest in-between, so starting out with good health will only help you in the long run. I remember in the past, when i was still pretty healthy and had pft's in the 99% range, i had to keep my friends 2 little girls at my place for the weekend. I realized right then and there i could never have children, because keeping up with one was almost impossible, but two was overwhelming for me. Now having cepacia and pft's in the high 40's its completely out of the question. I get tired keeping after my pets , i cant imagine having a child to keep up with. Like i said you have your age and good lung function on your side, the two most important issues with cf and pregnancy. Good luck with your decision....... I wish you the best !! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[NoExcuses]

I think adoption is the best option - if you have kids at all as a CFer.

I personally have chosen not to have children and will not in the future because I feel that that choice would be a selfish one. I would have kids because I want them. And the real possibility of me dying while they're under age 18 exists - more so than a healthy person that could get hit by a car or whatever bogus examples people give when disputing my claim of CFers dying early.

I don't think it's fair to the kids. I think people's reasons to have kids are because THEY want one and they don't take kid's well-being into consideration.

Of course being adopted, as a kid, doesn't help with losing a parent. But at least you're giving an already born child a home.

Perhaps consider giving a home to a child who isn't a new-born. Those kids always have a more difficult time finding a home.

 

[Scarlett81]

ah Amy-I remember you and I have had the adoption/pregger "debate" before! At least we can laugh about past disagreements now...I hope.<img src="i/expressions/face-icon-small-smile.gif" border="0">

I am an adopted child, so I can tell you first hand how it feels to lose your parents-when you lose them by their choice. Its very different from losing them through cirucmstances out of anyone's control.

Also situations vary-while there's no substitute ever for your mother, there would be my child's father left behind, not to mention the kids grandparent's 50 ft away next door, and the kids aunt and uncle next door and 6 cousins 100 ft away. He/she will have their cousins of all ages to ride the bus with, graduate with...ect

So if anyone is wondering, this decision has taken careful planning and thought, and is certainly not a whim-or a selfish one. I as a woman with my life experiences, and my husband and his close family -we have alot of love to give to a child. This would be one lucky kid to be in a family like this........

wow Amy, thanks babe! You really made me feel better! LOL. (you know I have no problem with you!)<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[NoExcuses]

Of course - unlike most woman, I never hold gruges or past disagreements.

You solicited opinions, so I gave mine <img src="i/expressions/face-icon-small-smile.gif" border="0"> It's great that other people gave theirs as well.

 

[Allie]

I did want to add Christian, that your adoptive situation as a child, from what I've heard, sounds different than most. My daughter is adopted (As everyone knows) and has met her birthmother. She was immediately disinterested, and ran over to tell me about the snail she made in school. There has never been any doubt in her mind as to who her parents really are. Ahava didn't "lose" her parents.....she lost her father to CF, but I am her mother. So don't worry about your kids not loving you as much because you're not her 'real' Mom.

I am one that thinks adopting would be better, but it sounds like you have some problems with it? If I can help alleviate that, let me know. I think it would be safer for you all around, and trust me, from the moment you hold them in your arms, that child is YOURS.

 

[Scarlett81]

Just to respond-

Initially my #1 choice was adoption. Being adopted, I would be able to understand my child-what its like to be adopted. I have absolutely no qualms about having "someone else's" child. Again-I've been there myself. Recently I was able to hold one of my friends foster children-a 2 month old baby. I thought right away-I could take you home and by the end of the night you'd be my son 100%!

So to make a long story short-that's not the issue. The issue is I want to experience having a newborn, (i know that it's still possible w/adoption, but not always easy.) my husband really wants to reproduce-Don't sound your alarms!<img src="i/expressions/face-icon-small-smile.gif" border="0"> Within reason, not if my med team advises not to!!! And if I went to him and said "hon, I don't want to"....he'd say "let's adopt" right away. He hardly says he wants this (for my sake)- but I can read his eyes.

And-the door to adoption is not closed for us. It just that I realized that I might want something afterall that I always thought would never be in my reach.

Regardless-there's no easy way out. Adoption is a hard road too.

 

[Scarlett81]

Wow Eileen! You're an amazing woman.

Let's give Eileen a hand! She's a Grandma!