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Is anyone trying to get pregnant?
- Thread starter anonymous
- Start date
thelizardqueen
New member
I myself am not trying to get pregnant YET. My guy and I are going to get him tested in May to see if he is a carrier. From then, we'll start talking and setting apptointments to go see a fertility doctor. At the moment my FEV1 is 87% I think - but that was from a year ago. I know that its higher now, as at the time I was sick, and have been taking very good care of myself.
Scarlett81
New member
i wish i was trying.<img src="i/expressions/face-icon-small-frown.gif" border="0">
thelizardqueen
New member
It is possible to get tested for up to 1000 mutations so long as you go to a accredited CF centre. My guy and I are going to the genetic department at my CF centre to get tested. My doc assures me that when done at a CF centre, they will test for +1000 mutations. That's why its so important to get these tests done at these centres. So no, they don't cover just the most common mutations.
Getting ready to start trying... I'm researching prenatal vitamins, am off the pill and using a book, Your Fertility Signals by Merryl Weinstein. It has methods in it that help you avoid or encourage pregnancy. I am using the methods to avoid pregnancy until I'm regular at which point we we start to 'encourage.' For some reason I feel it might take as much as 6 mo. to become regular but who knows! I am in the process of evaluating if my mucus is able to be used to detect ovulation and tracking my temperature. Mucus in CF is usually not an indicator because it is so thick / abnormal. I am thinking about getting a saliva magnifying system if the mucus doesn't work out.
I go to my CF doc. next week and will be getting the name of the OBGYN that his patients have worked with. He is not for or against me or anyother CF'er's having kids because he thinks it's something husband and wife need to decide. Basic question he has for us is "What are you going to do husband when your wife is no longer here?" Are you prepared to bring this child up single handedly.....etc. Needless to say, the conversations that have insued have been wonderful.
In case you want our thoughts on it. Husband would rather have me than a child. We're willing to roll the dice (if God agrees) and see if we can get pregnant. In terms of me dieing before the child is completely grown. Husband would rather have a child than be by himself.
I go to my CF doc. next week and will be getting the name of the OBGYN that his patients have worked with. He is not for or against me or anyother CF'er's having kids because he thinks it's something husband and wife need to decide. Basic question he has for us is "What are you going to do husband when your wife is no longer here?" Are you prepared to bring this child up single handedly.....etc. Needless to say, the conversations that have insued have been wonderful.
In case you want our thoughts on it. Husband would rather have me than a child. We're willing to roll the dice (if God agrees) and see if we can get pregnant. In terms of me dieing before the child is completely grown. Husband would rather have a child than be by himself.
sarabeth87
New member
I WAS trying. I got married 2 months ago to the guy I've been with for 3 years. I know I'm pretty young. About to be 19. I wanted to get pregnant at a young age so I could spend more time with my child. Well I've now changed my mind. My husband and I don't get along now that we are married and I've had tons of pets which I can't even take care of, plus I realized that I don't really like being around kids. Anyways when I had considered trying I learned that you CANNOT take Tobi. It is very dangerous to the fetus. That is about the only one though. And make sure all of your vitamin levels are normal, because if not, that can negatively affect your fertilty.
thelizardqueen
New member
Lauren - I notice you say you're not on the pill, and are following a book. Might I ask if its working ok for you? I desperatly want to get off the pill, and my guy is all for me going off of it, but we are trying to find other alternatives to not get pregnant for the time being. Any comments?
wanderlost
New member
I'm not trying to get pregnant anymore, because I am!! This will be my 2nd child. With my first, I concieved immediately, went off all meds except enzymes and had a healhty 8.5 months (he came early). I only visited the clinic once during that time. I was misdiagnoed with gestational diabetes, which I can get inot more if you are curious about that.
This baby was harder to concieve - it took about 18 months and an Intrauterine insemination to get to this point. I am also staying on my inhalers this time around. Besides that, I will probably again only go to the clinic once (I only go 2x a year as it is) for a check up, unless something comes up that I need to go in. Most of my care I handle on my own (My step-mom is an MD, so if I have an infection, I usually just ask her for an antibiotic).
My PFTs are the the 70s and fluctuate from high 70s to low 70s depending on the day. They were abou the same when I had my son, 7 years ago.
Good luck!
This baby was harder to concieve - it took about 18 months and an Intrauterine insemination to get to this point. I am also staying on my inhalers this time around. Besides that, I will probably again only go to the clinic once (I only go 2x a year as it is) for a check up, unless something comes up that I need to go in. Most of my care I handle on my own (My step-mom is an MD, so if I have an infection, I usually just ask her for an antibiotic).
My PFTs are the the 70s and fluctuate from high 70s to low 70s depending on the day. They were abou the same when I had my son, 7 years ago.
Good luck!
lovingBenandCambree
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sarabeth87</b></i>
Anyways when I had considered trying I learned that you CANNOT take Tobi. It is very dangerous to the fetus. That is about the only one though. </end quote></div>
As for taking Tobi that is not neccesarily true. The Iv antibiotic tobramyacin cannot be used because it causes deafness in the fetus. But it is believed that because Tobi is inhaled directly into the lungs that it does not cross over into the fetus. They do not state whether or not it will harm the fetus because there are no actual studies that have been done on this. I did use it while pregnant with my daughter with no complications to her. She is a perfect little girl, as far as perfectness goes. I just wanted to clarify that.
Emilee
Anyways when I had considered trying I learned that you CANNOT take Tobi. It is very dangerous to the fetus. That is about the only one though. </end quote></div>
As for taking Tobi that is not neccesarily true. The Iv antibiotic tobramyacin cannot be used because it causes deafness in the fetus. But it is believed that because Tobi is inhaled directly into the lungs that it does not cross over into the fetus. They do not state whether or not it will harm the fetus because there are no actual studies that have been done on this. I did use it while pregnant with my daughter with no complications to her. She is a perfect little girl, as far as perfectness goes. I just wanted to clarify that.
Emilee
So I am 30 and going to start to try and get pregnant. I have had a pretty mild case of CF my entire life. I do not take any enzymes it seems my lungs are only effected. However this past December I was in the hospital for pneumonia (2nd time ever in hospital, the other time when I was 9) and my FEV is slowly getting back to normal. Currently in the 40s. My doc said I need to get them to the 50's but either way she will support my decision. I feel great, I can exercise again and my energy is back to what is was before I got sick. I am only on albuterol and pulmozyne which I plan to continue if/when I get pregnant. Tobi gives me bronchial spasms so I do not take that, I do take Cipro or Leviquin when I catch a cold. So I feel like I am ready even though my FEV1 is low, but reading all of your replys it seems my FEV is a lot lower then all of yours. Hmmmm Any thoughts?
Liz, I'd be happy to talk to you more in depth about my situation / plan. I want to be 'regular' before I start to try because I don't want to deal with that sad feeling when the period arrives each month so I decided to be strategic about not becoming pregnant until I'm regular and then hopefully I can switch it on and get pregnant in 6-12 mo (hopeful I know). You should get the book. I bought it, after someone else recommended it to me, on ebay for $2.50!! The author claims that when the method's described in her book are followed it is 99% effective - same as the pill! Now, I don't know about that. We did need to decide that by going off the pill we were risking getting pregnant which wouldn't be a catastrophe just not as planned. Until I figure out my cycle and can figure out what my fertile days are we are using condoms. Not great but whatever. At this point, we are not considering fertility help (other than simple techniques like mucus plug removal). The miracle of conception is not in our hands at this point but we might change our mind who knows. We are putting full power in God to help us. I'm reading up on the whole thing so that I can understand my body better and what it takes to achieve pregnancy. I've been working out agressively since Jan. so hopefully my pft's will have gone up. I go to the doctor on the 5th.
I thought coming off the pill would be catastrophic. I've been on for 11 years. It's been 3 weeks and I haven't even spotted. I honestly don't even know what to expect as a 'normal' period for myself becuase it was so long ago that I experienced it. Sad! I wish I hadn't been on this long as it did a number on my libido. This is now a proven side effect - too bad the male driven medical community wasn't willing to admit it sooner. I read about it in Ladies Home Journal. My husband is also supportive of me being off the pill but it wasn't always that way.
What else would you like me to comment on?
I thought coming off the pill would be catastrophic. I've been on for 11 years. It's been 3 weeks and I haven't even spotted. I honestly don't even know what to expect as a 'normal' period for myself becuase it was so long ago that I experienced it. Sad! I wish I hadn't been on this long as it did a number on my libido. This is now a proven side effect - too bad the male driven medical community wasn't willing to admit it sooner. I read about it in Ladies Home Journal. My husband is also supportive of me being off the pill but it wasn't always that way.
What else would you like me to comment on?
To the annonymous poster: My husband and I have decided to wait a couple of years until we are ready to raise a child, and will make the decision at that time on whether to adopt or try to have one ourselves. I have discussed this with my doctor and she said it's best to have an FEV1 of at least 55% before getting pregnant. If it is below that, obviously it is up to you, but I personally will not start trying until my FEV1 is slightly above that number. My baseline right now is around 52-55%, so I'm going to have to work my butt of to get in good health before we start trying.
to the anon in 40% FEV1 range
My thought is if I were you I would do a specific research project on outcomes of mother's entering pregnancy with ~40% FEV1. Then based on what you learn make a decision with your spouse. I think it is unfair for health professional to say they support us on something when they can't promise the outcomes. We need to be aware and prepared for what just might happen. Most of my CF doctors (3 that I have discussed pregnancy with) have had the attitude that I am their patient and that all a preg. can do is hurt my health and possibly leave a child motherless. All three are also ped's so they have that perspective for sure. Then they all have been like... well it's ultimately your decision. In terms of health 'requirements' I had one doc. that wanted my FEV1 over 80 and another over 70 and most current hasn't put a number on it. I am very stable (knock on wood) so this helps my confidence.
My thought is if I were you I would do a specific research project on outcomes of mother's entering pregnancy with ~40% FEV1. Then based on what you learn make a decision with your spouse. I think it is unfair for health professional to say they support us on something when they can't promise the outcomes. We need to be aware and prepared for what just might happen. Most of my CF doctors (3 that I have discussed pregnancy with) have had the attitude that I am their patient and that all a preg. can do is hurt my health and possibly leave a child motherless. All three are also ped's so they have that perspective for sure. Then they all have been like... well it's ultimately your decision. In terms of health 'requirements' I had one doc. that wanted my FEV1 over 80 and another over 70 and most current hasn't put a number on it. I am very stable (knock on wood) so this helps my confidence.
I have done some reserach. I have found the magic number is above 50%, of course the higher the better. I hope to get back to 50% soon. I am exercising and doing everything possible. I will research some this weekend and if I find anything new will post for you all to see too. Thanks for all of your input!
Hello....
Well, some know my situation.... but, if you want to discuss it further or join a group with a bunch of CFers who have had children and those who are trying or considering it, feel free. Here's the link:
<a target=_blank class=ftalternatingbarlinklarge href="http://groups.msn.com/CFandmotherhood">http://groups.msn.com/CFandmotherhood</a>
I've been off the pill for about 4 years. We've been "trying" (but not too hard) for about 3 years. I was referred to an infertility doc recently, but know with that there is a chance of multiples, which I don't know if I could handle. So, I think if we can't do it on our own, we will adopt.
Anyway, I've always been given a thumbs up from my CF clinics (I've been to 2 that were accredited), even when my FEV1 was in the 50's. My last clinic visit I asked again and they said its based on so much more than just FEV1.... weight, CFRD being under control, activity level, social supports, etc. So, they also said I should be able to carry and raise a baby no problem as long as I continue to take such good care of myself.
Anyway, feel free to join our group!
Well, some know my situation.... but, if you want to discuss it further or join a group with a bunch of CFers who have had children and those who are trying or considering it, feel free. Here's the link:
<a target=_blank class=ftalternatingbarlinklarge href="http://groups.msn.com/CFandmotherhood">http://groups.msn.com/CFandmotherhood</a>
I've been off the pill for about 4 years. We've been "trying" (but not too hard) for about 3 years. I was referred to an infertility doc recently, but know with that there is a chance of multiples, which I don't know if I could handle. So, I think if we can't do it on our own, we will adopt.
Anyway, I've always been given a thumbs up from my CF clinics (I've been to 2 that were accredited), even when my FEV1 was in the 50's. My last clinic visit I asked again and they said its based on so much more than just FEV1.... weight, CFRD being under control, activity level, social supports, etc. So, they also said I should be able to carry and raise a baby no problem as long as I continue to take such good care of myself.
Anyway, feel free to join our group!
Remember FEV1 is only a number and everybody is different. Some people can function better at lower FEV1 then others with similar FEV1. Also, no matter what your FEV1 is there is some luck involved that you won't get a serious bug while pregnant. All that said the higher your FEV1 the better your changes of staying healthy during pregnacy, but its obiously not the only factor.
BTW, maybe a dumb questions, but I was wondering if one can use the vest while pregnant? Seems like a bad idea, but what do I know.
BTW, maybe a dumb questions, but I was wondering if one can use the vest while pregnant? Seems like a bad idea, but what do I know.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
....you won't get a serious bug while pregnant. All that said the higher your FEV1 the better your changes of staying healthy during pregnacy, but its obiously not the only factor.
BTW, maybe a dumb questions, but I was wondering if one can use the vest while pregnant? Seems like a bad idea, but what do I know.</end quote></div>
I have specifically asked about the Vest and they say no problem. Especially the shorter one that only covers ribcage.
in regards to the mention of the 'serious bug while pregnant' - Is this just the normal worry we have all the time or is there some bug that attacks pregnant ladies or the like?
....you won't get a serious bug while pregnant. All that said the higher your FEV1 the better your changes of staying healthy during pregnacy, but its obiously not the only factor.
BTW, maybe a dumb questions, but I was wondering if one can use the vest while pregnant? Seems like a bad idea, but what do I know.</end quote></div>
I have specifically asked about the Vest and they say no problem. Especially the shorter one that only covers ribcage.
in regards to the mention of the 'serious bug while pregnant' - Is this just the normal worry we have all the time or is there some bug that attacks pregnant ladies or the like?