Is my specialist right? pregnant & medication

[Teesh]

Hi,
My name is Teesh. I was diagnosed when I was 16 but was very sporty and had no symptoms. I was only diagnosed because my older sister was.

I am now 32, I should mention I only have the lung aspect of cf. My lungs have deteriorated since I was 22. I have a bit of a coff in the morning and don't use any medication, except when I get an infection, flu, about once a year a course of antibiotics, and have never been into hospital.

I am 12 weeks pregnant, feel really fine CF wise, and also pregnancy wise, have no morning sickness, I am more breathless however.. and went to a CF specialist just as a precaution, who really shocked me by saying I was in danger and the baby etc.. for the duration of the pregnancy. I don't even have an infection and my chest is really good at the moment? I have never had IV's, and he wants me to go into hospital for 14 days for IV treatment. He has prescribed me 2000mg, of FLUCOCILLIN, 4 x 2.5mg of salbutomal through a nebuliser per day, and a turbo inhaler with steroids.

I have never used a nebuliser before... I am concerned to take all this medication being pregnant. He is worried and has based this purely on my fev1 reading... my capacity total is just over 2 litres I would have thought this more important, yes my fev1 is probably lower but that's because I am pregnant?

It concerns me so much what he has said, I have no term of reference, he is very negative, and yet I feel very well. If I am to take all this medication now, when I am well... what will I need to take when I am not? I should mention I am in the UK, so entering Summer, which is a better time for me too weather wise.

If anyone can offer any advice I would be very grateful. I have a follow up appt. in 1 week, do I take all this medication, what should I do? Sorry for the long message.

Thank you.
Teesh

 

[anonymous]

Teesh, check out this site

<a target=new class=ftalternatingbarlinklarge href="http://www.geocities.com/MurrensNatureMama/">http://www.geocities.com/MurrensNatureMama/</a>

Hollycatheryn is a user on this forum and created the above website based on her own experience. She can shed some light on what did and didn't work for her. She also has stories from other CF moms. She has her personal contact info as well for individual questions.

Julie

 

[anonymous]

It's hard to answer your question not knowing your situation. But I would say that you're your best advocate for how you feel and you have to speak up for yourself.
Has he not even tried a round of oral antibiotics to see if that works before starting you on IV's? Also, has he done a sputum culture to see what infections (if any) you have at this time & also a sputum culture will indicate which meds should work for you. If you have picked up an infection like staph or something then possibly IV's would be necessary for both you & the baby. But I definately see your point in not wanting to do anything that will potentially hurt the baby.
I don't think inhaled meds will hurt the baby, because I don't think they ever get to the placenta, I may be wrong, but logic tells me that that would be the case. But I would ask about the IV meds.
I think you're kind of like me. I used to have the ole "if it's not broke, don't fix it" attitude. My opinion now is that with CF, though, it's best to be pro-active and catch things right away instead of waiting until your cold, flu, etc is full blown before asking for meds, etc. Possibly this is the stance your Dr is trying to take. Are you also in contact with an OB/GYN Dr? Bounce any ideas off of them about IV's etc & see what they say.
I am not sure just being pregnant should make you short of breath yet. I could see that in the 3rd trimester or so when the baby is big enough that he/she is pushing up on your diaphram and making less breathing room for you, etc. Hopefully the website mentioned above will have a lot of information for you.
Good luck & keep us posted<img src="i/expressions/present.gif" border="0">

 

[HollyCatheryn]

How you react to a pregnancy is very idividual. There are some places you can go to check the safety of medications during pregnancy and breastfeeding. Some medications are only unsafe suring certain time-frames. There are several links from my website (which Julie posted above and is referenced in my signature) to other sites that contain this sort of information for both consumers and health care pracitioners. The placenta is like a collander, meaning that of anything you put into your body, a little bit gets through. Breastmilk is different because only what makes its way into the specific milk-making glands will find its way into your milk. So, many medications that are not safe during pregnancy can be used safely during breastfeeding. The other thing to know is that doseage is important. Certain levels of some medications are safe or of only minimal concern, where a different dose may pose a significant threat. It is important not only to find out *what* your doctor wants you to do, but *why*. Based on that information, you can then go in search of other ways to accomplish the same goal or you can weight whether or not you think the reason is a good one at all. You might even need to call other CF centers and ask what their protocol for certain situations is and compare. In the most recent issue of CF Roundtable, there was an article discussing the discrepancy in care from one center to another. We must be good consumers. Make sure that you know that just because another center might handle things a different way, doesn't mean that their way is better. You might look around for a center that has a higher number of healthy adults or more mothers with CF in their care than your center. See if they are doing something different. Once you find that out, weigh it all with what you know about yourself and what published research says. The articles and sites referenced on my site will give you a good starting point. You can always feel free to print out anything you find on my site or others and take those in to your doctor to ask questions about. Don't be afraid to be specific or to make lots of phone calls and appointments. This is a very important time and you want to know that you have don't everything in your power to have the healthiest pregnancy and baby that you can. Even some women who do not feel very healthy during a pregnancy may feel better after giving birth. For others they feel better pregnant than not. Some feel the same during and following pregnancy. Feel free to email me if you have any questions or if I can help you locate information. I am happy to help. Taking care of yourself right now is the best gift you can give to your baby.