Kristina and Cariann,
Cariann-I'm glad you weren't offended!<img src="i/expressions/face-icon-small-smile.gif" border="0"> Just that you are here asking for others opinions is awesome, you're open minded and want what's best for your body-keep it up.
Since you both asked kinda the same thing, I'll answer you like this. Lots of peole have been surprised at me getting them up so high, and have asked me the same thing. I don't want to advertise myself as being the health expert or anything! So maybe what's worked for me won't work for everyone! But I want to share it with anyone if it would ever help in the slightest.
First, I didn't feel that my health care team was agressive enough. Based on my PFTs, what I had heard from others about how frequently they got IVs, ect. So, I switched to St. Vincent's Cf center in New York, and hour from where I live. We met, I got a good 1st impression, and they slapped me in the hospital right away, not b/c I had an exacerbation, but to just see if they could get my PFTs higher with physio therapies every 4 hours, for 2 weeks. So, that did me good. I started to feel better, and they went from like (fev1) of 45, to 55.
Ok, so a year goes by and meanwhile I'm doing more nutritionally, exercising a little more, going to therapy, (psychotherapy) which helped me alot and I really needed. Going to therapy for me, is what jump started my progress physically. I was in major denial about my health (and other things from my past), so therapy and talking to others here really made me say-wow this Cf thing is like, really life or death, I mean I've been told it is, but wow it really is. So acceptance was a big thing. I'm not saying that all people need therapy, but if you have unresolved issues about your healh, or other things from your life-therapy won't hurt. It was SO freeing to me. I walked out of my 1st session thinking-man why didn't I do this sooner?! Ok. Again-not saying all need it. But I'm a big therapy advocate.
SO, a year goes by, I'm feeling better, doing more. I start to think, could I ever have a child? I ask the doc, at that point and I'm thinking, I got my PFTs up 10 points, she's gonna say, oh sure-go make a baby, lah lah lah. Obviously I got kicked in the teeth when she said no way. The point here? I listened to my doctor. But, I could only do that b/c I really trusted her opinion. No, I don't think that its a hard and fast rule you should always listen to your doctor-but I was fortunatel enough to find a level headed one that listens to my feelings and opinions too.
So, I start being religious with my therapies, and not just doing them but making them count. St. V's taught me a great coughing technique-breathe in deeply, then "huff" it out fast, almost frocing a wheeze to get out deep plugs. Each therapy, your goal is to get a certain amount of mucus out, and you don't stop physio till you get it out. (I emphasize this b/c I used to think, you just sit there and take the clapping or vest-if you have to cough, then do it, if not-yea! You're not sick. Wrong. But you may already know these things)
I do my vest for 10 mins, and do 5 huffs-producing 5 good spits. I do like 10 reps of that on stronger vest frequencies, thereby producing 1/4 of mucus with each therapy-not when I'm sick, when I'm well! The whole point in Cf, I learned is getting mucus out! We've all heard it, but it really sunk in this time. Lung damage is caused by mucus sitting there, not moving, inflammation creeping up, and as we know, the more lung damage-less life. So, I vowed myself to make getting mucus out a priority, and no more skipping treatments. Make those treatments count!!
Then my doc put me on seasonal IVs, before winter, after winter, if I had a big event coming up-family wedding, stress, ect. She added Zithromax, (oral) and I think that's helped me alot. She added the hypertonic saline, that's helped me tons.
Then we made a 'timeline' of sorts. Each month a health goal was set. She wanted me to be seen by an ear/nose/throat guy, to check my sinuses, have a CAT scan of them, so I did all that. She wanted bone scans, MRIs of my lungs, me to be seen by a Gastroenterologist to see how I was down there and have a colonoscopy/endoscopy. I now had to come in every other week to monitor my PFTs closer. Then to be seen by a high risk OB that specializes in moms with lung disease. I did all this, and it was as exhausting as it sounds. But worth it. So, most of my tests came back normal, but a few adjustments were required.
The biggest thing was, though my doc is no, "stop all meds for pregnancy" person-she wouldn't want me to be on TOBI or other antibiotics during it. Now, I should emphasize-not only b/c antibiotcs aren't good for preggin moms, but mostly b/c she didn't want me to NEED them. So I got my PFTs to 75, and then had to hold them for 6 months with no antibiotics. Then, after all that-WHEW-we could try.
That's where we are now.
I should add -I also do alot vitamin/supplement/nutritional wise. Alot. Too much to list here. But if anyone ever really wanted to know, ask me anytime.
It should also be said that I am a stay at home wife-no I do not sit on my sofa and watch soaps all day. I stay busy with volunteer work, I als live on a horse farm so that keeps me very busy. But, its worth mentioning perhaps b/c I've had more time to focus on my health. If I need rest, its usually no problem to rearrange my schedule to get it. I have alot of support next door in my inlaws who help alot.
For my case, my doctors feel that its not so much the pregnancy itself that will be the threat-it is after. It is caring for a baby 24/7 and doing all my treatments, sleeping, not worrying about the house, ect-so getting help. They stressed to me that after birth, I have to start working back my lungs asap. So I had to shift my focus from can I get preg and carry ok, to can I handle this lifestyle. From what I've read-the only moms that do this successfully-meaning have had kids and are 40 and still going-maintain rather strict lifestyles. They know and accept their limits and work hard, but still enjoy all this.
