Hospital and pft's

[anonymous]

I'v posted before about my daughters pfts. We had another one yesterday and now it's down to 55%. She just had a 21 day round of i.v.'s and then 30 days of oral in Feb. and March. She was at 93% in Oct. Then 66% in Feb. Got up to 83% the day we left the hospital and since then her numbers are 71%, 65% and now 55%. She was sick when she went in to the hospital in Feb. But now she seems well. Has anyone else felt well and had their pft's still go down? She is being admitted again Monday for another cleanout. She is only 6 and is scared of another picc line. Any help or info would be great. Michelle <img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[anonymous]

Sometimes I feel like my body has a mind of its own. So often I have felt fine and my PFTs have gone down. At my last appointment I felt AWSOME and was ready to see my PFTs skyrocket, but they did not change AT ALL!!!I was shocked. I mean they were very good, but still I couldn't believe that I felt so much better yet they didn't budge. I find the ONLY way I can get better is to exercise a LOT and do a ton of extra therapies. The meds do nothing for me if I am not getting a lot of aerobics. Just my two cents...let her run around, swim, jump, play soccer, whatever makes her cough and clear up her lungs.

 

[Liza]

HI Michelle, I just wanted to say that I know what you are feeling. The frustration and the questions. My daughter who is 16 has been going through this same thing. This school year so far she has been admitted in October, December, and March. Always the same as you describe, great pft's then they start heading downhill just weeks it seems after her followup. For us it seemed the awful coincidence that she was doing great, until that followup then she started feeling bad and usually withing a week she was back in to be seen. We were starting to dread even going in because no matter how good she felt we wondered if she was going to get sick again. Almost like it was going into clinic that was making her sick. She even asked them one time, can she see the doctor someplace else other than the hospital that it was making her sick. How is your daughter's weight? We do know that that is one of our main problems. She seemed to stay out longer when her weight was up. Physical activity, like mentioned before, is a major plus. Our daughter avoids it like the plague. Unless it's to walk the mall. Too bad my pocket book can't handle that. With summer coming up try getting your daughter to the pool if you don't already have that in mind. When we lived in Arizona our daughters (both w/cf 16 & 12 yrs.) lived in the pool. It was great exercise. They loved to snorkel around the pool then, we'd give them things to find, they were 10 & 7 when we moved from there. And here's something we just recently found out. Do you know what your daughter's mutations are? We just found out ours and it seems that one of the ones they have (not f508) responds well to gentimiacin so now we are trying that out and hoping that it's the link we've been missing this last year. What I really wanted to say though was that my heart goes out to your little girl. It is a difficult thing to face having to go back in the hospital. When your daughter got her picc line did they sedate her? Did it hurt while it was in or was it just the inserting it that bothered her? What made her scared? My daughter had just got her first picc line a year ago and they sedated her, not general though. She now has a port which she is still unhappy with but there was no other choice for her, her veins were spent. Then again she's 16, physical appearance means alot. We have two friends that are about 6 & 9 that have ports and they don't have a problem with it. Has a port been brought up by your doctors? Just a thought if it hadn't. I hope she keeps feeling good and maybe just maybe her pft's will be back up on Monday. Liza