so frustrated...major drop in lung function so fast

[sasha]

Has this happened to anyone else? I was always quite healthy with CF..the occasional exacerbation, but oral antibiotics took care of it. FEV always around 60-70. Then, two months ago, I got pretty sick. Fevers, the whole bit. The fevers and chills went away after two weeks of IV antibiotics, but now I still feel like crap (lung wise)! I never really did feel better. My lung function went down to 34% and is staying there. I was put on prednisone for 16 days. That is done now, and it did nothing. I started symbicort at the time I started prednisone too, and I'm still on that. I went in today and the lung function only went up to 39%, so all my docs were disappointed. I had a CT scan, and they said it just looks like a ton of mucus in there. Now back on oral antibiotics for 2 weeks. UGH when will this end??

I'm just starting to wonder if it's just a worsening of CF, and not just a crazy infection that I can't shake. Have you experienced something similar? Did you ever slooooowly get your numbers up? I did go up 5% but my docs said they expected much better after all the prednisone. I just can't believe I'd lose so much function so quickly.. I refuse to believe I can't get some more back but I'm really starting to feel discouraged.

 

[beautifulsoul]

I personally haven't experienced such a rapid decline. Mine was slowly over time and I never could bounce back with out the need of a transplant. The infection I had ultimately took over. Sorry my experience isn't helpful. I don't really have any advice but just wanted to send positive vibes your way. I completely understand how frustrating it is. Staying positive is hard to do when you aren't seeing any improvement. As long as you do what the doctors suggest you are in good hands. Feel free to PM me if you need someone to talk to. Much love & hugs,

 

[kenna2]

I'm actually going through the exact same thing right now. My baseline was 76% and I dropped down into the mid 30%. This happened to me starting November of last year. I've had a lot of treatments and have spent months in the hospital. Luckily to say we added and changed some meds around (like doing Pulmo twice a day and adding 3% hypertonic saline). I've also increased my vest to 3 times and day and a new pressure hertz system. I'm also doing the Vibralung with my vest at the same time. I actually was at the doctor today and my lung functions are at 49% which is the highest they've been in over a year. It might suck but stay with it. Hopefully i'm pulling out of this funk and so will you.

 

[kosdancer]

Yes, I was always around 95-100 FEV1 and about 18 months ago tried the new TOBI podhaler for a few weeks and it tanked my lung function down to 75. I've barely recovered from that, I've been sitting at about 80 for over a year now and IVs, other treatments, etc don't seem to help. We did a bronch to look for stuff, CT scan, lots of different drugs and my lung function just seems determined not to budge. All the doctors we talked to said that this is how the disease progresses - it's not always just a slow decline, but is often long periods of stability followed by big drop offs. I hope that IVs help you and you are able to recover what you've lost.

 

[Beaz]

My son also had a major drop in FEV, which remained low even after about 6 weeks of IVs. A CAT scan revealed ALOT of mucous still. The RT suggested an IPV, or intrapulmonary percussive ventilation device which was extremely helpful in moving large amounts of mucous from his lungs, which conventional airway clearance was not touching. This also helped the IVs to be more effective.
This should be available as an inpatient and with some finagling we were able to get a unit for home use.
Best of luck to you and try to not give in to discouragement!

 

[Twistofchaos]

Could be your lungfunction will come back up a long way as you clear out all that mucus.

You don't mention your exercise but incase you don't there's just not any other way to do that than to exercise a lot. Antibiotics and nebbing just doesn't cut it.

Doctors don't stress this enough or at all. And that's the biggest understatement I've made all week. Not only is there no fitness culture but there's also really this thought that when sick and/or weak ah don't bother you're sick, don't overdo it etc. No, it's the biggest reason you could ever have!

 

[jamest]

Could be your lungfunction will come back up a long way as you clear out all that mucus.

Seconding this. I had a hospital stay where afterwards, my lung function dropped by like 25%. IVs didn't bring it back up. It was just a big backload of mucus that had built up during the infection. I did clearance like crazy, 8 hours at a time over a week or something. Eventually it cleared up and my numbers went back to normal.

 

[Cale Gilley]

I agree with twistofchaos they always told me growing up well if he doesn't want exercise thats ok he is sick. but thats not the case just because its hard doesn't mean you shouldn't push and do it anyways its so important for you lung function to be as active as you can and I mean pushing yourself when you do some sort of exercise. The vest is also important I had one from when they first came out didn't start really using it till last few years and it makes me feel so much better. The days I don't do my vest ill feel good until the next day it hits me and I don't feel as good or have as much motivation to move around. Sleep seems to be my enemy these days because when your sleeping your not moving up any mucus so it builds up. So I try to just get 6-8 hours of sleep some days ill splurge and sleep for 10hrs or so but then I feel crappy and wish I hadn't. So exercise, vest, and minimum sleep are my strategies along with normal breathing treatment regiment I have.

Fight for your life because no one else can but you. I wish you the best and hope your numbers go up.

 

[Ank]

Dont worry about it .The more u worry,the less u live.Stop thinking about it..
Apart fom that ..have u tried tobi...or other inhale antibiotic ,docs say there are more effective than oral

cleaning lung is more imp..jst try to learn autogenic drainage..it will help you