HELP - Major drop in fev1
- Thread starter PROUDPAPA
- Start date
MotherofCFBoy11yrs
Member
There is a recent article saying that intense exercise may increase inflammation in people with CF when they are having an exacerbation (http://respiratory-research.com/content/14/1/32).
I also wonder how safe the indoor football is if the place smells of mildew? We are living in Finland at the moment and here many people are having serious respiratory problems because of bad indoor air quality - it's an epidemic, caused by overzealous insulation practices. The fungal pores can be hard to detect and there is often no smell.
I also wonder how safe the indoor football is if the place smells of mildew? We are living in Finland at the moment and here many people are having serious respiratory problems because of bad indoor air quality - it's an epidemic, caused by overzealous insulation practices. The fungal pores can be hard to detect and there is often no smell.
I dropped from 80% to 36% in a little over a year. It turned out I had become gluten intolerant. Nearly no doctors ever care about that, but fact is that most people have inflammatory issues with wheat and don't even know it. Since dropping gluten my lung capacity was able to recover to around 60% (in another 18 months). Give it a try! It's not so hard as you may think and health in general usually improves.
Yes I have received a of of great responses. It has helped guide me in discussions with the cf team. His drop happened in a 1 month period between late November and late December. Ha had a nasty respiratory infection during that time that went thru our entire family. It was the hardest on my wife(no cf) and son -lasting at least 2 months. He is over the infection, but his pfts have not improved.
JennyCoulon
New member
We have a 14 year old with CF and he has had issues with coughing fits when he is playing soccer both indoor and outdoor, participating in PE and even rough housing at home. Last July he cultured aspergillas flavus (fungus) that is found in farm fields on crops, etc for the first time so they started him on an antifungal and changed him from Advair to Qvar. He was on albuteral for the nebulizer, 30 mins. of vest, steroid inhaler (Advair then Qvar) and the same at night expect adding pulmozyme. He did 3 months of the antifungal med and during that treatment he has zero coughing fits while exercising, etc. When we went back to pulmonary in September for our regular 3 month visit he didn't culture the aspergillas. We went to see a allergy specialist in October to see what he was allergic to, guess what, he was allergic to aspergillas and the coughing fits had come back. He was started on Astelin nose spray, continued with Flonase nose spray, changed Zyrtec from once daily to twice daily, upped his dose of Singulair, etc. The coughing fits didn't seem to get better so last month was out 3 months to go back to the CF center. He has a drastic drop in his PFT's from 106 to 86. This is the first time this had ever happened.
He was started on Tobi thru his nebulizer, Cipro, they switched him back to Advair from the Qvar and they started him on hypotonic saline 7%. We did get the culture results back and he was growing aspergillas flavus again. He stared this almost 30 days ago and he goes back to test his PFT's on Friday. I believe the problem that he is having is that he is allergic to the aspergillas that is growing in his lungs so while he is being treated (with a med that can effect your liver) it helps to keep the inflammation down but as soon as he is done with the anti fungal the inflammation is there again b/c of the allergy so he has the coughing fits. The hypotonic saline has really helped him to hack that mucus up and doing huffs has really helped him to get that mucus out.
How is your son with doing his huffs? Has he tried hypotonic saline? I would maybe see about allergy testing with an actual internal med. doctor rather than the CF center. I am looking forward to hearing how your son is doing in the future.
He was started on Tobi thru his nebulizer, Cipro, they switched him back to Advair from the Qvar and they started him on hypotonic saline 7%. We did get the culture results back and he was growing aspergillas flavus again. He stared this almost 30 days ago and he goes back to test his PFT's on Friday. I believe the problem that he is having is that he is allergic to the aspergillas that is growing in his lungs so while he is being treated (with a med that can effect your liver) it helps to keep the inflammation down but as soon as he is done with the anti fungal the inflammation is there again b/c of the allergy so he has the coughing fits. The hypotonic saline has really helped him to hack that mucus up and doing huffs has really helped him to get that mucus out.
How is your son with doing his huffs? Has he tried hypotonic saline? I would maybe see about allergy testing with an actual internal med. doctor rather than the CF center. I am looking forward to hearing how your son is doing in the future.
They have tested for fungus and not found any. They treated him for it anyway with no improvement. On a more positive note at yesterday's visit to the clinic he was up to 96 on his pft. His baseline is 119 so he still has a way to go , but seems to be on the path to full recovery - which is what we are praying for. He is doing 7% saline a few times a day along with Dornase, albuterol and an inhaled steroid. My daughter(his twin) just experienced a similar drop - from 98 to 47 on her pft. She is on iv antibiotics, antifungal and all of the stuff mentioned earlier. She is rebounding more quickly than he did. She was up to 75 at yesterday's appt. The only thing growing in her culture is yeast. They did not think that this was causing the drop, but who really knows?
Have they done anything to treat (or even mentioned) inflammation? Even when I'm not having an exacerbation inflammation is a huge issue for me and can lower my lung function superficially. Have they tried him on any prednisone or anything specifically targeting inflammation?
kirklittle35
New member
hello I'm also a new member here, I agree with Deb, have to give 2 samples;-one checking for "normal" checking for infections and one AFB.
Hello all, I just wanted to share some good news regarding my son. As I shared back in the spring He had a major drop in FEV1 (over 50% drop at its worst) and the Drs. were never able to identify the cause. The drop lasted from early December thru the spring. After a lot of prayer and hard work on his part I am happy to share that at his last appt on Tuesday his FEV1 was back to his original baseline. Thank you to all of you who prayed for my son
Aboveallislove
Super Moderator
Oh dad, I am so happy for him and you. That must have been so scary and hard for everyone! I have a 5 year old and will remember your story to help our son fight and work hard when he needs it. Please tell your son thanks for being a great example and hero for the little ones with cf!