Recent content by fel

The air compressor was about $150, so not so bad. The issue is that it can be rather loud and it is large. How loud is the electro flo 500?

Just to update anyone who might be interested in this: I did find a work around. I purchased a Fluid Flo from med systems. It is basically the same device, but about 1/5 the price. The catch is that it needs to work with an air compressor at 50 psi. So, I bought a HULK quiet 6 gallon air...

If anyone has a used Electro-flo, as the title says I am looking for one. It is not covered by my insurance. Thanks much!

I am a symptomatic CF carrier, not a full blown person with CF (both my children have it.) Anyway, last Nov. I cultured atypical pneumonia after feeling short of breath and malaise for several months. It took about a month to resolve with antibiotics. This June I started feeling that way again...

My older son is a data scientist (got an MS degree in Bioinformatics) If he has an exacerbation he can work from home. Younger son desires a less cf-friendly job. We'll have to see how that pans out (he is still in college.)

Helenlight I hear you. My son is back on the sinus budesenide. Otherwise he would need to be on antibiotics and oral steroids all the time. Can't win.

Are any of you on this thread pancreatic sufficient? My son is PS, but he is still struggling with low weight. Unfortunately (or fortunately?) he doesn't really care for junk food/fast food.

Update: We figured out the cause of the adrenal insufficiency/low cortisol. It was the budesenide (steroid) in his sinus rinses, used to treat sinus inflammation. Once he stopped putting budesenide in his rinses, his adrenal functioning slowly (over 6 months or so) went back to normal. One...

StellaTx -- my two sons (my only children) were diagnosed at just about the same age as yours, both at once, just like you. You are lucky they can take Kalydeco -- mine are not approved. I think the biggest challenge with this kind of later (but still child) dx is that the doctors are used to...

Both my sons have CF, not diagnosed until they were 13 and 17. The 17 year old's only symptom was a cough that would not go away.

My sons take NAC. Their CF doctors know about it and approve. It is hard to tell if it is effective, since they do so many treatments...

Just want to say thank you to all of those who have written. I will discuss with my son revisiting the issue of vitamins! In fact, Megan, I may start taking vitamin D again myself as I have joint pain as well (Mom to two with CF, so a carrier).

Thanks bobanny -- when you say high quality vitamins -- what does that mean? Is it a particular mixture? He already takes vitamins and a food supplement to keep on weight.

Thanks MissAlexsBP-- we are actually now fairly certain it is the levaquin that caused the wrist pain, since the pain began within 2 days of the levaquin. Unfortunately that was two months ago and the pain persists.

I should mention he was also taking Levaquin when this started. He has been off it for well over a month. Could that be the cause? I developed peripheral neuropathy from Levaquin but it went away when I stopped taking it.