Pulmonary Fibrosis*
Is there any one out there that has PF?
Interested in more discussions like this? Go to the Lung Health Support Group.
Is there any one out there that has PF?
Interested in more discussions like this? Go to the Lung Health Support Group.
Good for you! Keep up the great work you are an inspiration!HugsLw
Of course, I will keep positive or not so positive info I learn as we continue this journey to better info and better health Thanks for the info re:serrapeptase. Have a good day.@tula
Hi Shann, I have IPF, I use a Cpap machine with oxygen infused and I sleep rather well. Still cough sometimes at night but at least I get the rest I need. Perhaps they could do a sleep study on you.
What is the reason for possibly changing his medication? I have been on Esbriet for over a year now and am curious, what I have read about nintedanib side effects seems to be extreme compared to perfidenone.
I am in Florida for the winter and a lung institute is just in the next city over. I called them and they explained they do two types of stem cell treatments. One is using the stem cells from the blood and the other is from the bone marrow. Price was around $6000 for blood and &12,000 for the bone. No guarantees on it, except they'll take your money for sure. I have IPF and am looking for that cure all too, however, if it's to good to be true.............At this juncture I am hesitant to embark on this journey as my Pulmonologist (Cleveland Clinic) is a skeptic because of the lack of research out there. That's what I have found out from talking with the lung institute. It's a tough decision.
Sorry to hear of your diagnosis, I had a tough time carrying around an oxygen bottle where ever I went, but you get use to it (and usually glad you did). I still play golf, judo's for your softball cause it calls for running which I miss very much. I do rigorous weight training WITH my oxygen bottle with me and it helps me recover quicker. If I get to winded I start coughing like there is no tomorrow (a well brand name cough suppressant helps sooth my throat and the coughing and on the wrappers it has little quips that motivate me to push harder). I watched the video of lung transplant from Mayo and it was interesting, but not necessarily for everybody I found out. I'm 68 and won't let "it" define me either. Keep on keeping on and stay positive.
-
Like -
Helpful -
Hug
1 ReactionHi spicegirl, I tried serrapetase for two months and didn't feel any different, (maybe expecting to much to soon, I don't know). IF you CT showed the fibrosis was gone did you feel an increase in your lung capacity for breathing again? How long was your period of taking the enzyme?
My doctor and I were trying to figure out why I cough so often and violently with my IPF. The acid reflux avenue was a shot in the dark hoping "it" was the cause of my coughing. Nah, that was a bust. I didn't know that a person "could have acid reflux and not know it though. On to more trial and error on my coughing, hopefully we'll run across something that helps.
Hey Shann and Steve,
Did you know that there is a new Sleep Health group on Connect. You may interested in checking out the discussions there. Steve, I bet you'd have some relevant and useful contributions to make to the CPAP discussions. See the Sleep Health group here https://connect.mayoclinic.org/group/sleep-health/
-
Like -
Helpful -
Hug
1 Reactionyes recently diagnosed with interstial fibrosis looking for people with disease and their symptoms and progression? Donna