Connect
← Return to Pulmonary Fibrosis*
Discussion
Comment receiving replies
hi any one out there with this problem,? i have had for several years now, bad cough, now my right side started to hurt, doc gave a cat scan, it shows a spot on my lower left lung i have an appointment sep 5th at mayo hope they can figure this out i also have heart problems, two years ago open heart valve repalced now pace maker and diffib meds have caused some cough but changed and now little better should i worry about the spot ?? i fear it is cancer but they didnt say that ok thnaks.
Replies to "hi any one out there with this problem,? i have had for several years now, bad..."
I found out that I have PF about 2months ago. Had alot of test and blood work . The Dr. I have wants me on oxygen 24hrs a day but I have been fighting that. Now it looks like I will be giving in to the use of oxygen. Don't like the idea of there not being a cure other than lung transplant. I try to stay active by golfing softball and yard work, but sometimes its a alot of work where it didn't used to be that way. I will not sit home and be a veggie. I am 66 yrs old.Don't have a mayo clinic near me.
Hello. Yes our lives have changed but we know our devil so to speak.... I understand the resistance to 02 but have decided to feel better than worse. I don't get to mow my grass but I can sit and pull reeds ( very therapeutic) are you on Ofev? Remember the musical Godspell. Day by day Memorize those words my IPF friend.
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.
Have you been diagnosed with mild moderate or severe IPF?
moderate
Moderate IPF one year I was diagnosed have gotten crackling in lungs back again so fibrosis has gotten worse a little but twice already for me
How do you play golf when using oxygen?
Welcome to Connect, @dogwood928.
Do you have IPF? Do you use oxygen?
@kturchin, what do you mean by "but twice already for me"?
You could lengthen your cannula cord and keep your portable oxygen concentrator nearby. I don't see much of a problem. I swim with the tank and regulator in a safe place at the side of the pool. You can't get the regulator wet. I don't want my electronics-based concentrator anywhere near the water. I don't see a problem with golfing, just get a long breathing tube. You can go up to 50 feet without any dropoff of oxygen.
Connect
are u spitting up any blood?