Living with Pulmonary Fibrosis (sometimes): Finding strength

I am om oxygen only at night i am trying to take 2 musinez tabs a day maybe that will help me. please keep me posted thanks FRANCKO

I smoked for over 50 years{HOW DUMB IS THAT} my only motto was it you could light it i would smoke it.NOW I WILL TELL YOU THIS IF I EVER START AGAIN.BECAUSE THAT WAS THE HARDEST THING I EVER DONE [COLD TURKEY] FRANCK]

I have seen 2 pulmonologist & have had several procedures to see what is going on. I had an open lung biopsy a month ago. They sent it to Mayo clinic for a second evaluation. I used to smoke & quit about 3 minths ago. I am told my only option is lung transplant and my window of opportunity is very small. I am going to look into oxygen this week as it's hard to breathe even at night when sleeping. I keep losing weight and the fatigue is hard. I am pushing forward and trying to keep life as normal as i can.

What were you originally diagnosed with?

It is great that that you have stopped smoking. after a year or so it gets easier. you will find life is better when you are on oxygen.

I was originally diagnosed with Congestive Heart Failure and COPD but over the last 10 years have been going to specialists for all of the issues I have now. It wasn't until I had pneumonia the 2nd time that they finally started digging for answers. I have 2 of the best cardiologists and pulmonologist available to me and I love I'm a city where we have an amazing hospital with a top both heart hospital.

i was diagnosed with IPF in 2009. I have had a slow progression but lately it seems to be going down hill faster. I know what the outcome is going to be but i have done all i can to slow it down. There has been a lot of research on IPF in the last year with some promising results. I spend as much time with my family as i can. I have a 16 month grandson that i love and spend a couple days a week with him, he and I are good friends and i love him dearly. I am thankful for the time i spend with him and look forward to the time i spend with him. I try not to dwell on what i will miss as he grows up and concentrate on what i get to experience with him. My advice to others is to try what you can to extend the time you have. Be careful to avoid advice that is unproven and work with your doctors. Explore research studies that deal with our disease. you can find studies at clinical trails.gov is the official gov database of studies and you can look up for free.I thank my wife of over 40 years for all the things she does to help me. she is a retired RN and sees to it that i take my medications as i am suppose to. I could not go thru this without her help and love.

Franco,
Have you ruled out a Lung Transplant at this time?
I think it is worth a visit to the transplants center nearest to you.
I have had Pulmonary Fibrosis since 2013. I was having a deep dry cough for a while, I made a time to see my primary care and she listened and said it would be best for me to see a specialist in the Chest Med and the fellow sent me for the first CT scan of the Chest. When the Chest Med Doc studying to become a pulmonologist. All he and the attending were concerned about were several small nodules in the outer area of my lungs.
Their biopsy was inconclusive. They rescheduled me for a new CT scan and it had not changed, the fellow pointed out the same spots then scheduled me for a second biopsy and it too was inconclusive After that biopsy he scheduled me for another CT scan and after they looked at the biopsy taken this time the results where negative (benign) but they wanted to take another biopsy, this one a semi open chest. I was not going to have a return trip to get my Chest even more involved than the last ( it was s crio biopsy. So I did something on a spur of the moment act, whitch was to go to records and request all of my VA medical records.
It took about 10 weeks to arrive and I began to read from the beginning. What I was seeing was everything I had ever had checked out. I read nothing unusual until I was at early 2014. I read the Radiologist report and it read that I had some fibrosis in my lungs. I, at the time thought that there was nothing to the early diagnosis except maybe some kind of unhappy.what followed was more of the same thing, except the were getting progressively worse. With the 3rd CT scan taken in early March of 2027. I looked up what that was.there were 2 words that I looked up were fibrosis and Pulminary. They were not good. I found out there was not a cure. Except a Lung Transplant. But even more of a troubling problem for me was why hadn’t even told me anything about having that very bad disease that was going to kill me. Unless I could still have a Lung Transplant.
Next step is to meat with the VA Chest Med clinic and seeing what they can do about the delayed (by over 3 years from the first CTscan) treatment can still be done and what they can do to help me after the surgery and with this much weakness. I doubt I will ever be back and able to do what I did before my P F. We will see what options I have left.
Wow did I ever give you and anyone else the scoop.
Alan Cady
PS. I have the recording of the representative of the Chest Med telling me that the head of the pulmonary clinic was sorry thy dropped the ball. That tells me that they are good people and want to help. I meet them in 2weekd.

I feel for you .... if you had known you could have got on the donor list for lungs since they are always in short supply. There years on the list you might have had new ones by now. But keep following your disease and medical records , test, etc. You are your best advocate. I know they medical community cares but they have there hands full to and things can slip through the cracks. For me I think I may be sliding into end stage copd with emphysema but I have a 12 year old I want to see graduate from HS (hope college) so in the interim I keep trying move as much as possible, keep looking for "real" stem cell studies that I might get into (although I have a few other thinks going on which would probably rule me out). The problem is Big Pharma i do believe ...it is much more profitable to treat rather than cure. Even though universities do some research big pharma also makes contributions to keep them a little sidetracked.
I wish you the best of luck and a Merry Christmas and Great New year!!! Breathe easy.

I would kike to thank for your nice reply. It is a shame but it is so true about Big Pharma some times i wonder if they have familes that may be treated like everyone else i believe in KARMA and what you plant today you shall reap tomorrow. I hope that any one or company is doing this to people that truly need help with this awful diease that they can sleep well