Pulmonary Fibrosis Support Group

Wow, that is really a cold statement made by your doctor. Was he saying that the only care for you was a transplant or for everyone in general that has PF?
There is no "cure" except for a new lung and that isn't problem free but treatment is out here and if he hasn't explored that with you. GET another doctor.
You deserve the best care available and try not to settle for less.

Hi PearlB,I am on imurin and predinsone and have been for the past two years.At first it was working,but now I feel bad,not only with PF but with the side effects of predinsone.I have a CT scan to be done on My lungs in MarchThen see the doctor a couple days later.If some things are not changed,I am going to find a different Doctor.Your right,Any One with IPF deserves the best care that there is out there.

Pearl,
I guess he was saying that. He was saying that that is the only cure anyway. As for treatment, there isnt much. Prednisone is pretty standard but from what I hear doesnt really do much, however it helps my Lupus. He only discussed transplant with me because I asked him to. I do need a biopsy first to determine what kind of tissue is on my lungs.
Both of us have been dragging our feet on that one. Still I continue to need more O2 - Im on 7-8 on exertion and 4 at rest. I want to get on the transplant list before its too late to get on it.
I dont know. I guess I could accept what is happening and stay in the house and live what is left of my life but that is just not very hopeful or very much like me.
What other "treatment" have you heard of?
Arrianna

My Dr told me that was the only cure also. He told me I would eventually get to the point to where the only place I could go was a lung transplant. He didn't say I was too old tho. Tom

Hi Tom,thank You for Your reply,I think that was what My doctor ment,He just not sure if I am a candidat after 65 and with rheumatoid arthritis.I am going to ask more question when I see Him in March.

Hi, I have been on the transplant list for 4 years now but I have an antibody matching problem along with the Fibrosis. I have several friends from a local support group who have had a transplant and are doing well. One was 65 when he received his transplant and turned 70 this year and is really doing well. Have your doctor send you to the specialist or Transplant team in your area for assesment and
the sooner the better not only will you find out your options but receive the proper care for your lung condition.

our doctor in south Carolina told my husband the same thing, no one over 65 was a candidate. We just got back from Duke University in NC, Dr. Noble, he said my husband who is 69 would be an excellent candidate for lung transplant. So you need to see a doctor at a big hospital..they have a different set of rules.

I am so sorry but this topic went off my watch list and it just came back on.

To answer Arrianna's question about a treatment, I mentioned this once on the site as a topic and no one ever replied so I assumed that no one was interested.

My sister-in-law was diagnosed with PF after years of being told she hadd chronic bronchitis. She was to the point of being on 02 all the time. Her doctor tried different treatments and the last one is a little unorthodox but it seems to be working pretty good for her. She is on 02 now only during the night and she has started babysitting small grandchildren and sounds really happy with the status of her condition.

The medication he put her on is called Colchicine. It is a medicine used primarily for gout. She has no symptoms of gout and I really don't know how the doctor chose this drug but I would certainly ask about it if I had PF. She was told that she would have to take this for life. Maybe side effects will eventually show up but right now she is enjoying life once again.

I realize that all cases are different but doctors do not know all treatments either.

Hi, SmallFry08.

Have you heard yet from your doctors about getting a lung transplant? My Aunt Susan sent me an email with a link to the Mayo Clinic's website, about this man in his 70s with PF. He went from number 109 on the transplant list to number 9. He was healthy, so they gave him a lung transplant. But just because you have RA or diabetes (like I do), does not mean you can't qualify for a lung transplant. Get a different doctor or go to a a big university hospital, get yourself on a lung transplant list, and stay as physically healthy as you can.

That's what I'm going to do.

Good luck and best wishes to you!

Heather : )

I know of someone that had a lung transplant 2 years ago, at age 70. I understand he is doing fine. You do realize you still have to be on oxygen part of the time, and take steroids. He did say he was told he only had about 4 months to live before the transplant. You do have to be healthy in other ways. He had to have a heart problem fixed before he could have the transplant. He had the transplant at the University of Pittsburgh Medical Center in Pittsburgh, PA. I believe they do more lung transplants than any other medical facility in the US. You might call them. I don't believe I want to have a transplant, I would just as soon die.