Pulmonary Fibrosis Support Group

Diffuse parenchymal lung disease (DPLD), also known as interstitial lung disease, refers to a group of lung diseases, affecting the alveolar epithelium, pulmonary capillary endothelium, basement membrane, perivascular and perilymphatic tissues. The term DPLD is used to distinguish these diseases from obstructive airways diseases. Most types of DPLD involve fibrosis, but...

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Lungs & Respiration
/ Pulmonary Fibrosis Support Group

Lung Transplant??

deleted_user
deleted_user
Hi everyone. I am a member of this group because of my daughter, Tina, who had lung problems when I first joined DS. Unfortunately she passed away last year, July 5th from a collapsed lung. Her lungs had hardened, but once she was put in the "Rotoprone" bed, she turned the corner and her lungs started responding to treatment. They started softening up. I think you have to be in the icu before you can get this treatment. She was heavily sedated the whole time she was in this bed.
Anyway, I have been reading many of your posts. Is anyone on the national lung transplant list? I am just curious. I wish you could all be on the list.
deleted_user
deleted_user
hi there

did your daughter have PF and if so, how long did she have it for?

what's the Rotoprone bed for? what does it do?

How long have you had PF?

i read about lung transplants, and that the survival time period is that you only live anywhere from 3 to 5 years longer.

are you on the waiting list for a transplant?
deleted_user
deleted_user
hello, I'm on the transplant list. I just want to say that you can live longer than 3 to 5 years. I have talked to tranplanted patients and there is one patient that got transplanted 22 years ago and she is still living. Many of the patients that I've talked to have been transplanted for moe than five years.
deleted_user
deleted_user
how much does a lung transplant cost?
deleted_user
deleted_user
ok, first reply to mjmac,I don't know how much lung transplants cost. yes my daughter had PF plus some other things in her lungs. Don't really know how long she had it. Go to Google.com and put in "rotoprone bed" and it will have images and explanations. It basically turns the person inside it very often. They (doctors, etc.) say that moving the body is VERY good for the lungs and that being on your stomach is very good for someone who is in the hospital and not making much progress with any other treatments. I do not have PF, my daughter did.

Second to cshmp: the best of luck to you. I pray you will receive some lungs asap. Yes, transplant recipients can live very long lives!! :0)
deleted_user
deleted_user
I have been through the transplant evaluation, but my lung capacity is not low enough to be listed. I have been stable for over two years now.
As far as the survival rate for transplants, I believe those numbers are averages, however I have met many lung transplant patients that are five years and longer and still doing good.
deleted_user
deleted_user
Hi, I am not on the list as of yet that is why i am having the Gastric Bypass to get on the waiting list. do to the predinsome i gain 100 lbs so i have to lose 120 to beable to get on it. but i have been holding good now for about 7 years this March. I am told through my doctors that the transplant survival rate goes up every year do to new info and treatments. Was also told once you get the transplant it cures your current diease but gives you another. Like the one smokers get. can't remember the name sorry. I too have met people who has had it and are living alot longer then the five years mark.
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