Pulmonary Fibrosis Support Group

Hello Chelly6, I'm so sorry about your husband - he is too young to have this happen. How long has he had PF, and do they know what caused it? How long did he have it before he went on oxygen? I know it is difficult to watch a loved one suffer so much. It sound like you have a beautiful family. What are the ages of your children? I will keep you and your family in my thoughts and prayers. God bless.
PLangston

we are in our 7th year with it, and he has been on oxygen for a year now,they said when he was doing building work when he was younger has stsrted it with the dust.its just been theses last 6 months that he is going down hill walking is a no no and now i have to help him shower.i always thought it was an old peoples illness cause everything i heard or read they were old (i didnt mean that to sound horrid i dont wish this on anyone)i ahve 5 boys and one girl the boys are 21 20 18 16 and 11 our daughter is 10 but kids are so great they seem to understand it all funny ah.i will continue with this site everyone seems to understand and my wishes are to you all

Hello,
My name is Summer and I have IPF.I am only 28 years old have had this disease for about 3 1/2 years now. I too am on 24/7 oxygen and know how difficult this disease can be. I have been so fortunate because I have seen some amazing doctors who have been able to keep me somewhat comfortable. Is your husband going to have a double lung transplant? That is what I am waiting for. I don't know what your situation is but there is a great hospital in Denver, Colorodo that specializes in IPF. It is called National Jewish Medical. I traveled there and they kept me for a week doing every test you can possibly imagine. By the end of that week I regained hope because they gave me options that I had no where else. I didn't have any insurance and they wrote off the whole thing it was amazing. Now I just have to lose enough weight to get on the transplant list. It has been difficult but I know that I can do it. I will be having my transplant at the University of Washington in Seattle, Washington. I am here anytime if you need to talk.
Summer

Hi chelly, My name is Tom and I was DX'd with IPF in May of '08 with a biopsy, I'm now 64. I'm on oxygen since being DX'd and sleep much of the time. I live alone but, my sister comes 2-3 times a week for a couple of hours per day to help me out. IPF can be difficult, I can't imagine the problems confronted when you have young children. My thoughts and Prayers go out to You and Your Family. Have a Good Week. Hugs to All, Tom

hello to you all,we have been turned down for the transplants because he is a diabetic as well and its the risk of infections in him,we live in london in the uk and our hospitals are not as clued up to this illness,he is in hospital at the moment its his heart now,but we are all doing fine,as i said im always smiling,always happy,sais lots of prayers for him just want him home now xx

Chelly, sorry to hear about your husband. my husband is in the ICU andh as been for 2 weeks and now duke doesn't want him for a transplant because his oxygen level is too high - this is devastating to me becuase I don't know what else to do. But at least know there are other people here that understand.

Chelly, do all hospitals in the UK turn down
people for transplants because of diabetes?
Here in the US some hospitals will turn down
people with diabetes but other hospitals will
accept them. Have you talked to other hospitals?