Hi guys, wondering what you all knew about pulmonary fibrosis. where it comes from? and if there are any genetic/familial effects?

There are a couple different types of fibrosis so not sure which one you are asking about. My mom passed last year of Ideopathic Pulmonary Fibrosis which was extremely aggressive. They said at that time that this was something they could diagnose but don't know exactly why and where it comes from but have some links not fully detailed yet. They claim it is not genetic but do not rule out atmospheric conditions that could cause it to be within the same families.
I know this isn't much, but hope it helps.

They are telling my husband it is enviromental but they are not getting any more specific than that. I think there are so many variables involved it's hard to tell. Pulminary Fibrosis seems to be a blanket diagnosis for when they don't know what is happening. (do I sound frustrated? Sorry)

Caregiver: Don't apologize for the frustration. Let yourself feel it so it doesn't add up, you do have a long hard pull in front of you. I actually kept my mom at home with the care of Hospice for the last 2 months so I've been the whole road of emotions, frustrations and questions.
You are right. PF is a generic term for "it's in the lungs but we don't know all the particulars" (my words and theirs). The additional name of ideopathic is even more generic and just means "don't know why, just know it's there." The most important thing is to be dealing only with a pulmonary specialist. Most likely your hubby is on prednisone meds of some degree. Although the side effects may not be pleasant, with this disease it's the only effective way, to date, of slowing its progression. My mom was just very unfortunate to have had an extremely aggressive form which the docs said they (here in Chicago) had never seen so aggressive before. But through my experience with her, I have known and corresponded with some who have dealt with this and lived anywhere from 4-15 years. A lot has to do with the will of the person, the persistence with which they control their diet, meds, exercise (even tho its difficult it's necessary to keep the strength up).
Good luck and God Bless. I'll try to check in from time to time or you can e-mail me if you just need to vent your frustrations to someone who's been the caretaker of this sad disease. kdb

kdb-I lost my father last year to ipf. He was diagnosed in oct of 1998 and died in may of 2000. They too said it was the most aggressive case they had seen. Im not going to get into what I feel where some extremely large cracks that he fell through. However, I was concerned because I have heard that it can be genetic! But, I suppose that if they dont know where it comes from, they dont know if its genetic! Seems to me, there ought to be a little more research into this disease!!!!! Thanks for replying to me!

One last thing I forgot! Even though its been a year and a few months since my dads death, I am still extremely angry! So caregiver, although he was my father and not my husband, Im sure the range of emotions are the same. Good luck!

Ralean: Your anger is justifiable. It is hard to fight against something you cannot see, understand or find reason for. I, too, believe this disease (which is a catch all for anything they can't define) needs much more attention and research. I guess the right celebrity just was not diagnosed yet.
My mom was diagnosed in April 28 of 2000 and passed the 3rd of July of 2000. It was incredibly sad but Hospice was wonderful and made the journey at least bearable. The kind thing is that mom did not really "suffer" in terms of pain. And this is the type of consolation I would like to remember and pass on to others. I do not wish to pass on more anxiety and hardship to others when they are uncertain as to what they are facing. This disease reacts differently within all people so I pray that Caregiver can find some solice in that.
I was told this is not genetic. So there ya go! Another, "we don't have a clue" when it comes to this disease.
God Bless to you both. Ralean, I hope you can someday find some peace. We can fight and haggle and let the anger consume us but the end result will not change, our loved ones will not be returned and we will have lost some time within our own lives in which we may have been able to see something good.
Sorry, I have had a really hard life so far and the only way I cope is to find good in all things, even if it's the smallest minute factor, like a smile or a flower. God Bless

My husband is slowly deteriorating and I can certainly understand your anger. I am mad as !%$!. I'm really not ready for this! Not only am I dealing with his illness and all that entails as far caring for him but I have to deal with the DRs as well as sometime they can be pretty insensitive.
I also try very hard not to hold on to that anger. I don't want our last days together wasted being mad and something as intagable as a disease.
Thanks for letting me vent

My Mother was diagnosed with IPF a year ago, since then she has lost substantial weight. The Dr wants to do a scope of her stomach, he says it's not from the desease, but her oxygen level is 80%. Am I wrong thinking that would have some sort of bearing on her weught and all?
Also if "anyone" could please help as to where to get "good" info on this desease please let me know. We just lost our Dad to Lung Cancer 3 years ago, and I still amd angry over that I don't know how I will deal with this, I need MORE info, that may help. I just wish I was more informed,so I can be of some help to her.
thanks for Any info, and by all means feal free to email me.

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LeeAnn T.

LeeAnn, can you tell me what you find out about your mother's weight loss? My father has IPF as well and has lost a GREAT deal of weight over the past year. I'm very interested to know what the doctors say about your mother.

I am so sorry you too are having to endure seeing your parent with this horrible disease.

God bless you.

PS is she on Actimmune? If not, get her on it ASAP. I wish daddy had been on it from the beginning.

Mary Ann

Hi everyone, I was just told that I have CPF. I am not sure what to make of it. I have been reading all day all the things I can find on the web about this. Boy, it sounds really scarey. Can anyone out there tell me their symtoms of this horrible disease?

Thanks,
Malibu

[This message has been edited by Malibu (edited 11-28-2001).]