Ann, As much as it saddens me to I welcome you to our little group and I am sure that you will find all the support that you will need right here. I have only been here for a couple of months although I was diagnosed with IPF in 2003. I didn't know

[Guest guest]

Ann, As much as it saddens me to I welcome you to our little group and I am sure that you will find all the support that you will need right here. I have only been here for a couple of months although I was diagnosed with IPF in 2003. I didn't know it was here until I received my quarterly letter from the CPF and they listed the web site for this board. It has been a real blessing for me and I am sure that it will be for you. These are a great bunch of men and women and they all know just what we are going through. We all pray for each other and answer questions if we have the answer and that makes it like family. I truely appreciate each and every one of the wonderful people here.

When you go to the doctor ask questions and if you don't get answers just let the doc know that you aren't leaving until you get some type of answer even if it is an I don't know. If you don't get answers just camp out in the hall way and follow him down the hall and eventually he will get tired of looking at you and tell you something. It worked for my mother-in-law should work for us. I am fortunate to have a wonderful Pulmo and he takes time to answer questions and make sure that I am clear as to what he is doing and why. Take care of you and let others help when you need it. It takes a while to learn to do that and I am still working on learning it. I have always been a control freak and need to take care of everyone and forget about me. Again welcome to this board.

Hugs and Prayers!

Barbara R IPF 1/2003>> Good morning All.> > After several months of illness, including pneumonia, I was hospitalized> in early October so that we could get a handle on what exactly was> wrong. After an open lung biopsy, my pulmonist told me that the> diagnosis was Pulmonary Fibrosis. The initial pathology report referred> to it as Interstitial but there was no such 'qualifier' after the second> pathologist studied the specimen. I have read on this board that it is> important to learn exactly which type of PF I have and was wondering> where I would go for that answer. Mypulmonist? My medical records> from the hospital?> > Also wanted to say how much I am appreciating this site as I was unaware> of the number of people who suffer from this disease. Altho Iwouldn't> wish this on anyone, I at least gained some solace in knowing that I am> not the first and won't be the last, and that there are others who are> willing to help and support and pray for the rest of us.> > Since I returned home from the hospital, I have noticed significant> improvement tho of course the shortness of breath is the tough one to> deal with. I am currently on 35 mg prednisone and am actuallydecreasing> 5 mg every 5th day. I am also onO2...2 liters... which I use while> sleeping and keep by me when I shower. (That 50 foot hose is a winner as> I can keep my converter out of the bedroom and still get all around my> house.) There aredays that I have used the O2 for prolonged periods,> but more recently am able to do things without it ... lots of self-talk> about slowing down and breathing correctly seems to help.> > Had a wonderful Thanksgiving with my family, hubby did all the work to> put the meal together (he has been wonderful in taking on most of the> household responsibilities since I first got sick in August) but I found> myself very depressed afterward. I think it is the feeling of> uselessness, and feeling as tho I have lost some of my identity since I> am a full time homemaker. (I won't even begin to address the depression> caused by thoughts of an early demise as I am trying to not dwell on> the negative, while I face reality.) The holidays have always been my> favorite time of year and I am having to adjust to not doing everything> I have done in the past, and that is sad for me.> > Well,I am sure this is longer than I had intended it to be but just> wanted to introduce myself, ask for the wonderful prayer support that so> many of you provide, and get some answers and/or suggestions as time> goes by. Thanks for 'listening'.> > Ann (a k a MrsMarvls) PF 11/06>