Guest guest Posted September 30, 2009 Report Share Posted September 30, 2009 Tess First, I don't know who your doctors are but I'd strongly recommend getting to a teaching hospital with and ILD center, especially one of the IPF centers of excellence. Also, make mention of your dermatomyositis in scheduling as most have a pulmonologist who specializes in PF with connective tissue disease as well as their rheumatologists. Second, all decisions and choices are yours, not the doctors. Listen, learn, decide. I don't know what you're taking currently for your dermatomyositis but it often responds well to meds. I'd encourage you to join a myositis forum as well. Also, I don't know what form of PF you have. Often dermatomyositis is an underlying cause for NSIP and the treatment does help slow the progression or even stabilize you for an extended period of time. If the dermatomyositis is the underlying cause then it also becomes the leading target for treatment. Even if transplant is being considered, to do so would certainly require having the dermatomyositis managed. But, I'm concerned that your doctors are talking transplant ahead of treating of your conditions. Perhaps you are on meds you didn't mention. How and where were you diagnosed? Do you know what form of PF? What is your current condition? > > I've been diagnosed with pulmonary fibrosis and associated with dermato myositis an auto-immune disease. My problem is that I don't really wanna have lung transplant but my doctors are going to that path anyway. I feel a lots of pressure from my doctors and I'm in constant pain with all my muscles and joints. I'm just worried that I'm maybe getting worse too. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2009 Report Share Posted October 30, 2009 Welcome to the board! We always tell new folks who join us that we're sorry you had a reason to look for a group like this but since you did we're happy you found us. What tests have you had so far? It does not sound as though you've had all that much yet. I ask because pulmonary fibrosis can't be diagnosed based on a chest x-ray or even a regular ct scan. So please don't panic based on what you've been told thus far. There are many different interstiatial lung diseases that can cause pulmonary fibrosis. Some are more treatable than others but there are things you will learn to do to take care of yourself that will allow you to live with the disease. I was diagnosed three and a half years ago and have remained relatively stable since that time. I am far from unique. Many of our members can tell a similar story. I'm on oxygen 24/7 and have to take really really good care of myself but I'm still here, still living my life and I'm not planning on dying anytime soon. So , don't panic. Wait till you get some testing and evaluation done. See what the doctors say and then figure out what makes the most sense for you. Hang out here, read through some of the archived posts and ask all the questions you want. We're glad you're here and I hope you find some of the support and friendship that I have! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Fri, October 30, 2009 1:44:24 AMSubject: pulmonary fibrosis Thank you for the contacts I will add to my list.please bear with me all this is new to me! computer and my illness.I still don't know much about it or what kind my lung DR.didn't seem to know much.I went to OHUS in OREGO on 9/8/09 and on friday I went todrop in as I was sick with a cough and was accdently informed that I hadpf.I came home and looked it up on the net and is where I'v found most of my info. and this support group! I do know I'v had it for a long time. I'm just thankful to god that they finally put a name to my illness I don't fill like I'm going crazy anymore. I do have another app.on 12/29/09 at OHSU hopfully I'll get more info. But untill then one day at a time, and its not over till god says its over!!!!!!Thank You for adding me as a member also please bear with me as my spelling isn't very good.THANKSVICTORIA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2009 Report Share Posted October 30, 2009 ...Hello and welcome to the group. As we say "glad you found us" " sorry you needed to" Tell us something about you...do you work? have hobbies? family? We're nosy! It helps to put a "face" on each of us. You can ask anything, say anything, rant, laugh or cry...we'll "get it". Z fibriotic NSIP/05 Z 65, fibriotic NSIP/05/PA And “mild” PH/10/07 No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower wrote: Thank you for the contacts I will add to my list. please bear with me all this is new to me! computer and my illness. I still don't know much about it or what kind my lung DR.didn't seem to know much.I went to OHUS in OREGO on 9/8/09 and on friday I went to drop in as I was sick with a cough and was accdently informed that I had pf.I came home and looked it up on the net and is where I'v found most of my info. and this support group! I do know I'v had it for a long time. I'm just thankful to god that they finally put a name to my illness I don't fill like I'm going crazy anymore. I do have another app.on 12/29/09 at OHSU hopfully I'll get more info. But untill then one day at a time, and its not over till god says its over!!!!!! Thank You for adding me as a member also please bear with me as my spelling isn't very good. THANKS VICTORIA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2009 Report Share Posted October 30, 2009 ...welcome to our group. You are in the best place you can be as we battle our common disease. I found my info online too! What a shock. I let out such a gasp that my husband came running, wanting to know what is wrong with me. If you are going to OHSU then you are somewhere close to me....I live in the Beaverton area. Aloha actually. Where are you?? I'm not glad you have PF but I am glad you are here to learn and feel the support we all need. Stick around... MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there! pulmonary fibrosis Thank you for the contacts I will add to my list.please bear with me all this is new to me! computer and my illness.I still don't know much about it or what kind my lung DR.didn't seem to know much.I went to OHUS in OREGO on 9/8/09 and on friday I went todrop in as I was sick with a cough and was accdently informed that I hadpf.I came home and looked it up on the net and is where I'v found most of my info. and this support group! I do know I'v had it for a long time. I'm just thankful to god that they finally put a name to my illness I don't fill like I'm going crazy anymore. I do have another app.on 12/29/09 at OHSU hopfully I'll get more info. But untill then one day at a time, and its not over till god says its over!!!!!!Thank You for adding me as a member also please bear with me as my spelling isn't very good.THANKSVICTORIA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2009 Report Share Posted October 30, 2009 > > > > > > Thank you for the contacts I will add to my list. > > please bear with me all this is new to me! computer and my illness. > > I still don't know much about it or what kind my lung DR.didn't seem > > to know much.I went to OHUS in OREGO on 9/8/09 and on friday I went to > > drop in as I was sick with a cough and was accdently informed that I had > > pf.I came home and looked it up on the net and is where I'v found most > > of my info. and this support group! I do know I'v had it for a long > > time. I'm just thankful to god that they finally put a name to my > > illness I don't fill like I'm going crazy anymore. I do have another > > app.on 12/29/09 at OHSU hopfully I'll get more info. But untill then > > one day at a time, and its not over till god says its over!!!!!! > > Thank You for adding me as a member also please bear with me as my > > spelling isn't very good. > > > > THANKS > > VICTORIA > > > >Sametha wrote I was diagnosed with PF in 2006. I did not know much abut it eather. I went on the net to get alot of information. I have beenin and out of the hospital with Phemonia. I am taking it one day at a time like yourself. It is good to keep each other lifted up while going through this trial in our lives. Thanks Sametha > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2009 Report Share Posted November 1, 2009 Welcome to the group . I think a lot of people find out about their disease "accidently". Once the initial shock is over then acceptance sets in. In any case keep posting so we know how your doing. There are a lot of good people who can point you in the right direction so be sure to ask questions and don't forget about Google on the net-I've found it very useful.PJ in OH, 54, IPF'09, Sjogren's'95 pulmonary fibrosis Thank you for the contacts I will add to my list.please bear with me all this is new to me! computer and my illness.I still don't know much about it or what kind my lung DR.didn't seem to know much.I went to OHUS in OREGO on 9/8/09 and on friday I went todrop in as I was sick with a cough and was accdently informed that I hadpf.I came home and looked it up on the net and is where I'v found most of my info. and this support group! I do know I'v had it for a long time. I'm just thankful to god that they finally put a name to my illness I don't fill like I'm going crazy anymore. I do have another app.on 12/29/09 at OHSU hopfully I'll get more info. But untill then one day at a time, and its not over till god says its over!!!!!! Thank You for adding me as a member also please bear with me as my spelling isn't very good.THANKS VICTORIA Quote Link to comment Share on other sites More sharing options...
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