Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 Caro, Sounds as if you found good docs in B'ham. I am concerned that they say it is rare for anyone under the age of 50 to have IPF. I first had symptoms in my early forties and now I am 53. Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl >> Hi All,> > Sorry I haven't posted in a few days again, but I am back from > Birmingham. Still don't know anything definite other than the > diagnosis I already have of UIP. First when I got there, they did > ABGs (OMG!! It hurt so bad!! I had it done once before and I didn't > even feel it, but not this time. She had to pry (her words)). Then > I had to do PFTs, which showed 57% lung function, compared to the 68% > I had in December. Next, I visited with the doc. Actually there > were 2 docs. The first one was a fellow of Dr. de Andrade (who was > the Assistant Professor). His name was Dr. , very nice guy. > He took down all my history and said he thinks I may have pulmonary > hypertension (which would explain the rapid heart rate). He did exam > and then goes to discuss with Dr. de Andrade, who comes back in and > again, very nice guy. He explains that it is very rare in a woman > under the age of 50 to have pulmonary fibrosis and since I have been > sick for 6 years already, even more rare, not unheard of, just rare. > So I am a model case!! Anyhoo, due to this fact that I AM so rare, > he thinks there is an underlying disease causing the PF, so I get > blood work (10 tubes of blood) for various autoimmune diseases. He > is leaning towards Sjogren's or scleroderma (mostly scleroderma for > which also there is no cure). Dr. did a heart exam and looked > at the veins in my neck before talking to Dr. de Andrade who decided > I needed another chest CT (my last one was in February 2008), so I > had that done (without contrast thank God!!) and also that I needed > an ultrasound of my heart to check for blood flow to the heart and > for any blockages to the valves. All in all, he said if I don't hear > from them in a week, to call them to get the results. Other than > that, he didn't change any of my medications, except to decrease the > prednisone even further to 10 mg a day. He said he wants me to get > off the prednisone completely, so NO MORE STEROIDS!! YEAH!!!! I > told him I had gained 20 pounds since being on them starting in > January, and told him I have moon faces and he agreed. He said they > want me lean and healthy and I did not need to be on that for sure. > Any weight gain is out of the question, he said. He told me I have > to keep moving. He told me to eat lean proteins, fruits, and veggies > and no snacks. He PROMISED me the weight will come off. He said he > expects me to lose 10 pounds rather quickly. I sure hope he is > right, because I am miserable and I told him so, too!! He said there > are no real medications to treat PF, and I knew that, but he said > when I come back, I can decide either to go with the Imuran and N-> Acetyl-Cysteine (NAC), which is all the best they know at this point > to give patients with PF, or I can try an experimental drug (clinical > trial), which I don't know what the side effects will be, but I am > kinda leaning towards doing anyway, because I feel like even if it > doesn't help me, it may help some other person with this stupid > disease on down the road and it would be worth it. As for lung > transplant, I don't yet qualify because my sats are not low enough > and I am not on oxygen yet. Note that I said "YET." He said the key > to prolonging oxygen use as long as possible is to stay as active and > healthy as possible and that is what I am going to try and do. > (my grandson) is here with me this summer, and he really > helps to keep me motivated and I think I need that right now. Also > the docs were really glad to know that I am in pulmonary rehab and > that I am going to stay in the Wellness Program when I get done with > the rehab program. All in all, even though I did get some not so > good news, I feel like I got some good news, also, so until next week > or whenever I get the results, I am just trying to keep my self in > exercise and health mode the best I can and keep going.> > So that was my Birmingham visit. My parents went with me and we > really had a nice trip. I don't know what I would do without them. > They have been my rock through all of this. Thank God for my Mama > and Daddy!!> > I hope you all have a great week and now that I am back I hope to be > able to keep up with posts better and write more than I have been. I > do reads all the posts and think of each and every one of you > everyday. You are my air family and you are my rock, as well. Don't > know what I would do without you guys, either!! I love you all!!> > Have a great day!!> > Caro> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 I know. When he told me that, I was thinking there are several people here in the group who are women under the age of 50, but he did say, it was rare, but not unheard of. I didn't know it was rare, either. I think they are going to want to watch me very closely and I am happy for that. I am really glad I went even though I worked myself into a frenzy over it for weeks!! I am really trying today to stay on track with eating healthy and exercise. Guess I will just have to take 1 day at a time, but in reality, I think that is all any of us can do. I am really glad my pulmo sent me there. There was another thing they told me, also. My pulmo rehab therapist told me that most people who have pulmonary disease also have cardiac disease and the docs in Birmingham told me that is not true, but after he did the cardiac exam, he ordered the ultrasound of my heart, so I am not sure if he ordered it because of what I told him about the rapid heart rate (my heart rate was 108 while I was resting in his office after no exercise whatsoever), or if it was because of something he heard when he was doing the exam. He did tell me when he listened to my lungs that I had the "classic crackles" of PF. I am leaning towards it was probably something he heard rather than what I told him, but don't want to second guess until they call me with the results. Guess I will just have to wait and I think that is the hardest part!! CaroCaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi Subject: Re: BirminghamTo: Breathe-Support Date: Thursday, June 19, 2008, 7:50 AM Caro, Sounds as if you found good docs in B'ham. I am concerned that they say it is rare for anyone under the age of 50 to have IPF. I first had symptoms in my early forties and now I am 53. Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl >> Hi All,> > Sorry I haven't posted in a few days again, but I am back from > Birmingham. Still don't know anything definite other than the > diagnosis I already have of UIP. First when I got there, they did > ABGs (OMG!! It hurt so bad!! I had it done once before and I didn't > even feel it, but not this time. She had to pry (her words)). Then > I had to do PFTs, which showed 57% lung function, compared to the 68% > I had in December. Next, I visited with the doc. Actually there > were 2 docs. The first one was a fellow of Dr. de Andrade (who was > the Assistant Professor). His name was Dr. , very nice guy. > He took down all my history and said he thinks I may have pulmonary > hypertension (which would explain the rapid heart rate). He did exam > and then goes to discuss with Dr. de Andrade, who comes back in and > again, very nice guy. He explains that it is very rare in a woman > under the age of 50 to have pulmonary fibrosis and since I have been > sick for 6 years already, even more rare, not unheard of, just rare. > So I am a model case!! Anyhoo, due to this fact that I AM so rare, > he thinks there is an underlying disease causing the PF, so I get > blood work (10 tubes of blood) for various autoimmune diseases. He > is leaning towards Sjogren's or scleroderma (mostly scleroderma for > which also there is no cure). Dr. did a heart exam and looked > at the veins in my neck before talking to Dr. de Andrade who decided > I needed another chest CT (my last one was in February 2008), so I > had that done (without contrast thank God!!) and also that I needed > an ultrasound of my heart to check for blood flow to the heart and > for any blockages to the valves. All in all, he said if I don't hear > from them in a week, to call them to get the results. Other than > that, he didn't change any of my medications, except to decrease the > prednisone even further to 10 mg a day. He said he wants me to get > off the prednisone completely, so NO MORE STEROIDS!! YEAH!!!! I > told him I had gained 20 pounds since being on them starting in > January, and told him I have moon faces and he agreed. He said they > want me lean and healthy and I did not need to be on that for sure. > Any weight gain is out of the question, he said. He told me I have > to keep moving. He told me to eat lean proteins, fruits, and veggies > and no snacks. He PROMISED me the weight will come off. He said he > expects me to lose 10 pounds rather quickly. I sure hope he is > right, because I am miserable and I told him so, too!! He said there > are no real medications to treat PF, and I knew that, but he said > when I come back, I can decide either to go with the Imuran and N-> Acetyl-Cysteine (NAC), which is all the best they know at this point > to give patients with PF, or I can try an experimental drug (clinical > trial), which I don't know what the side effects will be, but I am > kinda leaning towards doing anyway, because I feel like even if it > doesn't help me, it may help some other person with this stupid > disease on down the road and it would be worth it. As for lung > transplant, I don't yet qualify because my sats are not low enough > and I am not on oxygen yet. Note that I said "YET." He said the key > to prolonging oxygen use as long as possible is to stay as active and > healthy as possible and that is what I am going to try and do. > (my grandson) is here with me this summer, and he really > helps to keep me motivated and I think I need that right now. Also > the docs were really glad to know that I am in pulmonary rehab and > that I am going to stay in the Wellness Program when I get done with > the rehab program. All in all, even though I did get some not so > good news, I feel like I got some good news, also, so until next week > or whenever I get the results, I am just trying to keep my self in > exercise and health mode the best I can and keep going.> > So that was my Birmingham visit. My parents went with me and we > really had a nice trip. I don't know what I would do without them. > They have been my rock through all of this. Thank God for my Mama > and Daddy!!> > I hope you all have a great week and now that I am back I hope to be > able to keep up with posts better and write more than I have been. I > do reads all the posts and think of each and every one of you > everyday. You are my air family and you are my rock, as well. Don't > know what I would do without you guys, either!! I love you all!!> > Have a great day!!> > Caro> Quote Link to comment Share on other sites More sharing options...
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