Guest guest Posted April 4, 2008 Report Share Posted April 4, 2008 I'm so happy you're going to the University of Alabama at Birmingham. I think you do need some real experts evaluating you even if they come to the same conclusions. While the rheumatoid arthritis may be accurate it sort of came out of nowhere. UAB is one of the Centers of Excellence and will be much more experienced with IPF/UIP and rheumatoid arthritis. Today you got a diagnosis of a disease you hadn't previously had diagnosed and I'd certainly want that confirmed, especially as hard as autoimmune diseases are to pin down. Did he tell you on what he based the rheumatoid arthritis diagnosis? Also, UAB will probably rerun all the tests. Most centers do. U of Chicago is even having their own pathologist look again at my biopsy slides even though they've been reviewed both locally and by Mayo Clinic. You might want to check with UAB on that as well. It sounds like right now the thing limiting your activity and comfort most is your back problems. Your PF or RA didn't change just because they were diagnosed. Don't let the diagnosis influence how you feel. Now try to get some help with your back. > > Hi all, > > OMG, I have missed you guys so much!! My PC has been down and I have > been unable to post. I have tons of emails to go through!! LOL!! > > Well, I will give you all an update on my end of this disease -- > > My pulmo FINALLY came back into the country. I went to see him on > March 31. He told me the diagnosis, which I already knew was UIP. He > said, " Unfortunately, you have the worst one and there is no > medication to treat the disease. " (I already knew that, too.) Then > he said, I have rheumatoid arthritis, which I didn't know, and he > thinks that is what caused the UIP in the first place. He told me I > have to be on prednisone 30 mg a day for the rest of my life (unless > he increases it). He started me on Imuran 50 mg a day twice a day > forever, too. Then he said he wants me to take Os-Cal D twice a > day. Stay on the Advair 250/50, the Singulair 10 a day, the > albuterol inhaler p.r.n., the Xopenex nebs p.r.n., and the Rhinocort > Aqua daily. Then he said if I wanted to I could get a second opinion > because someone else may know something knew that he did not. I told > him he WAS my second opinion cuz my family doc had already told me I > had IPF but he didn't know which one. Also he told me that I have to > have a CBC and liver function tests every 4 weeks for the rest of my > life because the Imuran can make your white count drop drastically or > you liver can shut down. He said he wants to watch me very closely. > Finally, he decided on sending me to the University of Alabama in > Birmingham and the nurse called me today with an appointment for June > 17. She said they will send me a welcome packet with more info on > what to do. Also, she said that I will have to have another PFT when > I get there before I see the doc and also ABGs, because even though I > had them in December, they want to get their own. Meanwhile, a week > ago my back went out again. I can tolerate it standing up, but when > I sit down, or lie down it is horrible. I can barely get in and out > of the car to go anywhere because I can't twist around. I still have > some Lorcet left from the lung biopsy so I have been taking those for > the back pain. Last time it went out in December 2006, they said I > had degenerative disk disease with osteoarthritis and sacroiliitis. > They sent me to physical therapy for 3 weeks. I found the sheet of > the back exercises they gave me and I have been trying to do them, > but it is so painful, I am not getting much done. This time, though, > the pain is not only in my back. It is radiating down my right leg > and every time I cough (which you all know is very often), it is like > knife-stabbing in my lower back and then shoots down my leg again. I > probably should go to the ER but I don't want to go. I have just > been sitting on a heating pad whenever I absolutely have to sit. > Even when I lie down in the bed, I can't even get comfortable. It > really sucks. Oh yeah, I almost forgot. I asked the pulmo, " So, > what am I looking at, a year maybe? " He couldn't really answer that. > He said it is bad, but the good thing is in December, I still had 68% > lung function. So I am still just taking it one day at a time. > > I am really so sad to hear about . She will really be missed. > > Caro > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2008 Report Share Posted April 4, 2008 Caro...good to hear from you. I wish your update were a bit brighter. Are you managing to move through the days ok? Glad you're back w/us. Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there! Glad to be back Hi all,OMG, I have missed you guys so much!! My PC has been down and I have been unable to post. I have tons of emails to go through!! LOL!!Well, I will give you all an update on my end of this disease -- My pulmo FINALLY came back into the country. I went to see him on March 31. He told me the diagnosis, which I already knew was UIP. He said, "Unfortunately, you have the worst one and there is no medication to treat the disease." (I already knew that, too.) Then he said, I have rheumatoid arthritis, which I didn't know, and he thinks that is what caused the UIP in the first place. He told me I have to be on prednisone 30 mg a day for the rest of my life (unless he increases it). He started me on Imuran 50 mg a day twice a day forever, too. Then he said he wants me to take Os-Cal D twice a day. Stay on the Advair 250/50, the Singulair 10 a day, the albuterol inhaler p.r.n., the Xopenex nebs p.r.n., and the Rhinocort Aqua daily. Then he said if I wanted to I could get a second opinion because someone else may know something knew that he did not. I told him he WAS my second opinion cuz my family doc had already told me I had IPF but he didn't know which one. Also he told me that I have to have a CBC and liver function tests every 4 weeks for the rest of my life because the Imuran can make your white count drop drastically or you liver can shut down. He said he wants to watch me very closely. Finally, he decided on sending me to the University of Alabama in Birmingham and the nurse called me today with an appointment for June 17. She said they will send me a welcome packet with more info on what to do. Also, she said that I will have to have another PFT when I get there before I see the doc and also ABGs, because even though I had them in December, they want to get their own. Meanwhile, a week ago my back went out again. I can tolerate it standing up, but when I sit down, or lie down it is horrible. I can barely get in and out of the car to go anywhere because I can't twist around. I still have some Lorcet left from the lung biopsy so I have been taking those for the back pain. Last time it went out in December 2006, they said I had degenerative disk disease with osteoarthritis and sacroiliitis. They sent me to physical therapy for 3 weeks. I found the sheet of the back exercises they gave me and I have been trying to do them, but it is so painful, I am not getting much done. This time, though, the pain is not only in my back. It is radiating down my right leg and every time I cough (which you all know is very often), it is like knife-stabbing in my lower back and then shoots down my leg again. I probably should go to the ER but I don't want to go. I have just been sitting on a heating pad whenever I absolutely have to sit. Even when I lie down in the bed, I can't even get comfortable. It really sucks. Oh yeah, I almost forgot. I asked the pulmo, "So, what am I looking at, a year maybe?" He couldn't really answer that. He said it is bad, but the good thing is in December, I still had 68% lung function. So I am still just taking it one day at a time.I am really so sad to hear about . She will really be missed.Caro Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2008 Report Share Posted April 4, 2008 I am making it fairly well. Just never had this back pain last this long before (a week and a half). I never had it radiate into my leg before, either. Kind of scary. I had a really bad cold with flu-like symptoms before the back pain started and I thought maybe I had just coughed so hard that was what triggered it. Even with that, I am still doing a lot better than some others and I can't complain. I have to admit I am scared to death to go the University of Alabama for transplant info and clinical trials. I don't know what to expect and that is what scares me the most, I guess. How are you all doing? I want to get updates from everyone. I really missed you guys!! My dad had a colonoscopy this morning just for preventive measures. He has not even had any symptoms. They found multiple, multiple polyps, the doc said, but they were all small and he didn't think they looked malignant. We won't get the biopsy results back for about 7 days. Hopefully will be okay. Last Monday, my Grandpa, bless his heart, at 93 years old, passed away. It was a really tough time but I think it really brought my family closer and I look at that as a good thing. Let me know if I can help anyone. I really feel the need to be needed right now!! Hope you all have a good night. CaroSher Bauman wrote: Caro...good to hear from you. I wish your update were a bit brighter. Are you managing to move through the days ok? Glad you're back w/us. Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there! Glad to be back Hi all,OMG, I have missed you guys so much!! My PC has been down and I have been unable to post. I have tons of emails to go through!! LOL!!Well, I will give you all an update on my end of this disease -- My pulmo FINALLY came back into the country. I went to see him on March 31. He told me the diagnosis, which I already knew was UIP. He said, "Unfortunately, you have the worst one and there is no medication to treat the disease." (I already knew that, too.) Then he said, I have rheumatoid arthritis, which I didn't know, and he thinks that is what caused the UIP in the first place. He told me I have to be on prednisone 30 mg a day for the rest of my life (unless he increases it). He started me on Imuran 50 mg a day twice a day forever, too. Then he said he wants me to take Os-Cal D twice a day. Stay on the Advair 250/50, the Singulair 10 a day, the albuterol inhaler p.r.n., the Xopenex nebs p.r.n., and the Rhinocort Aqua daily. Then he said if I wanted to I could get a second opinion because someone else may know something knew that he did not. I told him he WAS my second opinion cuz my family doc had already told me I had IPF but he didn't know which one. Also he told me that I have to have a CBC and liver function tests every 4 weeks for the rest of my life because the Imuran can make your white count drop drastically or you liver can shut down. He said he wants to watch me very closely. Finally, he decided on sending me to the University of Alabama in Birmingham and the nurse called me today with an appointment for June 17. She said they will send me a welcome packet with more info on what to do. Also, she said that I will have to have another PFT when I get there before I see the doc and also ABGs, because even though I had them in December, they want to get their own. Meanwhile, a week ago my back went out again. I can tolerate it standing up, but when I sit down, or lie down it is horrible. I can barely get in and out of the car to go anywhere because I can't twist around. I still have some Lorcet left from the lung biopsy so I have been taking those for the back pain. Last time it went out in December 2006, they said I had degenerative disk disease with osteoarthritis and sacroiliitis. They sent me to physical therapy for 3 weeks. I found the sheet of the back exercises they gave me and I have been trying to do them, but it is so painful, I am not getting much done. This time, though, the pain is not only in my back. It is radiating down my right leg and every time I cough (which you all know is very often), it is like knife-stabbing in my lower back and then shoots down my leg again. I probably should go to the ER but I don't want to go. I have just been sitting on a heating pad whenever I absolutely have to sit. Even when I lie down in the bed, I can't even get comfortable. It really sucks. Oh yeah, I almost forgot. I asked the pulmo, "So, what am I looking at, a year maybe?" He couldn't really answer that. He said it is bad, but the good thing is in December, I still had 68% lung function. So I am still just taking it one day at a time.I am really so sad to hear about . She will really be missed.Caro CaroAsthma 1976,Osteoarthritis 2002, COPD 02/06, IPF 08/07, UIP 01/08Mississippi You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2008 Report Share Posted April 4, 2008 I actually don't know how he came up with the RA diagnosis. I am almost positive the last time I saw him before he went on his trip that he said all my autoimmune tests were negative. Very confusing to me, but he did say he wanted to send me to Birmingham because they specialize specifically in pulmonary fibrosis and he only specializes in pulmonary medicine and he thought I could get better help. That made me feel a little better about him after I felt like he ran out on me after the lung biopsy. CaroBruce Moreland wrote: I'm so happy you're going to the University of Alabama at Birmingham. Ithink you do need some real experts evaluating you even if they come tothe same conclusions. While the rheumatoid arthritis may be accurate itsort of came out of nowhere. UAB is one of the Centers of Excellence andwill be much more experienced with IPF/UIP and rheumatoid arthritis.Today you got a diagnosis of a disease you hadn't previously haddiagnosed and I'd certainly want that confirmed, especially as hard asautoimmune diseases are to pin down. Did he tell you on what he basedthe rheumatoid arthritis diagnosis?Also, UAB will probably rerun all the tests. Most centers do. U ofChicago is even having their own pathologist look again at my biopsyslides even though they've been reviewed both locally and by MayoClinic. You might want to check with UAB on that as well.It sounds like right now the thing limiting your activity and comfortmost is your back problems. Your PF or RA didn't change just becausethey were diagnosed. Don't let the diagnosis influence how you feel. Nowtry to get some help with your back.>> Hi all,>> OMG, I have missed you guys so much!! My PC has been down and I have> been unable to post. I have tons of emails to go through!! LOL!!>> Well, I will give you all an update on my end of this disease -->> My pulmo FINALLY came back into the country. I went to see him on> March 31. He told me the diagnosis, which I already knew was UIP. He> said, "Unfortunately, you have the worst one and there is no> medication to treat the disease." (I already knew that, too.) Then> he said, I have rheumatoid arthritis, which I didn't know, and he> thinks that is what caused the UIP in the first place. He told me I> have to be on prednisone 30 mg a day for the rest of my life (unless> he increases it). He started me on Imuran 50 mg a day twice a day> forever, too. Then he said he wants me to take Os-Cal D twice a> day. Stay on the Advair 250/50, the Singulair 10 a day, the> albuterol inhaler p.r.n., the Xopenex nebs p.r.n., and the Rhinocort> Aqua daily. Then he said if I wanted to I could get a second opinion> because someone else may know something knew that he did not. I told> him he WAS my second opinion cuz my family doc had already told me I> had IPF but he didn't know which one. Also he told me that I have to> have a CBC and liver function tests every 4 weeks for the rest of my> life because the Imuran can make your white count drop drastically or> you liver can shut down. He said he wants to watch me very closely.> Finally, he decided on sending me to the University of Alabama in> Birmingham and the nurse called me today with an appointment for June> 17. She said they will send me a welcome packet with more info on> what to do. Also, she said that I will have to have another PFT when> I get there before I see the doc and also ABGs, because even though I> had them in December, they want to get their own. Meanwhile, a week> ago my back went out again. I can tolerate it standing up, but when> I sit down, or lie down it is horrible. I can barely get in and out> of the car to go anywhere because I can't twist around. I still have> some Lorcet left from the lung biopsy so I have been taking those for> the back pain. Last time it went out in December 2006, they said I> had degenerative disk disease with osteoarthritis and sacroiliitis.> They sent me to physical therapy for 3 weeks. I found the sheet of> the back exercises they gave me and I have been trying to do them,> but it is so painful, I am not getting much done. This time, though,> the pain is not only in my back. It is radiating down my right leg> and every time I cough (which you all know is very often), it is like> knife-stabbing in my lower back and then shoots down my leg again. I> probably should go to the ER but I don't want to go. I have just> been sitting on a heating pad whenever I absolutely have to sit.> Even when I lie down in the bed, I can't even get comfortable. It> really sucks. Oh yeah, I almost forgot. I asked the pulmo, "So,> what am I looking at, a year maybe?" He couldn't really answer that.> He said it is bad, but the good thing is in December, I still had 68%> lung function. So I am still just taking it one day at a time.>> I am really so sad to hear about . She will really be missed.>> Caro>CaroAsthma 1976,Osteoarthritis 2002, COPD 02/06, IPF 08/07, UIP 01/08Mississippi You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2008 Report Share Posted April 4, 2008 Caro Get excited about Birmingham because you're going to be with people there who just deal with PF and not other lung diseases. Which doctor are you scheduled with? Just think that you'll get a complete review of everything and then all options laid out for you. Prepare all your questions and concerns. I know it sounds weird to say get excited about any medical appointment or hospital but I just think the thought of the abundance of knowledge there is something to look forward to. I know with the back pain its hard to look forward to anything. But, I can tell you, I know Wednesday in Chicago is going to be a very long day for me but I really do look forward to either getting all my diagnoses confirmed or learning anything additional they might have to offer. I may be guessing way wrong but I just figure the combined doctors at UAB will have seen about 500 times as many patients with PF as your local pulmonologist (maybe more). I figure that is the case with my trip to UofChicago. > Caro...good to hear from you. I wish your update were a bit brighter. Are you managing to move through the days ok? > Glad you're back w/us. > Mama-Sher, age 69. IPF 3-06, OR. > Don't fret about tomorrow, God is already there! > > Glad to be back > > > Hi all, > > OMG, I have missed you guys so much!! My PC has been down and I have > been unable to post. I have tons of emails to go through!! LOL!! > > Well, I will give you all an update on my end of this disease -- > > My pulmo FINALLY came back into the country. I went to see him on > March 31. He told me the diagnosis, which I already knew was UIP. He > said, " Unfortunately, you have the worst one and there is no > medication to treat the disease. " (I already knew that, too.) Then > he said, I have rheumatoid arthritis, which I didn't know, and he > thinks that is what caused the UIP in the first place. He told me I > have to be on prednisone 30 mg a day for the rest of my life (unless > he increases it). He started me on Imuran 50 mg a day twice a day > forever, too. Then he said he wants me to take Os-Cal D twice a > day. Stay on the Advair 250/50, the Singulair 10 a day, the > albuterol inhaler p.r.n., the Xopenex nebs p.r.n., and the Rhinocort > Aqua daily. Then he said if I wanted to I could get a second opinion > because someone else may know something knew that he did not. I told > him he WAS my second opinion cuz my family doc had already told me I > had IPF but he didn't know which one. Also he told me that I have to > have a CBC and liver function tests every 4 weeks for the rest of my > life because the Imuran can make your white count drop drastically or > you liver can shut down. He said he wants to watch me very closely. > Finally, he decided on sending me to the University of Alabama in > Birmingham and the nurse called me today with an appointment for June > 17. She said they will send me a welcome packet with more info on > what to do. Also, she said that I will have to have another PFT when > I get there before I see the doc and also ABGs, because even though I > had them in December, they want to get their own. Meanwhile, a week > ago my back went out again. I can tolerate it standing up, but when > I sit down, or lie down it is horrible. I can barely get in and out > of the car to go anywhere because I can't twist around. I still have > some Lorcet left from the lung biopsy so I have been taking those for > the back pain. Last time it went out in December 2006, they said I > had degenerative disk disease with osteoarthritis and sacroiliitis. > They sent me to physical therapy for 3 weeks. I found the sheet of > the back exercises they gave me and I have been trying to do them, > but it is so painful, I am not getting much done. This time, though, > the pain is not only in my back. It is radiating down my right leg > and every time I cough (which you all know is very often), it is like > knife-stabbing in my lower back and then shoots down my leg again. I > probably should go to the ER but I don't want to go. I have just > been sitting on a heating pad whenever I absolutely have to sit. > Even when I lie down in the bed, I can't even get comfortable. It > really sucks. Oh yeah, I almost forgot. I asked the pulmo, " So, > what am I looking at, a year maybe? " He couldn't really answer that. > He said it is bad, but the good thing is in December, I still had 68% > lung function. So I am still just taking it one day at a time. > > I am really so sad to hear about . She will really be missed. > > Caro > > > > > > > > > Caro > Asthma 1976,Osteoarthritis 2002, COPD 02/06, IPF 08/07, UIP 01/08 > Mississippi > > --------------------------------- > You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2008 Report Share Posted April 4, 2008 Caro...another reason for people to have a colonoscopy! You can't tell what's there until you have one. When I finally did, about 10 years ago, Dr. found 2 polyps that could have turned into cancer. Now I go every 4 years. Dr. still finds polyps but the 'ok' kind. As for me, I'd been pretty stable for the two years since I was Dx. and then last month had a progression in the disease....I'm on O2, which helps. I should have been on it before this. Also O2 at night which is new for me. Still deal w/fatigue but I'm doing ok. Sorry your grandpa died. Were you close to him? Hoping your back eases up. Have you ever had trouble with Sciatica? Sounds like what you describe. Take care. Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there! Glad to be back Hi all,OMG, I have missed you guys so much!! My PC has been down and I have been unable to post. I have tons of emails to go through!! LOL!!Well, I will give you all an update on my end of this disease -- My pulmo FINALLY came back into the country. I went to see him on March 31. He told me the diagnosis, which I already knew was UIP. He said, "Unfortunately, you have the worst one and there is no medication to treat the disease." (I already knew that, too.) Then he said, I have rheumatoid arthritis, which I didn't know, and he thinks that is what caused the UIP in the first place. He told me I have to be on prednisone 30 mg a day for the rest of my life (unless he increases it). He started me on Imuran 50 mg a day twice a day forever, too. Then he said he wants me to take Os-Cal D twice a day. Stay on the Advair 250/50, the Singulair 10 a day, the albuterol inhaler p.r.n., the Xopenex nebs p.r.n., and the Rhinocort Aqua daily. Then he said if I wanted to I could get a second opinion because someone else may know something knew that he did not. I told him he WAS my second opinion cuz my family doc had already told me I had IPF but he didn't know which one. Also he told me that I have to have a CBC and liver function tests every 4 weeks for the rest of my life because the Imuran can make your white count drop drastically or you liver can shut down. He said he wants to watch me very closely. Finally, he decided on sending me to the University of Alabama in Birmingham and the nurse called me today with an appointment for June 17. She said they will send me a welcome packet with more info on what to do. Also, she said that I will have to have another PFT when I get there before I see the doc and also ABGs, because even though I had them in December, they want to get their own. Meanwhile, a week ago my back went out again. I can tolerate it standing up, but when I sit down, or lie down it is horrible. I can barely get in and out of the car to go anywhere because I can't twist around. I still have some Lorcet left from the lung biopsy so I have been taking those for the back pain. Last time it went out in December 2006, they said I had degenerative disk disease with osteoarthritis and sacroiliitis. They sent me to physical therapy for 3 weeks. I found the sheet of the back exercises they gave me and I have been trying to do them, but it is so painful, I am not getting much done. This time, though, the pain is not only in my back. It is radiating down my right leg and every time I cough (which you all know is very often), it is like knife-stabbing in my lower back and then shoots down my leg again. I probably should go to the ER but I don't want to go. I have just been sitting on a heating pad whenever I absolutely have to sit. Even when I lie down in the bed, I can't even get comfortable. It really sucks. Oh yeah, I almost forgot. I asked the pulmo, "So, what am I looking at, a year maybe?" He couldn't really answer that. He said it is bad, but the good thing is in December, I still had 68% lung function. So I am still just taking it one day at a time.I am really so sad to hear about . She will really be missed.Caro CaroAsthma 1976,Osteoarthritis 2002, COPD 02/06, IPF 08/07, UIP 01/08Mississippi You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2008 Report Share Posted April 4, 2008 Caro, Rheumatoid Arthritis indeed could be the cause of your fibrosis. Have you seen a Rheumatologist. There are alternatives to Imuran, if it does not work for you. Perhaps when you get to the University of Alabama, they will be able to talk to you more about that. For me, having a Rheumatologist treating the Lupus, etc. kept the fibrosis stable off and on. Do you think that maybe the RA has something to do with the back pain. There is just nothing worse. I get the back, butt and leg pain. But, there are excersizes that I can do to work it out. Sometimes takes days and I am not happy! >> Hi all,> > OMG, I have missed you guys so much!! My PC has been down and I have > been unable to post. I have tons of emails to go through!! LOL!!> > Well, I will give you all an update on my end of this disease -- > > My pulmo FINALLY came back into the country. I went to see him on > March 31. He told me the diagnosis, which I already knew was UIP. He > said, "Unfortunately, you have the worst one and there is no > medication to treat the disease." (I already knew that, too.) Then > he said, I have rheumatoid arthritis, which I didn't know, and he > thinks that is what caused the UIP in the first place. He told me I > have to be on prednisone 30 mg a day for the rest of my life (unless > he increases it). He started me on Imuran 50 mg a day twice a day > forever, too. Then he said he wants me to take Os-Cal D twice a > day. Stay on the Advair 250/50, the Singulair 10 a day, the > albuterol inhaler p.r.n., the Xopenex nebs p.r.n., and the Rhinocort > Aqua daily. Then he said if I wanted to I could get a second opinion > because someone else may know something knew that he did not. I told > him he WAS my second opinion cuz my family doc had already told me I > had IPF but he didn't know which one. Also he told me that I have to > have a CBC and liver function tests every 4 weeks for the rest of my > life because the Imuran can make your white count drop drastically or > you liver can shut down. He said he wants to watch me very closely. > Finally, he decided on sending me to the University of Alabama in > Birmingham and the nurse called me today with an appointment for June > 17. She said they will send me a welcome packet with more info on > what to do. Also, she said that I will have to have another PFT when > I get there before I see the doc and also ABGs, because even though I > had them in December, they want to get their own. Meanwhile, a week > ago my back went out again. I can tolerate it standing up, but when > I sit down, or lie down it is horrible. I can barely get in and out > of the car to go anywhere because I can't twist around. I still have > some Lorcet left from the lung biopsy so I have been taking those for > the back pain. Last time it went out in December 2006, they said I > had degenerative disk disease with osteoarthritis and sacroiliitis. > They sent me to physical therapy for 3 weeks. I found the sheet of > the back exercises they gave me and I have been trying to do them, > but it is so painful, I am not getting much done. This time, though, > the pain is not only in my back. It is radiating down my right leg > and every time I cough (which you all know is very often), it is like > knife-stabbing in my lower back and then shoots down my leg again. I > probably should go to the ER but I don't want to go. I have just > been sitting on a heating pad whenever I absolutely have to sit. > Even when I lie down in the bed, I can't even get comfortable. It > really sucks. Oh yeah, I almost forgot. I asked the pulmo, "So, > what am I looking at, a year maybe?" He couldn't really answer that. > He said it is bad, but the good thing is in December, I still had 68% > lung function. So I am still just taking it one day at a time.> > I am really so sad to hear about . She will really be missed.> > Caro> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2008 Report Share Posted April 4, 2008 Uh oh, I hit the wrong button....I wasn't finished. Glad you are back, Caro. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16> >> > Hi all,> >> > OMG, I have missed you guys so much!! My PC has been down and I have> > been unable to post. I have tons of emails to go through!! LOL!!> >> > Well, I will give you all an update on my end of this disease --> >> > My pulmo FINALLY came back into the country. I went to see him on> > March 31. He told me the diagnosis, which I already knew was UIP. He> > said, "Unfortunately, you have the worst one and there is no> > medication to treat the disease." (I already knew that, too.) Then> > he said, I have rheumatoid arthritis, which I didn't know, and he> > thinks that is what caused the UIP in the first place. He told me I> > have to be on prednisone 30 mg a day for the rest of my life (unless> > he increases it). He started me on Imuran 50 mg a day twice a day> > forever, too. Then he said he wants me to take Os-Cal D twice a> > day. Stay on the Advair 250/50, the Singulair 10 a day, the> > albuterol inhaler p.r.n., the Xopenex nebs p.r.n., and the Rhinocort> > Aqua daily. Then he said if I wanted to I could get a second opinion> > because someone else may know something knew that he did not. I told> > him he WAS my second opinion cuz my family doc had already told me I> > had IPF but he didn't know which one. Also he told me that I have to> > have a CBC and liver function tests every 4 weeks for the rest of my> > life because the Imuran can make your white count drop drastically or> > you liver can shut down. He said he wants to watch me very closely.> > Finally, he decided on sending me to the University of Alabama in> > Birmingham and the nurse called me today with an appointment for June> > 17. She said they will send me a welcome packet with more info on> > what to do. Also, she said that I will have to have another PFT when> > I get there before I see the doc and also ABGs, because even though I> > had them in December, they want to get their own. Meanwhile, a week> > ago my back went out again. I can tolerate it standing up, but when> > I sit down, or lie down it is horrible. I can barely get in and out> > of the car to go anywhere because I can't twist around. I still have> > some Lorcet left from the lung biopsy so I have been taking those for> > the back pain. Last time it went out in December 2006, they said I> > had degenerative disk disease with osteoarthritis and sacroiliitis.> > They sent me to physical therapy for 3 weeks. I found the sheet of> > the back exercises they gave me and I have been trying to do them,> > but it is so painful, I am not getting much done. This time, though,> > the pain is not only in my back. It is radiating down my right leg> > and every time I cough (which you all know is very often), it is like> > knife-stabbing in my lower back and then shoots down my leg again. I> > probably should go to the ER but I don't want to go. I have just> > been sitting on a heating pad whenever I absolutely have to sit.> > Even when I lie down in the bed, I can't even get comfortable. It> > really sucks. Oh yeah, I almost forgot. I asked the pulmo, "So,> > what am I looking at, a year maybe?" He couldn't really answer that.> > He said it is bad, but the good thing is in December, I still had 68%> > lung function. So I am still just taking it one day at a time.> >> > I am really so sad to hear about . She will really be missed.> >> > Caro> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2008 Report Share Posted April 6, 2008 Thanks Joyce!! I haven't been to a rheumatologist yet, but that is a thought. I probably need to. My pulmo's wife is Internal Medicine doc and I have an appointment to see her on April 16. My Pap smear is about 3 years overdue and I have only had 1 mammogram in my life and that was about 4 years ago, but it was negative. I should probably ask her about that when I go. I don't have another appointment with pulmo until April 30. CaroJoyce wrote: Uh oh, I hit the wrong button....I wasn't finished. Glad you are back, Caro. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16> >> > Hi all,> >> > OMG, I have missed you guys so much!! My PC has been down and I have> > been unable to post. I have tons of emails to go through!! LOL!!> >> > Well, I will give you all an update on my end of this disease --> >> > My pulmo FINALLY came back into the country. I went to see him on> > March 31. He told me the diagnosis, which I already knew was UIP. He> > said, "Unfortunately, you have the worst one and there is no> > medication to treat the disease." (I already knew that, too.) Then> > he said, I have rheumatoid arthritis, which I didn't know, and he> > thinks that is what caused the UIP in the first place. He told me I> > have to be on prednisone 30 mg a day for the rest of my life (unless> > he increases it). He started me on Imuran 50 mg a day twice a day> > forever, too. Then he said he wants me to take Os-Cal D twice a> > day. Stay on the Advair 250/50, the Singulair 10 a day, the> > albuterol inhaler p.r.n., the Xopenex nebs p.r.n., and the Rhinocort> > Aqua daily. Then he said if I wanted to I could get a second opinion> > because someone else may know something knew that he did not. I told> > him he WAS my second opinion cuz my family doc had already told me I> > had IPF but he didn't know which one. Also he told me that I have to> > have a CBC and liver function tests every 4 weeks for the rest of my> > life because the Imuran can make your white count drop drastically or> > you liver can shut down. He said he wants to watch me very closely.> > Finally, he decided on sending me to the University of Alabama in> > Birmingham and the nurse called me today with an appointment for June> > 17. She said they will send me a welcome packet with more info on> > what to do. Also, she said that I will have to have another PFT when> > I get there before I see the doc and also ABGs, because even though I> > had them in December, they want to get their own. Meanwhile, a week> > ago my back went out again. I can tolerate it standing up, but when> > I sit down, or lie down it is horrible. I can barely get in and out> > of the car to go anywhere because I can't twist around. I still have> > some Lorcet left from the lung biopsy so I have been taking those for> > the back pain. Last time it went out in December 2006, they said I> > had degenerative disk disease with osteoarthritis and sacroiliitis.> > They sent me to physical therapy for 3 weeks. I found the sheet of> > the back exercises they gave me and I have been trying to do them,> > but it is so painful, I am not getting much done. This time, though,> > the pain is not only in my back. It is radiating down my right leg> > and every time I cough (which you all know is very often), it is like> > knife-stabbing in my lower back and then shoots down my leg again. I> > probably should go to the ER but I don't want to go. I have just> > been sitting on a heating pad whenever I absolutely have to sit.> > Even when I lie down in the bed, I can't even get comfortable. It> > really sucks. Oh yeah, I almost forgot. I asked the pulmo, "So,> > what am I looking at, a year maybe?" He couldn't really answer that.> > He said it is bad, but the good thing is in December, I still had 68%> > lung function. So I am still just taking it one day at a time.> >> > I am really so sad to hear about . She will really be missed.> >> > Caro> >> CaroAsthma 1976,Osteoarthritis 2002, COPD 02/06, IPF 08/07, UIP 01/08Mississippi You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2008 Report Share Posted April 6, 2008 I am excited about it, but scared at the same time, because of the unknown, I guess!! I hope you do well with your trip to Chicago. I know when I go to Birmingham I want to find out anything and everything I can possible find out about this horrible disease that is slowly but surely sucking my life away!! I am supposed to see Dr. Joao Deandrade (nurse pronounced it "DeAndretti.") She said she knew for sure I would have to have PFTs and ABGs performed again. I think they will do more, though. I have never even had a 6-minute walk done yet. I feel fortunate, still, though, as I am not yet on O2 and some of you have FEV-1 of 37%. Mine was 86% in August 2007, and in December 2007, it was 68%. By the time I get there in June, that would have been another 6 months. I am hoping it has not dropped another 20%. I will definitely be counting down the days until my appointment, though. The nurse said they will be sending me a "welcome packet" with map directions, and instructions on what I need to expect, etc. I will definitely be checking the mail everyday now!! CaroBruce Moreland wrote: CaroGet excited about Birmingham because you're going to be with peoplethere who just deal with PF and not other lung diseases. Which doctorare you scheduled with? Just think that you'll get a complete review ofeverything and then all options laid out for you. Prepare all yourquestions and concerns. I know it sounds weird to say get excited aboutany medical appointment or hospital but I just think the thought of theabundance of knowledge there is something to look forward to. I knowwith the back pain its hard to look forward to anything. But, I can tellyou, I know Wednesday in Chicago is going to be a very long day for mebut I really do look forward to either getting all my diagnosesconfirmed or learning anything additional they might have to offer. Imay be guessing way wrong but I just figure the combined doctors at UABwill have seen about 500 times as many patients with PF as your localpulmonologist (maybe more). I figure that is the case with my trip toUofChicago.> Caro...good to hear from you. I wish your update were a bit brighter.Are you managing to move through the days ok?> Glad you're back w/us.> Mama-Sher, age 69. IPF 3-06, OR.> Don't fret about tomorrow, God is already there!>> Glad to be back>>> Hi all,>> OMG, I have missed you guys so much!! My PC has been down and I have> been unable to post. I have tons of emails to go through!! LOL!!>> Well, I will give you all an update on my end of this disease -->> My pulmo FINALLY came back into the country. I went to see him on> March 31. He told me the diagnosis, which I already knew was UIP. He> said, "Unfortunately, you have the worst one and there is no> medication to treat the disease." (I already knew that, too.) Then> he said, I have rheumatoid arthritis, which I didn't know, and he> thinks that is what caused the UIP in the first place. He told me I> have to be on prednisone 30 mg a day for the rest of my life (unless> he increases it). He started me on Imuran 50 mg a day twice a day> forever, too. Then he said he wants me to take Os-Cal D twice a> day. Stay on the Advair 250/50, the Singulair 10 a day, the> albuterol inhaler p.r.n., the Xopenex nebs p.r.n., and the Rhinocort> Aqua daily. Then he said if I wanted to I could get a second opinion> because someone else may know something knew that he did not. I told> him he WAS my second opinion cuz my family doc had already told me I> had IPF but he didn't know which one. Also he told me that I have to> have a CBC and liver function tests every 4 weeks for the rest of my> life because the Imuran can make your white count drop drastically or> you liver can shut down. He said he wants to watch me very closely.> Finally, he decided on sending me to the University of Alabama in> Birmingham and the nurse called me today with an appointment for June> 17. She said they will send me a welcome packet with more info on> what to do. Also, she said that I will have to have another PFT when> I get there before I see the doc and also ABGs, because even though I> had them in December, they want to get their own. Meanwhile, a week> ago my back went out again. I can tolerate it standing up, but when> I sit down, or lie down it is horrible. I can barely get in and out> of the car to go anywhere because I can't twist around. I still have> some Lorcet left from the lung biopsy so I have been taking those for> the back pain. Last time it went out in December 2006, they said I> had degenerative disk disease with osteoarthritis and sacroiliitis.> They sent me to physical therapy for 3 weeks. I found the sheet of> the back exercises they gave me and I have been trying to do them,> but it is so painful, I am not getting much done. This time, though,> the pain is not only in my back. It is radiating down my right leg> and every time I cough (which you all know is very often), it is like> knife-stabbing in my lower back and then shoots down my leg again. I> probably should go to the ER but I don't want to go. I have just> been sitting on a heating pad whenever I absolutely have to sit.> Even when I lie down in the bed, I can't even get comfortable. It> really sucks. Oh yeah, I almost forgot. I asked the pulmo, "So,> what am I looking at, a year maybe?" He couldn't really answer that.> He said it is bad, but the good thing is in December, I still had 68%> lung function. So I am still just taking it one day at a time.>> I am really so sad to hear about . She will really be missed.>> Caro>>>>>>>>> Caro> Asthma 1976,Osteoarthritis 2002, COPD 02/06, IPF 08/07, UIP 01/08> Mississippi>> ---------------------------------> You rock. That's why Blockbuster's offering you one month ofBlockbuster Total Access, No Cost.>CaroAsthma 1976,Osteoarthritis 2002, COPD 02/06, IPF 08/07, UIP 01/08Mississippi You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. Quote Link to comment Share on other sites More sharing options...
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