Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 Caro... Gee, it sounds like there is a lot expected of you there in rehab. I've been to rehab twice and NEVER had "expectations" put on me. Quite the opposite...do what I can, easy goes it and keep on keepin' on. I'm feeling concerned that you may overdo it Caro if you are doing rehab and home gym both. Do you think you are? About the ABG...I've heard (never had one) that if you request (insist maybe) on a little numbing prior that there isn't much pain. Have you ever done that? What did I miss...what's causing the bruising? Sounds like you NEED to go back to bed! Do take care of you. MamaSher, age 69. IPF 3-06, OR./ Bold NasturtiumsDon't fret about tomorrow, God is already there! Re: BirminghamTo: Breathe-Support@ yahoogroups. comDate: 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...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 Caro... Gee, it sounds like there is a lot expected of you there in rehab. I've been to rehab twice and NEVER had "expectations" put on me. Quite the opposite...do what I can, easy goes it and keep on keepin' on. I'm feeling concerned that you may overdo it Caro if you are doing rehab and home gym both. Do you think you are? About the ABG...I've heard (never had one) that if you request (insist maybe) on a little numbing prior that there isn't much pain. Have you ever done that? What did I miss...what's causing the bruising? Sounds like you NEED to go back to bed! Do take care of you. MamaSher, age 69. IPF 3-06, OR./ Bold NasturtiumsDon't fret about tomorrow, God is already there! Re: BirminghamTo: Breathe-Support@ yahoogroups. comDate: 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...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 Caro... Gee, it sounds like there is a lot expected of you there in rehab. I've been to rehab twice and NEVER had "expectations" put on me. Quite the opposite...do what I can, easy goes it and keep on keepin' on. I'm feeling concerned that you may overdo it Caro if you are doing rehab and home gym both. Do you think you are? About the ABG...I've heard (never had one) that if you request (insist maybe) on a little numbing prior that there isn't much pain. Have you ever done that? What did I miss...what's causing the bruising? Sounds like you NEED to go back to bed! Do take care of you. MamaSher, age 69. IPF 3-06, OR./ Bold NasturtiumsDon't fret about tomorrow, God is already there! Re: BirminghamTo: Breathe-Support@ yahoogroups. comDate: 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...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 I only do the home gym on the days that I don't go to rehab and usually end up taking the weekends off, so I actually only do the home gym 2 days a week and I try not to go over 30 minutes since I do over an hour in the rehab 3 days a week. I am really a little skiddish after the heart scare yesterday. Having crappy lungs is bad enough, but a bum heart, too, is really scary to me. Even knowing I have the bad lungs I don't FEEL like I may kick the bucket today or even the next day, but with the heart, it could be any second and that is pretty scary to me. I should have requested numbing medicine. They actually gave it to me last time and that is probably why I didn't feel anything. Believe me. I will ALWAYS request it from now on. I thought getting veins pricked was bad but that is nothing compared to having an artery punctured!! It felt like she was trying to dig through all the way through my wrist!! She kept apologizing and I kinda felt bad for her cuz she felt bad for me, but it was just a bite your lip and bear the pain type of deal and that was all I could do. Kept saying, don't worry about it, it's okay, when actually it hurt like hell!! I am taking your advice, though, and I am trying not to overdo. Is hard sometimes, especially cuz I want to lose this 20 pounds SOOOOO bad!!CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi From: Jane <jjarrettoptilink (DOT) us>Subject: Re: BirminghamTo: Breathe-Support@ yahoogroups. comDate: 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...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 I only do the home gym on the days that I don't go to rehab and usually end up taking the weekends off, so I actually only do the home gym 2 days a week and I try not to go over 30 minutes since I do over an hour in the rehab 3 days a week. I am really a little skiddish after the heart scare yesterday. Having crappy lungs is bad enough, but a bum heart, too, is really scary to me. Even knowing I have the bad lungs I don't FEEL like I may kick the bucket today or even the next day, but with the heart, it could be any second and that is pretty scary to me. I should have requested numbing medicine. They actually gave it to me last time and that is probably why I didn't feel anything. Believe me. I will ALWAYS request it from now on. I thought getting veins pricked was bad but that is nothing compared to having an artery punctured!! It felt like she was trying to dig through all the way through my wrist!! She kept apologizing and I kinda felt bad for her cuz she felt bad for me, but it was just a bite your lip and bear the pain type of deal and that was all I could do. Kept saying, don't worry about it, it's okay, when actually it hurt like hell!! I am taking your advice, though, and I am trying not to overdo. Is hard sometimes, especially cuz I want to lose this 20 pounds SOOOOO bad!!CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi From: Jane <jjarrettoptilink (DOT) us>Subject: Re: BirminghamTo: Breathe-Support@ yahoogroups. comDate: 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...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 I only do the home gym on the days that I don't go to rehab and usually end up taking the weekends off, so I actually only do the home gym 2 days a week and I try not to go over 30 minutes since I do over an hour in the rehab 3 days a week. I am really a little skiddish after the heart scare yesterday. Having crappy lungs is bad enough, but a bum heart, too, is really scary to me. Even knowing I have the bad lungs I don't FEEL like I may kick the bucket today or even the next day, but with the heart, it could be any second and that is pretty scary to me. I should have requested numbing medicine. They actually gave it to me last time and that is probably why I didn't feel anything. Believe me. I will ALWAYS request it from now on. I thought getting veins pricked was bad but that is nothing compared to having an artery punctured!! It felt like she was trying to dig through all the way through my wrist!! She kept apologizing and I kinda felt bad for her cuz she felt bad for me, but it was just a bite your lip and bear the pain type of deal and that was all I could do. Kept saying, don't worry about it, it's okay, when actually it hurt like hell!! I am taking your advice, though, and I am trying not to overdo. Is hard sometimes, especially cuz I want to lose this 20 pounds SOOOOO bad!!CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi From: Jane <jjarrettoptilink (DOT) us>Subject: Re: BirminghamTo: Breathe-Support@ yahoogroups. comDate: 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...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 Caro... be glad it's only 20 pounds! I won't even tell you what I need to lose. But a pound is hard to lose if it's not many to go or very many to go! Hang in there. MamaSher, age 69. IPF 3-06, OR./ Bold NasturtiumsDon't fret about tomorrow, God is already there! Re: BirminghamTo: Breathe-Support@ yahoogroups. comDate: 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...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 Caro... be glad it's only 20 pounds! I won't even tell you what I need to lose. But a pound is hard to lose if it's not many to go or very many to go! Hang in there. MamaSher, age 69. IPF 3-06, OR./ Bold NasturtiumsDon't fret about tomorrow, God is already there! Re: BirminghamTo: Breathe-Support@ yahoogroups. comDate: 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...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 Actually I would like to lose 30, but the doc said 20, so if I get the 20 off, I will go from there and keep trying, I guess. Right now I would be tickled pink just to get the 20 off!!CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi From: Jane <jjarrettoptilink (DOT) us>Subject: Re: BirminghamTo: Breathe-Support@ yahoogroups. comDate: 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...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 Actually I would like to lose 30, but the doc said 20, so if I get the 20 off, I will go from there and keep trying, I guess. Right now I would be tickled pink just to get the 20 off!!CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi From: Jane <jjarrettoptilink (DOT) us>Subject: Re: BirminghamTo: Breathe-Support@ yahoogroups. comDate: 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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