Guest guest Posted December 23, 2009 Report Share Posted December 23, 2009 ... I can just "hear" your determination! Keep on keepin' on girl. MamaSher; IPF 2006, NSIP, PH 2009, OR.Don't fret about tomorrow, God is already there! From: worth Sent: Wednesday, December 23, 2009 7:48 AM To: Breath Support Subject: Doctor Visit and PFTs Hi everyone, I had my 3 month follow-up with my pulmo doc on Monday. My PFT was terrible, my DLCO dropped from 51% in Aug to 42%. I wasn't even able to complete the TLC part of the test at all. I just couldn't blow the air out without coughing and the RT made me try like 4 times! She wasn't very nice either, you'd think the test was all about them. Like why do they get so upset if you can't do it. My doctor said not to worry about it. I have noticed since Dr. Raghu lowered my prednisone to 15mg in October that my breathlessness has increased because I have to keep turning up my O2. I was at 3 lpm for exertion and now I'm at 4 lpm. My 6-min walk was done with O2 on 3 lpm and on completion I was at 89%.So my pulmo doc and I decided to increase my prednisone to 20mg and see if I improve and I'll go back in a month for another PFT. He is starting me at 30mg for one week, then 25mg for a week and then the 20mg. I started the 30mg yesterday and already feel a difference. I might just be one of those that prednisone helps. My MCV blood count has been elevated for 2 months now. He said its probably due to the Azathioprine but ordered a Vitamin B-12 and Folate blood check. My doc said he talked to Dr. Raghu about the importance of me getting my weight down so I'll be eligible for the transplant (which I reallly want) and scheduled me to see a Dietician, saw her yesterday and she didn't tell me much that I already knew. But I am taking it much more serious now and am not making but one goodie for the kids this Christmas. They are young adults and are all on board with me too. My doc said he was going to be thinking of me at Christmas and eat less himself. I have such a wonderful doctor! I gave him a PFF brochure and a bracelet and he said he is going to make a donation! C_53_Familial IPF_5/09, Washington HOPE doesn't disappoint! No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.722 / Virus Database: 270.14.117/2582 - Release Date: 12/22/09 10:22:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2009 Report Share Posted December 23, 2009 , The female RT at my Pulmo's office is a meany too! Last time I had to do a PFT for her she got mad that I was having such a hard time and couldn't quit coughing. Sometimes I try being overly nice to people like that but that time I just couldn't. She was exceptionally more mean that day. I suggested that maybe she should research IPF symptoms so that she may have a better understanding of why I'm waisting her time with my coughing. She wanted me to take a nebulizer treatment of lidocaine to stop the coughing. She didn't want to hear that it doesn't work for me so I finally gave in and told her " if she was up for waisting more of her time I had all day. " This was my 3rd PFT with her, and my last. I was so upset by the time I got out of there I was nearly in tears. The office staff all know to never schedule me with her again or I will be doing my PFT's else where. Don't be too worried about your DLCO. Mine bounces all over the place from visit to visit. I'm glad the prednisone is helping!Even the smallest of improvements for us is worth celebrating! Merry Christmas! 34 FL IPF dx 1/06 > > Hi everyone, > > I had my 3 month follow-up with my pulmo doc on Monday. My PFT was terrible, my DLCO dropped from 51% in Aug to 42%. I wasn't even able to complete the TLC part of the test at all. I just couldn't blow the air out without coughing and the RT made me try like 4 times! She wasn't very nice either, you'd think the test was all about them. Like why do they get so upset if you can't do it. My doctor said not to worry about it. I have noticed since Dr. Raghu lowered my prednisone to 15mg in October that my breathlessness has increased because I have to keep turning up my O2. I was at 3 lpm for exertion and now I'm at 4 lpm. > My 6-min walk was done with O2 on 3 lpm and on completion I was at 89%.So my pulmo doc and I decided to increase my prednisone to 20mg and see if I improve and I'll go back in a month for another PFT. He is starting me at 30mg for one week, then 25mg for a week and then the 20mg. I started the 30mg yesterday and already feel a difference. I might just be one of those that prednisone helps. > My MCV blood count has been elevated for 2 months now. He said its probably due to the Azathioprine but ordered a Vitamin B-12 and Folate blood check. > My doc said he talked to Dr. Raghu about the importance of me getting my weight down so I'll be eligible for the transplant (which I reallly want) and scheduled me to see a Dietician, saw her yesterday and she didn't tell me much that I already knew. But I am taking it much more serious now and am not making but one goodie for the kids this Christmas. They are young adults and are all on board with me too. My doc said he was going to be thinking of me at Christmas and eat less himself. I have such a wonderful doctor! > I gave him a PFF brochure and a bracelet and he said he is going to make a donation! > > C_53_Familial IPF_5/09, Washington > HOPE doesn't disappoint! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2009 Report Share Posted December 23, 2009 Thanks , I'm not going back to my RT either. She kept explaining to me how to do it and getting all animated, it was insane! My daughter was with me and she said she almost said something to her, like shutup. This was my 2nd PFT with her, the other time she grabbed my chin and said, "keep blowing and blowing and blowing." I tattled to my doc about her and he made a face like he understood. Thank goodness there is another clinic I can go do my PFTs and then see my doc at a separate time. C_53_Familial IPF_5/09, Washington HOPE doesn't disappoint! To: Breathe-Support Sent: Wed, December 23, 2009 9:06:32 PMSubject: Re: Doctor Visit and PFTs ,The female RT at my Pulmo's office is a meany too! Last time I had to do a PFT for her she got mad that I was having such a hard time and couldn't quit coughing. Sometimes I try being overly nice to people like that but that time I just couldn't. She was exceptionally more mean that day. I suggested that maybe she should research IPF symptoms so that she may have a better understanding of why I'm waisting her time with my coughing. She wanted me to take a nebulizer treatment of lidocaine to stop the coughing. She didn't want to hear that it doesn't work for me so I finally gave in and told her "if she was up for waisting more of her time I had all day." This was my 3rd PFT with her, and my last.I was so upset by the time I got out of there I was nearly in tears. The office staff all know to never schedule me with her again or I will be doing my PFT's else where.Don't be too worried about your DLCO. Mine bounces all over the place from visit to visit. I'm glad the prednisone is helping!Even the smallest of improvements for us is worth celebrating!Merry Christmas! 34 FL IPF dx 1/06>> Hi everyone,> > I had my 3 month follow-up with my pulmo doc on Monday. My PFT was terrible, my DLCO dropped from 51% in Aug to 42%. I wasn't even able to complete the TLC part of the test at all. I just couldn't blow the air out without coughing and the RT made me try like 4 times! She wasn't very nice either, you'd think the test was all about them. Like why do they get so upset if you can't do it. My doctor said not to worry about it. I have noticed since Dr. Raghu lowered my prednisone to 15mg in October that my breathlessness has increased because I have to keep turning up my O2. I was at 3 lpm for exertion and now I'm at 4 lpm. > My 6-min walk was done with O2 on 3 lpm and on completion I was at 89%.So my pulmo doc and I decided to increase my prednisone to 20mg and see if I improve and I'll go back in a month for another PFT. He is starting me at 30mg for one week, then 25mg for a week and then the 20mg. I started the 30mg yesterday and already feel a difference. I might just be one of those that prednisone helps. > My MCV blood count has been elevated for 2 months now. He said its probably due to the Azathioprine but ordered a Vitamin B-12 and Folate blood check. > My doc said he talked to Dr. Raghu about the importance of me getting my weight down so I'll be eligible for the transplant (which I reallly want) and scheduled me to see a Dietician, saw her yesterday and she didn't tell me much that I already knew. But I am taking it much more serious now and am not making but one goodie for the kids this Christmas. They are young adults and are all on board with me too. My doc said he was going to be thinking of me at Christmas and eat less himself. I have such a wonderful doctor!> I gave him a PFF brochure and a bracelet and he said he is going to make a donation! > > C_53_Familial IPF_5/09, Washington> HOPE doesn't disappoint!> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2009 Report Share Posted December 23, 2009 Thanks Sher, I appreciate your encouragement and I'm going to try my best. C_53_Familial IPF_5/09, Washington HOPE doesn't disappoint! To: Breathe-Support Sent: Wed, December 23, 2009 10:29:13 AMSubject: Re: Doctor Visit and PFTs ... I can just "hear" your determination! Keep on keepin' on girl. MamaSher; IPF 2006, NSIP, PH 2009, OR.Don't fret about tomorrow, God is already there! From: worth Sent: Wednesday, December 23, 2009 7:48 AM To: Breath Support Subject: Doctor Visit and PFTs Hi everyone, I had my 3 month follow-up with my pulmo doc on Monday. My PFT was terrible, my DLCO dropped from 51% in Aug to 42%. I wasn't even able to complete the TLC part of the test at all. I just couldn't blow the air out without coughing and the RT made me try like 4 times! She wasn't very nice either, you'd think the test was all about them. Like why do they get so upset if you can't do it. My doctor said not to worry about it. I have noticed since Dr.. Raghu lowered my prednisone to 15mg in October that my breathlessness has increased because I have to keep turning up my O2. I was at 3 lpm for exertion and now I'm at 4 lpm. My 6-min walk was done with O2 on 3 lpm and on completion I was at 89%.So my pulmo doc and I decided to increase my prednisone to 20mg and see if I improve and I'll go back in a month for another PFT. He is starting me at 30mg for one week, then 25mg for a week and then the 20mg. I started the 30mg yesterday and already feel a difference. I might just be one of those that prednisone helps. My MCV blood count has been elevated for 2 months now. He said its probably due to the Azathioprine but ordered a Vitamin B-12 and Folate blood check. My doc said he talked to Dr. Raghu about the importance of me getting my weight down so I'll be eligible for the transplant (which I reallly want) and scheduled me to see a Dietician, saw her yesterday and she didn't tell me much that I already knew. But I am taking it much more serious now and am not making but one goodie for the kids this Christmas. They are young adults and are all on board with me too. My doc said he was going to be thinking of me at Christmas and eat less himself. I have such a wonderful doctor! I gave him a PFF brochure and a bracelet and he said he is going to make a donation! C_53_Familial IPF_5/09, Washington HOPE doesn't disappoint! No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.722 / Virus Database: 270.14.117/2582 - Release Date: 12/22/09 10:22:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2009 Report Share Posted December 24, 2009 , Sorry it's taken me so long to respond to this post from yesterday. PLEASE don't be too upset about the decrease in your DLCO. Mine went down dramatically in September. My doctor decided to repeat my pft in two months and in November I was right back where I had been in June. Many people on the board could tell you similar stories. It sounds like your doctor is on top of everything so try to take it one day at a time. I empathize with the weight loss dilemma, it's something I share. I'm down close to 30 pounds since September and for me what's made the difference is exercise. I eat an anti-inflammatory diet heavy on vegetables and fruit (Here's a link to Dr. Weil's food pyramid http://www.drweil.com/drw/u/ART02995/Dr-Weil-Anti-Inflammatory-Food-Pyramid.html this is what I try to follow minus the soy) Generally I try to keep it between 1200 and 1500 calories a day and between that and the exercise I'm losing a bit over a pound a week. And jeers to that RT who tortured you through your pft. I've never had the misfortune of dealing with someone like that. I think perhaps she does not understand the symptoms of pf. Does she think you want to cough? I mean how ridiculous to get angry with someone for coughing?! She's in the wrong line of work for sure. I'm glad you are surrounded by loving supportive family. Have a wonderful Merry Christmas! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breath Support <Breathe-Support >Sent: Wed, December 23, 2009 10:48:30 AMSubject: Doctor Visit and PFTs Hi everyone, I had my 3 month follow-up with my pulmo doc on Monday. My PFT was terrible, my DLCO dropped from 51% in Aug to 42%. I wasn't even able to complete the TLC part of the test at all. I just couldn't blow the air out without coughing and the RT made me try like 4 times! She wasn't very nice either, you'd think the test was all about them. Like why do they get so upset if you can't do it. My doctor said not to worry about it. I have noticed since Dr. Raghu lowered my prednisone to 15mg in October that my breathlessness has increased because I have to keep turning up my O2. I was at 3 lpm for exertion and now I'm at 4 lpm. My 6-min walk was done with O2 on 3 lpm and on completion I was at 89%.So my pulmo doc and I decided to increase my prednisone to 20mg and see if I improve and I'll go back in a month for another PFT. He is starting me at 30mg for one week, then 25mg for a week and then the 20mg. I started the 30mg yesterday and already feel a difference. I might just be one of those that prednisone helps. My MCV blood count has been elevated for 2 months now. He said its probably due to the Azathioprine but ordered a Vitamin B-12 and Folate blood check. My doc said he talked to Dr. Raghu about the importance of me getting my weight down so I'll be eligible for the transplant (which I reallly want) and scheduled me to see a Dietician, saw her yesterday and she didn't tell me much that I already knew. But I am taking it much more serious now and am not making but one goodie for the kids this Christmas. They are young adults and are all on board with me too. My doc said he was going to be thinking of me at Christmas and eat less himself. I have such a wonderful doctor! I gave him a PFF brochure and a bracelet and he said he is going to make a donation! C_53_Familial IPF_5/09, Washington HOPE doesn't disappoint! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2009 Report Share Posted December 24, 2009 , Sorry it's taken me so long to respond to this post from yesterday. PLEASE don't be too upset about the decrease in your DLCO. Mine went down dramatically in September. My doctor decided to repeat my pft in two months and in November I was right back where I had been in June. Many people on the board could tell you similar stories. It sounds like your doctor is on top of everything so try to take it one day at a time. I empathize with the weight loss dilemma, it's something I share. I'm down close to 30 pounds since September and for me what's made the difference is exercise. I eat an anti-inflammatory diet heavy on vegetables and fruit (Here's a link to Dr. Weil's food pyramid http://www.drweil.com/drw/u/ART02995/Dr-Weil-Anti-Inflammatory-Food-Pyramid.html this is what I try to follow minus the soy) Generally I try to keep it between 1200 and 1500 calories a day and between that and the exercise I'm losing a bit over a pound a week. And jeers to that RT who tortured you through your pft. I've never had the misfortune of dealing with someone like that. I think perhaps she does not understand the symptoms of pf. Does she think you want to cough? I mean how ridiculous to get angry with someone for coughing?! She's in the wrong line of work for sure. I'm glad you are surrounded by loving supportive family. Have a wonderful Merry Christmas! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breath Support <Breathe-Support >Sent: Wed, December 23, 2009 10:48:30 AMSubject: Doctor Visit and PFTs Hi everyone, I had my 3 month follow-up with my pulmo doc on Monday. My PFT was terrible, my DLCO dropped from 51% in Aug to 42%. I wasn't even able to complete the TLC part of the test at all. I just couldn't blow the air out without coughing and the RT made me try like 4 times! She wasn't very nice either, you'd think the test was all about them. Like why do they get so upset if you can't do it. My doctor said not to worry about it. I have noticed since Dr. Raghu lowered my prednisone to 15mg in October that my breathlessness has increased because I have to keep turning up my O2. I was at 3 lpm for exertion and now I'm at 4 lpm. My 6-min walk was done with O2 on 3 lpm and on completion I was at 89%.So my pulmo doc and I decided to increase my prednisone to 20mg and see if I improve and I'll go back in a month for another PFT. He is starting me at 30mg for one week, then 25mg for a week and then the 20mg. I started the 30mg yesterday and already feel a difference. I might just be one of those that prednisone helps. My MCV blood count has been elevated for 2 months now. He said its probably due to the Azathioprine but ordered a Vitamin B-12 and Folate blood check. My doc said he talked to Dr. Raghu about the importance of me getting my weight down so I'll be eligible for the transplant (which I reallly want) and scheduled me to see a Dietician, saw her yesterday and she didn't tell me much that I already knew. But I am taking it much more serious now and am not making but one goodie for the kids this Christmas. They are young adults and are all on board with me too. My doc said he was going to be thinking of me at Christmas and eat less himself. I have such a wonderful doctor! I gave him a PFF brochure and a bracelet and he said he is going to make a donation! C_53_Familial IPF_5/09, Washington HOPE doesn't disappoint! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2009 Report Share Posted December 24, 2009 recently there was a "dennis the menace" in which he said something like: Everyone says G-d bless you when you sneeze, but complains when you cough i should have cut it out and saved it Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Doctor Visit and PFTsTo: Breathe-Support Date: Thursday, December 24, 2009, 7:31 AM , Sorry it's taken me so long to respond to this post from yesterday. PLEASE don't be too upset about the decrease in your DLCO. Mine went down dramatically in September. My doctor decided to repeat my pft in two months and in November I was right back where I had been in June. Many people on the board could tell you similar stories. It sounds like your doctor is on top of everything so try to take it one day at a time. I empathize with the weight loss dilemma, it's something I share. I'm down close to 30 pounds since September and for me what's made the difference is exercise. I eat an anti-inflammatory diet heavy on vegetables and fruit (Here's a link to Dr. Weil's food pyramid http://www.drweil. com/drw/u/ ART02995/ Dr-Weil-Anti- Inflammatory- Food-Pyramid. html this is what I try to follow minus the soy) Generally I try to keep it between 1200 and 1500 calories a day and between that and the exercise I'm losing a bit over a pound a week. And jeers to that RT who tortured you through your pft. I've never had the misfortune of dealing with someone like that. I think perhaps she does not understand the symptoms of pf. Does she think you want to cough? I mean how ridiculous to get angry with someone for coughing?! She's in the wrong line of work for sure. I'm glad you are surrounded by loving supportive family. Have a wonderful Merry Christmas! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: worth <hope2thend (AT) yahoo (DOT) com>To: Breath Support <Breathe-Support@ yahoogroups. com>Sent: Wed, December 23, 2009 10:48:30 AMSubject: Doctor Visit and PFTs Hi everyone, I had my 3 month follow-up with my pulmo doc on Monday. My PFT was terrible, my DLCO dropped from 51% in Aug to 42%. I wasn't even able to complete the TLC part of the test at all. I just couldn't blow the air out without coughing and the RT made me try like 4 times! She wasn't very nice either, you'd think the test was all about them. Like why do they get so upset if you can't do it. My doctor said not to worry about it. I have noticed since Dr. Raghu lowered my prednisone to 15mg in October that my breathlessness has increased because I have to keep turning up my O2. I was at 3 lpm for exertion and now I'm at 4 lpm. My 6-min walk was done with O2 on 3 lpm and on completion I was at 89%.So my pulmo doc and I decided to increase my prednisone to 20mg and see if I improve and I'll go back in a month for another PFT. He is starting me at 30mg for one week, then 25mg for a week and then the 20mg. I started the 30mg yesterday and already feel a difference. I might just be one of those that prednisone helps. My MCV blood count has been elevated for 2 months now. He said its probably due to the Azathioprine but ordered a Vitamin B-12 and Folate blood check. My doc said he talked to Dr. Raghu about the importance of me getting my weight down so I'll be eligible for the transplant (which I reallly want) and scheduled me to see a Dietician, saw her yesterday and she didn't tell me much that I already knew. But I am taking it much more serious now and am not making but one goodie for the kids this Christmas. They are young adults and are all on board with me too. My doc said he was going to be thinking of me at Christmas and eat less himself. I have such a wonderful doctor! I gave him a PFF brochure and a bracelet and he said he is going to make a donation! C_53_Familial IPF_5/09, Washington HOPE doesn't disappoint! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2009 Report Share Posted December 24, 2009 , I’m curious about that nebulizer with lidocaine. Did that work? Bob Dopher 67 IPF 04/07 From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of hunnybunnybinky Sent: Thursday, December 24, 2009 12:07 AM To: Breathe-Support Subject: Re: Doctor Visit and PFTs , The female RT at my Pulmo's office is a meany too! Last time I had to do a PFT for her she got mad that I was having such a hard time and couldn't quit coughing. Sometimes I try being overly nice to people like that but that time I just couldn't. She was exceptionally more mean that day. I suggested that maybe she should research IPF symptoms so that she may have a better understanding of why I'm waisting her time with my coughing. She wanted me to take a nebulizer treatment of lidocaine to stop the coughing. She didn't want to hear that it doesn't work for me so I finally gave in and told her " if she was up for waisting more of her time I had all day. " This was my 3rd PFT with her, and my last. I was so upset by the time I got out of there I was nearly in tears. The office staff all know to never schedule me with her again or I will be doing my PFT's else where. Don't be too worried about your DLCO. Mine bounces all over the place from visit to visit. I'm glad the prednisone is helping!Even the smallest of improvements for us is worth celebrating! Merry Christmas! 34 FL IPF dx 1/06 > > Hi everyone, > > I had my 3 month follow-up with my pulmo doc on Monday. My PFT was terrible, my DLCO dropped from 51% in Aug to 42%. I wasn't even able to complete the TLC part of the test at all. I just couldn't blow the air out without coughing and the RT made me try like 4 times! She wasn't very nice either, you'd think the test was all about them. Like why do they get so upset if you can't do it. My doctor said not to worry about it. I have noticed since Dr. Raghu lowered my prednisone to 15mg in October that my breathlessness has increased because I have to keep turning up my O2. I was at 3 lpm for exertion and now I'm at 4 lpm. > My 6-min walk was done with O2 on 3 lpm and on completion I was at 89%.So my pulmo doc and I decided to increase my prednisone to 20mg and see if I improve and I'll go back in a month for another PFT. He is starting me at 30mg for one week, then 25mg for a week and then the 20mg. I started the 30mg yesterday and already feel a difference. I might just be one of those that prednisone helps. > My MCV blood count has been elevated for 2 months now. He said its probably due to the Azathioprine but ordered a Vitamin B-12 and Folate blood check. > My doc said he talked to Dr. Raghu about the importance of me getting my weight down so I'll be eligible for the transplant (which I reallly want) and scheduled me to see a Dietician, saw her yesterday and she didn't tell me much that I already knew. But I am taking it much more serious now and am not making but one goodie for the kids this Christmas. They are young adults and are all on board with me too. My doc said he was going to be thinking of me at Christmas and eat less himself. I have such a wonderful doctor! > I gave him a PFF brochure and a bracelet and he said he is going to make a donation! > > C_53_Familial IPF_5/09, Washington > HOPE doesn't disappoint! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2009 Report Share Posted December 24, 2009 I've never had a tech on the PFT's like that either although Elisa did at the same hospital I got a good one. And, if I can't do part of it, I just can't do it. I'll try a reasonable number of times but I have other problems that making holding it an issue dealing with my esophagus. Some days I can do it all, some days I can't. And when they get more painful, I'll do them less. The only battle I had was on a six minute walk and I didn't accept it. > > , > Sorry it's taken me so long to respond to this post from yesterday. PLEASE don't be too upset about the decrease in your DLCO. Mine went down dramatically in September. My doctor decided to repeat my pft in two months and in November I was right back where I had been in June.  Many people on the board could tell you similar stories. > It sounds like your doctor is on top of everything so try to take it one day at a time. I empathize with the weight loss dilemma, it's something I share. I'm down close to 30 pounds since September and for me what's made the difference is exercise. I eat an anti-inflammatory diet heavy on vegetables and fruit (Here's a link to Dr. Weil's food pyramid http://www.drweil.com/drw/u/ART02995/Dr-Weil-Anti-Inflammatory-Food-Pyra\ mid.html this is what I try to follow minus the soy) > Generally I try to keep it between 1200 and 1500 calories a day and between that and the exercise I'm losing a bit over a pound a week. > > And jeers to that RT who tortured you through your pft. I've never had the misfortune of dealing with someone like that. I think perhaps she does not understand the symptoms of pf. Does she think you want to cough? I mean how ridiculous to get angry with someone for coughing?! She's in the wrong line of work for sure. > > I'm glad you are surrounded by loving supportive family. Have a wonderful Merry Christmas! >  > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 >  >  > > > > > ________________________________ > From: worth hope2thend@... > To: Breath Support Breathe-Support > Sent: Wed, December 23, 2009 10:48:30 AM > Subject: Doctor Visit and PFTs > >  > Hi everyone, > > I had my 3 month follow-up with my pulmo doc on Monday. My PFT was terrible, my DLCO dropped from 51% in Aug to 42%. I wasn't even able to complete the TLC part of the test at all. I just couldn't blow the air out without coughing and the RT made me try like 4 times! She wasn't very nice either, you'd think the test was all about them. Like why do they get so upset if you can't do it. My doctor said not to worry about it. I have noticed since Dr. Raghu lowered my prednisone to 15mg in October that my breathlessness has increased because I have to keep turning up my O2. I was at 3 lpm for exertion and now I'm at 4 lpm. > My 6-min walk was done with O2 on 3 lpm and on completion I was at 89%.So my pulmo doc and I decided to increase my prednisone to 20mg and see if I improve and I'll go back in a month for another PFT. He is starting me at 30mg for one week, then 25mg for a week and then the 20mg. I started the 30mg yesterday and already feel a difference. I might just be one of those that prednisone helps. > My MCV blood count has been elevated for 2 months now. He said its probably due to the Azathioprine but ordered a Vitamin B-12 and Folate blood check. > My doc said he talked to Dr. Raghu about the importance of me getting my weight down so I'll be eligible for the transplant (which I reallly want) and scheduled me to see a Dietician, saw her yesterday and she didn't tell me much that I already knew. But I am taking it much more serious now and am not making but one goodie for the kids this Christmas. They are young adults and are all on board with me too. My doc said he was going to be thinking of me at Christmas and eat less himself. I have such a wonderful doctor! > I gave him a PFF brochure and a bracelet and he said he is going to make a donation! >  > C_53_Familial IPF_5/09, Washington > HOPE doesn't disappoint! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2009 Report Share Posted December 24, 2009 Bob, LOL! The only thing the lidocaine nebulizer did was irritate her even more. Lidocaine does not work for me at all it makes me cough more. Secretly, I enjoyed torturing her! > > > > Hi everyone, > > > > I had my 3 month follow-up with my pulmo doc on Monday. My PFT was > terrible, my DLCO dropped from 51% in Aug to 42%. I wasn't even able to > complete the TLC part of the test at all. I just couldn't blow the air out > without coughing and the RT made me try like 4 times! She wasn't very nice > either, you'd think the test was all about them. Like why do they get so > upset if you can't do it. My doctor said not to worry about it. I have > noticed since Dr. Raghu lowered my prednisone to 15mg in October that my > breathlessness has increased because I have to keep turning up my O2. I was > at 3 lpm for exertion and now I'm at 4 lpm. > > My 6-min walk was done with O2 on 3 lpm and on completion I was at 89%.So > my pulmo doc and I decided to increase my prednisone to 20mg and see if I > improve and I'll go back in a month for another PFT. He is starting me at > 30mg for one week, then 25mg for a week and then the 20mg. I started the > 30mg yesterday and already feel a difference. I might just be one of those > that prednisone helps. > > My MCV blood count has been elevated for 2 months now. He said its > probably due to the Azathioprine but ordered a Vitamin B-12 and Folate blood > check. > > My doc said he talked to Dr. Raghu about the importance of me getting my > weight down so I'll be eligible for the transplant (which I reallly want) > and scheduled me to see a Dietician, saw her yesterday and she didn't tell > me much that I already knew. But I am taking it much more serious now and am > not making but one goodie for the kids this Christmas. They are young adults > and are all on board with me too. My doc said he was going to be thinking of > me at Christmas and eat less himself. I have such a wonderful doctor! > > I gave him a PFF brochure and a bracelet and he said he is going to make a > donation! > > > > C_53_Familial IPF_5/09, Washington > > HOPE doesn't disappoint! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2009 Report Share Posted December 24, 2009 Darn! I was so hoping for a miracle… So far I’ve been lucky enough to have patient techs for the PFTs. With my short temper, not sure what I’d do if someone gave me grief… Bob D From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of hunnybunnybinky Sent: Thursday, December 24, 2009 5:41 PM To: Breathe-Support Subject: Re: Doctor Visit and PFTs Bob, LOL! The only thing the lidocaine nebulizer did was irritate her even more. Lidocaine does not work for me at all it makes me cough more. Secretly, I enjoyed torturing her! > > > > Hi everyone, > > > > I had my 3 month follow-up with my pulmo doc on Monday. My PFT was > terrible, my DLCO dropped from 51% in Aug to 42%. I wasn't even able to > complete the TLC part of the test at all. I just couldn't blow the air out > without coughing and the RT made me try like 4 times! She wasn't very nice > either, you'd think the test was all about them. Like why do they get so > upset if you can't do it. My doctor said not to worry about it. I have > noticed since Dr. Raghu lowered my prednisone to 15mg in October that my > breathlessness has increased because I have to keep turning up my O2. I was > at 3 lpm for exertion and now I'm at 4 lpm. > > My 6-min walk was done with O2 on 3 lpm and on completion I was at 89%.So > my pulmo doc and I decided to increase my prednisone to 20mg and see if I > improve and I'll go back in a month for another PFT. He is starting me at > 30mg for one week, then 25mg for a week and then the 20mg. I started the > 30mg yesterday and already feel a difference. I might just be one of those > that prednisone helps. > > My MCV blood count has been elevated for 2 months now. He said its > probably due to the Azathioprine but ordered a Vitamin B-12 and Folate blood > check. > > My doc said he talked to Dr. Raghu about the importance of me getting my > weight down so I'll be eligible for the transplant (which I reallly want) > and scheduled me to see a Dietician, saw her yesterday and she didn't tell > me much that I already knew. But I am taking it much more serious now and am > not making but one goodie for the kids this Christmas. They are young adults > and are all on board with me too. My doc said he was going to be thinking of > me at Christmas and eat less himself. I have such a wonderful doctor! > > I gave him a PFF brochure and a bracelet and he said he is going to make a > donation! > > > > C_53_Familial IPF_5/09, Washington > > HOPE doesn't disappoint! > > > Quote Link to comment Share on other sites More sharing options...
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