Guest guest Posted August 19, 2009 Report Share Posted August 19, 2009 Good Morning everyone! I am a newcomer to this group having joined only a few weeks ago and have not posted before...just been lurking and trying to learn all I can about PF. I had a lung biopsy in June to determine what type of PF I have. I was diagnosed in 1999...so that should give some of you some hope. My lung capacity has been declining by about 3% a year since that time. I went to National Jewish in 1999, but they did not recommend a lung biopsy at that time. Things have changed in 10 years and now docs are recommending biopsies sooner than later. Anyway, I did not recover from the lung biopsy in a few days, as some of you have reported. I am back to work, but it took me the full 6 weeks to " catch my breath " . I thought something was wrong until I read that others on the group had had the same experience. My PF is believed to be genetic in origin as my Mom and 1st. cousin died from it and my aunt (my Mom's sister) has had it for over 10 years. She is on oxygen 24/7 but is 73 years old and has " aged out " with regard to a lung transplant. I have had much the same ecperiences as some of you have reported with Pulmonary docs who do not know much about this disease or how to treat it. I had been going to the same guy since 1998, but following the lung biopsy I changed to someone else because the first Pulmonary doc wanted to start me on steriods and I wanted to explore my options. My biopsy report was a disappointment because it read: " it could be this or it could be that " and the sample they took was end-stage PF. I called the Coalition for PF and they gave me names of docs in NYC and Mass. I made an appt with Dr. Padilla at Mt. Sinai because she could see me the quickest. Later, I find out that if I am to get a lung transplant eval I would have to go to Columbia Presbyterian as my insurance company will not pay for an eval at Mt. Sinai as it is not a Center of Excellence. I gathered and mailed all my medical records to Dr. Padilla and am waiting for her response. She did order BW...my PFT, CXR, and HRCT were up to date, but she wanted a history. I really don't know if I am still alive because I was diagnosed earlier than most or because the disease is progressing slowly. The wording about " end-stage " in the path report kind of knocked my socks off and I felt that I needed to be seen my someone who is more of an expert in this field than who I had been going to. The basis for his steriod Tx was pulled from the International Concensus of Opinion for Tx of PF written in 1999! While there has not been another consensus written, there have been clinical trials and much more published about Tx options since 1999. But it is my understanding that even the " experts " disagree. Dr. Padilla recommended NAC, but she told me not to get it at GNC because of quality control issues. She recommended the liquid, which I am reading on this group in difficult to tolerate or that I obtain it from a Canadian Source who gets it from Germany. My insurance will pay for the liquid but not the tabs from Canada. Does anyone have a source for tabs that costs less than $1.00/pill for 900 mg? She wants me to take 3600 mg per day which would cost me $120.00 per month. I guess it's too late for a " long story short " (LOL), but I wanted to introduce myself and thank everyone for posting such good info on the group. Like others, Im still in the " panic stage " following the lung bisopy and the prognosis. I watched my Mom die from this disease and that adds to my anixety. I am 61 and had a lot planned for my next 10 years, but have certainly been handed a reality check. I work in mental health so you would think I would have solutions at my finger tips, but when it comes to your own life things look different. My greatest fear is that I will " age out " before I am ill enough to be considered for a lung transplant. I am most grateful for my life up to this point, but can't help but to panic over the future. Additionally, since this appears to be a famillal issue with me, I worry about my children and grandchildren. My insurance company is giving me a hard time over the gentic testing, but I haven't given up yet. Again, thanks to all who share info...I'll keep reading! Sue IPF/1999 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2009 Report Share Posted August 19, 2009 Welcome Sue! I had my biopsy in July and the diagnosis was a mish-mosh of many different things, " could be this could be that " , also. I have been referred to Columbia for an evaluation which Cigna will pay for and I found out yesterday that I got an appointment on Oct.1. I was diagnosed with ILD in June of this year and I don't know if a transplant would be the way to go. I went to see my pulmodude yesterday and he said I'm a great candidate since I have nothing else wrong with me (or so we think); I just need to loose weight. I'm on prednisone 15 mg now which does nothing. I have never heard of NAC - does it help? I use O2 at night 2 lpm and prescribed a portable Helios for exertion. I don't know- I've been feeling so depressed (even though I take Zoloft) since getting the paperwork from Columbia- starting the tests all over again and adding so many more tests- I'm thinking of not going. What is the point?? 5 more years?? More drugs with serious side effects after transplant?? It's funny how I need to loose weight before transplant and then after transplant, drugs make you gain weight LOL. Also was given portable Helios last Thursday. Friday morning I go to fill it and it only lasted a half hour? The tank in less than 2 weeks is empty and I only filled it once??? Anyone with liquid O2 knowledge please advise! Anyway Sue- maybe we will bump into each other at Columbia. I'm happier in person and on O2 LOL nne, 55, ILD 6/09 > > Good Morning everyone! > > I am a newcomer to this group having joined only a few weeks ago and have not posted before...just been lurking and trying to learn all I can about PF. I had a lung biopsy in June to determine what type of PF I have. I was diagnosed in 1999...so that should give some of you some hope. My lung capacity has been declining by about 3% a year since that time. I went to National Jewish in 1999, but they did not recommend a lung biopsy at that time. Things have changed in 10 years and now docs are recommending biopsies sooner than later. Anyway, I did not recover from the lung biopsy in a few days, as some of you have reported. I am back to work, but it took me the full 6 weeks to " catch my breath " . I thought something was wrong until I read that others on the group had had the same experience. My PF is believed to be genetic in origin as my Mom and 1st. cousin died from it and my aunt (my Mom's sister) has had it for over 10 years. She is on oxygen 24/7 but is 73 years old and has " aged out " with regard to a lung transplant. > > I have had much the same ecperiences as some of you have reported with Pulmonary docs who do not know much about this disease or how to treat it. I had been going to the same guy since 1998, but following the lung biopsy I changed to someone else because the first Pulmonary doc wanted to start me on steriods and I wanted to explore my options. My biopsy report was a disappointment because it read: " it could be this or it could be that " and the sample they took was end-stage PF. I called the Coalition for PF and they gave me names of docs in NYC and Mass. I made an appt with Dr. Padilla at Mt. Sinai because she could see me the quickest. Later, I find out that if I am to get a lung transplant eval I would have to go to Columbia Presbyterian as my insurance company will not pay for an eval at Mt. Sinai as it is not a Center of Excellence. I gathered and mailed all my medical records to Dr. Padilla and am waiting for her response. She did order BW...my PFT, CXR, and HRCT were up to date, but she wanted a history. I really don't know if I am still alive because I was diagnosed earlier than most or because the disease is progressing slowly. The wording about " end-stage " in the path report kind of knocked my socks off and I felt that I needed to be seen my someone who is more of an expert in this field than who I had been going to. The basis for his steriod Tx was pulled from the International Concensus of Opinion for Tx of PF written in 1999! While there has not been another consensus written, there have been clinical trials and much more published about Tx options since 1999. But it is my understanding that even the " experts " disagree. > > Dr. Padilla recommended NAC, but she told me not to get it at GNC because of quality control issues. She recommended the liquid, which I am reading on this group in difficult to tolerate or that I obtain it from a Canadian Source who gets it from Germany. My insurance will pay for the liquid but not the tabs from Canada. Does anyone have a source for tabs that costs less than $1.00/pill for 900 mg? She wants me to take 3600 mg per day which would cost me $120.00 per month. > > I guess it's too late for a " long story short " (LOL), but I wanted to introduce myself and thank everyone for posting such good info on the group. Like others, Im still in the " panic stage " following the lung bisopy and the prognosis. I watched my Mom die from this disease and that adds to my anixety. I am 61 and had a lot planned for my next 10 years, but have certainly been handed a reality check. I work in mental health so you would think I would have solutions at my finger tips, but when it comes to your own life things look different. My greatest fear is that I will " age out " before I am ill enough to be considered for a lung transplant. I am most grateful for my life up to this point, but can't help but to panic over the future. Additionally, since this appears to be a famillal issue with me, I worry about my children and grandchildren. My insurance company is giving me a hard time over the gentic testing, but I haven't given up yet. > > Again, thanks to all who share info...I'll keep reading! > > Sue > IPF/1999 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2009 Report Share Posted August 19, 2009 Welcome Sue,Glad you found us, sorry you had to! My mother also died if IPF in the 5th year after dx at age 65. I remember she fought to be on the lung transplant list then because they said she was too old. Ya just didn't tell my mom something like that. She actually took it to the board of her transplant hospital and they approved her. Unfortunetly before she got her lung, she developed breast cancer and that kicked her off the list. She died a month later. I am also concerned about the familial aspect and actually I am signed up to be part of a research into genetic aspects at National Jewish. Check out their website I'm sure they would love to have you! Nice to see someone at 10 years, you beat my 8! This group is wonderful as you can tell.Dyane Phoenix IPF 02>> Good Morning everyone!> > I am a newcomer to this group having joined only a few weeks ago and have not posted before...just been lurking and trying to learn all I can about PF. I had a lung biopsy in June to determine what type of PF I have. I was diagnosed in 1999...so that should give some of you some hope. My lung capacity has been declining by about 3% a year since that time. I went to National Jewish in 1999, but they did not recommend a lung biopsy at that time. Things have changed in 10 years and now docs are recommending biopsies sooner than later. Anyway, I did not recover from the lung biopsy in a few days, as some of you have reported. I am back to work, but it took me the full 6 weeks to "catch my breath". I thought something was wrong until I read that others on the group had had the same experience. My PF is believed to be genetic in origin as my Mom and 1st. cousin died from it and my aunt (my Mom's sister) has had it for over 10 years. She is on oxygen 24/7 but is 73 years old and has "aged out" with regard to a lung transplant.> > I have had much the same ecperiences as some of you have reported with Pulmonary docs who do not know much about this disease or how to treat it. I had been going to the same guy since 1998, but following the lung biopsy I changed to someone else because the first Pulmonary doc wanted to start me on steriods and I wanted to explore my options. My biopsy report was a disappointment because it read: "it could be this or it could be that" and the sample they took was end-stage PF. I called the Coalition for PF and they gave me names of docs in NYC and Mass. I made an appt with Dr. Padilla at Mt. Sinai because she could see me the quickest. Later, I find out that if I am to get a lung transplant eval I would have to go to Columbia Presbyterian as my insurance company will not pay for an eval at Mt. Sinai as it is not a Center of Excellence. I gathered and mailed all my medical records to Dr. Padilla and am waiting for her response. She did order BW...my PFT, CXR, and HRCT were up to date, but she wanted a history. I really don't know if I am still alive because I was diagnosed earlier than most or because the disease is progressing slowly. The wording about "end-stage" in the path report kind of knocked my socks off and I felt that I needed to be seen my someone who is more of an expert in this field than who I had been going to. The basis for his steriod Tx was pulled from the International Concensus of Opinion for Tx of PF written in 1999! While there has not been another consensus written, there have been clinical trials and much more published about Tx options since 1999. But it is my understanding that even the "experts" disagree. > > Dr. Padilla recommended NAC, but she told me not to get it at GNC because of quality control issues. She recommended the liquid, which I am reading on this group in difficult to tolerate or that I obtain it from a Canadian Source who gets it from Germany. My insurance will pay for the liquid but not the tabs from Canada. Does anyone have a source for tabs that costs less than $1.00/pill for 900 mg? She wants me to take 3600 mg per day which would cost me $120.00 per month.> > I guess it's too late for a "long story short" (LOL), but I wanted to introduce myself and thank everyone for posting such good info on the group. Like others, Im still in the "panic stage" following the lung bisopy and the prognosis. I watched my Mom die from this disease and that adds to my anixety. I am 61 and had a lot planned for my next 10 years, but have certainly been handed a reality check. I work in mental health so you would think I would have solutions at my finger tips, but when it comes to your own life things look different. My greatest fear is that I will "age out" before I am ill enough to be considered for a lung transplant. I am most grateful for my life up to this point, but can't help but to panic over the future. Additionally, since this appears to be a famillal issue with me, I worry about my children and grandchildren. My insurance company is giving me a hard time over the gentic testing, but I haven't given up yet.> > Again, thanks to all who share info...I'll keep reading!> > Sue> IPF/1999> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2009 Report Share Posted August 19, 2009 http://www.puritan.com/amino-acid-supplements-082/n-acetyl-cysteine-nac-600-mg-000214?searchterm=nac & rdcnt=1600 mg. (60 Capsules) $25.98 for 360 tabs = 7.2 cents each + shipping P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 10 LPM 8/04, PH 3/06, ILL yo 61REMEMBER : All of you on Prednisone'stressed' spelled backwards is 'desserts'Subject: NACTo: Breathe-Support Date: Wednesday, August 19, 2009, 10:08 AM Good Morning everyone! I am a newcomer to this group having joined only a few weeks ago and have not posted before...just been lurking and trying to learn all I can about PF. I had a lung biopsy in June to determine what type of PF I have. I was diagnosed in 1999...so that should give some of you some hope. My lung capacity has been declining by about 3% a year since that time. I went to National Jewish in 1999, but they did not recommend a lung biopsy at that time. Things have changed in 10 years and now docs are recommending biopsies sooner than later. Anyway, I did not recover from the lung biopsy in a few days, as some of you have reported. I am back to work, but it took me the full 6 weeks to "catch my breath". I thought something was wrong until I read that others on the group had had the same experience. My PF is believed to be genetic in origin as my Mom and 1st. cousin died from it and my aunt (my Mom's sister) has had it for over 10 years. She is on oxygen 24/7 but is 73 years old and has "aged out" with regard to a lung transplant. I have had much the same ecperiences as some of you have reported with Pulmonary docs who do not know much about this disease or how to treat it. I had been going to the same guy since 1998, but following the lung biopsy I changed to someone else because the first Pulmonary doc wanted to start me on steriods and I wanted to explore my options. My biopsy report was a disappointment because it read: "it could be this or it could be that" and the sample they took was end-stage PF. I called the Coalition for PF and they gave me names of docs in NYC and Mass. I made an appt with Dr. Padilla at Mt. Sinai because she could see me the quickest. Later, I find out that if I am to get a lung transplant eval I would have to go to Columbia Presbyterian as my insurance company will not pay for an eval at Mt. Sinai as it is not a Center of Excellence. I gathered and mailed all my medical records to Dr. Padilla and am waiting for her response. She did order BW...my PFT, CXR, and HRCT were up to date, but she wanted a history. I really don't know if I am still alive because I was diagnosed earlier than most or because the disease is progressing slowly. The wording about "end-stage" in the path report kind of knocked my socks off and I felt that I needed to be seen my someone who is more of an expert in this field than who I had been going to. The basis for his steriod Tx was pulled from the International Concensus of Opinion for Tx of PF written in 1999! While there has not been another consensus written, there have been clinical trials and much more published about Tx options since 1999. But it is my understanding that even the "experts" disagree. Dr. Padilla recommended NAC, but she told me not to get it at GNC because of quality control issues. She recommended the liquid, which I am reading on this group in difficult to tolerate or that I obtain it from a Canadian Source who gets it from Germany. My insurance will pay for the liquid but not the tabs from Canada. Does anyone have a source for tabs that costs less than $1.00/pill for 900 mg? She wants me to take 3600 mg per day which would cost me $120.00 per month. I guess it's too late for a "long story short" (LOL), but I wanted to introduce myself and thank everyone for posting such good info on the group. Like others, Im still in the "panic stage" following the lung bisopy and the prognosis. I watched my Mom die from this disease and that adds to my anixety. I am 61 and had a lot planned for my next 10 years, but have certainly been handed a reality check. I work in mental health so you would think I would have solutions at my finger tips, but when it comes to your own life things look different. My greatest fear is that I will "age out" before I am ill enough to be considered for a lung transplant. I am most grateful for my life up to this point, but can't help but to panic over the future. Additionally, since this appears to be a famillal issue with me, I worry about my children and grandchildren. My insurance company is giving me a hard time over the gentic testing, but I haven't given up yet. Again, thanks to all who share info...I'll keep reading! Sue IPF/1999 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2009 Report Share Posted August 19, 2009 Sue, Welcome! Briefly I will tell you that over 5 years ago, I read through the biopsy report and read the words " end stage....greyish, rubbery wedge.... " So when Mom and Dad wanted to take me onece more to the beautiful Blue Ridge mountains (one last time). We all thought this was it. In September I will be going back to North Carolina, and will probably not take oxygen. I too had a very difficult time recovering from the biopsy. So keep on with your good planning, and make plans for more Christmases to come. I wish you the very best. That " end stage " is for the medical field only. Jerry/Mississippi/54/IPF/dx April 05 > > Good Morning everyone! > > I am a newcomer to this group having joined only a few weeks ago and have not posted before...just been lurking and trying to learn all I can about PF. I had a lung biopsy in June to determine what type of PF I have. I was diagnosed in 1999...so that should give some of you some hope. My lung capacity has been declining by about 3% a year since that time. I went to National Jewish in 1999, but they did not recommend a lung biopsy at that time. Things have changed in 10 years and now docs are recommending biopsies sooner than later. Anyway, I did not recover from the lung biopsy in a few days, as some of you have reported. I am back to work, but it took me the full 6 weeks to " catch my breath " . I thought something was wrong until I read that others on the group had had the same experience. My PF is believed to be genetic in origin as my Mom and 1st. cousin died from it and my aunt (my Mom's sister) has had it for over 10 years. She is on oxygen 24/7 but is 73 years old and has " aged out " with regard to a lung transplant. > > I have had much the same ecperiences as some of you have reported with Pulmonary docs who do not know much about this disease or how to treat it. I had been going to the same guy since 1998, but following the lung biopsy I changed to someone else because the first Pulmonary doc wanted to start me on steriods and I wanted to explore my options. My biopsy report was a disappointment because it read: " it could be this or it could be that " and the sample they took was end-stage PF. I called the Coalition for PF and they gave me names of docs in NYC and Mass. I made an appt with Dr. Padilla at Mt. Sinai because she could see me the quickest. Later, I find out that if I am to get a lung transplant eval I would have to go to Columbia Presbyterian as my insurance company will not pay for an eval at Mt. Sinai as it is not a Center of Excellence. I gathered and mailed all my medical records to Dr. Padilla and am waiting for her response. She did order BW...my PFT, CXR, and HRCT were up to date, but she wanted a history. I really don't know if I am still alive because I was diagnosed earlier than most or because the disease is progressing slowly. The wording about " end-stage " in the path report kind of knocked my socks off and I felt that I needed to be seen my someone who is more of an expert in this field than who I had been going to. The basis for his steriod Tx was pulled from the International Concensus of Opinion for Tx of PF written in 1999! While there has not been another consensus written, there have been clinical trials and much more published about Tx options since 1999. But it is my understanding that even the " experts " disagree. > > Dr. Padilla recommended NAC, but she told me not to get it at GNC because of quality control issues. She recommended the liquid, which I am reading on this group in difficult to tolerate or that I obtain it from a Canadian Source who gets it from Germany. My insurance will pay for the liquid but not the tabs from Canada. Does anyone have a source for tabs that costs less than $1.00/pill for 900 mg? She wants me to take 3600 mg per day which would cost me $120.00 per month. > > I guess it's too late for a " long story short " (LOL), but I wanted to introduce myself and thank everyone for posting such good info on the group. Like others, Im still in the " panic stage " following the lung bisopy and the prognosis. I watched my Mom die from this disease and that adds to my anixety. I am 61 and had a lot planned for my next 10 years, but have certainly been handed a reality check. I work in mental health so you would think I would have solutions at my finger tips, but when it comes to your own life things look different. My greatest fear is that I will " age out " before I am ill enough to be considered for a lung transplant. I am most grateful for my life up to this point, but can't help but to panic over the future. Additionally, since this appears to be a famillal issue with me, I worry about my children and grandchildren. My insurance company is giving me a hard time over the gentic testing, but I haven't given up yet. > > Again, thanks to all who share info...I'll keep reading! > > Sue > IPF/1999 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2009 Report Share Posted August 19, 2009 Hi nne, The O2 supplier brought me a full tank last month and it was leaking, it lasted 2 days only they had brought me a defective tank. Call the supplier have them bring another tank. also,when they bring the big tank to refill from, make sure the pressure reads at least 40psi or the tank will freeze up befor it fills. Hope this helps A Subject: Re: NACTo: Breathe-Support Date: Wednesday, August 19, 2009, 10:45 AM Welcome Sue!I had my biopsy in July and the diagnosis was a mish-mosh of many different things, "could be this could be that", also. I have been referred to Columbia for an evaluation which Cigna will pay for and I found out yesterday that I got an appointment on Oct.1. I was diagnosed with ILD in June of this year and I don't know if a transplant would be the way to go. I went to see my pulmodude yesterday and he said I'm a great candidate since I have nothing else wrong with me (or so we think); I just need to loose weight. I'm on prednisone 15 mg now which does nothing. I have never heard of NAC - does it help? I use O2 at night 2 lpm and prescribed a portable Helios for exertion. I don't know- I've been feeling so depressed (even though I take Zoloft) since getting the paperwork from Columbia- starting the tests all over again and adding so many more tests- I'm thinking of not going. What is the point?? 5 more years?? More drugs with serious side effects after transplant?? It's funny how I need to loose weight before transplant and then after transplant, drugs make you gain weight LOL. Also was given portable Helios last Thursday. Friday morning I go to fill it and it only lasted a half hour? The tank in less than 2 weeks is empty and I only filled it once??? Anyone with liquid O2 knowledge please advise!Anyway Sue- maybe we will bump into each other at Columbia. I'm happier in person and on O2 LOLnne, 55, ILD 6/09>> Good Morning everyone!> > I am a newcomer to this group having joined only a few weeks ago and have not posted before...just been lurking and trying to learn all I can about PF. I had a lung biopsy in June to determine what type of PF I have. I was diagnosed in 1999...so that should give some of you some hope. My lung capacity has been declining by about 3% a year since that time. I went to National Jewish in 1999, but they did not recommend a lung biopsy at that time. Things have changed in 10 years and now docs are recommending biopsies sooner than later. Anyway, I did not recover from the lung biopsy in a few days, as some of you have reported. I am back to work, but it took me the full 6 weeks to "catch my breath". I thought something was wrong until I read that others on the group had had the same experience. My PF is believed to be genetic in origin as my Mom and 1st. cousin died from it and my aunt (my Mom's sister) has had it for over 10 years. She is on oxygen 24/7 but is 73 years old and has "aged out" with regard to a lung transplant.> > I have had much the same ecperiences as some of you have reported with Pulmonary docs who do not know much about this disease or how to treat it. I had been going to the same guy since 1998, but following the lung biopsy I changed to someone else because the first Pulmonary doc wanted to start me on steriods and I wanted to explore my options. My biopsy report was a disappointment because it read: "it could be this or it could be that" and the sample they took was end-stage PF. I called the Coalition for PF and they gave me names of docs in NYC and Mass. I made an appt with Dr. Padilla at Mt. Sinai because she could see me the quickest. Later, I find out that if I am to get a lung transplant eval I would have to go to Columbia Presbyterian as my insurance company will not pay for an eval at Mt. Sinai as it is not a Center of Excellence. I gathered and mailed all my medical records to Dr. Padilla and am waiting for her response. She did order BW...my PFT, CXR, and HRCT were up to date, but she wanted a history. I really don't know if I am still alive because I was diagnosed earlier than most or because the disease is progressing slowly. The wording about "end-stage" in the path report kind of knocked my socks off and I felt that I needed to be seen my someone who is more of an expert in this field than who I had been going to. The basis for his steriod Tx was pulled from the International Concensus of Opinion for Tx of PF written in 1999! While there has not been another consensus written, there have been clinical trials and much more published about Tx options since 1999. But it is my understanding that even the "experts" disagree. > > Dr. Padilla recommended NAC, but she told me not to get it at GNC because of quality control issues. She recommended the liquid, which I am reading on this group in difficult to tolerate or that I obtain it from a Canadian Source who gets it from Germany. My insurance will pay for the liquid but not the tabs from Canada. Does anyone have a source for tabs that costs less than $1.00/pill for 900 mg? She wants me to take 3600 mg per day which would cost me $120.00 per month.> > I guess it's too late for a "long story short" (LOL), but I wanted to introduce myself and thank everyone for posting such good info on the group. Like others, Im still in the "panic stage" following the lung bisopy and the prognosis. I watched my Mom die from this disease and that adds to my anixety. I am 61 and had a lot planned for my next 10 years, but have certainly been handed a reality check. I work in mental health so you would think I would have solutions at my finger tips, but when it comes to your own life things look different. My greatest fear is that I will "age out" before I am ill enough to be considered for a lung transplant. I am most grateful for my life up to this point, but can't help but to panic over the future. Additionally, since this appears to be a famillal issue with me, I worry about my children and grandchildren. My insurance company is giving me a hard time over the gentic testing, but I haven't given up yet.> > Again, thanks to all who share info...I'll keep reading!> > Sue> IPF/1999> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2009 Report Share Posted August 19, 2009 Sue, Welcome to the board!! I'm glad you decided to begin posting. I know someone who has been a patient of Dr. Padilla and has been very happy with the care he received. When I lived in NY I was under the care of Simonelli at Columbia. I think very highly of him. Now I live in North Carolina and get my care at Duke. I can't imagine what it's like to have so much PF in your family. It must be very overwhelming. I'm glad you're here. This is just a fabulous group of people. I hope find the same support and friendship that I've found here. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Wednesday, August 19, 2009 11:08:38 AMSubject: NAC Good Morning everyone!I am a newcomer to this group having joined only a few weeks ago and have not posted before...just been lurking and trying to learn all I can about PF. I had a lung biopsy in June to determine what type of PF I have. I was diagnosed in 1999...so that should give some of you some hope. My lung capacity has been declining by about 3% a year since that time. I went to National Jewish in 1999, but they did not recommend a lung biopsy at that time. Things have changed in 10 years and now docs are recommending biopsies sooner than later. Anyway, I did not recover from the lung biopsy in a few days, as some of you have reported. I am back to work, but it took me the full 6 weeks to "catch my breath". I thought something was wrong until I read that others on the group had had the same experience. My PF is believed to be genetic in origin as my Mom and 1st. cousin died from it and my aunt (my Mom's sister) has had it for over 10 years. She is on oxygen 24/7 but is 73 years old and has "aged out" with regard to a lung transplant.I have had much the same ecperiences as some of you have reported with Pulmonary docs who do not know much about this disease or how to treat it. I had been going to the same guy since 1998, but following the lung biopsy I changed to someone else because the first Pulmonary doc wanted to start me on steriods and I wanted to explore my options. My biopsy report was a disappointment because it read: "it could be this or it could be that" and the sample they took was end-stage PF. I called the Coalition for PF and they gave me names of docs in NYC and Mass. I made an appt with Dr. Padilla at Mt. Sinai because she could see me the quickest. Later, I find out that if I am to get a lung transplant eval I would have to go to Columbia Presbyterian as my insurance company will not pay for an eval at Mt. Sinai as it is not a Center of Excellence. I gathered and mailed all my medical records to Dr. Padilla and am waiting for her response. She did order BW...my PFT, CXR, and HRCT were up to date, but she wanted a history. I really don't know if I am still alive because I was diagnosed earlier than most or because the disease is progressing slowly. The wording about "end-stage" in the path report kind of knocked my socks off and I felt that I needed to be seen my someone who is more of an expert in this field than who I had been going to. The basis for his steriod Tx was pulled from the International Concensus of Opinion for Tx of PF written in 1999! While there has not been another consensus written, there have been clinical trials and much more published about Tx options since 1999. But it is my understanding that even the "experts" disagree. Dr. Padilla recommended NAC, but she told me not to get it at GNC because of quality control issues. She recommended the liquid, which I am reading on this group in difficult to tolerate or that I obtain it from a Canadian Source who gets it from Germany. My insurance will pay for the liquid but not the tabs from Canada. Does anyone have a source for tabs that costs less than $1.00/pill for 900 mg? She wants me to take 3600 mg per day which would cost me $120.00 per month.I guess it's too late for a "long story short" (LOL), but I wanted to introduce myself and thank everyone for posting such good info on the group. Like others, Im still in the "panic stage" following the lung bisopy and the prognosis. I watched my Mom die from this disease and that adds to my anixety. I am 61 and had a lot planned for my next 10 years, but have certainly been handed a reality check. I work in mental health so you would think I would have solutions at my finger tips, but when it comes to your own life things look different. My greatest fear is that I will "age out" before I am ill enough to be considered for a lung transplant. I am most grateful for my life up to this point, but can't help but to panic over the future. Additionally, since this appears to be a famillal issue with me, I worry about my children and grandchildren. My insurance company is giving me a hard time over the gentic testing, but I haven't given up yet.Again, thanks to all who share info...I'll keep reading!SueIPF/1999 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2009 Report Share Posted August 20, 2009 , Thanks for the advice. I was the last patient the guy had that night- he came at 10pm- so maybe you are right the tank he was using to fill up mine wasn't at 40psi or there is a leak. I will call them today. Thanks again! > > > > Good Morning everyone! > > > > I am a newcomer to this group having joined only a few weeks ago and have not posted before...just been lurking and trying to learn all I can about PF. I had a lung biopsy in June to determine what type of PF I have. I was diagnosed in 1999...so that should give some of you some hope. My lung capacity has been declining by about 3% a year since that time. I went to National Jewish in 1999, but they did not recommend a lung biopsy at that time. Things have changed in 10 years and now docs are recommending biopsies sooner than later. Anyway, I did not recover from the lung biopsy in a few days, as some of you have reported. I am back to work, but it took me the full 6 weeks to " catch my breath " . I thought something was wrong until I read that others on the group had had the same experience. My PF is believed to be genetic in origin as my Mom and 1st. cousin died from it and my aunt (my Mom's sister) has had it for over 10 years. She is on oxygen 24/7 but > is 73 years old and has " aged out " with regard to a lung transplant. > > > > I have had much the same ecperiences as some of you have reported with Pulmonary docs who do not know much about this disease or how to treat it. I had been going to the same guy since 1998, but following the lung biopsy I changed to someone else because the first Pulmonary doc wanted to start me on steriods and I wanted to explore my options. My biopsy report was a disappointment because it read: " it could be this or it could be that " and the sample they took was end-stage PF. I called the Coalition for PF and they gave me names of docs in NYC and Mass. I made an appt with Dr. Padilla at Mt. Sinai because she could see me the quickest. Later, I find out that if I am to get a lung transplant eval I would have to go to Columbia Presbyterian as my insurance company will not pay for an eval at Mt. Sinai as it is not a Center of Excellence. I gathered and mailed all my medical records to Dr. Padilla and am waiting for her response. She did order > BW...my PFT, CXR, and HRCT were up to date, but she wanted a history. I really don't know if I am still alive because I was diagnosed earlier than most or because the disease is progressing slowly. The wording about " end-stage " in the path report kind of knocked my socks off and I felt that I needed to be seen my someone who is more of an expert in this field than who I had been going to. The basis for his steriod Tx was pulled from the International Concensus of Opinion for Tx of PF written in 1999! While there has not been another consensus written, there have been clinical trials and much more published about Tx options since 1999. But it is my understanding that even the " experts " disagree. > > > > Dr. Padilla recommended NAC, but she told me not to get it at GNC because of quality control issues. She recommended the liquid, which I am reading on this group in difficult to tolerate or that I obtain it from a Canadian Source who gets it from Germany. My insurance will pay for the liquid but not the tabs from Canada. Does anyone have a source for tabs that costs less than $1.00/pill for 900 mg? She wants me to take 3600 mg per day which would cost me $120.00 per month. > > > > I guess it's too late for a " long story short " (LOL), but I wanted to introduce myself and thank everyone for posting such good info on the group. Like others, Im still in the " panic stage " following the lung bisopy and the prognosis. I watched my Mom die from this disease and that adds to my anixety. I am 61 and had a lot planned for my next 10 years, but have certainly been handed a reality check. I work in mental health so you would think I would have solutions at my finger tips, but when it comes to your own life things look different. My greatest fear is that I will " age out " before I am ill enough to be considered for a lung transplant. I am most grateful for my life up to this point, but can't help but to panic over the future. Additionally, since this appears to be a famillal issue with me, I worry about my children and grandchildren. My insurance company is giving me a hard time over the gentic testing, but I haven't given up yet. > > > > Again, thanks to all who share info...I'll keep reading! > > > > Sue > > IPF/1999 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2009 Report Share Posted August 20, 2009 Hey, Sue... Welcome to the group. Did anybody warn you not to stick your nose anywhere close to a bottle of NAC when you open it? If you've ever been in an outdoor john in the heat of summer, that's almost as bad as the NAC. I get them from Puritan's Pride, 600 mg, and they regularly have "buy two, get three free" sales. My doctors at the U. of Penn. Lung Center encourage my taking 1800mg daily...morning noon and night. They won't say it does any good, but they are pretty adamant that I should continue taking it. Oh, and I was diagnosed "end stage" last October and I later learned the doc didn't expect me to make it to this past Spring.. I don't feel much worse than I did when I was diagnosed and I'm trying right now to make a permanent mount for oxygen on my Harley, so I'm a long way from throwing in the towel. I was forced to retire due to the fact a lack of breath and heavy lifting don't necessarily go together, and I'm having a ton of fun catching up on all the reading and feeding of the birds and stuff I wanted to do but never had time for. And I do believe in miracles! So hang in there. Bill C. IPF 10/08 N.E. PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2009 Report Share Posted August 20, 2009 Sue i used the NAC liquid for about 3 years until the new insurance company refused to pay for it i mixed it with diet coke and it was very palatable 3 times a day since insurance refused to pay, the doc recommended The Vitamin Shoppe 600 mgs -- their own brand -- take 1 capsule 3 times a day don't remember the cost, but it probably balances out to the same thing as the expense of the diet cola at first i was concerned that it wouldn't be as effective as the liquid, but i really haven't noticed much difference, if any however, if the insurance would pay for the liquid, i would go back to it pulmonary doc also suggested what to get at GNC, but i forget, since the vitamin shoppe was the first choice Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: NACTo: Breathe-Support Date: Wednesday, August 19, 2009, 11:08 AM Good Morning everyone!I am a newcomer to this group having joined only a few weeks ago and have not posted before...just been lurking and trying to learn all I can about PF. I had a lung biopsy in June to determine what type of PF I have. I was diagnosed in 1999...so that should give some of you some hope. My lung capacity has been declining by about 3% a year since that time. I went to National Jewish in 1999, but they did not recommend a lung biopsy at that time. Things have changed in 10 years and now docs are recommending biopsies sooner than later. Anyway, I did not recover from the lung biopsy in a few days, as some of you have reported. I am back to work, but it took me the full 6 weeks to "catch my breath". I thought something was wrong until I read that others on the group had had the same experience. My PF is believed to be genetic in origin as my Mom and 1st. cousin died from it and my aunt (my Mom's sister) has had it for over 10 years. She is on oxygen 24/7 but is 73 years old and has "aged out" with regard to a lung transplant.I have had much the same ecperiences as some of you have reported with Pulmonary docs who do not know much about this disease or how to treat it. I had been going to the same guy since 1998, but following the lung biopsy I changed to someone else because the first Pulmonary doc wanted to start me on steriods and I wanted to explore my options. My biopsy report was a disappointment because it read: "it could be this or it could be that" and the sample they took was end-stage PF. I called the Coalition for PF and they gave me names of docs in NYC and Mass. I made an appt with Dr. Padilla at Mt. Sinai because she could see me the quickest. Later, I find out that if I am to get a lung transplant eval I would have to go to Columbia Presbyterian as my insurance company will not pay for an eval at Mt. Sinai as it is not a Center of Excellence. I gathered and mailed all my medical records to Dr. Padilla and am waiting for her response. She did order BW...my PFT, CXR, and HRCT were up to date, but she wanted a history. I really don't know if I am still alive because I was diagnosed earlier than most or because the disease is progressing slowly. The wording about "end-stage" in the path report kind of knocked my socks off and I felt that I needed to be seen my someone who is more of an expert in this field than who I had been going to. The basis for his steriod Tx was pulled from the International Concensus of Opinion for Tx of PF written in 1999! While there has not been another consensus written, there have been clinical trials and much more published about Tx options since 1999. But it is my understanding that even the "experts" disagree. Dr. Padilla recommended NAC, but she told me not to get it at GNC because of quality control issues. She recommended the liquid, which I am reading on this group in difficult to tolerate or that I obtain it from a Canadian Source who gets it from Germany. My insurance will pay for the liquid but not the tabs from Canada. Does anyone have a source for tabs that costs less than $1.00/pill for 900 mg? She wants me to take 3600 mg per day which would cost me $120.00 per month.I guess it's too late for a "long story short" (LOL), but I wanted to introduce myself and thank everyone for posting such good info on the group. Like others, Im still in the "panic stage" following the lung bisopy and the prognosis. I watched my Mom die from this disease and that adds to my anixety. I am 61 and had a lot planned for my next 10 years, but have certainly been handed a reality check. I work in mental health so you would think I would have solutions at my finger tips, but when it comes to your own life things look different. My greatest fear is that I will "age out" before I am ill enough to be considered for a lung transplant. I am most grateful for my life up to this point, but can't help but to panic over the future. Additionally, since this appears to be a famillal issue with me, I worry about my children and grandchildren. My insurance company is giving me a hard time over the gentic testing, but I haven't given up yet.Again, thanks to all who share info...I'll keep reading!SueIPF/1999__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2009 Report Share Posted August 20, 2009 Sue and Joyce, I use the liquid Acetylcysteine with a small amount of Orange juice. I'm to take 3ml 3 times a day. This is difficult some days because the medicine has to be kept refrigerated and I'm not always home to take it. I bought some NAC from GNC and the directions said to take 1-2 capsules a day. I am confused though because I don't know how to equate the liquid to the pills to be certain I'm taking the correct amount. I also read that Sue said her doctor did not recommend GNC and I think Joyce you go to the Vitamin Shoppe. Do either of you have any suggestions for me? From: Sue Herba <dolls4u (AT) nycap (DOT) rr.com>Subject: NACTo: Breathe-Support@ yahoogroups. comDate: Wednesday, August 19, 2009, 11:08 AM Good Morning everyone!I am a newcomer to this group having joined only a few weeks ago and have not posted before...just been lurking and trying to learn all I can about PF. I had a lung biopsy in June to determine what type of PF I have. I was diagnosed in 1999...so that should give some of you some hope. My lung capacity has been declining by about 3% a year since that time. I went to National Jewish in 1999, but they did not recommend a lung biopsy at that time. Things have changed in 10 years and now docs are recommending biopsies sooner than later. Anyway, I did not recover from the lung biopsy in a few days, as some of you have reported. I am back to work, but it took me the full 6 weeks to "catch my breath". I thought something was wrong until I read that others on the group had had the same experience. My PF is believed to be genetic in origin as my Mom and 1st. cousin died from it and my aunt (my Mom's sister) has had it for over 10 years. She is on oxygen 24/7 but is 73 years old and has "aged out" with regard to a lung transplant.I have had much the same ecperiences as some of you have reported with Pulmonary docs who do not know much about this disease or how to treat it. I had been going to the same guy since 1998, but following the lung biopsy I changed to someone else because the first Pulmonary doc wanted to start me on steriods and I wanted to explore my options. My biopsy report was a disappointment because it read: "it could be this or it could be that" and the sample they took was end-stage PF. I called the Coalition for PF and they gave me names of docs in NYC and Mass. I made an appt with Dr. Padilla at Mt. Sinai because she could see me the quickest. Later, I find out that if I am to get a lung transplant eval I would have to go to Columbia Presbyterian as my insurance company will not pay for an eval at Mt. Sinai as it is not a Center of Excellence. I gathered and mailed all my medical records to Dr. Padilla and am waiting for her response. She did order BW...my PFT, CXR, and HRCT were up to date, but she wanted a history. I really don't know if I am still alive because I was diagnosed earlier than most or because the disease is progressing slowly. The wording about "end-stage" in the path report kind of knocked my socks off and I felt that I needed to be seen my someone who is more of an expert in this field than who I had been going to. The basis for his steriod Tx was pulled from the International Concensus of Opinion for Tx of PF written in 1999! While there has not been another consensus written, there have been clinical trials and much more published about Tx options since 1999. But it is my understanding that even the "experts" disagree. Dr. Padilla recommended NAC, but she told me not to get it at GNC because of quality control issues. She recommended the liquid, which I am reading on this group in difficult to tolerate or that I obtain it from a Canadian Source who gets it from Germany. My insurance will pay for the liquid but not the tabs from Canada. Does anyone have a source for tabs that costs less than $1.00/pill for 900 mg? She wants me to take 3600 mg per day which would cost me $120.00 per month.I guess it's too late for a "long story short" (LOL), but I wanted to introduce myself and thank everyone for posting such good info on the group. Like others, Im still in the "panic stage" following the lung bisopy and the prognosis. I watched my Mom die from this disease and that adds to my anixety. I am 61 and had a lot planned for my next 10 years, but have certainly been handed a reality check. I work in mental health so you would think I would have solutions at my finger tips, but when it comes to your own life things look different. My greatest fear is that I will "age out" before I am ill enough to be considered for a lung transplant. I am most grateful for my life up to this point, but can't help but to panic over the future. Additionally, since this appears to be a famillal issue with me, I worry about my children and grandchildren. My insurance company is giving me a hard time over the gentic testing, but I haven't given up yet.Again, thanks to all who share info...I'll keep reading!SueIPF/1999____________ _________ _________ _________ _________ __ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2009 Report Share Posted August 20, 2009 Hi Bill, Do ya have a tall backrest on your bike? Cuz if you do the o2 carrier that is on my Jazzy chair seems like it would be easy to add to the back and I carry E tanks on it all the time. You've mentioned your Harley before and I always think of my sister and her husband who ride. Have a great time!Dyane Phoenix ipf 02>> Hey, Sue...> Welcome to the group. Did anybody warn you not to stick your nose > anywhere close to a bottle of NAC when you open it? If you've ever been in an > outdoor john in the heat of summer, that's almost as bad as the NAC. I get > them from Puritan's Pride, 600 mg, and they regularly have "buy two, get > three free" sales. My doctors at the U. of Penn. Lung Center encourage my > taking 1800mg daily...morning noon and night. They won't say it does any > good, but they are pretty adamant that I should continue taking it. > Oh, and I was diagnosed "end stage" last October and I later learned > the doc didn't expect me to make it to this past Spring.. I don't feel much > worse than I did when I was diagnosed and I'm trying right now to make a > permanent mount for oxygen on my Harley, so I'm a long way from throwing in > the towel. I was forced to retire due to the fact a lack of breath and > heavy lifting don't necessarily go together, and I'm having a ton of fun > catching up on all the reading and feeding of the birds and stuff I wanted to do > but never had time for. And I do believe in miracles! So hang in there.> > Bill C. IPF 10/08> N.E. PA> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2009 Report Share Posted August 20, 2009 adrienne the nac capsules that i take-- 600 mgs -- is equivalent to one 3 ml dose that's a good idea -- using the capsules when you are not at home, because of refrigeration Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: NACTo: Breathe-Support Date: Thursday, August 20, 2009, 1:40 PM Sue and Joyce, I use the liquid Acetylcysteine with a small amount of Orange juice. I'm to take 3ml 3 times a day. This is difficult some days because the medicine has to be kept refrigerated and I'm not always home to take it. I bought some NAC from GNC and the directions said to take 1-2 capsules a day. I am confused though because I don't know how to equate the liquid to the pills to be certain I'm taking the correct amount. I also read that Sue said her doctor did not recommend GNC and I think Joyce you go to the Vitamin Shoppe. Do either of you have any suggestions for me? From: Sue Herba <dolls4u (AT) nycap (DOT) rr.com>Subject: NACTo: Breathe-Support@ yahoogroups. comDate: Wednesday, August 19, 2009, 11:08 AM Good Morning everyone!I am a newcomer to this group having joined only a few weeks ago and have not posted before...just been lurking and trying to learn all I can about PF. I had a lung biopsy in June to determine what type of PF I have. I was diagnosed in 1999...so that should give some of you some hope. My lung capacity has been declining by about 3% a year since that time. I went to National Jewish in 1999, but they did not recommend a lung biopsy at that time. Things have changed in 10 years and now docs are recommending biopsies sooner than later. Anyway, I did not recover from the lung biopsy in a few days, as some of you have reported. I am back to work, but it took me the full 6 weeks to "catch my breath". I thought something was wrong until I read that others on the group had had the same experience. My PF is believed to be genetic in origin as my Mom and 1st. cousin died from it and my aunt (my Mom's sister) has had it for over 10 years. She is on oxygen 24/7 but is 73 years old and has "aged out" with regard to a lung transplant.I have had much the same ecperiences as some of you have reported with Pulmonary docs who do not know much about this disease or how to treat it. I had been going to the same guy since 1998, but following the lung biopsy I changed to someone else because the first Pulmonary doc wanted to start me on steriods and I wanted to explore my options. My biopsy report was a disappointment because it read: "it could be this or it could be that" and the sample they took was end-stage PF. I called the Coalition for PF and they gave me names of docs in NYC and Mass. I made an appt with Dr. Padilla at Mt. Sinai because she could see me the quickest. Later, I find out that if I am to get a lung transplant eval I would have to go to Columbia Presbyterian as my insurance company will not pay for an eval at Mt. Sinai as it is not a Center of Excellence. I gathered and mailed all my medical records to Dr. Padilla and am waiting for her response. She did order BW...my PFT, CXR, and HRCT were up to date, but she wanted a history. I really don't know if I am still alive because I was diagnosed earlier than most or because the disease is progressing slowly. The wording about "end-stage" in the path report kind of knocked my socks off and I felt that I needed to be seen my someone who is more of an expert in this field than who I had been going to. The basis for his steriod Tx was pulled from the International Concensus of Opinion for Tx of PF written in 1999! While there has not been another consensus written, there have been clinical trials and much more published about Tx options since 1999. But it is my understanding that even the "experts" disagree. Dr. Padilla recommended NAC, but she told me not to get it at GNC because of quality control issues. She recommended the liquid, which I am reading on this group in difficult to tolerate or that I obtain it from a Canadian Source who gets it from Germany. My insurance will pay for the liquid but not the tabs from Canada. Does anyone have a source for tabs that costs less than $1.00/pill for 900 mg? She wants me to take 3600 mg per day which would cost me $120.00 per month.I guess it's too late for a "long story short" (LOL), but I wanted to introduce myself and thank everyone for posting such good info on the group. Like others, Im still in the "panic stage" following the lung bisopy and the prognosis. I watched my Mom die from this disease and that adds to my anixety. I am 61 and had a lot planned for my next 10 years, but have certainly been handed a reality check. I work in mental health so you would think I would have solutions at my finger tips, but when it comes to your own life things look different. My greatest fear is that I will "age out" before I am ill enough to be considered for a lung transplant. I am most grateful for my life up to this point, but can't help but to panic over the future. Additionally, since this appears to be a famillal issue with me, I worry about my children and grandchildren. My insurance company is giving me a hard time over the gentic testing, but I haven't given up yet.Again, thanks to all who share info...I'll keep reading!SueIPF/1999____________ _________ _________ _________ _________ __ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2009 Report Share Posted August 20, 2009 when first diagnosed back in march 2006, i used to cough up gook, after several months, i noticed that the gook was gone more recently i read about the relationship between nac and gook so i now think the disappearance of the gook is due to the nac that is just my opinion from observation, etc Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: NACTo: Breathe-Support Date: Thursday, August 20, 2009, 2:04 PM Hey, Sue... Welcome to the group. Did anybody warn you not to stick your nose anywhere close to a bottle of NAC when you open it? If you've ever been in an outdoor john in the heat of summer, that's almost as bad as the NAC. I get them from Puritan's Pride, 600 mg, and they regularly have "buy two, get three free" sales. My doctors at the U. of Penn. Lung Center encourage my taking 1800mg daily...morning noon and night. They won't say it does any good, but they are pretty adamant that I should continue taking it. Oh, and I was diagnosed "end stage" last October and I later learned the doc didn't expect me to make it to this past Spring.. I don't feel much worse than I did when I was diagnosed and I'm trying right now to make a permanent mount for oxygen on my Harley, so I'm a long way from throwing in the towel. I was forced to retire due to the fact a lack of breath and heavy lifting don't necessarily go together, and I'm having a ton of fun catching up on all the reading and feeding of the birds and stuff I wanted to do but never had time for. And I do believe in miracles! So hang in there. Bill C. IPF 10/08 N.E. PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2009 Report Share Posted August 23, 2009 Four years ago when I talked to the transplant Dr. he told me to take NAC and that anyone going to try for Tx should be taking it. Unfortunately my tummy just can't abide it. I had decided against Tx for me. For the newbies, PuritanPride.com has the cheapest prices. Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. bruce even if the nac just relieves certain symptoms, in my opinion, it is worth it Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- On Sun, 8/23/09, brucemoreland <brucemoreland (AT) gmail (DOT) com> wrote: From: brucemoreland <brucemoreland (AT) gmail (DOT) com>Subject: Re: NAC & ZyrtecTo: Breathe-Support Date: Sunday, August 23, 2009, 4:19 PM To my knowledge though no trials have been completed yet and published.Dr. Raghu may have observations from what he's seen in his portion ordiscussions with colleagues. I do believe NAC helps many. But the trialsare underway. In fact these are the first trials for prednisone as well.>>> >From: Jack Marshall mrshlljck (AT) yahoo (DOT) com>> >Subject: Re: vitamins and other suppliments> >To: Breathe-Support@ yahoogroups. com> >Date: Friday, August 21, 2009, 1:19 PM> >> >> >> >NAC did nothing for me, so I quit taking it and have several bottlesfor anyone who can use them. I have had great success with Zyrtec,which is an OTC for allergies. My theory is that it is effective incontrolling runny noses and coughing and that was my problem. After amonth, my runny nose had dried up and my coughing was down to a fewinstances when I am exposed to high humidity or cold. I have beendripless and coughless for six months. I take one a day.> >> > Jack> >79/IPF - UIP/dx06/05 Maine> >> >> >> >> >> ____________ _________ _________ __> From: drisanamerry <drisanamerry@ yahoo.com>> >To: Breathe-Support@ yahoogroups. com> >Sent: Thursday, August 20, 2009 2:03:34 PM> >Subject: vitamins and other suppliments> >> >> >I would be interested in what other vitamins and suppliments you allwould suggest be taken.> >> >hugs> >> >merry> >> >I count not a day complete till needle, thread and fabric do meet.> >2009 will be mighty fine!> >Due to recent budget cuts and the rising cost of electricity, gas andoil,> >as well as current market conditions, the Light at the End of theTunnel has been turned off.> >> >>__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2009 Report Share Posted August 23, 2009 Peggy Many experience what you did. However, one thing we may not mention enough is that the stomach issues do vary based on the form in which it is taken. Some who can't take the OTC supplements of NAC, are able to tolerate the liquid prescription version (in spite of its smell and taste) or the inhaled version. > > > > > > >From: Jack Marshall mrshlljck (AT) yahoo (DOT) com> > > >Subject: Re: vitamins and other suppliments > > >To: Breathe-Support@ yahoogroups. com > > >Date: Friday, August 21, 2009, 1:19 PM > > > > > > > > > > > >NAC did nothing for me, so I quit taking it and have several bottles > for anyone who can use them. I have had great success with Zyrtec, > which is an OTC for allergies. My theory is that it is effective in > controlling runny noses and coughing and that was my problem. After a > month, my runny nose had dried up and my coughing was down to a few > instances when I am exposed to high humidity or cold. I have been > dripless and coughless for six months. I take one a day. > > > > > > Jack > > >79/IPF - UIP/dx06/05 Maine > > > > > > > > > > > > > > > > > ____________ _________ _________ __ > > From: drisanamerry <drisanamerry@ yahoo.com> > > >To: Breathe-Support@ yahoogroups. com > > >Sent: Thursday, August 20, 2009 2:03:34 PM > > >Subject: vitamins and other suppliments > > > > > > > > >I would be interested in what other vitamins and suppliments you all > would suggest be taken. > > > > > >hugs > > > > > >merry > > > > > >I count not a day complete till needle, thread and fabric do meet. > > >2009 will be mighty fine! > > >Due to recent budget cuts and the rising cost of electricity, gas > and > oil, > > >as well as current market conditions, the Light at the End of the > Tunnel has been turned off. > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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