Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 Hi to everyone! I write this morning to update what's been happening to me the past couple of months. I've lived with pulmonary fibrosis for TEN years now. The time has come to consider a transplant. I had pneumonia a couple of times last spring & never recovered to my previous status. JO I first went through a transplant evalutation in Spring 2000 & was considered too healthy. I have autoimmune conditions, including a liver disease. I was diagnosed with NSIP with an open lung biopsy in Nov '98. A liver disease was diagnosed in 2000, but was missed during the lung transplant evaluation. You can live a very long time with this disease before considering a transplant & do OK. I have posted several times here & been on the Thursday evening phone conferences with others, but have taken a hiatus lately. Now I am trying to update the board on my conditions & status. Bruce I enjoy all your info you give out. Thanks, not only for an " oldie " (yes in age too - 64) but also to reconsider things I may have missed. Since I lived near Dallas when I was evaluated the first time, I certainly know the area where you live - HOT is the name I give it! As for rehab, I still do 40 minutes 5 or 6 (try for 6) times per week. I do 2 mph using 10 liters continuous oxygen. I also lift 3 lb hand weights at least three times per week. I live in TN now & am going through a liver biopsy & ct liver scan tomorow at Vanderbilt to make sure my liver will withstand the transplant & all that will follow. The liver transplant dr thought it probably would do OK, but of course must do his medical checks. Next, the " board " must ALL approve my lung transplant in order to take the next step doing the physical evaluations. I also was very saddened to learn of Joyce's death. She was another long timer, like myself. There just aren't lots of us. She gave me several e-mails that helped. What a Christian woman she was with so much faith. I hope this helps some of you newcomers & gives you incentive to take very good care of yourself. Exercise, stay away from large crowds & small children, don't SHAKE hands (bump elbows instead), & DO NOT take any herbal medicine! It is not FDA regulated & you don't know what it might contain! Doctors have told me this more than once. Use hand sanitizer liberally. Oh, last thing, I use 1 1/2 liters sleeping & up to 15 liters (could use even more at times) when doing active things. Why the extreme variation, even the doctor doesn't know. Perhaps the good exercise routine I've always done for years now???? I am just now going to try a shower chair. Why I have not done that before I don't know, as I need 15 liters when showering! Sherry , Age 64 NSIP '98, PBC '2000, Bronchiectasis '03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 Hi Sherry, good to see a post from you. Are you feeling ok? We have missed you on the chat the last few times. I hope you get the answer you want for your transplant.You seem to have a good walking schedule. I am not dispelled enough for a schedule. shame on me.. I decided a long time ago against a transplant so that question has been put to rest. Take Care of you and God Bless. Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Hi to everyone!I write this morning to update what's been happening to me the past couple of months. I've lived with pulmonary fibrosis for TEN years now. The time has come to consider a transplant. I had pneumonia a couple of times last spring & never recovered to my previous status.JOI first went through a transplant evalutation in Spring 2000 & was considered too healthy. I have autoimmune conditions, including a liver disease. I was diagnosed with NSIP with an open lung biopsy in Nov '98. A liver disease was diagnosed in 2000, but was missed during the lung transplant evaluation. You can live a very long time with this disease before considering a transplant & do OK.I have posted several times here & been on the Thursday evening phone conferences with others, but have taken a hiatus lately. Now I am trying to update the board on my conditions & status.BruceI enjoy all your info you give out. Thanks, not only for an "oldie" (yes in age too - 64) but also to reconsider things I may have missed. Since I lived near Dallas when I was evaluated the first time, I certainly know the area where you live - HOT is the name I give it! As for rehab, I still do 40 minutes 5 or 6 (try for 6) times per week. I do 2 mph using 10 liters continuous oxygen. I also lift 3 lb hand weights at least three times per week.I live in TN now & am going through a liver biopsy & ct liver scan tomorow at Vanderbilt to make sure my liver will withstand the transplant & all that will follow. The liver transplant dr thought it probably would do OK, but of course must do his medical checks. Next, the "board" must ALL approve my lung transplant in order to take the next step doing the physical evaluations.I also was very saddened to learn of Joyce's death. She was another long timer, like myself. There just aren't lots of us. She gave me several e-mails that helped. What a Christian woman she was with so much faith.I hope this helps some of you newcomers & gives you incentive to take very good care of yourself. Exercise, stay away from large crowds & small children, don't SHAKE hands (bump elbows instead), & DO NOT take any herbal medicine! It is not FDA regulated & you don't know what it might contain! Doctors have told me this more than once. Use hand sanitizer liberally.Oh, last thing, I use 1 1/2 liters sleeping & up to 15 liters (could use even more at times) when doing active things. Why the extreme variation, even the doctor doesn't know. Perhaps the good exercise routine I've always done for years now????I am just now going to try a shower chair. Why I have not done that before I don't know, as I need 15 liters when showering!Sherry , Age 64NSIP '98, PBC '2000, Bronchiectasis '03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 Sherry, I was wondering about you a coule of weeks ago and tried to find a way to get in touch with you. I am glad that you have posted what you are going through at this time. I pray that everything goes well for you with getting approved for the transplant. All of your hard work at exercising and maintaining has paid offf. Keep us all posted! Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl >> Hi to everyone!> > I write this morning to update what's been happening to me the past > couple of months. I've lived with pulmonary fibrosis for TEN years > now. The time has come to consider a transplant. I had pneumonia a > couple of times last spring & never recovered to my previous status.> > JO> > I first went through a transplant evalutation in Spring 2000 & was > considered too healthy. I have autoimmune conditions, including a > liver disease. I was diagnosed with NSIP with an open lung biopsy in > Nov '98. A liver disease was diagnosed in 2000, but was missed > during the lung transplant evaluation. You can live a very long time > with this disease before considering a transplant & do OK.> > I have posted several times here & been on the Thursday evening phone > conferences with others, but have taken a hiatus lately. Now I am > trying to update the board on my conditions & status.> > Bruce> > I enjoy all your info you give out. Thanks, not only for an "oldie" > (yes in age too - 64) but also to reconsider things I may have > missed. Since I lived near Dallas when I was evaluated the first > time, I certainly know the area where you live - HOT is the name I > give it! As for rehab, I still do 40 minutes 5 or 6 (try for 6) > times per week. I do 2 mph using 10 liters continuous oxygen. I > also lift 3 lb hand weights at least three times per week.> > I live in TN now & am going through a liver biopsy & ct liver scan > tomorow at Vanderbilt to make sure my liver will withstand the > transplant & all that will follow. The liver transplant dr thought > it probably would do OK, but of course must do his medical checks. > Next, the "board" must ALL approve my lung transplant in order to > take the next step doing the physical evaluations.> > I also was very saddened to learn of Joyce's death. She was another > long timer, like myself. There just aren't lots of us. She gave me > several e-mails that helped. What a Christian woman she was with so > much faith.> > I hope this helps some of you newcomers & gives you incentive to take > very good care of yourself. Exercise, stay away from large crowds & > small children, don't SHAKE hands (bump elbows instead), & DO NOT > take any herbal medicine! It is not FDA regulated & you don't know > what it might contain! Doctors have told me this more than once. Use > hand sanitizer liberally.> > Oh, last thing, I use 1 1/2 liters sleeping & up to 15 liters (could > use even more at times) when doing active things. Why the extreme > variation, even the doctor doesn't know. Perhaps the good exercise > routine I've always done for years now????> > I am just now going to try a shower chair. Why I have not done that > before I don't know, as I need 15 liters when showering!> > Sherry , Age 64> NSIP '98, PBC '2000, Bronchiectasis '03> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 Sherry Nice to hear from you. Also, a reminder to you and to me and to others. When was the last time you had an overnight oximeter done? As our needs increase we sometimes overlook getting this rechecked. I'm asking for one this month when I see my doctor, just to be sure. > > Hi to everyone! > > I write this morning to update what's been happening to me the past > couple of months. I've lived with pulmonary fibrosis for TEN years > now. The time has come to consider a transplant. I had pneumonia a > couple of times last spring & never recovered to my previous status. > > JO > > I first went through a transplant evalutation in Spring 2000 & was > considered too healthy. I have autoimmune conditions, including a > liver disease. I was diagnosed with NSIP with an open lung biopsy in > Nov '98. A liver disease was diagnosed in 2000, but was missed > during the lung transplant evaluation. You can live a very long time > with this disease before considering a transplant & do OK. > > I have posted several times here & been on the Thursday evening phone > conferences with others, but have taken a hiatus lately. Now I am > trying to update the board on my conditions & status. > > Bruce > > I enjoy all your info you give out. Thanks, not only for an " oldie " > (yes in age too - 64) but also to reconsider things I may have > missed. Since I lived near Dallas when I was evaluated the first > time, I certainly know the area where you live - HOT is the name I > give it! As for rehab, I still do 40 minutes 5 or 6 (try for 6) > times per week. I do 2 mph using 10 liters continuous oxygen. I > also lift 3 lb hand weights at least three times per week. > > I live in TN now & am going through a liver biopsy & ct liver scan > tomorow at Vanderbilt to make sure my liver will withstand the > transplant & all that will follow. The liver transplant dr thought > it probably would do OK, but of course must do his medical checks. > Next, the " board " must ALL approve my lung transplant in order to > take the next step doing the physical evaluations. > > I also was very saddened to learn of Joyce's death. She was another > long timer, like myself. There just aren't lots of us. She gave me > several e-mails that helped. What a Christian woman she was with so > much faith. > > I hope this helps some of you newcomers & gives you incentive to take > very good care of yourself. Exercise, stay away from large crowds & > small children, don't SHAKE hands (bump elbows instead), & DO NOT > take any herbal medicine! It is not FDA regulated & you don't know > what it might contain! Doctors have told me this more than once. Use > hand sanitizer liberally. > > Oh, last thing, I use 1 1/2 liters sleeping & up to 15 liters (could > use even more at times) when doing active things. Why the extreme > variation, even the doctor doesn't know. Perhaps the good exercise > routine I've always done for years now???? > > I am just now going to try a shower chair. Why I have not done that > before I don't know, as I need 15 liters when showering! > > Sherry , Age 64 > NSIP '98, PBC '2000, Bronchiectasis '03 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 Sherry, I'm happy to hear from you! You are like an energizer bunny, just keep going and going! I hope all goes well with your liver biopsy and tests and you get the green light for transplant. It's interesting to hear about someone else with a wide variation in O2 needs. I sleep with 2 liters, use 4-6 when up and about and 12 with a venti mask when I'm on the treadmill. It always amazes me how different we all are! Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 Transplant Evaluation Hi to everyone!I write this morning to update what's been happening to me the past couple of months. I've lived with pulmonary fibrosis for TEN years now. The time has come to consider a transplant. I had pneumonia a couple of times last spring & never recovered to my previous status.JOI first went through a transplant evalutation in Spring 2000 & was considered too healthy. I have autoimmune conditions, including a liver disease. I was diagnosed with NSIP with an open lung biopsy in Nov '98. A liver disease was diagnosed in 2000, but was missed during the lung transplant evaluation. You can live a very long time with this disease before considering a transplant & do OK.I have posted several times here & been on the Thursday evening phone conferences with others, but have taken a hiatus lately. Now I am trying to update the board on my conditions & status.BruceI enjoy all your info you give out. Thanks, not only for an "oldie" (yes in age too - 64) but also to reconsider things I may have missed. Since I lived near Dallas when I was evaluated the first time, I certainly know the area where you live - HOT is the name I give it! As for rehab, I still do 40 minutes 5 or 6 (try for 6) times per week. I do 2 mph using 10 liters continuous oxygen. I also lift 3 lb hand weights at least three times per week.I live in TN now & am going through a liver biopsy & ct liver scan tomorow at Vanderbilt to make sure my liver will withstand the transplant & all that will follow. The liver transplant dr thought it probably would do OK, but of course must do his medical checks. Next, the "board" must ALL approve my lung transplant in order to take the next step doing the physical evaluations.I also was very saddened to learn of Joyce's death. She was another long timer, like myself. There just aren't lots of us. She gave me several e-mails that helped. What a Christian woman she was with so much faith.I hope this helps some of you newcomers & gives you incentive to take very good care of yourself. Exercise, stay away from large crowds & small children, don't SHAKE hands (bump elbows instead), & DO NOT take any herbal medicine! It is not FDA regulated & you don't know what it might contain! Doctors have told me this more than once. Use hand sanitizer liberally.Oh, last thing, I use 1 1/2 liters sleeping & up to 15 liters (could use even more at times) when doing active things. Why the extreme variation, even the doctor doesn't know. Perhaps the good exercise routine I've always done for years now????I am just now going to try a shower chair. Why I have not done that before I don't know, as I need 15 liters when showering!Sherry , Age 64NSIP '98, PBC '2000, Bronchiectasis '03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 Sherry ... it is good to see a post from you! So the time has come for a transplant eval. I hope all goes as you want it too. I've missed seeing your posts. I don't post as often as I did either. Gave everyone a break from ME for awhile! How are you feeling presently??? Take care. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Transplant Evaluation SherryNice to hear from you.Also, a reminder to you and to me and to others. When was the last timeyou had an overnight oximeter done? As our needs increase we sometimesoverlook getting this rechecked. I'm asking for one this month when Isee my doctor, just to be sure.>> Hi to everyone!>> I write this morning to update what's been happening to me the past> couple of months. I've lived with pulmonary fibrosis for TEN years> now. The time has come to consider a transplant. I had pneumonia a> couple of times last spring & never recovered to my previous status.>> JO>> I first went through a transplant evalutation in Spring 2000 & was> considered too healthy. I have autoimmune conditions, including a> liver disease. I was diagnosed with NSIP with an open lung biopsy in> Nov '98. A liver disease was diagnosed in 2000, but was missed> during the lung transplant evaluation. You can live a very long time> with this disease before considering a transplant & do OK.>> I have posted several times here & been on the Thursday evening phone> conferences with others, but have taken a hiatus lately. Now I am> trying to update the board on my conditions & status.>> Bruce>> I enjoy all your info you give out. Thanks, not only for an "oldie"> (yes in age too - 64) but also to reconsider things I may have> missed. Since I lived near Dallas when I was evaluated the first> time, I certainly know the area where you live - HOT is the name I> give it! As for rehab, I still do 40 minutes 5 or 6 (try for 6)> times per week. I do 2 mph using 10 liters continuous oxygen. I> also lift 3 lb hand weights at least three times per week.>> I live in TN now & am going through a liver biopsy & ct liver scan> tomorow at Vanderbilt to make sure my liver will withstand the> transplant & all that will follow. The liver transplant dr thought> it probably would do OK, but of course must do his medical checks.> Next, the "board" must ALL approve my lung transplant in order to> take the next step doing the physical evaluations.>> I also was very saddened to learn of Joyce's death. She was another> long timer, like myself. There just aren't lots of us. She gave me> several e-mails that helped. What a Christian woman she was with so> much faith.>> I hope this helps some of you newcomers & gives you incentive to take> very good care of yourself. Exercise, stay away from large crowds & > small children, don't SHAKE hands (bump elbows instead), & DO NOT> take any herbal medicine! It is not FDA regulated & you don't know> what it might contain! Doctors have told me this more than once. Use> hand sanitizer liberally.>> Oh, last thing, I use 1 1/2 liters sleeping & up to 15 liters (could> use even more at times) when doing active things. Why the extreme> variation, even the doctor doesn't know. Perhaps the good exercise> routine I've always done for years now????>> I am just now going to try a shower chair. Why I have not done that> before I don't know, as I need 15 liters when showering!>> Sherry , Age 64> NSIP '98, PBC '2000, Bronchiectasis '03> Quote Link to comment Share on other sites More sharing options...
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