Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 I missed the chat but do always enjoy them. If you have the chance to meet forum members, please take advantage. It's very special. Let's see now....who have I had the pleasure of meeting-I'm working toward everyone. Gwynne-my first and so special. I can't wait to see you again. Leanne (and Mike)-my Lojack friend. She's insanely wonderful. Wally (and huge family and so many friends). What an experience seeing the support of an entire community. I don't know how many dollars were raised but immeasurable awareness was. S. (and friends and Torona). I hope you're doing ok and I have been expressing my care through . Thank her for making me aware. Peggy (and ). Oh Ms. Hug Hug Hug. What a beautiful lady and gentle giant husband. Jane (and Eddie). What a kind hearted battler you are. Jon (and Teri). Thinking of your tests and you, Jon. Knowing how difficult things are right now for both of you. Wanting to hug Teri too. (and family). Just as beautiful, full of live and insane as I expected. Gordon (and wife). Wherever you are now hope your travels are still going fine. Beth. It was so nice having lunch with you, just to talk face to face. Three more on the caregiver side in San . Thanks for letting us share the joy of San with you. It was such a pleasure to meet you and wish your husbands could have been there too. Hope I didn't overlook anyone but, if so, I'm oxygen deprived, not old and senile....lol > > Last evening was my first time doing the Thursday evening chat. I want to tell everyone just how helpful this was for me. I have never " talked " to anyone else who is suffering from this terrible disease. Well, a couple at rehab, but just a passing conversation. Neither person wanted to talk very long or in-depth, perhaps in denial??? > Thank you all for your welcome - Beth, Peggy, Lou, Jane, Mama Sher (was there last evening, but all too briefly!). I hope to be able to contribute more as I get better acquainted with everyone. > As I said last evening, I am a TEN year survivor of this disease (NSIP). I've mostly done this by hit and miss technique. I know you learn how to LIVE with the disease from other patients. Already, I've learned several things from the rest of you on the board. > I was diagnosed in SO CA, moved to Texas, evaluated for a transplant at Southwestern Univ of Texas in Dallas in April 2000 (but declared too healthy at that time), moved to near Knoxville, TN, in Dec '2002 and go now to Vanderbilt in Nashville. > After having pneumonia a couple of times in Feb and March of this year, I've taken a downturn and now may be faced whether to once again be evaulated for a transplant in the fall. Your input will greatly help in my decision. Perhaps, though, with work/time/rehab I will once again respond to the upping of Prednisone and be able to avoid the decision. > Sherry , NSIP '98, Bronchiectasis, Pulmonary Biliary Cirrhosis (autoimmune disease) and mild Pulmonary Hypertension '2008 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 Hi Sherry... nice putting a voice to the post. Wow, 10 years out! That really gives hope. I'm out past 2 years and stable. You still deal with a lot. I hope you are feeling ok and not down sick. I'm too old (70 in Aug) for transplant and would not do it anyway. I have too many other health problems. Take care. MamaSher, age 69. IPF 3-06, OR.Don't fret about tomorrow, God is already there! Thursday's Chat Last evening was my first time doing the Thursday evening chat. I want to tell everyone just how helpful this was for me. I have never "talked" to anyone else who is suffering from this terrible disease. Well, a couple at rehab, but just a passing conversation. Neither person wanted to talk very long or in-depth, perhaps in denial??? Thank you all for your welcome - Beth, Peggy, Lou, Jane, Mama Sher (was there last evening, but all too briefly!). I hope to be able to contribute more as I get better acquainted with everyone. As I said last evening, I am a TEN year survivor of this disease (NSIP). I've mostly done this by hit and miss technique. I know you learn how to LIVE with the disease from other patients. Already, I've learned several things from the rest of you on the board. I was diagnosed in SO CA, moved to Texas, evaluated for a transplant at Southwestern Univ of Texas in Dallas in April 2000 (but declared too healthy at that time), moved to near Knoxville, TN, in Dec '2002 and go now to Vanderbilt in Nashville. After having pneumonia a couple of times in Feb and March of this year, I've taken a downturn and now may be faced whether to once again be evaulated for a transplant in the fall. Your input will greatly help in my decision. Perhaps, though, with work/time/rehab I will once again respond to the upping of Prednisone and be able to avoid the decision. Sherry , NSIP '98, Bronchiectasis, Pulmonary Biliary Cirrhosis (autoimmune disease) and mild Pulmonary Hypertension '2008 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 Sherry, It was so nice to hear your voice last night. I hope you post more frequently so we get to know you a bit better. Tell us a little more about you. God Bless. Peggy, ipf 6/04 Florida Happy moments, praise God.Difficult moments, seek God.Quiet moments, worship God.Painful moments, trust God.Every moment, thank God. Last evening was my first time doing the Thursday evening chat. I want to tell everyone just how helpful this was for me. I have never "talked" to anyone else who is suffering from this terrible disease. Well, a couple at rehab, but just a passing conversation. Neither person wanted to talk very long or in-depth, perhaps in denial??? Thank you all for your welcome - Beth, Peggy, Lou, Jane, Mama Sher (was there last evening, but all too briefly!). I hope to be able to contribute more as I get better acquainted with everyone. As I said last evening, I am a TEN year survivor of this disease (NSIP). I've mostly done this by hit and miss technique. I know you learn how to LIVE with the disease from other patients. Already, I've learned several things from the rest of you on the board. I was diagnosed in SO CA, moved to Texas, evaluated for a transplant at Southwestern Univ of Texas in Dallas in April 2000 (but declared too healthy at that time), moved to near Knoxville, TN, in Dec '2002 and go now to Vanderbilt in Nashville. After having pneumonia a couple of times in Feb and March of this year, I've taken a downturn and now may be faced whether to once again be evaulated for a transplant in the fall. Your input will greatly help in my decision. Perhaps, though, with work/time/rehab I will once again respond to the upping of Prednisone and be able to avoid the decision. Sherry , NSIP '98, Bronchiectasis, Pulmonary Biliary Cirrhosis (autoimmune disease) and mild Pulmonary Hypertension '2008 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2008 Report Share Posted June 7, 2008 Thanks, Peggy, for the welcome. Well, a little more about myself...hmmm I didn't sign my age - 64, so was diagnosed when I was 54 with an Open Lung Biopsy in SO CA. I did have a difficult time getting the diagnosis of the liver disease. A rheumatologist in Texas finally correctly diagnosed me AFTER the lung transplant evaluation where the GI dr missed it! The pulmonary dr told me I had autoimmune diseases and referred me to the rheumatologist in the same building. Thankfully, he stabilized me and I did great until this past spring when I got pneumonia. I am doing better with upping the Prednisone again to 20Mg along with the usual Imuran at 200 mg. Slowly, 1 mg at a time every two weeks, I am coming down and so far still improving. I am hoping that I'll once again avoid a decision on the transplant. Hope to " chat " again next time. Sherry NSIP, Bronchiectasis, PAH & PBC (autoimmune cholangitis) > > > Last evening was my first time doing the Thursday evening chat. I > want to tell everyone just how helpful this was for me. I have never > " talked " to anyone else who is suffering from this terrible disease. > Well, a couple at rehab, but just a passing conversation. Neither > person wanted to talk very long or in-depth, perhaps in denial??? > > Thank you all for your welcome - Beth, Peggy, Lou, Jane, > Mama Sher (was there last evening, but all too briefly!). I hope to > be able to contribute more as I get better acquainted with everyone. > > As I said last evening, I am a TEN year survivor of this disease > (NSIP). I've mostly done this by hit and miss technique. I know you > learn how to LIVE with the disease from other patients. Already, > I've learned several things from the rest of you on the board. > > I was diagnosed in SO CA, moved to Texas, evaluated for a transplant > at Southwestern Univ of Texas in Dallas in April 2000 (but declared > too healthy at that time), moved to near Knoxville, TN, in Dec '2002 > and go now to Vanderbilt in Nashville. > > After having pneumonia a couple of times in Feb and March of this > year, I've taken a downturn and now may be faced whether to once > again be evaulated for a transplant in the fall. Your input will > greatly help in my decision. Perhaps, though, with work/time/rehab I > will once again respond to the upping of Prednisone and be able to > avoid the decision. > > Sherry , NSIP '98, Bronchiectasis, Pulmonary Biliary Cirrhosis > (autoimmune disease) and mild Pulmonary Hypertension '2008 > Quote Link to comment Share on other sites More sharing options...
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