Guest guest Posted February 26, 2009 Report Share Posted February 26, 2009 Hang in there, remember life is what happens when you have other plans. It could be worse....you could be President!(Yikes) Yesterdays Doc apt was not very encouraging. My PFT was down from the last one three months ago My Doctor is concerned that I am declining so fast and Instead of cutting me off of the Predazone like I thought because it seemed to be not working he wants to double it when I asked why he said I was out of options. I am so tired of this disease!!!!! Its never predictable and there is so much we just don’t know. I do know that I am tired!! Thanks all Take care Walt Nsip,uip,IPF 06 Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, " I will try again tomorrow.” -- Dyane L. BillingsSenior Staff AccountantBall & McGraw P.C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2009 Report Share Posted February 26, 2009 Hang in there, remember life is what happens when you have other plans. It could be worse....you could be President!(Yikes) Yesterdays Doc apt was not very encouraging. My PFT was down from the last one three months ago My Doctor is concerned that I am declining so fast and Instead of cutting me off of the Predazone like I thought because it seemed to be not working he wants to double it when I asked why he said I was out of options. I am so tired of this disease!!!!! Its never predictable and there is so much we just don’t know. I do know that I am tired!! Thanks all Take care Walt Nsip,uip,IPF 06 Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, " I will try again tomorrow.” -- Dyane L. BillingsSenior Staff AccountantBall & McGraw P.C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2009 Report Share Posted February 26, 2009 WALT, I AM SO SORRY TO HEAR YOUR BAD NEWS. I AM PRAYING FOR YOU NOW. GOD BLESS, GINNY Yesterdays Doc apt was not very encouraging. My PFT was down from the last one three months ago My Doctor is concerned that I am declining so fast and Instead of cutting me off of the Predazone like I thought because it seemed to be not working he wants to double it when I asked why he said I was out of options. I am so tired of this disease!!!!! Its never predictable and there is so much we just don’t know. I do know that I am tired!! Thanks all Take care Walt Nsip,uip,IPF 06 Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.†-- Dyane L. BillingsSenior Staff AccountantBall & McGraw P.C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2009 Report Share Posted February 26, 2009 WALT, I AM SO SORRY TO HEAR YOUR BAD NEWS. I AM PRAYING FOR YOU NOW. GOD BLESS, GINNY Yesterdays Doc apt was not very encouraging. My PFT was down from the last one three months ago My Doctor is concerned that I am declining so fast and Instead of cutting me off of the Predazone like I thought because it seemed to be not working he wants to double it when I asked why he said I was out of options. I am so tired of this disease!!!!! Its never predictable and there is so much we just don’t know. I do know that I am tired!! Thanks all Take care Walt Nsip,uip,IPF 06 Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.†-- Dyane L. BillingsSenior Staff AccountantBall & McGraw P.C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2009 Report Share Posted February 26, 2009 Walt, I'm so sorry about your latest test results. I do understand how tired one gets of all this. Don't give up the ship, we all fight this battle one day at a time. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Lung <Breathe-Support >Sent: Thursday, February 26, 2009 3:49:36 PMSubject: Latest doc apt Yesterdays Doc apt was not very encouraging. My PFT was down from the last one three months ago My Doctor is concerned that I am declining so fast and Instead of cutting me off of the Predazone like I thought because it seemed to be not working he wants to double it when I asked why he said I was out of options. I am so tired of this disease!!!!! Its never predictable and there is so much we just don’t know. I do know that I am tired!! Thanks all Take care Walt Nsip,uip,IPF 06 Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.” Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2009 Report Share Posted February 26, 2009 Walt, I'm so sorry about your latest test results. I do understand how tired one gets of all this. Don't give up the ship, we all fight this battle one day at a time. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Lung <Breathe-Support >Sent: Thursday, February 26, 2009 3:49:36 PMSubject: Latest doc apt Yesterdays Doc apt was not very encouraging. My PFT was down from the last one three months ago My Doctor is concerned that I am declining so fast and Instead of cutting me off of the Predazone like I thought because it seemed to be not working he wants to double it when I asked why he said I was out of options. I am so tired of this disease!!!!! Its never predictable and there is so much we just don’t know. I do know that I am tired!! Thanks all Take care Walt Nsip,uip,IPF 06 Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.” Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2009 Report Share Posted February 26, 2009  Walt...I sure hear your frustration. It would be easier if there were some predictability or some planning possible. I've had progression in the last 3 mo. too Walt. I'm sorry for both of us. Guess we both need to be sure we have taken care of all the the things that are important to us and then get on with enjoying what's left. I've never felt prednisone was much of an 'option' from the get go but hang on here with the rest of us. It is what it is and today needs a little 'Courage'...maybe not a roar but at least knowing I'll try again tomorrow. Both of us friend. Hugs MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Latest doc apt Yesterdays Doc apt was not very encouraging. My PFT was down from the last one three months ago My Doctor is concerned that I am declining so fast and Instead of cutting me off of the Predazone like I thought because it seemed to be not working he wants to double it when I asked why he said I was out of options. I am so tired of this disease!!!!! Its never predictable and there is so much we just don’t know. I do know that I am tired!! Thanks all Take care Walt Nsip,uip,IPF 06 Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.†Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2009 Report Share Posted February 26, 2009  Walt...I sure hear your frustration. It would be easier if there were some predictability or some planning possible. I've had progression in the last 3 mo. too Walt. I'm sorry for both of us. Guess we both need to be sure we have taken care of all the the things that are important to us and then get on with enjoying what's left. I've never felt prednisone was much of an 'option' from the get go but hang on here with the rest of us. It is what it is and today needs a little 'Courage'...maybe not a roar but at least knowing I'll try again tomorrow. Both of us friend. Hugs MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Latest doc apt Yesterdays Doc apt was not very encouraging. My PFT was down from the last one three months ago My Doctor is concerned that I am declining so fast and Instead of cutting me off of the Predazone like I thought because it seemed to be not working he wants to double it when I asked why he said I was out of options. I am so tired of this disease!!!!! Its never predictable and there is so much we just don’t know. I do know that I am tired!! Thanks all Take care Walt Nsip,uip,IPF 06 Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.†Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2009 Report Share Posted February 26, 2009 Walt, I am so sorry you had the bad news and feel so tired. I wish I could do something other than wish you peace and a prayer. Margaret To: Lung <Breathe-Support >Sent: Thursday, February 26, 2009 11:49:36 AMSubject: Latest doc apt Yesterdays Doc apt was not very encouraging. My PFT was down from the last one three months ago My Doctor is concerned that I am declining so fast and Instead of cutting me off of the Predazone like I thought because it seemed to be not working he wants to double it when I asked why he said I was out of options. I am so tired of this disease!!!!! Its never predictable and there is so much we just don’t know. I do know that I am tired!! Thanks all Take care Walt Nsip,uip,IPF 06 Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.†Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2009 Report Share Posted February 26, 2009 Walt Would you have expected them down based on your saturation and oxygen requirements? If so, then I'm sorry to hear that. But if it was unexpected then don't put too much weight on one set of PFT's. I had a set in February 08 that had they been the true picture I'd be long dead by now. > > Yesterdays Doc apt was not very encouraging. My PFT was down from the last one three months ago My Doctor is concerned that I am declining so fast and Instead of cutting me off of the Predazone like I thought because it seemed to be not working he wants to double it when I asked why he said I was out of options. I am so tired of this disease!!!!!  Its never predictable and there is so much we just don’t know. I do know that I am tired!! > Thanks all > Take care > Walt > Nsip,uip,IPF 06  > > > > > > Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, " I will try again tomorrow.†> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2009 Report Share Posted February 26, 2009 Walt, I wish you had had a more encouraging visit. It seems the deeper we get in this disease the more disappointing news we recieve. Sometimes after a doctor's visit I won't talk to anyone for days. It was a little over a year ago that my pulmodude from Mayo discovered Prednisone and Cellcept were not working for me. In fact I had more progression during that time than any other time since diagnosis. He suggested the idea of other similar medications with the idea that they may have less side effects. In the end he, my husband and I felt more comfortable tapering off the 2 meds and follow up in 3 months before trying anything new. At my next visit to review my latest studies we had found that my PFT numbers had gotten better and my CT showed minimal progression of scarring. I was happy that I pushed to discontinue the meds. Every patient is different and not every decision is right for one that is right for another.If you feel doubling the prednisone is right for you and worth a try then great. If you are not comfortable with it then make sure to tell the doc. We have to advocate for oursleves. I'll keep you in my prayers and hope that your progression slows or stablizes. Better Breathing to You, 33 FL IPF dx 1/06 > > Yesterdays Doc apt was not very encouraging. My PFT was down from the last one three months ago My Doctor is concerned that I am declining so fast and Instead of cutting me off of the Predazone like I thought because it seemed to be not working he wants to double it when I asked why he said I was out of options. I am so tired of this disease!!!!!  Its never predictable and there is so much we just don’t know. I do know that I am tired!! > Thanks all > Take care > Walt > Nsip,uip,IPF 06  > > > > > > Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, " I will try again tomorrow.†> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2009 Report Share Posted February 26, 2009 YOU are why this board works!! Today was a long day but the encouragement was a real Godsend. Most days I do pretty well but my plate was full and I just didn't’t want to have yet more unknowns. I got this quote from my 16 year old son today and decided that tomorrow I will try again. Man can live about forty days without food, about three days without water, about eight minutes without air, but only for one second without hope†Thank you all you make a differance Walt Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.†Subject: Re: Latest doc aptTo: Breathe-Support Date: Thursday, February 26, 2009, 4:05 PM Walt, I wish you had had a more encouraging visit. It seems the deeper we get in this disease the more disappointing news we recieve. Sometimes after a doctor's visit I won't talk to anyone for days. It was a little over a year ago that my pulmodude from Mayo discovered Prednisone and Cellcept were not working for me. In fact I had more progression during that time than any other time since diagnosis. He suggested the idea of other similar medications with the idea that they may have less side effects. In the end he, my husband and I felt more comfortable tapering off the 2 meds and follow up in 3 months before trying anything new. At my next visit to review my latest studies we had found that my PFT numbers had gotten better and my CT showed minimal progression of scarring. I was happy that I pushed to discontinue the meds.Every patient is different and not every decision is right for one that is right for another.If you feel doubling the prednisone is right for you and worth a try then great. If you are not comfortable with it then make sure to tell the doc. We have to advocate for oursleves. I'll keep you in my prayers and hope that your progression slows or stablizes.Better Breathing to You, 33 FLIPF dx 1/06>> Yesterdays Doc apt was not very encouraging. My PFT was down from the last one three months ago My Doctor is concerned that I am declining so fast and Instead of cutting me off of the Predazone like I thought because it seemed to be not working he wants to double it when I asked why he said I was out of options. I am so tired of this disease!!!!! Its never predictable and there is so much we just don’t know. I do know that I am tired!!> Thanks all> Take care> Walt> Nsip,uip,IPF 06 > > > > > > Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.â€> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2009 Report Share Posted February 26, 2009 YOU are why this board works!! Today was a long day but the encouragement was a real Godsend. Most days I do pretty well but my plate was full and I just didn't’t want to have yet more unknowns. I got this quote from my 16 year old son today and decided that tomorrow I will try again. Man can live about forty days without food, about three days without water, about eight minutes without air, but only for one second without hope†Thank you all you make a differance Walt Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.†Subject: Re: Latest doc aptTo: Breathe-Support Date: Thursday, February 26, 2009, 4:05 PM Walt, I wish you had had a more encouraging visit. It seems the deeper we get in this disease the more disappointing news we recieve. Sometimes after a doctor's visit I won't talk to anyone for days. It was a little over a year ago that my pulmodude from Mayo discovered Prednisone and Cellcept were not working for me. In fact I had more progression during that time than any other time since diagnosis. He suggested the idea of other similar medications with the idea that they may have less side effects. In the end he, my husband and I felt more comfortable tapering off the 2 meds and follow up in 3 months before trying anything new. At my next visit to review my latest studies we had found that my PFT numbers had gotten better and my CT showed minimal progression of scarring. I was happy that I pushed to discontinue the meds.Every patient is different and not every decision is right for one that is right for another.If you feel doubling the prednisone is right for you and worth a try then great. If you are not comfortable with it then make sure to tell the doc. We have to advocate for oursleves. I'll keep you in my prayers and hope that your progression slows or stablizes.Better Breathing to You, 33 FLIPF dx 1/06>> Yesterdays Doc apt was not very encouraging. My PFT was down from the last one three months ago My Doctor is concerned that I am declining so fast and Instead of cutting me off of the Predazone like I thought because it seemed to be not working he wants to double it when I asked why he said I was out of options. I am so tired of this disease!!!!! Its never predictable and there is so much we just don’t know. I do know that I am tired!!> Thanks all> Take care> Walt> Nsip,uip,IPF 06 > > > > > > Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.â€> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2009 Report Share Posted February 27, 2009 Walt, sorry to hear about your recent doc appt Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Latest doc aptTo: "Lung" <Breathe-Support >Date: Thursday, February 26, 2009, 3:49 PM Yesterdays Doc apt was not very encouraging. My PFT was down from the last one three months ago My Doctor is concerned that I am declining so fast and Instead of cutting me off of the Predazone like I thought because it seemed to be not working he wants to double it when I asked why he said I was out of options. I am so tired of this disease!!!!! Its never predictable and there is so much we just don’t know. I do know that I am tired!! Thanks all Take care Walt Nsip,uip,IPF 06 Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.†Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.