Guest guest Posted May 18, 2008 Report Share Posted May 18, 2008 It amazes me as I read through the posts at how different this monster effects us.When I was diagnosied my diffusion was at 42%. For two years I was stable. I was put on prednisone and immuran,o2 before I left the hospital. I have been to so many pul.drs. I want to throw in the towel. Last year my dif. dropped to 38%. I had already been off immuram and was instructed to lower my prednisone because of oustiporosis. I kept having chronic sinus infections the whole time I was decreasing so finally Isaid screw it I am not lowering it any more. After 20 days on antibiotics I have no sinus infection. Yea " Had pft done on may 8 and diffusion is now at 28% and I am back on immuran. The drs. have never tried any other drugs or prescribed pulmuanry rehab, one of them told me it doesn't help pf patients.I have a bad addiction to tobacco and am a medicare/medicaid pt. I have never seen transplant as an option since i have connective tissue order and truley believe even if I qualified with my ins.I wouldn't be a high priority.I am sorry this is so long but I am just so angry, the difference in my care since I went from my cobra to medicaid is night and day. I am trying very hard to get my mind back in the game. For those of you who have support systems give your loved ones a hug. I live alone and at times like this I would love to get a hug. I am going to stop my pitty party now and work on fighting this beast.We 5hall over come. thanks for listening Kathy53/dg10/04/In Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2008 Report Share Posted May 19, 2008 > > It amazes me as I read through the posts at how different this monster > effects us.When I was diagnosied my diffusion was at 42%. For two years > I was stable. I was put on prednisone and immuran,o2 before I left the > hospital. I have been to so many pul.drs. I want to throw in the towel. > Last year my dif. dropped to 38%. I had already been off immuram and > was instructed to lower my prednisone because of oustiporosis. I kept > having chronic sinus infections the whole time I was decreasing so > finally Isaid screw it I am not lowering it any more. After 20 days on > antibiotics I have no sinus infection. Yea " Had pft done on may 8 and > diffusion is now at 28% and I am back on immuran. The drs. have never > tried any other drugs or prescribed pulmuanry rehab, one of them told > me it doesn't help pf patients.I have a bad addiction to tobacco and am > a medicare/medicaid pt. I have never seen transplant as an option since > i have connective tissue order and truley believe even if I qualified > with my ins.I wouldn't be a high priority.I am sorry this is so long > but I am just so angry, the difference in my care since I went from my > cobra to medicaid is night and day. I am trying very hard to get my > mind back in the game. For those of you who have support systems give > your loved ones a hug. I live alone and at times like this I would love > to get a hug. I am going to stop my pitty party now and work on > fighting this beast.We 5hall over come. thanks for listening > Kathy53/dg10/04/In > hi Kathy53/ i just wanted to say thank you for venting. i feel that is all i do i come on line when im down and vent. but i know there is more to me than that. It's just i like you live alone. and i truely believe it is really hard having no one to talk to..i do have loved ones and friends they just refuse to let me speak of it. and when your as sick as i am sometimes you just need to talk even if know one is listening. Thats how i feel with being online. but i do know someone is listening. ..and right now im listening to you. God Bless you and your needs for one more day.. with much love and understanding.. janet54/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2008 Report Share Posted May 19, 2008 Kathy S....I'm no help with the 'numbers' but want you to know I empathize with the stress you are feeling. As Beth said, you sure can vent to us. How far away is family from you? Do you have phone contact with anyone in your family? A good friend? A Pastor? Maybe even a counselor to support you....... I want to join Beth in encouraging you to try to stop smoking. You already know the dangers and the harm you are adding to your body and I don't want to preach. I'm supposing a transplant will be out of the question as long as you smoke..... Vent more if it will help you clear your mind and come to whatever decisions you are trying to make. I was on Cobra and I know the care is different for sure. I'm not on Medicaid but on Medicare. Kathie, what specifically is your greatest stress right now? Can we help? A HUGE MamaSher hug to you! Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! VENTING It amazes me as I read through the posts at how different this monster effects us.When I was diagnosied my diffusion was at 42%. For two years I was stable. I was put on prednisone and immuran,o2 before I left the hospital. I have been to so many pul.drs. I want to throw in the towel. Last year my dif. dropped to 38%. I had already been off immuram and was instructed to lower my prednisone because of oustiporosis. I kept having chronic sinus infections the whole time I was decreasing so finally Isaid screw it I am not lowering it any more. After 20 days on antibiotics I have no sinus infection. Yea" Had pft done on may 8 and diffusion is now at 28% and I am back on immuran. The drs. have never tried any other drugs or prescribed pulmuanry rehab, one of them told me it doesn't help pf patients.I have a bad addiction to tobacco and am a medicare/medicaid pt. I have never seen transplant as an option since i have connective tissue order and truley believe even if I qualified with my ins.I wouldn't be a high priority.I am sorry this is so long but I am just so angry, the difference in my care since I went from my cobra to medicaid is night and day. I am trying very hard to get my mind back in the game. For those of you who have support systems give your loved ones a hug. I live alone and at times like this I would love to get a hug. I am going to stop my pitty party now and work on fighting this beast.We 5hall over come. thanks for listeningKathy53/dg10/ 04/In Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2008 Report Share Posted May 19, 2008 Hi Kathy S, My husband is the patient here and he is computer illiterate and so I post for him. Don't ask about rehab, tell him you want it. Don has not been able to go as much as he should, but with the few times he has been able to go, I've seen improvement in his frame of mind and his ability to do things. It is not dramatic but little steps. K IllinoisSher Bauman wrote: Kathy S....I'm no help with the 'numbers' but want you to know I empathize with the stress you are feeling. As Beth said, you sure can vent to us. How far away is family from you? Do you have phone contact with anyone in your family? A good friend? A Pastor? Maybe even a counselor to support you....... I want to join Beth in encouraging you to try to stop smoking. You already know the dangers and the harm you are adding to your body and I don't want to preach. I'm supposing a transplant will be out of the question as long as you smoke..... Vent more if it will help you clear your mind and come to whatever decisions you are trying to make. I was on Cobra and I know the care is different for sure. I'm not on Medicaid but on Medicare. Kathie, what specifically is your greatest stress right now? Can we help? A HUGE MamaSher hug to you! Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! VENTING It amazes me as I read through the posts at how different this monster effects us.When I was diagnosied my diffusion was at 42%. For two years I was stable. I was put on prednisone and immuran,o2 before I left the hospital. I have been to so many pul.drs. I want to throw in the towel. Last year my dif. dropped to 38%. I had already been off immuram and was instructed to lower my prednisone because of oustiporosis. I kept having chronic sinus infections the whole time I was decreasing so finally Isaid screw it I am not lowering it any more. After 20 days on antibiotics I have no sinus infection. Yea" Had pft done on may 8 and diffusion is now at 28% and I am back on immuran. The drs. have never tried any other drugs or prescribed pulmuanry rehab, one of them told me it doesn't help pf patients.I have a bad addiction to tobacco and am a medicare/medicaid pt. I have never seen transplant as an option since i have connective tissue order and truley believe even if I qualified with my ins.I wouldn't be a high priority.I am sorry this is so long but I am just so angry, the difference in my care since I went from my cobra to medicaid is night and day. I am trying very hard to get my mind back in the game. For those of you who have support systems give your loved ones a hug. I live alone and at times like this I would love to get a hug. I am going to stop my pitty party now and work on fighting this beast.We 5hall over come. thanks for listeningKathy53/dg10/ 04/In K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2008 Report Share Posted May 19, 2008 Stop smoking alone will make you feel much better. Steve 60 from WA IPF 2006 Parkinsons 2008 Alzheimers 2008 Reply-To: Breathe-Support To: Breathe-Support Subject: VENTINGDate: Mon, 19 May 2008 04:27:58 -0000 It amazes me as I read through the posts at how different this monster effects us.When I was diagnosied my diffusion was at 42%. For two years I was stable. I was put on prednisone and immuran,o2 before I left the hospital. I have been to so many pul.drs. I want to throw in the towel. Last year my dif. dropped to 38%. I had already been off immuram and was instructed to lower my prednisone because of oustiporosis. I kept having chronic sinus infections the whole time I was decreasing so finally Isaid screw it I am not lowering it any more. After 20 days on antibiotics I have no sinus infection. Yea" Had pft done on may 8 and diffusion is now at 28% and I am back on immuran. The drs. have never tried any other drugs or prescribed pulmuanry rehab, one of them told me it doesn't help pf patients.I have a bad addiction to tobacco and am a medicare/medicaid pt. I have never seen transplant as an option since i have connective tissue order and truley believe even if I qualified with my ins.I wouldn't be a high priority.I am sorry this is so long but I am just so angry, the difference in my care since I went from my cobra to medicaid is night and day. I am trying very hard to get my mind back in the game. For those of you who have support systems give your loved ones a hug. I live alone and at times like this I would love to get a hug. I am going to stop my pitty party now and work on fighting this beast.We 5hall over come. thanks for listeningKathy53/dg10/04/In Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2008 Report Share Posted May 20, 2008 Kathy, If you have doctors who show no interest in your survival, it tends to take your will to fight away. I have been there. I now find doctors who are ready to fight this monster, if only for quality of life. Rehab is so important, especially for PF patients. It gives us hope and teaches us how to breathe more effectively. If you live where there are choices, find a pulmonologist who does not have a defeatist attitude. Then find a rehab where the nurses, etc. are familiar with restrictive diseases of the lungs. Not only is it important to move so that the extremeties get blood that carries oxygen, they have programs and advice to help with your addiction to tobacco. You have a life to live. Take charge....make it happen. Don't let lazy docs and addiction suck years of life from you. Get mad, get active! Live! Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16>> It amazes me as I read through the posts at how different this monster > effects us.When I was diagnosied my diffusion was at 42%. For two years > I was stable. I was put on prednisone and immuran,o2 before I left the > hospital. I have been to so many pul.drs. I want to throw in the towel. > Last year my dif. dropped to 38%. I had already been off immuram and > was instructed to lower my prednisone because of oustiporosis. I kept > having chronic sinus infections the whole time I was decreasing so > finally Isaid screw it I am not lowering it any more. After 20 days on > antibiotics I have no sinus infection. Yea" Had pft done on may 8 and > diffusion is now at 28% and I am back on immuran. The drs. have never > tried any other drugs or prescribed pulmuanry rehab, one of them told > me it doesn't help pf patients.I have a bad addiction to tobacco and am > a medicare/medicaid pt. I have never seen transplant as an option since > i have connective tissue order and truley believe even if I qualified > with my ins.I wouldn't be a high priority.I am sorry this is so long > but I am just so angry, the difference in my care since I went from my > cobra to medicaid is night and day. I am trying very hard to get my > mind back in the game. For those of you who have support systems give > your loved ones a hug. I live alone and at times like this I would love > to get a hug. I am going to stop my pitty party now and work on > fighting this beast.We 5hall over come. thanks for listening> Kathy53/dg10/04/In> 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.