Guest guest Posted March 13, 2006 Report Share Posted March 13, 2006 Leanne- I read your note and noticed that you are possilby being considered for a lung transplant? Where will you have it done? I have a cousin who went in about 4 years ago to the University Hospital in Seattle to have one lung replaced and they ended up giving him two. He is doing soooooooooo much better than before his surgery. He is off of supplemental oxygen and is even working in his yard!!! He could hardly get out of his chair before the surgery. I think that now they are more of a " almost routine " operation and are very successful. He goes to a support group for meetings which he said has really helped him. Hope this helps to ease your fears a little. Love, Ronnie p.s. If you are not on medicare yet I was told to wait until you are on it to have the surgery. If on medicare before the surgery, then they will pay for it and the medicenes afterwards. If you aren't on medicare before and go on it after the surgery they will not pay for anything. Don't know if this is true but it's someting to look into. --- Breathe-Support wrote: > There are 3 messages in this issue. > > Topics in this digest: > > 1. Re: other trials > From: jltitus@... > 2. (unknown) > > 3. Mea Culpa > From: " Leanne " > > > > ________________________________________________________________________ > ________________________________________________________________________ > > Message: 1 > Date: Sat, 11 Mar 2006 21:40:53 +0000 > From: jltitus@... > Subject: Re: other trials > > > Arlen > Let me know how it goes when on full strength. I > have a friend that had no side effects and he was on > the real thing. > > Jan > > -------------- Original message -------------- > From: sarleno@... > > > > > > > > > Arlen > I have been on Actimmune for 2 1/2 years. The side > effects I get are chills and achy joints--but they > have gotten much better since I first started the > injections. My side effects were not really > noticable until I was on full dose. > Jan > Jan, > Thanks for the info. I started on the full dose > injections this week, so time will tell. > > Arlen > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2006 Report Share Posted March 13, 2006 Leanne, I understand from your posting that they put you on Prednisone after transplant surgery? From what I've heard from others in this support group, that doesn't sound good at all. Like you, I'm going to the U of Chicago, am too young for Medicare, and still work full time. I work in a steel mill, so will have to quit working if put on oxygen. Too hazardous to drag around with all the red-hot steel around. I plan to quit at that point, and try for S.S. disability. I'm scheduled for an overnight "sleep test" tomorrow, to help determine if I need the oxygen. I wonder if I should rest up for the test? Arlen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2006 Report Share Posted March 13, 2006 Arlen, I took that sleep test and my Pul. Dr advised me to rest up for it, due to stress or being over tired will cause restless sleep, and the readings won't be good. Nothing to it tho, just hooked up to alot of leads...ans sleeping in a different place. Good luck and sweet dreams. ~Ginger~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2006 Report Share Posted March 13, 2006 Dear Ronnie, Thanks for the support. I'm going to University of Chicago Hospital. My lung transplant doctor just transferred over there. I've been seeing him since I was diagnosed 3 years ago. Unfortunately, I don't qualify for medicare. I'm not on social security because thankfully, I'm still able to work a full schedule and I'm only 47. The after transplant drugs are what kinda scare me. Going back on prednisone kinda scares me. I have two friends who have had a double lung transplant - one who is 6 years out and "hustles up the Hancock" and one who is 64 years old and just had his transplant Feb. 14. It's very amazing to me. Thanks for sharing the story about your cousin. His quality of life sure sounds as if it improved. I had to smile when you said "it's almost routine". My one friend who just had his transplant said the biopsy surgery pain was Worse! I thought the biopsy was the worst surgery I had ever gone through. So, that's not too bad if the transplant will be less pain! Oh well, I'm going to have lots of time to worry myself about this. LeanneJerome Tuss wrote: Leanne-I read your note and noticed that you are possilbybeing considered for a lung transplant? Where willyou have it done? I have a cousin who went in about 4years ago to the University Hospital in Seattle tohave one lung replaced and they ended up giving himtwo. He is doing soooooooooo much better than beforehis surgery. He is off of supplemental oxygen and iseven working in his yard!!! He could hardly get outof his chair before the surgery. I think that nowthey are more of a "almost routine" operation and arevery successful. He goes to a support group formeetings which he said has really helped him. Hopethis helps to ease your fears a little. Love, Ronnie p.s. If you are not on medicare yet I was told to waituntil you are on it to have the surgery. If onmedicare before the surgery, then they will pay for itand the medicenes afterwards. If you aren't onmedicare before and go on it after the surgery theywill not pay for anything. Don't know if this is truebut it's someting to look into. --- Breathe-Support wrote:> There are 3 messages in this issue.> > Topics in this digest:> > 1. Re: other trials> 2. (unknown)> > 3. Mea Culpa> > > >________________________________________________________________________>________________________________________________________________________> > Message: 1 > Date: Sat, 11 Mar 2006 21:40:53 +0000> Subject: Re: other trials> > > Arlen> Let me know how it goes when on full strength. I> have a friend that had no side effects and he was on> the real thing. > > Jan> > -------------- Original message -------------- > From: sarleno@... > > > > > > > > > Arlen> I have been on Actimmune for 2 1/2 years. The side> effects I get are chills and achy joints--but they> have gotten much better since I first started the> injections. My side effects were not really> noticable until I was on full dose.> Jan> Jan,> Thanks for the info. I started on the full dose> injections this week, so time will tell.> > Arlen> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2006 Report Share Posted March 13, 2006 Leanne, I agree that the biopsy pain is just awful. I was in the hospital 9 days on morphine. They scraped scar tissue off the outside of my lung on the right side. It was growing there just like inside the lung. It was getting up against the ribs and the pain was excruciating. I was NOT expecting anything like this. But, I have heard that transplant is much less painful. I like hearing the success stories. I'm shaking in my boots. Hugs, Joyce> > > There are 3 messages in this issue.> > > > Topics in this digest:> > > > 1. Re: other trials> > > 2. (unknown)> > > 3. Mea Culpa> > > > > > >> ________________________________________________________________________> >> ________________________________________________________________________> > > > Message: 1 > > Date: Sat, 11 Mar 2006 21:40:53 +0000> > > Subject: Re: other trials> > > > > > Arlen> > Let me know how it goes when on full strength. I> > have a friend that had no side effects and he was on> > the real thing. > > > > Jan> > > > -------------- Original message -------------- > > From: sarleno@... > > > > > > > > > > > > > > > > > > Arlen> > I have been on Actimmune for 2 1/2 years. The side> > effects I get are chills and achy joints--but they> > have gotten much better since I first started the> > injections. My side effects were not really> > noticable until I was on full dose.> > Jan> > Jan,> > Thanks for the info. I started on the full dose> > injections this week, so time will tell.> > > > Arlen> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2006 Report Share Posted March 14, 2006 Arlen, My friend who just had the transplant is on 24 different medications at this point. He will be weaned off eventually. You have to take a lot of anti rejection drugs because the lungs can reject at any time. Sounds like fun. Prednisone is the best anti inflammatory out there. Kind of like asbestos was to fire retardant, I guess. Leannesarleno@... wrote: Leanne, I understand from your posting that they put you on Prednisone after transplant surgery? From what I've heard from others in this support group, that doesn't sound good at all. Like you, I'm going to the U of Chicago, am too young for Medicare, and still work full time. I work in a steel mill, so will have to quit working if put on oxygen. Too hazardous to drag around with all the red-hot steel around. I plan to quit at that point, and try for S.S. disability. I'm scheduled for an overnight "sleep test" tomorrow, to help determine if I need the oxygen. I wonder if I should rest up for the test? Arlen Yahoo! Mail Use Photomail to share photos without annoying attachments. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2006 Report Share Posted March 15, 2006 Dear Leanne, I have been reading these messages since that last of November 2005. This is my first reply with a short version of my story. After five months of hacking and coughing, I was finally diagnosed with IPF on May 5, 2005. My local pulmonoligist recommended me to get enrolled in a transplant program immediately since is was nearly 65. So I enrolled in the Duke Medical program. In the middle of September 2005, I was arrived for an intense evaluation--5 days. They performed tests such as pulmonary function, heart cath, swallowing function and stomach function, rehab introduction and others. I was sent home to get a colonoscopy, sleep test, and O2 and rehab perscriptions, plus a persciption for a pulse/oximeter which my supplemental insurance picked up 80% of the cost. In November they called me back to talk about a " stomach wrap. " We got that posponed, but go to talk with the pulmonary doctor about other concerns. On January 2006, I returned for an update. The physician said to me first thing, " You know this disease will not get any better. " I replied, " I realize that. " Then he said the shocker, " How soon can you come for the transplantation? I believe the team will decide to be aggressive with you and have you come in. So that is where I am now. This Friday, March 17, Anne and I pack up clothing and other essential and move from town, TN to Durham NC to a furnished two-bedroom apartment. On Monday I begin their rehab program. On March 30 & 31 I begin other preliminary tests in preparation for the transplant. They assure me that after three weeks I will be placed on the immediate transplant list and the average waiting time is two weeks. So I was happy to hear some imput from you and others about the transplant process and the consternation you feel and encrouches upon me also. During this time I have been on the following medications: Advair 250/50 twice a day, 150 mg of Azathioprine (Imeron), 10 mg of prednisone, Septra three times a week, and quinie sulfate daily for cramps. I have had little adverse symptons from these meds. and I feel fortunate since reading of other peoples problems with them. I have also lost 15 pounds the initial recommendation by the doctor. Thanks, everyone for listing, cussing and discussing your pilgrimage with this frustrating disease. > > > There are 3 messages in this issue. > > > > Topics in this digest: > > > > 1. Re: other trials > > From: jltitus@... > > 2. (unknown) > > > > 3. Mea Culpa > > From: " Leanne " > > > > > > > > > _____________________________________________________________________ ___ > > > _____________________________________________________________________ ___ > > > > Message: 1 > > Date: Sat, 11 Mar 2006 21:40:53 +0000 > > From: jltitus@... > > Subject: Re: other trials > > > > > > Arlen > > Let me know how it goes when on full strength. I > > have a friend that had no side effects and he was on > > the real thing. > > > > Jan > > > > -------------- Original message -------------- > > From: sarleno@... > > > > > > > > > > > > > > > > > > Arlen > > I have been on Actimmune for 2 1/2 years. The side > > effects I get are chills and achy joints--but they > > have gotten much better since I first started the > > injections. My side effects were not really > > noticable until I was on full dose. > > Jan > > Jan, > > Thanks for the info. I started on the full dose > > injections this week, so time will tell. > > > > Arlen > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2006 Report Share Posted March 15, 2006 , Thank you so much for sharing your 'story'. I pray that it will have a happy and healthy ending. Your courage is awesome. You will be in my prayers. Please when you are able, let us hear from you. Joyce > > > > > There are 3 messages in this issue.> > > > > > Topics in this digest:> > > > > > 1. Re: other trials> > > From: jltitus@> > > 2. (unknown)> > > From: "janne5303" joycedalton29@> > > 3. Mea Culpa> > > From: "Leanne"> > > ls_pulmonaryfibrosis@> > > > > > > > >> > > _____________________________________________________________________> ___> > >> > > _____________________________________________________________________> ___> > > > > > Message: 1 > > > Date: Sat, 11 Mar 2006 21:40:53 +0000> > > From: jltitus@> > > Subject: Re: other trials> > > > > > > > > Arlen> > > Let me know how it goes when on full strength. I> > > have a friend that had no side effects and he was on> > > the real thing. > > > > > > Jan> > > > > > -------------- Original message -------------- > > > From: sarleno@ > > > > > > > > > > > > > > > > > > > > > > > > > > > Arlen> > > I have been on Actimmune for 2 1/2 years. The side> > > effects I get are chills and achy joints--but they> > > have gotten much better since I first started the> > > injections. My side effects were not really> > > noticable until I was on full dose.> > > Jan> > > Jan,> > > Thanks for the info. I started on the full dose> > > injections this week, so time will tell.> > > > > > Arlen> > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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