Guest guest Posted September 17, 2009 Report Share Posted September 17, 2009 Z., MB, Peggy and Jane... thank you for being you and for your always incredible encouragement. I was hoping for a Peggy recap but I guess it's a little hard to recap 9 months or so. Thanks for supporting me in the PFF Fundraiser. I'm glad to do something to finally give a little something back to the foundation for all the ways I've benefitted from this wonderful organization and we all know how important their work is. I was always so impressed by Wally's fundraiser and other's like him... I figure this is my easy way out, no work to organize a whole event myself, just participate, spread the word, tell my story and give people a way to actively fight this disease! Just scanning the posts I want to let you all know this place still feels like home. One strange question I get now is if I feel like I'm back to normal. I guess they mean like before I was ever sick. Somehow I don't remember what that was like. I think mostly because of the way this disease came on over time and infiltrated my life. Not to mention when there is nothing to take notice of, there's nothing to notice right? That reason why people w/out challenges in their life don't appreciate what they've got. I do remember what it was like to be short of breath. If I do something that makes me short of breath I am not like a " normal " healthy person and just go " oh, I'm short of breath. " It's an instant flash back panicky moment. Another interesting observation was when I was in the hospital for my 2nd rejection. While there I went to their rehab and worked out. I was next to a woman on the treadmill w/ O2 on and seeing her struggle for air was like the first time I saw it. I mean I'd been on O2 and been around other patients on O2, but for some reason that day I saw it in a whole new light. It was so hard to see her gasping for breath. That was me, but when it is you it's just your reality and I realized maybe for the first time that's how hard it was for people to see me that way. I don't know if I'm explaining it right. So many topics: here's my 2 cents... Disability is a total humiliating pain and I think they are trying to discourage you and make you just give up, but don't give in or back down. Of course some have no problem, but even if you do, this too shall pass... give it a go most of the time it's worth it. I used to take NAC, took NAC Sustain by Jarrow Formulas. The liquid is the only " prescription " but there was no way I was going to drink or nebulize that nasty stuff. It was what I took recommended by someone here and I remember that's what Joyce's doctor told her to take. Since all the pills are not prescription and not regulated I remember he told her only to take that kind which is in tablet form, definitely not capsule as it's least controllable. As far as Dyanne's transplant question single vs. double. You will hear as many different answers as people answering. There is a lot of debate. I've heard arguments for both ways being better than the other. I've heard some doctors and/or hospitals have different philosophy's that it's better to save 2 lives than 1, I've heard issues about having a native lung being better for rejecton or and issues of recovering and risk w/ surgery and bypass and on and on. I know that at my hospital they state that their preference is to " provide recipients with both lungs, however situations arise where a patient may only be able to receive one lung. " I know they said 2 right away for me because of my age, my high activity life w/ the 2 young kids, my disease (IPF) and that the damage was pretty much equal in both lungs, which by the time of transplant were pretty much useless. I know at this same hospital though Judy got one and I think that was always the plan and then a man who had a very, very comparable case (IPF, similar age, young child, etc.) they planned for 2, but during the transplant one lung was found to be not viable. They almost called off the procedure because of all kinds of complication, but at the last minute said he had a better chance w/ it and this little lung he got ended up kickin' butt and he's done very well. I have never heard that insurance had any say. I picked my hospital based on lots of things, but in the process I found that my insurance did consider it a center of excellence and covered transplant there at 100% vs. 80% at another. I just realized how late it's gotten... I gotta run to a pilates class (bike ride and yoga yesterday). My best to you all, Kerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2009 Report Share Posted September 17, 2009 - Nice to hear from you Kerry! hope you are enjoyig life with your family love Geeta -- In Breathe-Support , " kerrygeron " wrote: > > Z., MB, Peggy and Jane... thank you for being you and for your always incredible encouragement. I was hoping for a Peggy recap but I guess it's a little hard to recap 9 months or so. Thanks for supporting me in the PFF Fundraiser. I'm glad to do something to finally give a little something back to the foundation for all the ways I've benefitted from this wonderful organization and we all know how important their work is. I was always so impressed by Wally's fundraiser and other's like him... I figure this is my easy way out, no work to organize a whole event myself, just participate, spread the word, tell my story and give people a way to actively fight this disease! > > Just scanning the posts I want to let you all know this place still feels like home. > > One strange question I get now is if I feel like I'm back to normal. I guess they mean like before I was ever sick. Somehow I don't remember what that was like. I think mostly because of the way this disease came on over time and infiltrated my life. Not to mention when there is nothing to take notice of, there's nothing to notice right? That reason why people w/out challenges in their life don't appreciate what they've got. I do remember what it was like to be short of breath. If I do something that makes me short of breath I am not like a " normal " healthy person and just go " oh, I'm short of breath. " It's an instant flash back panicky moment. Another interesting observation was when I was in the hospital for my 2nd rejection. While there I went to their rehab and worked out. I was next to a woman on the treadmill w/ O2 on and seeing her struggle for air was like the first time I saw it. I mean I'd been on O2 and been around other patients on O2, but for some reason that day I saw it in a whole new light. It was so hard to see her gasping for breath. That was me, but when it is you it's just your reality and I realized maybe for the first time that's how hard it was for people to see me that way. I don't know if I'm explaining it right. > > So many topics: here's my 2 cents... > > Disability is a total humiliating pain and I think they are trying to discourage you and make you just give up, but don't give in or back down. Of course some have no problem, but even if you do, this too shall pass... give it a go most of the time it's worth it. > > I used to take NAC, took NAC Sustain by Jarrow Formulas. The liquid is the only " prescription " but there was no way I was going to drink or nebulize that nasty stuff. It was what I took recommended by someone here and I remember that's what Joyce's doctor told her to take. Since all the pills are not prescription and not regulated I remember he told her only to take that kind which is in tablet form, definitely not capsule as it's least controllable. > > As far as Dyanne's transplant question single vs. double. You will hear as many different answers as people answering. There is a lot of debate. I've heard arguments for both ways being better than the other. I've heard some doctors and/or hospitals have different philosophy's that it's better to save 2 lives than 1, I've heard issues about having a native lung being better for rejecton or and issues of recovering and risk w/ surgery and bypass and on and on. I know that at my hospital they state that their preference is to " provide recipients with both lungs, however situations arise where a patient may only be able to receive one lung. " I know they said 2 right away for me because of my age, my high activity life w/ the 2 young kids, my disease (IPF) and that the damage was pretty much equal in both lungs, which by the time of transplant were pretty much useless. I know at this same hospital though Judy got one and I think that was always the plan and then a man who had a very, very comparable case (IPF, similar age, young child, etc.) they planned for 2, but during the transplant one lung was found to be not viable. They almost called off the procedure because of all kinds of complication, but at the last minute said he had a better chance w/ it and this little lung he got ended up kickin' butt and he's done very well. I have never heard that insurance had any say. I picked my hospital based on lots of things, but in the process I found that my insurance did consider it a center of excellence and covered transplant there at 100% vs. 80% at another. > > I just realized how late it's gotten... I gotta run to a pilates class (bike ride and yoga yesterday). > > My best to you all, > Kerry > Quote Link to comment Share on other sites More sharing options...
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