Comments on: The meeting http://breathinstephen.com/the-meeting/ Just a guy with really bad asthma trying to be normal Tue, 07 Feb 2012 15:21:29 +0000 hourly 1 http://wordpress.org/?v=3.3.1 By: breathinstephen http://breathinstephen.com/the-meeting/comment-page-1/#comment-1550 breathinstephen Wed, 15 Dec 2010 08:08:59 +0000 http://breathinstephen.com/?p=9688#comment-1550 Hi Marsha, yeah, I can\'t wait to see Barry new Show at the Paris in March! Hi Marsha, yeah, I can\’t wait to see Barry new Show at the Paris in March!

]]> By: BeckyG http://breathinstephen.com/the-meeting/comment-page-1/#comment-1568 BeckyG Tue, 22 Dec 2009 07:58:59 +0000 http://breathinstephen.com/?p=9688#comment-1568 It may be different in the USA, but here in UK they tend not to transplant asthmatics unless there is significant damage to the lungs. I'm a severe brittle asthmatic and had this conversation with my consultant several years ago. Part of the reasoning is that there's more to asthma than 'just' the lungs - it's an immune system thing too - so transplanting the lungs wouldn't necessarily cure the asthma. It's interesting that it's been suggested to you though, and completely understandable that you'd want to look into it and find out about it at this stage. It may be different in the USA, but here in UK they tend not to transplant asthmatics unless there is significant damage to the lungs. I'm a severe brittle asthmatic and had this conversation with my consultant several years ago. Part of the reasoning is that there's more to asthma than 'just' the lungs – it's an immune system thing too – so transplanting the lungs wouldn't necessarily cure the asthma. It's interesting that it's been suggested to you though, and completely understandable that you'd want to look into it and find out about it at this stage.

]]> By: Stephen http://breathinstephen.com/the-meeting/comment-page-1/#comment-1569 Stephen Tue, 22 Dec 2009 01:37:57 +0000 http://breathinstephen.com/?p=9688#comment-1569 Actually, the criteria for lung transplant here in the USA is no different for asthmatics, then it is for any other lung disease. There are quite a few asthmatics on the transplant list right now. Btw, asthma is not always considered an immune disorder ,and those asthmatics who have been transplanted and wrote about their experiences, have had no problems with the asthma returning. Actually, the criteria for lung transplant here in the USA is no different for asthmatics, then it is for any other lung disease. There are quite a few asthmatics on the transplant list right now. Btw, asthma is not always considered an immune disorder ,and those asthmatics who have been transplanted and wrote about their experiences, have had no problems with the asthma returning.

]]> By: Stephen http://breathinstephen.com/the-meeting/comment-page-1/#comment-1551 Stephen Tue, 15 Dec 2009 00:58:33 +0000 http://breathinstephen.com/?p=9688#comment-1551 Hi Elisheva, Thanks for the comment. I totally agree! Hi Elisheva, Thanks for the comment. I totally agree!

]]> By: Elisheva http://breathinstephen.com/the-meeting/comment-page-1/#comment-1547 Elisheva Sat, 12 Dec 2009 20:41:00 +0000 http://breathinstephen.com/?p=9688#comment-1547 First off I like your new header! Really nice! Uch, I hate that. My lungs are larger and stronger than they should be for my height, thus resulting in a higher personal best PEF than would be expected. When I'm not breathing well, what would be in the yellow for me is still in the green for the expected for my height. My new pulmo totally doesn't take me seriously because of this. And I'm like "What? Don't you want me to be as healthy as possible?" Not the same story as you, but, it's like they're using your relative health and abilities against you.... Arghh. First off I like your new header! Really nice!

Uch, I hate that. My lungs are larger and stronger than they should be for my height, thus resulting in a higher personal best PEF than would be expected. When I'm not breathing well, what would be in the yellow for me is still in the green for the expected for my height. My new pulmo totally doesn't take me seriously because of this. And I'm like "What? Don't you want me to be as healthy as possible?" Not the same story as you, but, it's like they're using your relative health and abilities against you…. Arghh.

]]> By: MARSH http://breathinstephen.com/the-meeting/comment-page-1/#comment-1546 MARSH Sat, 12 Dec 2009 19:21:45 +0000 http://breathinstephen.com/?p=9688#comment-1546 stephen one ????? i didn't see or have you thought about it how much prednsone do you always everyday day after day do you have to take so you don't reject the transplant i have a close friend that had kidney trans plant and he takes 100 and he's mean and swollen and not happy to be here any more!!!!! said he would never do it again!!! said life was better maybe just not as long only difference is now he pees fine??? think hard on this one cuz you know steriods give you the meanies just a thought thinkin about you??? did you see barry on jay leno the other night??? do you ever go to graveyardmall.com thay have some barry manilow cd for good price just got mine yesterday it was xmas to my self pretty good well have a good day marsh stephen one ????? i didn’t see or have you thought about it how much prednsone do you always everyday day after day do you have to take so you don’t reject the transplant i have a close friend that had kidney trans plant and he takes 100 and he’s mean and swollen and not happy to be here any more!!!!! said he would never do it again!!! said life was better maybe just not as long only difference is now he pees fine??? think hard on this one cuz you know steriods give you the meanies just a thought thinkin about you??? did you see barry on jay leno the other night???
do you ever go to graveyardmall.com thay have some barry manilow cd for good price just got mine yesterday it was xmas to my self pretty good well have a good day marsh

]]> By: gaylemyrna http://breathinstephen.com/the-meeting/comment-page-1/#comment-1545 gaylemyrna Sat, 12 Dec 2009 18:07:17 +0000 http://breathinstephen.com/?p=9688#comment-1545 Hi Stephen: Not an easy decision...and only one you can make. But, as others have noted, gathering info now makes sense for down the line...Whatever you do..I wish you all the best. Meanwhile, my lungs are flaring up again and I'm back on a lovely prednisone taper and goodbye to what little sleep this insomniac gets :( ! Hi Stephen:
Not an easy decision…and only one you can make. But, as others have noted, gathering info now makes sense for down the line…Whatever you do..I wish you all the best. Meanwhile, my lungs are flaring up again and I’m back on a lovely prednisone taper and goodbye to what little sleep this insomniac gets :( !

]]> By: breathinstephen http://breathinstephen.com/the-meeting/comment-page-1/#comment-1542 breathinstephen Fri, 11 Dec 2009 13:38:16 +0000 http://breathinstephen.com/?p=9688#comment-1542 Hi Amy, Yeah, the medical community said that exercise was important, but I dont think they ever imagined that someone like me would come along. Hi Amy, Yeah, the medical community said that exercise was important, but I dont think they ever imagined that someone like me would come along.

]]> By: breathinstephen http://breathinstephen.com/the-meeting/comment-page-1/#comment-1536 breathinstephen Fri, 11 Dec 2009 02:55:50 +0000 http://breathinstephen.com/?p=9688#comment-1536 Thanks Danielle, Actually ,there have only been a couple of asthmatics that have ever been transplanted. Right now, Im leaning towards no, but that could change in the future. Hope your lungs are behaving! Thanks Danielle, Actually ,there have only been a couple of asthmatics that have ever been transplanted. Right now, Im leaning towards no, but that could change in the future.
Hope your lungs are behaving!

]]> By: Amy http://breathinstephen.com/the-meeting/comment-page-1/#comment-1541 Amy Fri, 11 Dec 2009 01:46:18 +0000 http://breathinstephen.com/?p=9688#comment-1541 Wow, so much to respond to--now I understand your previous post better. Absolutely, I think I'd be doing the same thing in your shoes--why WOULDN'T you learn as much as possible about transplants now, when it's not an emergency and you have plenty of time to think and read? Even if you're never a candidate or never choose to do it, at least you have all the information you need. The racewalking weighing against you is a bit of a mixed message, isn't it? The medical and non-profit communities spend a lot of time and money telling asthmatics they can still live active, healthy lives, exercise, and participate in all kinds of sports, but in your case I guess the willingness to persist in spite of severe asthma means you're not sick "enough." I do get that the side effects and meds for organ rejection make transplantation a last-ditch option, but still! Finally, I love your new header! Great image. Wow, so much to respond to–now I understand your previous post better. Absolutely, I think I'd be doing the same thing in your shoes–why WOULDN'T you learn as much as possible about transplants now, when it's not an emergency and you have plenty of time to think and read? Even if you're never a candidate or never choose to do it, at least you have all the information you need.

The racewalking weighing against you is a bit of a mixed message, isn't it? The medical and non-profit communities spend a lot of time and money telling asthmatics they can still live active, healthy lives, exercise, and participate in all kinds of sports, but in your case I guess the willingness to persist in spite of severe asthma means you're not sick "enough." I do get that the side effects and meds for organ rejection make transplantation a last-ditch option, but still!

Finally, I love your new header! Great image.

]]> By: Stephen http://breathinstephen.com/the-meeting/comment-page-1/#comment-1540 Stephen Fri, 11 Dec 2009 00:11:22 +0000 http://breathinstephen.com/?p=9688#comment-1540 Thanks Kerri, The blog make over is a work in progress,. Got lots of tweaking to do yet. Thanks Kerri, The blog make over is a work in progress,. Got lots of tweaking to do yet.

]]> By: kerri http://breathinstephen.com/the-meeting/comment-page-1/#comment-1539 kerri Thu, 10 Dec 2009 23:03:36 +0000 http://breathinstephen.com/?p=9688#comment-1539 Hey Steve, Tough call, especially when you've got two different perspectives from different doctors--and its a decision that nobody can make except for you. Like Danielle said, we're all behind you, whatever decision you make in the future. Hugs, --Kerri PS. LOVE the new blog temp. I was waiting for the reveal :). Hey Steve,

Tough call, especially when you’ve got two different perspectives from different doctors–and its a decision that nobody can make except for you. Like Danielle said, we’re all behind you, whatever decision you make in the future.

Hugs,
–Kerri

PS. LOVE the new blog temp. I was waiting for the reveal :) .

]]> By: Danielle http://breathinstephen.com/the-meeting/comment-page-1/#comment-1535 Danielle Thu, 10 Dec 2009 19:48:10 +0000 http://breathinstephen.com/?p=9688#comment-1535 Hi Steve, have you checked out all the lung transplant blogs out there? A lot of CFers and other lungers who are waiting for or have had transplant have great blogs which give insight into what it's like to be on the list or to live after transplantation. Might be useful to you should you get closer to having to make that decision. I've never come across an asthma transplant blog though. I hope you have all the support you need around you. But never forget that our little blogging family will be behind you whatever you need to do, 100%. Hi Steve, have you checked out all the lung transplant blogs out there? A lot of CFers and other lungers who are waiting for or have had transplant have great blogs which give insight into what it's like to be on the list or to live after transplantation. Might be useful to you should you get closer to having to make that decision. I've never come across an asthma transplant blog though.

I hope you have all the support you need around you. But never forget that our little blogging family will be behind you whatever you need to do, 100%.

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