Comments on: The SARP experience http://breathinstephen.com/the-sarp-experience/ Diary of a severely asthmatic wannabe endurance athlete Sat, 31 Jul 2010 13:26:39 +0000 hourly 1 http://wordpress.org/?v=3.0.1 By: Elisheva http://breathinstephen.com/the-sarp-experience/comment-page-1/#comment-1504 Elisheva Mon, 30 Nov 2009 08:47:31 +0000 http://breathinstephen.com/?p=9283#comment-1504 Wow. That's fascinating! Cool stuff. Wow. That's fascinating! Cool stuff.

]]> By: breathinstephen http://breathinstephen.com/the-sarp-experience/comment-page-1/#comment-1503 breathinstephen Mon, 30 Nov 2009 06:50:37 +0000 http://breathinstephen.com/?p=9283#comment-1503 Here's Dr Wenzels response to your question The LITTLE (and very little) bit of data that exist, say that the asthmatic lungs (the old ones) stay asthmatic, but NEW/GOOD lungs transplanted into asthmatic stay new and good (nonasthmatic)... But really not TOTALLY known, as so few asthmatics have been transplanted! Here's Dr Wenzels response to your question

The LITTLE (and very little) bit of data that exist, say that the asthmatic lungs (the old ones) stay asthmatic, but NEW/GOOD lungs transplanted into asthmatic stay new and good (nonasthmatic)… But really not TOTALLY known, as so few asthmatics have been transplanted!

]]> By: breathinstephen http://breathinstephen.com/the-sarp-experience/comment-page-1/#comment-1502 breathinstephen Sat, 28 Nov 2009 22:02:19 +0000 http://breathinstephen.com/?p=9283#comment-1502 Great question! Assuming that the new lungs are disease free, then I wouldn't have asthma anymore. I'll have to ask Dr Wenzel about the other half of your question. But, I would imagine that they would not transplant diseased lungs ( ie severe asthma). If the donor had mild asthma, it probably wouldn't make a difference, I would still be better off. Great question! Assuming that the new lungs are disease free, then I wouldn't have asthma anymore. I'll have to ask Dr Wenzel about the other half of your question. But, I would imagine that they would not transplant diseased lungs ( ie severe asthma). If the donor had mild asthma, it probably wouldn't make a difference, I would still be better off.

]]> By: Elisheva http://breathinstephen.com/the-sarp-experience/comment-page-1/#comment-1501 Elisheva Sat, 28 Nov 2009 18:50:08 +0000 http://breathinstephen.com/?p=9283#comment-1501 This is something I've always wondered. If an asthmatic gets implanted with new asthma-free lungs, will they not have asthma anymore? Or vice-versa - if a non asthmatic person gets asthmatic lungs (say mine, which as far as I know have no irreversable damage, just tend to close up sometimes), will they have asthma or will the lungs work fine for them? I wish you the best in whichever route you decide to take. Elisheva This is something I've always wondered. If an asthmatic gets implanted with new asthma-free lungs, will they not have asthma anymore? Or vice-versa – if a non asthmatic person gets asthmatic lungs (say mine, which as far as I know have no irreversable damage, just tend to close up sometimes), will they have asthma or will the lungs work fine for them?

I wish you the best in whichever route you decide to take.

Elisheva

]]> By: Steve Ferkau http://breathinstephen.com/the-sarp-experience/comment-page-1/#comment-1479 Steve Ferkau Mon, 23 Nov 2009 18:37:38 +0000 http://breathinstephen.com/?p=9283#comment-1479 Hi Steve! A little faction of my team just climbed the Sears Tower (103 floors, 2100 steps...) and this will be my 8th climb up the Hancock (94 floors, 1650 steps) -- and six of my donor's friends and volleyball teammates will be climbing with me! We're already signed up for 2010. I would be right along with you in waiting it out for a bit. Learn about it, get prepared, but who knows what treatments for asthma, COPD and fibrosis might come out in the next few years - you may dodge it, but you'll be ready if you don't. I'm amazed at what you do with your current lung capacity - I also know that your persistence and dedication give you the ability to do all you do... Keep moving! Love, Steve Hi Steve! A little faction of my team just climbed the Sears Tower (103 floors, 2100 steps…) and this will be my 8th climb up the Hancock (94 floors, 1650 steps) — and six of my donor's friends and volleyball teammates will be climbing with me! We're already signed up for 2010.

I would be right along with you in waiting it out for a bit. Learn about it, get prepared, but who knows what treatments for asthma, COPD and fibrosis might come out in the next few years – you may dodge it, but you'll be ready if you don't. I'm amazed at what you do with your current lung capacity – I also know that your persistence and dedication give you the ability to do all you do… Keep moving!

Love, Steve

]]> By: GayleMyrna http://breathinstephen.com/the-sarp-experience/comment-page-1/#comment-1478 GayleMyrna Mon, 23 Nov 2009 18:26:31 +0000 http://breathinstephen.com/?p=9283#comment-1478 Hi Stephen: Glad you accomplished your trip to Pittsburgh...what an adventure! Anyhow, my thoughts are with you whatever direction your medical treatment takes you. Back here in SoCal, I am in a flare-up. So coughing up lots and lots of stuff...may have gone from asthma into bronchitis now. Am on pred and nebs and see my doc again Wed. But more stable today than past couple days. Meanwhile, keep on keeping on ! GayleMyrna Hi Stephen: Glad you accomplished your trip to Pittsburgh…what an adventure! Anyhow, my thoughts are with you whatever direction your medical treatment takes you. Back here in SoCal, I am in a flare-up. So coughing up lots and lots of stuff…may have gone from asthma into bronchitis now. Am on pred and nebs and see my doc again Wed. But more stable today than past couple days. Meanwhile, keep on keeping on !
GayleMyrna

]]> By: breathinstephen http://breathinstephen.com/the-sarp-experience/comment-page-1/#comment-1477 breathinstephen Mon, 23 Nov 2009 18:19:40 +0000 http://breathinstephen.com/?p=9283#comment-1477 Hi Steve, Another Breathin---STEVEN .. very cool. Thanks for writing and Congrats on making it 9 years with your new lungs, That's amazing! . Actually, I read your story several years ago and was truly inspired. Didn't you climb some tall buildings right after you got your lungs? Im not nearly as severe as you were at the time you received your new lungs. My FEV1 is still in the 30's and I function remarkably well without O2 (Boston marathoner), but after looking at my lungs from the inside, the concern from my pulmonologist in Pittsburgh is that this good breathing streak wont last much longer and that I really should consider transplant as an option before I deteriorate too much. I think Im just gonna wait and see how it goes over the next few months. Right now Im not totally convinced that I wanna go the transplant route, but as my disease worsens, Im sure I'll think differently about it. Thanks again for writing. Here's to your reaching 10 years and beyond! Hi Steve, Another Breathin—STEVEN .. very cool. Thanks for writing and Congrats on making it 9 years with your new lungs, That's amazing! . Actually, I read your story several years ago and was truly inspired. Didn't you climb some tall buildings right after you got your lungs? Im not nearly as severe as you were at the time you received your new lungs. My FEV1 is still in the 30's and I function remarkably well without O2 (Boston marathoner), but after looking at my lungs from the inside, the concern from my pulmonologist in Pittsburgh is that this good breathing streak wont last much longer and that I really should consider transplant as an option before I deteriorate too much. I think Im just gonna wait and see how it goes over the next few months. Right now Im not totally convinced that I wanna go the transplant route, but as my disease worsens, Im sure I'll think differently about it.
Thanks again for writing. Here's to your reaching 10 years and beyond!

]]> By: Steve Ferkau http://breathinstephen.com/the-sarp-experience/comment-page-1/#comment-1475 Steve Ferkau Mon, 23 Nov 2009 17:56:56 +0000 http://breathinstephen.com/?p=9283#comment-1475 (part II) I hope you're relatively stable and hanging in there... The wait can be a total crap-shoot. Yes, the LAS/Lung Allocation Scoring may push an asthmatic to the bottom of the list -- I'm not certain how it works with that particular condition -- but as you get worse, asthma or no, you generally move up the list -- and, distribution is also based on availability, blood type and body size, and sometimes, you just happen to be the only one your size & type in a particular region and you get the call... You hunker down and wait, but there is also an awareness that it can happen at any time -- I hope that, when you're ready, your call comes soon... It sounds like you're in pretty darn good shape anyway - you stay that way as much as possible... Keep your weight in the right range, and keep as active as possible - all of that will contribute to a fast recovery. The support and care surrounding you leads me to believe that you will sail through this quite well... You're in my thoughts. Love, Steve Steve Ferkau Chicago, IL (part II) I hope you're relatively stable and hanging in there… The wait can be a total crap-shoot. Yes, the LAS/Lung Allocation Scoring may push an asthmatic to the bottom of the list — I'm not certain how it works with that particular condition — but as you get worse, asthma or no, you generally move up the list — and, distribution is also based on availability, blood type and body size, and sometimes, you just happen to be the only one your size & type in a particular region and you get the call… You hunker down and wait, but there is also an awareness that it can happen at any time — I hope that, when you're ready, your call comes soon…

It sounds like you're in pretty darn good shape anyway – you stay that way as much as possible… Keep your weight in the right range, and keep as active as possible – all of that will contribute to a fast recovery. The support and care surrounding you leads me to believe that you will sail through this quite well… You're in my thoughts.

Love, Steve

Steve Ferkau
Chicago, IL

]]> By: Steve Ferkau http://breathinstephen.com/the-sarp-experience/comment-page-1/#comment-1476 Steve Ferkau Mon, 23 Nov 2009 17:56:27 +0000 http://breathinstephen.com/?p=9283#comment-1476 Hey BreathinStephen!!! Another BreathinSteven here!!! But -- I'm a CFer (cystic fibrosis), not asthma -- though I do have a friend with severe asthma who received two lungs a few years ago... I know you've got some big, serious decisions coming at you. I imagine, with all of your scaring and fibrotic tissue -- a lung transplant seems an obvious route in the future... If you choose to go that way, I sincerely hope that your journey is as wonderful as mine has been... I received two beautiful, new lungs almost 10 years ago -- after living almost 40 years with cystic fibrosis lungs, my lung capacity was somewhere between 10-15%, I was in CO2 retention, my O2 saturation on 3 liters was in the high 80s, and I wasn't moving anywhere quickly... That's not the case anymore -- and this breathin' stuff blows my freakin' mind every single day -- it's been 9+ years and I still think about it constantly... (continued...) Hey BreathinStephen!!! Another BreathinSteven here!!!

But — I'm a CFer (cystic fibrosis), not asthma — though I do have a friend with severe asthma who received two lungs a few years ago…

I know you've got some big, serious decisions coming at you. I imagine, with all of your scaring and fibrotic tissue — a lung transplant seems an obvious route in the future… If you choose to go that way, I sincerely hope that your journey is as wonderful as mine has been… I received two beautiful, new lungs almost 10 years ago — after living almost 40 years with cystic fibrosis lungs, my lung capacity was somewhere between 10-15%, I was in CO2 retention, my O2 saturation on 3 liters was in the high 80s, and I wasn't moving anywhere quickly… That's not the case anymore — and this breathin' stuff blows my freakin' mind every single day — it's been 9+ years and I still think about it constantly… (continued…)

]]> By: Olive http://breathinstephen.com/the-sarp-experience/comment-page-1/#comment-1472 Olive Mon, 23 Nov 2009 12:13:13 +0000 http://breathinstephen.com/?p=9283#comment-1472 hey there, you must have thoughts buzzing round your head like all sorts. Im glad you had a great experience meeting the pulmenologist and all the medical staff there were great. Wish all drs and nurses were like that. Just take your time making decisions. People will always be about to support you but no one can make the decisions for you. take care Olive hey there,

you must have thoughts buzzing round your head like all sorts. Im glad you had a great experience meeting the pulmenologist and all the medical staff there were great. Wish all drs and nurses were like that.
Just take your time making decisions. People will always be about to support you but no one can make the decisions for you.
take care

Olive

]]> By: Tweets that mention breathinstephen.com » The SARP experience -- Topsy.com http://breathinstephen.com/the-sarp-experience/comment-page-1/#comment-1467 Tweets that mention breathinstephen.com » The SARP experience -- Topsy.com Mon, 23 Nov 2009 03:25:16 +0000 http://breathinstephen.com/?p=9283#comment-1467 [...] This post was mentioned on Twitter by GraceBarkwell, Stephen Gaudet. Stephen Gaudet said: New blog posting, The SARP experience - http://tinyurl.com/y8g5jz9 [...] [...] This post was mentioned on Twitter by GraceBarkwell, Stephen Gaudet. Stephen Gaudet said: New blog posting, The SARP experience – http://tinyurl.com/y8g5jz9 [...]

]]> By: marsh http://breathinstephen.com/the-sarp-experience/comment-page-1/#comment-1464 marsh Sun, 22 Nov 2009 21:51:25 +0000 http://breathinstephen.com/?p=9283#comment-1464 soooo much to wrap your mind around????? scary too???? and yet you seem ok and at ease and to think i was just startin to under stand that air trappin thing well get some well deserved rest and know we're all here if you need to talk or listen????? marsh soooo much to wrap your mind around????? scary too???? and yet you seem ok and at ease and to think i was just startin to under stand that air trappin thing well get some well deserved rest and know we're all here if you need to talk or listen????? marsh

]]> By: kerri http://breathinstephen.com/the-sarp-experience/comment-page-1/#comment-1463 kerri Sun, 22 Nov 2009 20:52:08 +0000 http://breathinstephen.com/?p=9283#comment-1463 Have you seen their website? It has nifty cars racing around the mainpage haha! And you can buy the sauces you were raving about online: <a href="http://quakersteak.securetree.com/" target="_blank">http://quakersteak.securetree.com/</a> ! Dang, I should've come ot Pittsburgh and hung out with ya, alleviated some of the boredom! Have you seen their website? It has nifty cars racing around the mainpage haha!
And you can buy the sauces you were raving about online: http://quakersteak.securetree.com/ !

Dang, I should've come ot Pittsburgh and hung out with ya, alleviated some of the boredom!

]]> By: breathinstephen http://breathinstephen.com/the-sarp-experience/comment-page-1/#comment-1462 breathinstephen Sun, 22 Nov 2009 20:30:29 +0000 http://breathinstephen.com/?p=9283#comment-1462 Well, Im sure they could use people like you in both capacities. You should contact them. Well, Im sure they could use people like you in both capacities. You should contact them.

]]> By: Danielle http://breathinstephen.com/the-sarp-experience/comment-page-1/#comment-1461 Danielle Sun, 22 Nov 2009 20:05:50 +0000 http://breathinstephen.com/?p=9283#comment-1461 Holy Dinah... big decisions. You must be reeling right now. Take care of yourself, we're 100% behind you. On the other hand, the SARP study sounds like an amazing experience and I'm jealous for a few reasons. I'd love to do something like this. I'd love to run this study AND take part in it, LOL! Holy Dinah… big decisions. You must be reeling right now. Take care of yourself, we're 100% behind you.

On the other hand, the SARP study sounds like an amazing experience and I'm jealous for a few reasons. I'd love to do something like this. I'd love to run this study AND take part in it, LOL!

]]> By: breathinstephen http://breathinstephen.com/the-sarp-experience/comment-page-1/#comment-1460 breathinstephen Sun, 22 Nov 2009 19:57:49 +0000 http://breathinstephen.com/?p=9283#comment-1460 Btw.....I finally got the name on that wing joint correct..It's called "Quaker Steak and Lube" I think they're a chain Btw…..I finally got the name on that wing joint correct..It's called "Quaker Steak and Lube" I think they're a chain

]]> By: breathinstephen http://breathinstephen.com/the-sarp-experience/comment-page-1/#comment-1459 breathinstephen Sun, 22 Nov 2009 19:52:47 +0000 http://breathinstephen.com/?p=9283#comment-1459 Thanks Kerri, I'm still actively editing this piece, I might add more later. ( So much transpired, that I'm just now remembering.) Anyways, it was good chatting with you in between all the procedures. Its exciting to travel and all, but at the same time can get lonely too. It sure helps when you have good friends to connect with. Thanks Kerri, I'm still actively editing this piece, I might add more later. ( So much transpired, that I'm just now remembering.) Anyways, it was good chatting with you in between all the procedures. Its exciting to travel and all, but at the same time can get lonely too. It sure helps when you have good friends to connect with.

]]> By: kerri http://breathinstephen.com/the-sarp-experience/comment-page-1/#comment-1458 kerri Sun, 22 Nov 2009 19:43:13 +0000 http://breathinstephen.com/?p=9283#comment-1458 LOVE that pillow! i think we all need those sitting on our couches in our living rooms . . ! Definitely sounds as if you had a packed few days [even more-so than I gathered from our e-mails! Thanks for keeping me updated, btw, with the whole almost-real-time summary of what was going on.] Wow. I'm sorry about the FEV1 and bronchoscopy results. Regarding transplantation, I know it'll be a tough decision . . . I'm sorry you have to make it. :( Massive hugs, love and prayers comin' over from Canada, Steve. LOVE that pillow! i think we all need those sitting on our couches in our living rooms . . !

Definitely sounds as if you had a packed few days [even more-so than I gathered from our e-mails! Thanks for keeping me updated, btw, with the whole almost-real-time summary of what was going on.] Wow.

I'm sorry about the FEV1 and bronchoscopy results. Regarding transplantation, I know it'll be a tough decision . . . I'm sorry you have to make it. :(

Massive hugs, love and prayers comin' over from Canada, Steve.

]]>