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Post by susanny on Mar 29, 2013 11:03:29 GMT -5
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Post by deltagirl on Mar 29, 2013 13:43:24 GMT -5
I too saw this on television last week and it's very exciting news as it seems it will increase the donor pool numbers as well as the recipients recovery due to the improved condition of the transplanted organ.
Any possibility you could benefit from this program someday Sue?
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Post by susanny on Mar 29, 2013 20:37:58 GMT -5
I have to be able to get some rehab prior to transplant and nowhere here to do it. Need to talk to my pulmo next month about it. I'm scared but I want to live, you know? It's a lot to decide.
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Post by deltagirl on Mar 30, 2013 0:23:01 GMT -5
I do know, and it is scary as hell. But definitely talk to your doc about it. There will be hoops to jump thru and then the waiting, but like the machine you just posted about, things are improving every day. I've been waiting 30 months now and it's getting old (so am I!), but I am still hopeful and really looking forward to it, crazy as that may sound Best to find out your options and go from there, one step at a time - take care.
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Post by susanny on Mar 30, 2013 9:24:38 GMT -5
I didn't realize you were waiting for your new lungs, deltagirl. Do you mind my asking what your FEV1 is? And what was it when you first went to check into getting the transplant? I should have gone last year because I have become much worse and perhaps too bad to get them. I can barely walk from room to room some days and other days it isn't really easy. I was told that you have to be able to walk 600 ft in the 6 min walking test and I know I can't do that. Do you go to rehab to get strong or did you and what do you do while you are waiting? I have so many questions. One big thing I have to decide is which hospital to go to. My daughter lives in Pittsburgh and that would save us lots of money and give me someone to visit with me while in hospital and the after care time. But Cleveland is a lttle bit closer and better known to me as my daughter had surgery there for s omething no one else could diagnose. I know that last part shouldn't matter but it does.
I would just love to keep on living though. And living and breathing well. I know that's how we all feel. Good luck to you. I hope your call comes soon.
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Post by deltagirl on Mar 31, 2013 3:00:10 GMT -5
My Fev1 is about 14% right now. When I was first diagnosed in 2000 it was already at 28%, very severe, but I was still working full time in a physical job and managing quite well. Then in 2004 I was diagnosed with bladder cancer and since undergoing major surgery I was never able to really fully recover and have slowly slid downhill. I am cancer free now though, but had to wait five years till 2009 to get on the transplant list. I did take part in a rehab program a few years back and I did have to complete the 6 minute walk test as part of the transplant evaluation. But I tell ya, I couldn't do the whole walk now and can usually only walk for about 2-3 min when my RT tests me before my sats dip, but I'm still on the list. So that's not the only criteria. Check with your doc as it seems to be different though similar in every area. I knit, read, watch way too much tv to pass the time, try and enjoy the life that I do have. Thanks for your good wishes.
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Post by susanny on Mar 31, 2013 9:32:38 GMT -5
God bless you, Deltagirl. I will keep you close in my prayers. Do you mind sharing your given name? Although I'm sure God knows who Deltlagirl is, . Just would be easier for me. Have a happy Easter. OH, I see at the bottom of your post the name Barbara, is that it? I just noticed it when I went to scroll down and h it post. That was one of the quickest answers I've ever received!!!
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Post by deltagirl on Apr 1, 2013 0:18:01 GMT -5
Yup that's me. There are quite a few Barbs and Sues on this board!
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Post by susanny on Apr 1, 2013 9:48:56 GMT -5
There sure are alot of us, . Can you imagine the kindergartens back in the day? hahaha
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Post by aero63 on Apr 4, 2013 10:27:15 GMT -5
This is what I signed up for at the support group at Penn. It also cleanses and pumps antibiotics in it while in the machine. My doctor is the only to perform it at Penn at the time and they own one machine right now. My surgeon will be teaching other to do this. However, this means that they are specifically tiylored for you in a sense so when you get the call you either go or someone else has lost out.
I thought I had posted a link about it I will double check. It was the only support group I attended.
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Post by Blossom/Jackie W. on Apr 4, 2013 13:32:44 GMT -5
SueNy; thank you for this post! And I think that yes... I've seen this on the news as well recently. Gotta say Deltagirl; you TRULY are to be commended! Wow... I hope many others read this thread! And; unless I'm mistaken; this was originally developed (performed) in Toronto General? But; what's throwing me is like a curveball from what Antoinette added....., maybe they've expanded on it a bit? Or a deifferent proceedure....
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