Well five days after my initial post, I got the call for my lung transplant!! I now have new lungs - it is amazing! Having CF made me forget what normal breathing was like! So I don't need to know about them anymore :P But if anyone wants to ask me...
Cheers!

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"CF may win battles, but it will never win the war."

My fiance has cystic fibrosis and I was wondering if you could tell me more about your lung transplant. I was told that they could only do it if a relative gave you their lungs. Were you on a waiting list. Any info would be appreciated.

Thanks Tish

Tish,
As I live in Australia, I know for a fact that the way in which Lung Transplants are organised is totally different to those in the USA. I was put on a waiting list and waited for 12 and a half months before receiving my transplant, in Australia. It doesn't have to be a relative, just as long as the blood and tissue types match with the donor, it is ok. The waiting list in Australia is governed on a priority basis ie the sicker you become, the higher up the list you jump. What I have been told about the US list is that once you go on the waiting list, you have to wait for everyone in front of you to either receive theirs or unfortunately pass away, there is no "jumping the queue" so to speak if you become sicker than those ahead of you. Hope that's of some help http://www.healthboards.com/ubb/smile.gif
Aaron

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"CF may win battles, but it will never win the war."

Hi Tish,

I have a 26 yr old cousin with cf that just had a lung transplant on May 22. She had it done at USC Hospital In CA.

They do live donor transplants. We were able to find her donors in 2 weeks. One was a family member the other was a total stranger.

If she didn't have the surgery when she did she would not be alive right now. We were lucky to have found the donors.

We called and emailed radio stations and emailed tv stations and newspapers. I put up a web page about her. There were flers going around about her and everyone we knew was asking and emailing everyone they knew about finding her donors. The drs. were shocked at how fast we found the donors.


If you have any questions please email me at [removed]


[This message has been edited by moderator3 (edited 06-12-2001).]

My fiance has cystic fibrosis and I was wondering if you could tell me more about your lung transplant. I was told that they could only do it if a relative gave you their lungs. Were you on a waiting list. Any info would be appreciated.

Thanks Tish


My son is on the waiting list in GA and from what I understand the lungs have to be matched to the patient and do not come from family members.

I would encourage you to get to a CF specilist, possibly in Orlando, Tampa or Gainsville and have an evaluation for transplant. We live in Atlanta and were refered to the hospital in Gainsville so it must be very good.

Do not wait to long to get on the list. We almost procrastinated to long for him but he is now on the list. There is no harm in doing the work up and getting on the list.

Well five days after my initial post, I got the call for my lung transplant!! I now have new lungs - it is amazing! Having CF made me forget what normal breathing was like! So I don't need to know about them anymore :P But if anyone wants to ask me...
Cheers!

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"CF may win battles, but it will never win the war."

Aaron,

My son William is awaiting a transplant.

Would sure apperciate it if you or anyone else who was gone threw this wxperiance could e mail him@ (removed) and provide encouragement .

Thanks