Pilotallen From United States of America, joined Nov 1999, 656 posts, RR: 4 Posted (8 years 5 months 3 weeks 5 days 9 hours ago) and read 800 times:
I've come here with a problem. My cousin Neil is 29 years old and suffers from Cystic Fibrosis. He is very sick now and has been in the hospital for the past month. He is in desperate need of a lung transplant. He has two options either a living donar or he can just wait unfortunatly time isn;t on his side. To make matters worse hes Type AB+ which is very rare. If anyone is interested in becomming a donar or would like to get more information please email me or visit www.neilweston.com
thanks for you time. -Josh Allen
DIJKKIJK From France, joined Jul 2003, 1669 posts, RR: 5 Reply 1, posted (8 years 5 months 3 weeks 5 days 7 hours ago) and read 772 times:
Sorry that your cousin is in pain. You may want to check out the UNOS database of organ donors. They can be found at http://www.unos.org/data/request_main.asp. Maybe you can find someone who can donate a lung for your cousin.
Good luck and hope you can find a donor.
Never argue with idiots. They will bring you down to their level, and beat you with experience.
UAL Bagsmasher From United States of America, joined Sep 1999, 2130 posts, RR: 11 Reply 3, posted (8 years 5 months 3 weeks 5 days 7 hours ago) and read 757 times:
I knew a kid in High school with Cystic Fibrosis. He'd have to get his back pounded on every so many hours to clear his lungs. He was a great student though. He made it to his graduation exercises, much to everyone's surprise. By this time he was really going downhill fast. Although difficult, he was able to walk down the aisle to receive his diploma. He received a well deserved standing ovation for several minutes. It was really moving. Sadly, he passed away a few weeks later. I wish your cousin the very best. Don't give up hope.
Whitehatter From , joined Dec 1969, posts, RR: Reply 4, posted (8 years 5 months 3 weeks 5 days 6 hours ago) and read 750 times:
Surely AB+ would work in his favour? That blood group is rare, but is referred to as the Universal Recipient as an AB+ patient can be given any form or factor of blood in a transfusion. I would have thought that this would be a benefit in finding a donor organ. A bit of Googling confirms this.
Pilotallen From United States of America, joined Nov 1999, 656 posts, RR: 4 Reply 5, posted (8 years 5 months 3 weeks 5 days 6 hours ago) and read 730 times:
I have to say that I am not too knowlegable about CF I wish I was but from what i hear its really tough to find one. if anyone knows of someone too who might be interested let me know. -Josh email me too if you want firstname.lastname@example.org
Whitehatter From , joined Dec 1969, posts, RR: Reply 6, posted (8 years 5 months 3 weeks 5 days 6 hours ago) and read 724 times:
I've seen quite a lot of stuff acout CF and what will probably happen is a dual transplant, where the lungs and heart of a donor are transplanted together.
This makes it all much simpler and the chances of complications are lower.
If this happens, often the CF patient will then have their heart donated to someone else as their heart isn't affected. It is supposed to be a very strange but also rewarding experience to know that from one loss of life (the donor) two people have been given new organs and hope, and that your own heart is now helping someone else live.
So don't be despondent at this stage, finding a lung donor is about as hard (or easy) as finding a donor for a heart transplant. And they happen all the time.
777heavy From , joined Dec 1969, posts, RR: Reply 8, posted (8 years 5 months 3 weeks 5 days 5 hours ago) and read 707 times:
No, its not very likely that both organs, lung and heart will be transplanted. Only if the heart is in a bad condition, too. To transplant a healthy heart makes no sense at all because its still a complicated surgery and to transplant both organs makes it even more complicated and then you have also the risc of rejection of 2 organs.
Also your statement the heart isn't affected isn't true, due to the bad O2 absorption of the CF-lung the heart has, particularly in elderly patients more work to do. It has to beat on a higher rate. That often results in an increased heart volume.
Whitehatter From , joined Dec 1969, posts, RR: Reply 9, posted (8 years 5 months 3 weeks 5 days 4 hours ago) and read 698 times:
To transplant a healthy heart makes no sense at all
Tell that to the surgeons. That surgery is commonplace as it means the heart and lung structure can be transplanted as one complete item, like taking the engine and transmission from a car rather than one at a time.
Risk of rejection is also completely wrong in this context, there is no more risk transplanting both at once than just the lungs alone. Finally if the patient's heart is in good shape then simultaneous transplants are done if a recipient is available. This procedure was exactly what happened to a young woman not too far away from where I live, and she went on to return to work and even meet the recipient of her heart.
777heavy From , joined Dec 1969, posts, RR: Reply 10, posted (8 years 5 months 3 weeks 5 days 3 hours ago) and read 690 times:
That surgery is commonplace as it means the heart and lung structure can be transplanted as one complete item
Maybe in some cases its indicated to transplant both organs but in the German language area, which I only can talk about, its common for CF-patients to make only a lung Tx, in the majority of cases a so called double lung Tx. The heart is only in very seldom cases transplanted, too. E.g. if the heart is irreversible damaged. In the early years of CF transplantation it was common to transplant both organs but research has improved and showed that only a lung Tx is necessary in most cases. Maybe the young lady in your neighborhood wasn't a CF patient?
I know several successfully transplanted CF patients, all of them are only lung transplanted. Last but not least in Germany its strictly prohibited to inform either the donors nor the recipients about each other. Very weird policy in the UK?!
Springbok747 From Australia, joined Nov 2004, 4387 posts, RR: 13 Reply 11, posted (8 years 5 months 3 weeks 5 days 2 hours ago) and read 679 times:
So sorry to hear about your cousin. One of my close friends brother also suffers from CF, and his blood group is O -ve....which is very rare. The doctors weren't very optimistic about finding a donor (he also needed a lung transplant), but guess what, they found one just last month, and he is scheduled for an operation next week at the Children's Hospital here in Adelaide. Hopefully everything will go well, and I'm hoping it will work out for your cousin also.
All the best to your cousin, and you don't give up...never ever give up!
Pilotallen From United States of America, joined Nov 1999, 656 posts, RR: 4 Reply 12, posted (8 years 5 months 3 weeks 4 days 14 hours ago) and read 639 times:
hey guys thanks for all your responses, I don't think they are looking for a heart transplant right now, They are focusing on the lungs since that is crucial right now, the heart is number 20 in a list of a thousand things tha tneed to be done. anyway ill keep you guys posted also again if anyone knows anyone who miht be interested in a single lobe donor feel free to contact me, thanks guys -Josh
Pilotallen From United States of America, joined Nov 1999, 656 posts, RR: 4 Reply 13, posted (8 years 5 months 3 weeks 4 days 2 hours ago) and read 607 times:
If anyone has any more info or ideas let me know, i like the radio station one that was good idea i already mentioned it to my aunt and she's gonna make some calls come monday. One thing i foudn out was that they usually like to have the donar at least 3-4 inches taller than the recipent...my cousin is 6'2" kinda hard to find many people taller. anyway thanks again for the posts.
Pilotallen From United States of America, joined Nov 1999, 656 posts, RR: 4 Reply 15, posted (8 years 5 months 3 weeks 2 days 11 hours ago) and read 555 times:
well just to update some people the doctors have been trying to wean him off the ventilator at the hospital now at 16 or 18 ( i cant remember what exactly that is, some amount of air goign in or something) anyways, still has a 50% chance of even comming off the machine at all. once they can contain everything they will put him back on the list for a transplant evidently they took him off because of his poor health. anyway ill update everyone as time goes on. thanks again -Josh