Transplant Lists

[Rerun]

I see where Toad must be on a transplant list if he can't be more than 5 hours away from his hospital.  That made me wonder how many of us are waiting.  I'm in the process of getting on the list.  I have surgery on Tuesday because of a bad mamogram.  No cancer (I hope) but a-typical cells that they want out.   

[toad]

i have been on the list for 2 years..got my pager 2 months ago...probably have another atleast one year to wait due to my blood type.....also on a pancreas waiting list due to being a diabetic all my life

[Bajanne]

We don't even have a list in this country.  If you have someone who is willing to donate a kidney, you get hooked up in Britain.

[LifeOnHold]

After the disasterous first transplant (prednisone-induced psychotic reactions) I took my name off of the list-- I want them to figure out a way to do transplants without any prednisone before I even think about getting another kidney.

[Rerun]

Bajanne:  In Britain, if you don't know someone willing to give you a kidney, how do you get one?  Don't they do cadaveric transplants?  They must do heart and liver transplants and you can't have a living related heart! 

Lifeonhold (LOH):  One of the reasons for my divorce was because my ex-husband said I had prednisone mood swings?  I DID NOT HAVE FLIPPING MOOD SWINGS DAMN IT!!!!!   (see?)    

T-Shirt Saying:  "I'm on Prednisone... and I know how to use it"   

[Michelle]

Not at present-see other post lol.

Refused to go on the list after my second one 20 years ago as it failing was so trumatic I couldn't face it again. Then decided what the heck got nothing to lose and fate stepped in and said 'too late buddy'.

Edited to add: I am in Britain and we do have a waiting list so was a bit confused by Bajannes comments too. It can often be a long wait over here and they have extended the live donor programmes because of it, but its not the only option.

[Bajanne]

We don't get the kidney from Britain.  Someone here (friend or relative) offers theirs and if it is a match, the operation is done in Britain.  I live the in the British Virgin Islands (an overseas territory of Britain) so that is where the gov. sends you to have it done.  (it's cheaper than sending you to the States!)

[Epoman]

See reading your guys posts is one of the main reasons I never wanted a transplant. I do not want to be a human roller coaster. I will be on dialysis till the day I die. I never want a transplant until they can do artificial kidneys.

And with my luck the DAY I DIE is the day they will implant artificial kidneys. 

[LifeOnHold]

I have MPGN (Membranoproliferative Glomerulnephritis)  which is a disease that attacks kidney tissue-- my body sees kidney tissue as a foreign substance that must be destroyed.  It's what killed my transplant, too... so having another transplant is useless until they figure out a way to stop the MPGN.  Any transplant I get will just be destroyed by my body, even if they cloned my native kidneys and didn't have to use immmunosuppressors.

You'd think the doctors would understand that-- but yet they keep trying to sell me on another kidney!  WTF?!   

[toad]

life i am in the same boat...i have FSG (focal sclerosis glomular nephritis)...i have been told also by the doctors that even with a transplant it can come back and attack the new kidney...but i am willing to give it a try obly because i have 3 kids and 2 grandkids and a wonderful wife who has stood bye me for these many years.....so i am willing to try anything for them

[Epoman]

life i am in the same boat...i have FSG (focal sclerosis glomular nephritis)...i have been told also by the doctors that even with a transplant it can come back and attack the new kidney...but i am willing to give it a try obly because i have 3 kids and 2 grandkids and a wonderful wife who has stood bye me for these many years.....so i am willing to try anything for them

You are a good man.

[susie q]

Here in Canada, your seniority on the waiting list goes by your dialysis start date, I just finished all the testing this summer.   It is a very long list... my brother waited 8 years, had a transplant 5 years ago.. doing well.

[Rerun]

Ya know, I've been HELL bent on getting on the list after my kidney of 17 years failed.  But, the more I read your posts, I think the realization of what a huge responsibility a transplant is, is surfacing.  It is a "roller coaster" ride, it is very "traumatic" going through the slow process of the transplant failing.......and it will fail at some point... unless you die of something else. 

There is the surgery, and the drugs, and the expectations of you after transplantation is almost too much.  People think you are cured and normal, and you are NOT!  Yes, it is a better quality of life (in a sense) then Hemo or PD because you have your time back and your schedule and your freedom, but a Transplant is not a cure, it is just another form of dialysis and you are dealing with A LOT if issues. 

There is a LOT of pressure off me now that I'm on dialysis.  Supervisors at work don't pile the work on me, neighbors help me...  Nothing has really changed, except they can SEE that I'm on dialysis.  They have SEEN me get the fistula and the Hickman catheter. They have SEEN me hooked up to a machine with my blood running through the tubes.  With a transplant they only see a round face and they just think I'm fat.   

Your posts have helped me understand these feelings that have confused me for a long time.  Thanks!!~

[KT]

I hate dialysis and long waiting lists. I hate lines of traffic, so would like to go to the front.
A friend of mine has returned from getting transplanted in the Philippines. I am thinking of going to see that place.
I just want a reasonable wait,  not what we have here. 

[MelissaJean]

Where do you live KT?  Also, what is the success rate of Kidney transplants in the Philippines?  Are they as medically advanced as the US?

[coravh]

After the disasterous first transplant (prednisone-induced psychotic reactions) I took my name off of the list-- I want them to figure out a way to do transplants without any prednisone before I even think about getting another kidney.

Some places are now starting to do steroid avoidance. It has been almost 4 years since my transplant (Oct. '02) and I was on prednisone for only the first week. I have had no rejection (knock on wood) and am doing well. My bones have improved since I was on dialysis too.

Cora