Blood Group And waiting time?

[kitkatz]

Hey Kevno welcome back!  *Waves big stick your way*

[Rerun]

Tamara, I'm with you.  I got a "letter", but it doesn't mean crap to me.  I want to go on the Internet and find my name on the list.  You can't do that.  The transplant list is a giant BLACK HOLE if you ask me.   

[kevno]

I have seen a print off of the list in the renal clinic. I am on their. Only ever been called once 1991. Been on and off the list so many times over the last 18 years. I have only just got back on the list because of the problem with my leg. I have been working it out, and I have been off the list for a total of 6 years. through one thing and another

  kitkatz. Only been off the site for about ten days and it as so many new posts and members.

[Bette]

I am o negative and I waited just over 2 years for my first transplant in 1994.  It seems as if waiting times are getting longer.  I have a few remaining tests, but I am in the process of getting on the list again.

  Can't wait. 

[Fighter]

I'm A positive, and have been waiting for a year and 8 months here in Belgium. They told to expect a 2 year wait, although nowadays it might be more like 2,5 years on average. The US is known for its long waiting lists, I guess it's because of the diabetes "epidemic" over there, which is slowly catching on in Europe too I'm afraid...

[Wattle]

Tamara, I'm with you.  I got a "letter", but it doesn't mean crap to me.  I want to go on the Internet and find my name on the list.  You can't do that.  The transplant list is a giant BLACK HOLE if you ask me.   

   I just found this thread. We don't get a letter if you are on the list, you just have to trust what they tell you.
Calling the list a giant BLACK HOLE is just perfect... I feel as if I have been sucked in and allowed to just float around forever.   
I want proof they still remember I am here waiting.

A- Two years and four months. But hey whos counting 

[Meinuk]

A+ on the list since July 2005 in NYC.....  waiting......  Might get multi listed in PA & MD to up my odds......

[RichardMEL]

Just saw this thread... in Melbourne (oz) aparently wait time is approx 4 years.

I saw THE LIST - well a print out of it.. or I think it was it.. when I saw my transplant co-ordinator and asked exactly how long I'd been on. That's when I got the great news (not) about it.

I was listed in August 2003 - so nearly 4 years... but they only really count time on dialysis in terms of making decisions so from that point of view I've only been on 10 months so potentially have a long time to go.

Aparently here they weight it on blood group, then HLA match then time on dialysis.. which makes sense...

though the co-ordiator told me they were thinking of changing it a bit to give younger patients a better chance but that hasn't happened yet I guess.

[Wattle]

Just saw this thread... in Melbourne (oz) apparently wait time is approx 4 years.

I saw THE LIST - well a print out of it.. or I think it was it.. when I saw my transplant co-ordinator and asked exactly how long I'd been on. That's when I got the great news (not) about it.

I was listed in August 2003 - so nearly 4 years... but they only really count time on dialysis in terms of making decisions so from that point of view I've only been on 10 months so potentially have a long time to go.

Aparently here they weight it on blood group, then HLA match then time on dialysis.. which makes sense...

though the co-ordiator told me they were thinking of changing it a bit to give younger patients a better chance but that hasn't happened yet I guess.

Yep, thats right Richard. The waiting time starts the day of your first dialysis treatment. My question was "why bother telling me I am on the list before dialysis if it isn't going to make a difference!"       I was also disappointed when I found this out as I had been on the list a year before starting dialysis.

[kitkatz]

I will get eight and half years of wait time due to being on dialysis all of this time! Hot damn! Oh excuse me!

[Wattle]

I will get eight and half year sof wait time due to being on dialysis all of thsi time! Hot damn! Oh excuse me!

And so you should Kit you deserve every single day of dialysis to count for waiting time!!   

How are you doing jumping through those hoops?   

[RichardMEL]

You know this is so weird.. I read about folks in the US and elsewhere jumping through hoops to get on the list etc... I was just told I was on it.. I haven't had to do ANYTHING in relation to it... well anything apart from CKD and enduring dialysis...

I think KitKatz deserves a transplant big time. 8 years...phew!!!!

Actually Wattle they made a bit of a mistake with me and somehow my "start dialysis" date was set to sometime in April 2006 - 3 months before I actually started?!! I told the co-ordinator that and she said "don't worry.. we won't change it!" - yeah I know whoopee... a whole 3 months more... I guess it's something though.

The worst thing is when people start saying "oh well guess you better hope there's a bunch of car crashes this weekend" - I mean like I *WANT* someone to die for my chance??! That's a horrible thought!

[charee]

You know this is so weird.. I read about folks in the US and elsewhere jumping through hoops to get on the list etc... I was just told I was on it.. I haven't had to do ANYTHING in relation to it... well anything apart from CKD and enduring dialysis...

Hey Richard i find that really odd as here in NSW you have a whole bunch of tests that have to be done before you can get on the "list" , I' m not the only one that has had to do them. Maybe VIC is different . 

[Amanda From OZ]

I was placed on the first day i started dialysis, then they did test afterwards to make sure all was OK and i could stay on the list...

I also sometimes wonder how do we know we're "Actually"  on the list........ but i did receive a call once from the red cross, and they said that my blood sample had been contaminated and they needed me to do another one asap. Which was strange but i thought it was good that the called me.

[keefer51]

Amanda, I'm O+. When i started dialysis this time the first year or so i wasn't on the list. We got two new doctors and one talked me into again. I was told five years. I don't feel in my heart i am really on the list. I'll tell you why. After a year of being there i called to ask a question about my blood type. They said they didn't know. I think they like to dangle that carrot in front of me. When you have that kind of power with peoples lives there's no telling what they would do.

[Sara]

Amanda, I'm O+. When i started dialysis this time the first year or so i wasn't on the list. We got two new doctors and one talked me into again. I was told five years. I don't feel in my heart i am really on the list. I'll tell you why. After a year of being there i called to ask a question about my blood type. They said they didn't know. I think they like to dangle that carrot in front of me. When you have that kind of power with peoples lives there's no telling what they would do.

Keefer,  Joe is O Positive also, and he was told average 2 years I think, although he's on for kidney/pancreas.  Do you know if that's why there's a difference, or just different parts of the country?

[paris]

Different countries obviously have different procedures to qualify a patient to be on the list. Why would a patient be listed before he was evaluated thoroughly?  You would want to make sure there isn't an unknown cancer or heart problem before giving one a kidney.  I have been told that one can receive a pre-dialysis transplant once the evalulations have been completed; with the thought that the "healthier" you are the better chances you have.  The "list" has alot of variables and factors to determine who is next on the list.  After all of that ------ I don't care how they do it -I just want a kidney!

[skyedogrocks]

Amanda, I'm O+. When i started dialysis this time the first year or so i wasn't on the list. We got two new doctors and one talked me into again. I was told five years. I don't feel in my heart i am really on the list. I'll tell you why. After a year of being there i called to ask a question about my blood type. They said they didn't know. I think they like to dangle that carrot in front of me. When you have that kind of power with peoples lives there's no telling what they would do.

Keefer,  Joe is O Positive also, and he was told average 2 years I think, although he's on for kidney/pancreas.  Do you know if that's why there's a difference, or just different parts of the country?

It definitely matters what part of the country you are in in terms of waiting list.  The Northeast and California have the longest waiting list.  This is due to the population size. 

We were told that states like Florida or the midwest have a shorter waiting time.  Right now Massachusetts has a 5-7 year long waiting list...count on closer to the 7 years.

Rob is O also...the absolute worst blood type to have if you want a transplant  . 

However, if you go for the kidney/pancreas transplant, the waitlist is shorter.  Rob has decided to have his pancreas transplant after his kidney.  We were told by his surgeon that he has a better chance of his kidney working better and both organs lasting longer.

I dislike the transplant coordinator that is working with us, she isn't the most helpful person in the world.  However, his hospital is at one of the worlds best for transplants, so we suck it up.   

[Sara]

Thanks for the info.  The neph mentioned he could have the pancreas done later (like if he gets a relative kidney) but I've read here and there that it's worse to do it separately, since it's harder on your kidney to have surgery and higher doses of drugs again, or something like that.

[jedimaster]

Where I live, the wait for a O+ is 7 years...I have 6 to go....almost there!

[RichardMEL]

Well maybe because my labs are pretty good (everything is in the good range except Calcium which is just around 2.6 so a bit high)... I don't know but I do know I've not done anything specific to a transplant.. at least they've never told me anyway. I did a bunch of like EKG's and ultrasounds and god knows what for a trial I was on, but that was for the trial... but I do know I'm on the list. I must ask the co-ordinator next time I see her.

However I do know I am on the list!

The list! The List!!! I don't know why but I have images of Schindler's List running through my head....

[Wattle]

  I was initially told it would be a four year wait. I thought to myself... o.k thats achievable... i can do it.

Yesterday... a different consultant told me its a seven year wait. Same hospital different doctor different answers.   

[Amanda From OZ]

Wattle i got told ll different average weight time also..... 3 ...7 ... 10!!! i don't even bother asking now! They don't have any idea  I guess its a lottery... your time can come at any time.

[okarol]

When Jenna was 1st listed they said it was a 4 - 6 year wait for O blood types (Los Angeles.) At her 1 year follow-up apppointment they said it was a 5 - 7 year wait. At her annual appointment after 2 years they said it was STILL 5 - 7 years.
ARRRGGGHHHHH!!!!!

[Wattle]

Its o.k. I am still telling myself... "You can do it" I suppose I just have to suck it up!