I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Amanda From OZ on August 23, 2006, 03:02:43 AM
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Hello All...
I am not sure if this is the right section to post this in but i wanted to ask the people who are on a waiting list what blood group they are and how long they have been waiting on the list for.
I myself am- 0 Rh Positive and have been waiting 2 and half years.
Topic moved to appropriate section - Bajanne2000\Moderator
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I am A positive, although I have only been on the transplant list one month. :P In Northern California the waiting list for A blood type (as I was told by my center) is 4-6 years and for 0 it is 5-7 on average.
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Thanks! what a long time :(
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Hi Amanda,
I am O+ and have been on the transplant list in Georgia for 16 months. They keep calling to ask if I have a
living donor and I say the same thing "NO". Expect to be 5 years or more on the list.
SCYankee
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I'm type O. Not on the list at the moment. Waiting a bit for something better than the steroid therapy. However the first time on dialysis once I was on the list it was only 6 months before a transplant.
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Iam b positive and am half way through the tests to get me on the list. Been told it will be at least 5 years waiting list.
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i guess it would be different in every country. In Australia the average waiting time is 3 years.
where are you all frrom??
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Hey Amanda I 'm from aus also and have been told 5 years. I have a 25 years old friend also on the list and she has been on it for 4 years and has never had a call up. What hospital are you under ? I am under the Dr at Royal prince Alfred in Sydney.
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I'm from Northern California too and have been waiting 6 months with a A type blood. I don't think the + or - matter.
But hey, Labor Day is coming up!! ;D
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I am O+ and have been waiting now for 5 years and counting ..
I am from Ontario Canada only minutes away from the American border.
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I am from Alabama and my blood type is AB. I have been on the list for three months and was told to expect 4-5 years. People with A or B or O have a slightly longer wait time.
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I'm a blood group A person and waited a total of about 2 years and 3 months on the list until transplant. Total time on dialysis was 2 years and 9 months. Total time so far with the transplant is almost 4 years and 10 months. I live in southern California and was multiple listed at two transplant centers. It is a strategy everyone should consider for a faster transplant.
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O+ Not listed yet....Seven and a half years and counting...
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damnit that list is long :(
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Hi,
I'm O and had my transplant just over 6 months ago. I'm in the UK and was on the list for 16 months.
Mike :)
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I'm an O+ I started all my blood workup 6 years ago and in 20 days I go to UCSF for the eval. Don't even know if I quailify yet but I have really good insurance does that count?
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I'm not to sure if insurance counts, well not in OZ anyway :)
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Oh in California??? maybe?? but still not real sure I want a transplant of someone else's body parts??
It makes me queezy to think someone has to die so I can live.... Just don't know how I feel about this... and did'nt have to think about it until I got the call last week for the eval.
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Well i only know about Australian Patients, and if your health is good, then ANYONE can get on the list.
My father has had a transplant for 26 years my sister 10... i am still waiting.
I know its hard to think that someone has to die for you to live, but i guess there dead ... they don't need there organs in heaven :)
Everyone is different............ i myself couldn't live on dialysis... transplant all the way
Amanda
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Oh in California??? maybe?? but still not real sure I want a transplant of someone else's body parts??
It makes me queezy to think someone has to die so I can live.... Just don't know how I feel about this... and did'nt have to think about it until I got the call last week for the eval.
They don't have to die for you to get the transplant. They're dying anyway. Their organs would just 'go to waste' if you or someone else didn't receive the transplant.
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Don't ask what it means I have just been reading my "National Blood Service Antibody Card" We all get them in the UK, that is if you ASK :D. When I asked the Doctors they are very hazy with the answer.
Blood Group: A RhD Positive
Antibodies : Anti-K
Been on and off the list this time for over 19 years. Was on the list 1 Year before my Transplant failed. So been waiting for another Transplant for 18 years.
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Hey Kevno, long time no see, where ya been buddy? is everything ok? glad to see your ok :clap;
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A long story. A bit of a disagreement with Epoman, we have both made up now ;) :grouphug;
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Well, i am glad to see you are back and doing good, DONT SCARE ME LIKE THAT AGAIN!!! ;)
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Don't ask what it means I have just been reading my "National Blood Service Antibody Card" We all get them in the UK, that is if you ASK :D. When I asked the Doctors they are very hazy with the answer.
Blood Group: A RhD Positive
Antibodies : Anti-K
Been on and off the list this time for over 19 years. Was on the list 1 Year before my Transplant failed. So been waiting for another Transplant for 18 years.
Kevno, that is just wrong being on the waiting list for so long.
I would be writing to everyone under the sun to get this noticed.
This is the problem, how do you know you are actually on the list, its just trusting the health system that you are .
It's not like we get a letter " :clap; Congratulations you are now on the list :clap;"
There's always that doubt in the back of my mind, is everything cool with my info and being on the list.
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Hey Kevno welcome back! *Waves big stick your way*
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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. :-\
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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 :-\
:thx; kitkatz. Only been off the site for about ten days and it as so many new posts and members.
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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.
:2thumbsup; Can't wait.
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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...
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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. :-\
:bump; 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. :banghead;
I want proof they still remember I am here waiting.
A- Two years and four months. But hey whos counting :P
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A+ on the list since July 2005 in NYC..... waiting...... Might get multi listed in PA & MD to up my odds......
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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.
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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!" :banghead; I was also disappointed when I found this out as I had been on the list a year before starting dialysis.
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I will get eight and half years of wait time due to being on dialysis all of this time! Hot damn! Oh excuse me! :waving;
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I will get eight and half year sof wait time due to being on dialysis all of thsi time! Hot damn! Oh excuse me! :waving;
And so you should Kit you deserve every single day of dialysis to count for waiting time!! :cuddle;
How are you doing jumping through those hoops? :boxing;
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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!
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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 . ???
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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.
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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.
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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?
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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!
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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. >:(
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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.
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Where I live, the wait for a O+ is 7 years...I have 6 to go....almost there!
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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....
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:banghead; 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. :urcrazy;
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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 :urcrazy; I guess its a lottery... your time can come at any time.
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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!!!!! :banghead;
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Its o.k. I am still telling myself... "You can do it" I suppose I just have to suck it up! :boxing;
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wattle how long have you been on the list now. Its nearly 3 1/2 years for me!
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wattle how long have you been on the list now. Its nearly 3 1/2 years for me!
Two years on dialysis for me and thats when they start the clock. The first dialysis session. I have a long way to go.
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I am O+ and for a kidney it's a 7-8 year wait here. It's the worst blood type. I'm listed at UCSF and I'm going to LA next month to get evaluated for another program there.
I'm doing the simultaneous kidney/pancreas which brings my wait time down to 1-3 years. :bandance; From what I've been told, it's the pancreas that is more likely to fail, and it's harder on your body to do them separately.
I guess we all get different stories. :-\
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Hey Chick,
If it were me I would get evaluated in the San Diego area - the wait is 3 - 5 years. We used Scripps Green Hospital and they were wonderful. I believe livecam had a good experience at UCSD. The LA area will not benefit you as the wait is worse that SF. Good luck!
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Hey Chick,
If it were me I would get evaluated in the San Diego area - the wait is 3 - 5 years. We used Scripps Green Hospital and they were wonderful. I believe livecam had a good experience at UCSD. The LA area will not benefit you as the wait is worse that SF. Good luck!
Karol, Why is the wait different at different hospitals? Our waiting list is State wide, then if no one matches it goes National. It makes no difference what hospital you are with. The waiting list is run by the Red Cross.
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Hey Chick,
If it were me I would get evaluated in the San Diego area - the wait is 3 - 5 years. We used Scripps Green Hospital and they were wonderful. I believe livecam had a good experience at UCSD. The LA area will not benefit you as the wait is worse that SF. Good luck!
I'll check it out. Thanks!
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Hey Chick,
If it were me I would get evaluated in the San Diego area - the wait is 3 - 5 years. We used Scripps Green Hospital and they were wonderful. I believe livecam had a good experience at UCSD. The LA area will not benefit you as the wait is worse that SF. Good luck!
Karol, Why is the wait different at different hospitals? Our waiting list is State wide, then if no one matches it goes National. It makes no difference what hospital you are with. The waiting list is run by the Red Cross.
The hospital doesn't matter hear, it's the area. I just mention those 2 hospitals in the San Diego area because I am familiar with them (Good coordinators, experienced surgeons, etc.) Each state is divided up in to Organ Procurement Organizations. They try to keep the organs local to reduce the time from donor to recipient. If there is no local match it can go to another procurement area. Los Angeles has a large population and and longer wait time. In San Diego the population is less. There is also a large number of ederly patients in San Diego (retirement area) that are willing to take extended criteria organs, which takes them off the list sooner.
This is from http://www.organtransplants.org/understanding/unos/ and explains it better "
"Specifics of waiting list rules, which can be seen at OPTN website, vary by organ. General principles, such as a patient's medical urgency, blood, tissue and size match with the donor, time on the waiting list and proximity to the donor, guide the distribution of organs. Under certain circumstance, special allowances are made for children. For example, children under age 11 who need kidneys are automatically assigned additional points. Factors such as a patient's income, celebrity status, and race or ethnic background play no role in determining allocation of organs.
Contrary to popular belief, waiting on the list for a transplant is not like taking a number at the deli counter and waiting for your turn to order. In some respects, even the word "list" is misleading; the list is really a giant pool of patients. There is no ranking or patient order until there is a donor, because each donor's blood type, size and genetic characteristics are different. Therefore, when a donor is entered into the national computer system, the patients that match that donor, and therefore the "list," is different each time.
The other major guiding principal in organ allocation is: local patients first. The country is divided into 11 geographic regions, each served by a federally-designated organ procurement organization (OPO), which is responsible for coordinating all organ donations. With the exception of perfectly matched kidneys and the most urgent liver patients, first priority goes to patients at transplant hospitals located in the region served by the OPO. Next in priority are patients in areas served by nearby OPOs; and finally, only if no patients in these communities can use the organ, it is offered to patients elsewhere in the U.S.
Contrary to the image of organs always crisscrossing the country, 80 percent of all organs are donated and used in the same geographic area."
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Thanks Karol. I understand now. I was assuming San Diego would be in the same "area" as LA. But the states are divided smaller again.
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In my area, the two hospitals I am listed at have very different statistics. One says 6-8 years for kidney and the other says 2-3 years. It does pay to look into other hospitals near you.
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I am glad people are recommending multiple lists. Most people are not aware that they can do that. I am from Pennsylvania. I met a family that drove across country in an RV to be on the transplant waiting list here. They were from California. They were told Fla and PA had the shortest lists.
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but romona, once they get the call they have to be able to get to the hospital within three hours. How can they do that from California to Pennsylvania??
I'm A and was told the average wait for my blood type would be 1.5 years. However, with my PRA, my own wait will be much longer (5-7 perhaps?). Been only six months so far.
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Hello! I should have explained it alittle better. They actually moved. The man wasn't cleared by doctors to fly so they drove cross country to move here. I think his story is incredible. They sold everything they owned. Not everyone can do this. I really admire what they did. I don't think I would have had the courage to do that.
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Wow, that is amazing! I wouldn't have been able to do that, either!