I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Amanda From OZ on November 10, 2006, 06:52:24 AM
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Well Today i went off to have my annual pre-transplant assessment, which i found to be very frustrating! Firstly on a positive, my test results were perfect, they said i have perfect blood results, heart tests, lung, and said i was probably one of their top patient. But i was also told the news that NSW (Sydney Australia's) waiting time has gone from 3 1/2 to 7 years!!! This is because Since 2004 /2005 they have changed the rules, and regulation on who gets a kidney. It comes down to how long you have been waiting instead of age and all the other things. NOW because of this the people who were waiting 3 years will now be waiting an average of seven, which i found to be so frustrating. I slightly understand the reasons for this, but it doesn't make it any less frustrated. :banghead;
They say they want you to stay healthily but when you are a "healthy" candidate, they make you wait longer and longer, until then you do get sick, and all the problems start.
They said i better start looking for a living donor. FOR GOD SAKES IF I HAD SOMEONE WHO WANTED TO HELP ME, (HONESTLY HELP ME) THEY WOULD OF DONE IT ALREADY. I have had a lot of people offer be a kidney to be nice, but you know they never mean it. so when they do say it i say oh no I'm OK. Next time they ask me I'm going to say yes OK great thanks. That will shock the S#$@ out of them. >:D
How are the organs selected to people in your state or country, it will be good to know!
Thanks for listening to my babble!
I'm sure i will be less negative tomorrow!! I just cant imagine waiting seven years or more ( sorry i know a lot of you have been waiting even longer :(
Amanda
xoxox
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Here in France they have a national transplant coordination agency that oversees the whole process.
Now in regards to priority it is established as follows but not in this particular order:
closest antigen match ( fairly obvious answer )
proximity of the organ and the patient
age
( I believe I'm missing something ).
As such the wait differences from one area of the country to another vary greatly but it's only something like going from 6 months to a year.... very short waiting time for the easy to transplant patients ( rarer blood types and high antigens are obviously still a problem here as they are elsewhere ).
Several reasons as to why the wait is shorter is because there are less patients waiting.
A huge portion of people who have mild kidney failure here are able to get proper care to push back dialysis as long as possible because the system is more pro-active in detecting health problems.
Not to say other systems are worse as every country has it's own set of issues, but because hospitals and doctors are more accessible here people got see a doctor much more easily whenever something seems "wrong" so problems are more prone to being stopped before urgency sets in.
Good luck with your wait. I hope things turn out for the better in a quicker manner.
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Awww, so sorry your having a rough time. It can be very frustrating just sitting around waiting. The average waiting time here in the states is different in every state and is just an average and also differs depending on your blood type, not an exact time frame. For example, I was living in Las Vegas, and I was put on the waiting list there, I am O+ and my "average" waiting time there was 2 years. I then moved to Iowa, where my average waiting time is 3 yrs. However, just because this is my average waiting time, it doesn't mean I will have to wait 3 yrs exactly.. I could get a call tomorrow... or 10 years from now... it all depends on many factors... such as age, wait time, antigen match, blood type, health... and so on. I have been waiting 2 years this December... seems like forever... never knowing when the pager will go off, or the phone will ring... a perfect match goes to the person who matches the kidney perfectly first before anyone else even if someone else has been waiting longer. It's a long process and a frustrating one.. all you can do is simply be prepared... sta as healthy as you can so when you get the call.. nothing stops your transplant. Good luck, and keep hope. :)
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Here in Belgium the average waiting time is about two years, but obviously you could wait a lot less or a lot more. Two friends of mine from the same dialysis center got mixed fortunes: one waited four months :2thumbsup;, the other four and a half years! :banghead; I don't know anyone who's waited 7 years though. There are people who have been on dialysis much longer than that, but they are either not on the list or have been recently put on it.
All transplants in Belgium are managed by Eurotransplant, and the donor pool consists of: Austria, Belgium, Germany, Luxembourg, the Netherlands, Slovenia and Croatia :grouphug;
www.eurotransplant.nl
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Aww Amanda i am so sorry to hear that, dont give up hope though, i am glad your healthy hopefully someone will come to their senses and do what is best for YOU!!! We are here for you girlfriend, keep us posted ok, and keep on keeping on :thumbup;
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I know it may not help, but its said good things are worth waiting for. I hope if a transplant is what you desire, the wait goes fast for you.
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In Jan. 2004 the transplant team at USC (Los Angeles) told Jenna her wait time would be 4 to 6 years.
When she went for her annual evaluation in Jan. 2006 they said the wait for her is now 5 - 7 years!
The list is expanding and the people waiting the longest are still waiting! This is from an article I just read
"The number of patients requiring a kidney transplant has grown exponentially. It has been estimated that
by 2010, a patient will have to wait 10 years for a kidney transplant, and that is if they don't have harmful
antibodies," said Dr. Montgomery, who has spent the last 17 years of his medical career at Johns Hopkins.
UNOS is proposing changes. Currently a patient's waittime begins when they are listed by a transplant team.
Children get extra points, as do people who themselves have been living donors. The new change would use
the date you began dialysis. They are also exploring an optimization that would take age of the patient into
consideration, but none of that is in effect yet.
I am sorry that it is so frustrating. If you can find a living donor it would probably be the best bet, in my
opinion. I have met people from Canada on livingdonorsonline.org who have posted their story in
"looking for" on the message forum. I don't know how many actually met a donor that way, but you'd be
surprised how many people there are that will donate a kidney if they know there is a need.
Good luck!
~Karol
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The story goes that if you are O+, you wait the longest.
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You are correct Zach... O+ has the longest wait... which sucks.. cuz i'm O+ >:(
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Thank you so much for all your comments and support.
Everyone on this site deserves the best, you are all such great people. :grouphug;
Like someone stated above "good things come to people who wait" so i will try to be as brave as all of you .
Thanks
Amanda
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You are correct Zach... O+ has the longest wait... which sucks.. cuz i'm O+ >:(
So is Joe. It sucks. :(
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Yeah i am O Positive also. My doc says sometimes it can work for you or against you.
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Yeah i am O Positive also. My doc says sometimes it can work for you or against you.
Amanda, stay positive, I'm sure everything will work out for you.
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Yeah i am O Positive also. My doc says sometimes it can work for you or against you.
Amanda, stay positive, I'm sure everything will work out for you.
Or you could just move...
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Thanks..... Yeah thats always an option. I should move to South Australia the waiting list is only 2 years!
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I can see all the O+ patients moving to Southern Australia. I have my bags packed, waiting to go... Just need money and a job to go there. Do they need special education teachers???
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You are correct Zach... O+ has the longest wait... which sucks.. cuz i'm O+ >:(
I am O+ as well :( Been waiting 5 years so far and they said back in 2001 that is was an 8 year wait .. and the wait keeps growing longer and longer and when I got Peritonitis last year I was taken off the list until December..
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I find it really interesting to see the different wait times. Here in Canada there is no unified system. It is done strictly regionally and is very inefficient. Between Ottawa and Toronto, blood type B patients have a long wait. Last I heard the average wait was 12 years. Apparently around here it is so rare that the 2 cities split whatever B organs become available. I think for most other blood types it is a 3 - 5 year wait. I was really lucky. I was on dialysis for only 1 year and then my cousin gave me a kidney. We were only a 1 antigen match, but things are going well.
Cora
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Amanda, If you have someone in your life who has offered to give you a kidney, and they really mean it, are you okay with that? Maybe you should think about it. I know it's hard. I thought I would not want to get a kidney from a live donor because I just couldn't imagine asking someone for a kidney. But, since people have found out that I'm starting dialysis, I've had my sister, my aunt and a friend all volunteer to be tested. I can't even look at getting a transplant until I'm off the immunosuppressants I'm on for vasculitis, but, when the time comes, I think I will let them get tested, if they really mean it.
It's taken me a long time to make this decision, and I'm not saying it's right for everyone, but maybe you should at least think about it. I hope it all works out for you.
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thanks for all your comments..... maybe we should all move to south Australia ;)
Yeah the next times someone offers i will say "YES" and give them all a huge shock :D but like Epoman i have a few people who i believe should of offered me a kidney. I would do anything to help someone, i don't understand how some people wouldn't. Everyone deserves a second chance.
Mallory i believe you have ,made the right decision. Good luck with it, and i hope you get your transplant soon
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Just started my transplant workup today. Not sure if I'm going on the "list" yet or not, but after I read this I checked out some data on the UNOS site and found that out of the 2,103 people on the waiting list for a kidney in the state of NC, 328 have my same blood type. Not sure if that's good news or not, but it looks like most patients here are on the list for less than 5 years which is less than what I thought it would be. Only 276 of the 2,103 have been on the list for more than 5 years. But knowing my luck I would be one of the over 5 years gang. If you are interested in checking your state or region stats check this out ... http://www.optn.org/latestData/viewDataReports.asp
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Amanda,
*hugs* what a shock to hear that!
One thing I'm interested in is your "annual assessment"?? I don't think I've ever had a formal assessment. They just ask me for Tissue Typing bloods every month or so. I sign a red cross form and they take the blood?! So I'm a bit confused. I'm told I'm on the list (and it's in my folder at the hosp, so I am pretty sure I am :) ) so I wonder what this assessment thing is. Maybe down here the local co-ordinators do it based on test results and only talk to you if you need it? I must ask my Doc when I see him in Dec.
How do you know the average wait in SA is only 2 years? Damnit I think I'll move there myself - I'm closer than you! *grin*
I was told here in Victoria it's also 7 years average, but I also understood the list was worked basically best match and then most appropriate paitent.. I always presumed that was age related or perhaps also taken into consideration how long you have been on the list. eg: a 50 year old and 40 year old might be differentiated by time waiting, but perhaps a 30 year old vs an 82 year old, the 30 year old may get it ahead of the 82 year old even if they have been waiting less time.. I am honestly not sure though. The people I have asked have always been somewhat vauge on the process... I think they didn't really want to give out details in case paitents somehow felt it was unfair or biased somehow or something.
I'm A+ and the only match I know of is my sister, but I believe she is scared to offer (and can understand that of coruse).. I would be scared to accept given that if anything ever happened to the donor on one kidney and they ended up in trouble I'd feel pretty bad if the donated kidney could have stopped it. I know that is a huge case of "what if?" which may never happen, but it could and I know I'd feel awful.
Conversely I have a brother who is AB+ is is dead keen to donate, but I think the different blood groups will shut that down despite the recent successful cross-blood group transplant done here. I asked my doc about it and he said it was very unusual and difficult circumstances, and given I am early on in the waiting list it wasn't really an option for me.
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thanks for the support.
Well the annual assessment is also done by your doctor in some hospital. It generally means doing all kind of test like heart, liver ultrasounds, and all the those important blood test.
In regards to the waiting list. It first goes to the best match, then from those people, it goes to who have been waiting the longest. It use to go by age, but thats not the case anymore. :-\
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Thanks. I am now concerned.. I must ask my doc why I haven't had any liver ultrasounds and so on..
guess I won't be getting a call anytime soon, not that I actually expected it.
I've been on the list approx 18 months-2 years, so I am guessing I have a fair few more to go.
Hoping you are a lucky recpiient soon, as for everyone here!
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Richard i wouldn't be to concerned, your doctor probably didn't see a need for one because you are doing so well.
You never know when you will get the call. Even if the average is 7, you can wait less then late. i know someone who waited 1 week :) there is hope for all of us :)
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I'm A+.....Chaaa Ching - Ring Phone Ring!!! :2thumbsup;
I go for my yearly evaluation on Monday. They need an EKG, Chest X-Ray, and an AIDS blood test. Oh, yes and I need to take the stool sample kit home (oh joy).
I was so thankful that my first wait was only 9 months. That kidney lasted 17 years. I can't complain about my second time around wait.
My brother was here last weekend and he said he'd rather get the flu than have the flu shot because of the needle.... I guess he won't be offering me a kidney.
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I just got a call from my transplant center that it is time for another evaluation. CRAP!
I don't understand what the heck I need to go 2 hrs away when the tests could be done
near my home? I don't understand since the only change in my health is that I am on dialysis
now since my last evaluation why they don't just use the blood workup from the dialysis center?
I'm pretty PO'd about it. CHA CHING for the hospital, doctors and radiologists.
HATE THE HEART STRESS TEST!!!!!!!!!!!!!!!
Why bother when we are years away from a transplant and not so sure that I'm going to go
that route anyway.
SCYankee
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Why bother when we are years away from a transplant and not so sure that I'm going to go
that route anyway.
SCYankee
I'm assuming your on the transplant list, since they wouldnt do an evaluation if you weren't. So why would you be on the list if your not sure you want a transplant? The whole reason behind it is because you never know when you will be called. It could be the next day or 2 months, or 2 years... there is no definate time line. Hnce everything needs to remain up to date and it is very necessary.
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Hi RichardMEL,
I am also in Melbourne. What hospital are you with? I have to go to the Transplant clinic every 6 months. Which is different from my private doctor. They check that I am still "Active" and make sure all required tests are upto date. Your Red Cross bloods should be taken every second month. I have mine in the 3rd week of the month at the Royal Melbourne. In Victoria the 'waiting time' starts from the day of your first dialysis treatment. I was put on the Transplant list early, almost a year before I started dialysis. Only to be told that it didn't count and the day of my first treatment was the start of my waiting time. They wouldn't even back date it to the day of my catheter surgery it had to be the first PD dwell. So I have been on dialysis now for 19 months and that is my official waiting time. Yes, I was more than a little bummed. To get a transplant it all comes down to waiting time, age does help (so I am told by my doctor, I am 38) but its like Amanda was told, I was also asked "Do you have a live Donor?". The answer was No. :P
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Please forgive me for asking a few questions about the UNOS waiting list and such... I was put on the list when I started dialysis, but two of my sons were already interested in donating to me, so I never did figure out how things really work on the list-- especially once they said that my average wait would be 10+ years.
I'm back on "the list" now after I lost my transplant from my son-- but when I had the nephrectomy six weeks ago, my doc said in passing that I would now be on the "special list" for people with FSGS and sensitivity issues. I hope being on the special list doesn't mean they put your name in the trash can, hehehe. But does anyone else know anything about special lists and how they fit into the revised algorhythms that UNOS supposedly has now. Also, is there any kind of system where you can periodically check your place on the list-- besides calling your doctor repeatedly, emailing or chasing him down at Hawaii conferences?
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Please forgive me for asking a few questions about the UNOS waiting list and such... I was put on the list when I started dialysis, but two of my sons were already interested in donating to me, so I never did figure out how things really work on the list-- especially once they said that my average wait would be 10+ years.
I'm back on "the list" now after I lost my transplant from my son-- but when I had the nephrectomy six weeks ago, my doc said in passing that I would now be on the "special list" for people with FSGS and sensitivity issues. I hope being on the special list doesn't mean they put your name in the trash can, hehehe. But does anyone else know anything about special lists and how they fit into the revised algorhythms that UNOS supposedly has now. Also, is there any kind of system where you can periodically check your place on the list-- besides calling your doctor repeatedly, emailing or chasing him down at Hawaii conferences?
I'm not sure what he meant by the "special list", but you said you just had a surgery done, as far as I know, there is only 1 list, and if your sick, or have an infection or surgery, then they usually put you as "in-active" on the list until your better and can have a transplant if one were to become available. Therefore, once you have healed from your surgery you would call your transplant coordinator and let them know your healed and they would change you status as "active" again, and you didn't lose any time on the list b/c you werent removed from it. I would call your coordinator and tell them what your dr said and verify what it means.
You cannot check your place on the list, nobody can, not even your dr or coordinator. The list is constantly changing every second, and we are not given a specific number on a list. Basically someone dies, there organ becomes available, they then run there blood work numbers through the computer and the computer finds the best possible match. (Example, you put a suspects finger print in the computer. and it goes through thousands of other fingerprints in the system untill a match is found.) If a perfect match is found, that person gets called and offered the organ first, no matter their wait time on the list. If it's not a perfect match, the computer finds the closest possible match and then they look at other factors such as wait time on the list and such.
Hope that helps.
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thanks, angela for clarifying a few points for me. if i have to check with a coordinator to find out what my transplant team meant by the "special list" i'll probably be on my third or fourth transplant by then, hehehe... i don't work through my local nephrologist...i work directly with the staff at the transplant hospital i use...and they have been swamped for the past 18 months and getting a quick answer to a question takes a great deal of time and effort.
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thanks, angela for clarifying a few points for me. if i have to check with a coordinator to find out what my transplant team meant by the "special list" i'll probably be on my third or fourth transplant by then, hehehe... i don't work through my local nephrologist...i work directly with the staff at the transplant hospital i use...and they have been swamped for the past 18 months and getting a quick answer to a question takes a great deal of time and effort.
I usually used to leave a voicemail for them, and at their lesiure they would respond. If it was timely enough for me, I emailed them, seems you get a quicker responce through email since they are always checking their email! LOL
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My lead transplant doctor is kind of a transplant "Rock Star" and surprisingly, he has responded to my emails...and really quickly, too. But he's taking over as president of one of the major transplant organizations and i don't think he'll be able to drop everything and answer my questions...hehehe... though maybe he should, because if he ever gets me straightened out, he's gonna get a nobel prize, for sure! hehehe.