I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: kristina on May 23, 2009, 07:31:40 AM
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I have noticed that patients wait different lengths of time
before being offered a kidney transplant.
Some patients seem to get on the list and receive it
rather quickly,
whilst others are still waiting after so many years.
Why is this?
Is it because of blood-type, or regional issues,
is it dependent on the efficiency of their renal team,
is it back-hander or influence
or is there some discrimination taking place?
I haven't arrived at this point yet, but
I would really appreciate people's views
on this particular matter.
Thank you.
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I was one of the lucky ones...if anyone having kidney disease can be considered lucky. I was on the "list" just 15 months when I received my transplant.
I asked the team that was prepping me for surgery how that happened so fast and they told me simply "blood type". Mine is AB...so I am the universal recipient. I could have a donor that was A, B, AB, or O.
From what I have read and learned there are many factors that play in to who gets organs. I don't claim to understand it...I just consider myself lucky.
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Blood type O has the longest wait because type O kidneys can go to anyone. But type O can only receive from another type O. Sigh.
We are waiting for Type O. :banghead;
We were told that the average wait is 7 years for us. then there are age protocols, too. We heard from a UNOS representative that they are changing the age protocols. I'm not really clear on how those will be changing, but I think that people over 60 will have a harder time getting kidneys as the life span of the doner kidney might be shorter than if it went to a younger recipient. If that is the case, we are probably out of luck.
Then there is overall need. My husband is really, really healthy (except for his kidneys). I am trying to figure if that makes him a better recipient or lower on the list because his need is lower. It is all very confusing to me.
:banghead; :banghead; :banghead;
Aleta
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I am in AZ and I was told the wait time for an O kidney transplant is 5 years. I asked similar questions from my transplant team and all they keep telling me is I'll get the kidney that was meant for me and to stay positive and healthy until that time comes. Easy for them to say.......
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I had always suspected that age would be a criteria but everyone keeps assuring me it is not and saying I should get on the list. I suspect that it is controlled partially by all of the suggestions you made.
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The wait also differs in different states. In chicago, the wait for a type o kidney is 6 years. It is much shorter in other states with smaller populations. Also, as the baby bloomers have aged, and diseases like diabetes have increased, the demand for kidneys has skyrocketed. I waited only 2 years for my first kidney in 1994.
You can still get on the list if you are older, but the criteria is going to give a bit of preference to younger recipients.
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Different centers use different criteria to determine your wait time on the list. My center counts the length of time you have been on dialysis, as well as how long you have actually been medically cleared. Blood type does have a lot to do with it. There are also 6 protein antibodies they are trying to match, above and beyond blood type. The more out of the six that match, the better the kidney will likely work. 6 out of 6 matches are rare, so those with a 6/6 match to a cadaver kidney can be given the kidney regardless of how long they have been waiting. Those rare matches are often the reason for the stories you hear about people being given a cadaver kidney with very little wait time. PRA also matters. That's Panel Reactive Antibodies. My doc explained it by saying they take approximately 100 different blood samples and see how your blood reacts to them. If you react to 3 of them, then your PRA is 3% (which is where mine is.) That means I have bad reactions, and little chance of matching with a kidney from approximately 3% of the population. 3% is a great number - I've got good odds. If you have a high PRA, though, then you have bad reactions to a high percentage of the population, and will have a low chance of matching a kidney. The IVG plasmapherisis can treat a high PRA, but my understanding is that they usually only do that with live donors when they can schedule the treatments prior to the surgery.
Your center will explain their own criteria for getting on the list, and how they calculate wait time during your orientation. Different state have different average wait times as well, depending on how the rate of donations goes. That varies according to everything from predominate religious beliefs to what the state helmet and seat belt laws are.
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My husband had a PRA of 0%, so that is REALLY good.
We had a 6/6 match live donor who was turned down because she had had an issue with the hospital 20 years ago. Sigh.
Aleta
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jbeany explained it very well. Also gender and body size can play a role. My donor was child, so I received the kidneys (I got both). A normal sized man would not have benefited from the small kidneys.
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Many centers are now doing IVIG therapy and Rituxin to help lower the PRA without having a lving donor. I just had round one. With a PRA of 100 and O+ blood, we are trying anything to increase the odds. So many different factors and every center seems to have a different plan. Keep asking questions. :thumbup;
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Kristina I am a little concerned that you include the suggestion of shennanigans, foul play etc in the process.
"the list" and candidacy(is that spelt right??) for a cadaveric donation is based on blood group match, then HLA match (the 6 antigens in the blood) and then a matching of donor blood and recipient to make sure they match OK too, assuming all those are OK it is then ranked by time on the list(in Australia that equals time on dialysis, but I think the US/UK etc is different).
So it's all about the matching and this explains why some people can wait 6 months and others six years. I've been waiting 3 years, and the "average" here is around 5.. so sitll a way to go ON AVERAGE... or my phone could go off in 38.2 seconds.
The basic issue is a lack of donor organs compared to the demand, which is ever increasing, sadly.
Dan you SHOULD go on the list!!
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Thanks to everyone for their frank and honest answer to my question.
What stands out now is there are more tests than just merely blood group.
This was most interesting to find out.
My blood group is O Rh (D) +
what this means I don't know but I glean
that when I go on the list that I might have to wait a few years.
You answers have certainly been illuminating
and I thank you very much indeed.
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Blood type O has the longest wait because type O kidneys can go to anyone. But type O can only receive from another type O. Sigh.
We are waiting for Type O. :banghead;
Allocation of deceased donor kidneys is based on blood type. The rule is that O's go to O's - B's go to B's- etc - making it fair for those who wait. When it comes to living donors there is no similar restriction.
Blood type O waits the longest because it's the most common blood type, the majority of patients waiting are O.
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My blood group is O Rh (D) +
what this means I don't know but I glean
that when I go on the list that I might have to wait a few years.
I was told that for matching kidneys, the Rh factor doesn't matter.
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Thanks again for the information.
Very much appreciated.
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How long a patient waits depends on many factors. These can include:
* blood type (some are rarer than others)
* tissue type
* height and weight of transplant candidate
* size of donated organ
* medical urgency
* time on the waiting list
* the distance between the donor's hospital and the potential donor organ
* how many donors there are in the local area over a period of time and
* the transplant center's criteria for accepting organ offers
This came from:
http://optn.transplant.hrsa.gov/about/transplantation/transplantProcess.asp (http://optn.transplant.hrsa.gov/about/transplantation/transplantProcess.asp)
Okarol,
It would seem that the higher percentage of O type individuals would be equally distributed in the donor and recipient pools. As Wenchie said, as AB, her wait was short because she could receive from any blood type as the universal recipient. Type O is the universal donor, so Type O kidneys can go to any blood type, but can only receive from Type O. thus the longer wsits for type O recipients. Sigh.
Aleta
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I may be off in left field here, but I think it has alot to do with the size of hospital too. I was on the list at Baylor in Ft. Worth and Dallas for over a year... had 5 donors who needed to be tested and it took FOR EVER just to get them tested. Not only that (I know some who have had great results at Baylor), but they were rude as all get out!!!! I was a number to them. The insurance lady actually YELLED at me "do you think you are the only patient file I have on my desk". It was only the second time I had even talked to that woman and she told me to call her directly if I had a question.... I did.... she yelled at me.... I set her strait!
After I lost my job (which was a blessing in disguise) then Medicare became primary so I could go anywhere I wanted. My work insurance would only let me go through Baylor and a hospital in Houston.
I had been looking into Lubbock Covenant which is a smaller hospital but man were they caring!!!! My actual donor had almost finished her testing so Lubbock requested her test results. It had taken Baylor well over 4 months to do her testing...... I contacted Lubbock on April 28th,2008 they requested the records (which took the longest), finished the testing and we had transplant on June 5th!!!
Now, I know this was a live donor, but since then I have referred people to Lubbock (who were dealing with bigger hospitals taking too long) and I KNOW of 3 so far that have received cadaveric kidneys since June of last year. Since it is a smaller hospital, their waiting list is sooooo much smaller... also, they have a 'lower standard' of who gets kidneys because they think everyone has a chance!!!! They just want everyone to have a chance at a better life. Infact, my dr told me about one woman who was sooooooooo sick.... they got a kidney that couldn't be matched to anyone else.... so they gave it to her..... she made a full recovery and he said he didn't even recognize her at her 3 month visit.... she was a totally different woman!
I cannot recomend Lubbock Covenant in Texas enough!!!!
That is just my left field answer of the day :)
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Thanks donnia for sharing the information about Lubbock Covenant in Texas!
You are right, it is not the size or reputation of a Hospital that matters, but
the quality of medical care we receive when we need it.
Your story reminds me of the Hospital I was brought to by ambulance when
I suffered my first kidney failure as a teenager.
I was a very small Hospital and I was under the care of a very young doctor,
I believe, I was her first case. Whilst I was in a coma she made sure to try
everything to get me out of the coma without using Dialysis and she succeeded.
The ambulance only brought me there because it was the nearest hospital.
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"Blood type O waits the longest because it's the most common blood type, the majority of patients waiting are O."
Okey, I still don't get this rational. It seems to me that if the majority of people waiting are O positive because of the statistical distribution of that blood group in the general population, then it would stand to reason that statistically deceased donor kidneys should be the same. I was just asking my husband about this the other day and he is a math and economics teacher and even he could not come up with a rational explanation. We concluded that deceased O positive organs ARE going to people who are NOT O positive. This information is very relevant to me since I am O positive. Is there anyone who can make sense of this?
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I found this:
In 1999, Eurotransplant reported that the proportion of patients of blood type O was 39% among patients newly added to the waiting list and 48% among all patients on the waiting list while 44% of all donors were of this type. In the same year, UNOS reports for the USA that 53% of all patients on the waiting list were of blood type O while 40% of all donors had this blood type.
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willowtreewrenn's list that she posted here a couple of threads back is what we were told...
How long a patient waits depends on many factors. These can include:
* blood type (some are rarer than others)
* tissue type
* height and weight of transplant candidate
* size of donated organ
* medical urgency
* time on the waiting list
* the distance between the donor's hospital and the potential donor organ
* how many donors there are in the local area over a period of time and
* the transplant center's criteria for accepting organ offers
And, we were also told that O's (the "universal" donor) went to other blood types -- but an O recipient could only receive an O donor; hence, this is the reason we were given for the longest wait time for those O patients.
Unfortunately, my Marvin is a O+. He also has a PRA of 98%. These two combined probably make his chances "slim to none," but he did get a "standby call" on April 1 of this year, so something is still possible.
Marvin has waited on "the list" twice -- once from March of 1995 until July of 2000 (no kidney from the list -- got one from a living donor). He went back on the list in October of 2003 (when his transplanted kidney contracted the same disease that destroyed his original kidneys), and he has been waiting ever since. All total, his name has been on the list for a little over 11 years (but, the second time around, they erased his previous waiting time and started all over at 0). No kidney from the list -- yet. Nine "standby calls" but none materialized for a kidney for Marvin. I guess the only "good" thing that Marvin has going for him on this damned list is that his wait time is long (if you can categorize that as "good" -- but, hey, we've got to find something positive about it). Also on the positive side, there is a chance (albeit a slim one) and there is a list...and Marvin is on it.
I will have to say that waiting this second time has been so different from our first wait. The first time, we jumped every time the phone rang -- we just knew it was going to be "the call." Every "standby call" he got the first time around, we just KNEW it was the one. This second time around, we don't get our hopes up as much; we're taking it a lot more in stride now -- if it happens, it happens. There's too much "living" to do to let the waiting consume us.
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At my transplant evaluation last week, we were told that when a kidney becomes available, the entire national list is checked for a perfect match. If there is no perfect match, it then is given to someone within it's region that it matches best, based on several criteria that has been listed in willowtreewren's post.
We were told that in the future, young people with diabetes may be given priority on kidneys that are a good match. Didn't get any more details than that.
There are also cadaver kidneys from older people (I believe it's 60 and older) that are offered to recipients that are 50 and older. They disclose this info, but the kidneys should be healthy; it's just that they typically would not want to transplant a 70-year old kidney into a 25-year old recipient.
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There are also cadaver kidneys from older people (I believe it's 60 and older) that are offered to recipients that are 50 and older. They disclose this info, but the kidneys should be healthy; it's just that they typically would not want to transplant a 70-year old kidney into a 25-year old recipient.
My center does that - can't think of what they call it - something like extended criteria donor kidneys. My center only recommends it to people who are doing really poorly on dialysis. The kidneys don't tend to last as long, but 3 years of good function with a kidney would be better than 3 years of bad dialysis.
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There are also cadaver kidneys from older people (I believe it's 60 and older) that are offered to recipients that are 50 and older. They disclose this info, but the kidneys should be healthy; it's just that they typically would not want to transplant a 70-year old kidney into a 25-year old recipient.
My center does that - can't think of what they call it - something like extended criteria donor kidneys. My center only recommends it to people who are doing really poorly on dialysis. The kidneys don't tend to last as long, but 3 years of good function with a kidney would be better than 3 years of bad dialysis.
At Marvin's transplant center (Duke Hospital in Durham, NC), it's called the "extended donor pool." These kidneys not only come from older donors, but also donors that may have had "minor" health problems (slightly elevated blood pressure history, history of minor heart disease, stroke victims, etc.). This second time around, they asked Marvin if he also wanted to be included in the "extended donor pool," and, after careful thought and lots of research, he agreed. The neph said with Marvin's age now (53), his high PRA, his lengthy time on dialysis, etc. that he might want to consider it. Marvin's reasoning is some kidney -- even a slightly "imperfect" one is better than none at all.
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This is a good explanation of how organ allocation takes place
The Organ Transplant Waiting List http://www.organtransplants.org/understanding/unos/
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As always Okarol,
You have come up with facts to answer our important questions. Thanks.
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If you want to get into the technical material, the current policies in effect now are given here (link opens a pdf), which I've also attached below:
http://optn.transplant.hrsa.gov/PoliciesandBylaws2/policies/pdfs/policy_7.pdf (http://optn.transplant.hrsa.gov/PoliciesandBylaws2/policies/pdfs/policy_7.pdf)
The new policies being considered are given here:
http://optn.transplant.hrsa.gov/kars.asp (http://optn.transplant.hrsa.gov/kars.asp) or http://www.unos.org/kars.asp (http://www.unos.org/kars.asp)
and here's the actual text:
Kidney Allocation Policy Development
Mission
The National Organ Transplant Act (NOTA) requires that the Organ Procurement and Transplantation Network (OPTN) develop medical criteria for equitable organ allocation. The allocation policy has always balanced considerations of justice and utility in organ allocation. Over time, the kidney allocation formula has become unbalanced because the utility component (HLA matching) has diminished in emphasis.
The OPTN/UNOS Kidney Transplantation Committee is charged with reviewing the current kidney allocation system and making recommendations for improvement of the system.
Background
The current kidney allocation system has been in place for over 20 years. During this time, some changes have been made, but the system cannot keep up with current trends in medicine. As waiting times for kidney transplant increase throughout the United States, the need for review of the current system and discussion of possible revisions is great.
Under consideration
The OPTN/UNOS Kidney Transplantation Committee considered many concepts and approaches to allocation over four years. Throughout its review, the committee has been including concepts that meet the requirements of the OPTN Final Rule and the UNOS Statement of Principles and Objectives of Equitable Organ Allocation. The committee is now considering the following three concepts which would work together to determine a candidate Kidney Allocation Score (KAS):
Life Years from Transplant (LYFT): Determines the estimated survival that a recipient of a specific donor kidney may expect to receive versus remaining on dialysis. LYFT is primarily a measure of utility.
Dialysis Time (DT): Time spent on dialysis allows candidates to gain priority over the period they receive this treatment, adding the essential element of justice into the allocation system.
Donor Profile Index (DPI): Provides a continuous measure of organ quality based on clinical information. DPI increases individual autonomy by providing a better metric for deciding which organs are appropriate for which candidates.
LYFT, DPI, and DT are incorporated so that kidneys are matched to candidates based on the expected survival of both the kidney and the recipient.
Currently, the concepts are under review by the U.S. Department of Health and Human Services (HHS) Office of Civil Rights (OCR). The OCR is assessing whether the concepts are consistent with applicable federal laws, including the Age Discrimination Act. If OCR finds the concepts to be consistent, we will circulate a formal proposal for public comment.
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I have a few twists to the question.
1st. I don’t believe that how long you have been on dialysis has much to do with it. I received my call for transplant and was on the operating room table and had never been on dialysis.
2nd. You can decrease you wait time if you have Type I diabetes and opt for a kidney and pancreas transplant. When I was on the list for a kidney only, they told me my average wait was 2 years. When I qualified for a KP transplant (kidney – pancreas), they told me my average wait was 6 months.
3rd. I was told that Salt Lake City, UT had the highest number of organ donors listed per capita. They said many have even moved to UT and got on the list here because the average wait was only 2 years. I know that UNOS has the big list, but I wonder why geographic location has anything to do with it. Have you ever been told you can list with multiple centers? The UNOS pamphlet even says the same thing.
By the way, my kidney and pancreas came from a 22 Male in California. I was on the KP list for only 6 months and 13 days.
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Well, if they are going to change the list criteria, I might as well throw in the towel and do everything in my power to make my kidneys fail now. Currently, I am doing everything to make my kidneys last as long as possible which means I'm going to be too old soon and not on dialysis and thus I won't be qualified. I find this discouraging. I try very hard to maintain my remaining kidney function, and it ain't easy. I guess I'll just start drinking, or become a drug addict, and start eating McDonald's hamburgers everyday. Then my kidneys will finally fail and I guess I'll get moved up that list!
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When you need a kidney and a pancreas your status is different than just waiting for a kidney, because you cannot survive without a pancreas. The pancreas is a vital organ, performing functions necessary in the digestion process, so the recipient's native pancreas is left in place, and the donated pancreas is attached in a different location. I don't think you can compare the two wait time scenarios.
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Well, if they are going to change the list criteria, I might as well throw in the towel and do everything in my power to make my kidneys fail now. Currently, I am doing everything to make my kidneys last as long as possible which means I'm going to be too old soon and not on dialysis and thus I won't be qualified. I find this discouraging. I try very hard to maintain my remaining kidney function, and it ain't easy. I guess I'll just start drinking, or become a drug addict, and start eating McDonald's hamburgers everyday. Then my kidneys will finally fail and I guess I'll get moved up that list!
Dear Sunny,
I sympathize with your concern (I am a few years older than yourself)
and I have no idea what to do for best either.
It seems for people on this age-borderline
there are several issues
which give us an uneasiness
and we don't know the answers.
Like yourself I "hang on" to my kidneys,
keeping to a kidney-friendly diet with a
controlled liquid-intake, weigh myself every day,
check my BP every day,
believing that to be the best for myself.
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Sunny ... shame on you... you're young. What if you were my age? You'd surely have given up...(sometimes I feel like it but I'm just too cute... and too much fun to be around.... )
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Based on my reading, both the LFTY and DPI metrics will help to get kidneys to "older" folks. I infer that under the new policy a kidney from an older donor is going to be more appropriate for an older transplant candidate than for a younger candidate. On older kidney is not going to offer a younger candidate as much potential, so presumably the LFTY score goes down for a young candidate/older donor pair. In another way, this may not be the news any older candidate wants to hear - for example, kidneys from a 20 year old male who dies in an accident are probably not going to go to a 60 year old based on antigen matching. I actually don't see any mention of antigen matching or PRA in the new policy. Is that because it's not included at all, or is the Kidney Allocation Score (KAS) just a part of a new decision-making process? Another point is that the policy also states that the DPI, which provides a "continuous measure of organ quality" also "increases individual autonomy by providing a better metric for deciding which organs are appropriate for which candidates." This would seem to build some flexibility into the system, but I suspect that in practice it would still play out so that that younger candidates would get the highest quality kidneys.
As for the time on dialysis (DT) criterion - this is clearly saying that those who are most in need get more points. I can support that. The LFTY criterion would work against those on dialysis (or not) whose overall health is such that they are at risk for not faring well after transplant (for example, someone with heart disease as well as kidney disease).
Sunny, whatever the criteria, I think the healthier you can keep your body overall, the better you will fare in the long run. You want that transplant team to think "she is an excellent candidate for transplant" when you walk through their doors.
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When I went to the orientation to get on the transplant list at UCSF, most of the information was old news because I had received two previous living donor transplants from family members.
We were in a small classroom and at the end of the presentation the speaker goes over the average wait for blood types.
I'm O Negative.
When she reached the O's, she said, "...you have an average five to eight year wait."
My jaw dropped and I blurted out the F-word.
Its been five years, two months and a handful of days and not one call.
It was suggested by a reader of my blog that I try applying to other hospitals nearby (Los Angeles and Portland)
I have called both hospitals numerous times and not one call back.
The transplant list is confusing, secretive, and the bane of my existence.
May all the members of IHD find their "mythical" kidney one day.
Because I've given up hope of it every happenning.
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Oh, no, Stacy, don't give up hope.
Marvin's name has been on the "list" for so long and his PRA is so high (98%). But, we still have hope -- hope for a miracle, hope for a long shot, hope to beat the odds that are so stacked against him -- but hope just the same.
"He who has hope has everything." (Arabian proverb)
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We have to keep living with hope. Three years ago, I was told the wait time for me (O+ PRA100) was about 30 years or when hell freezes over. Then I met JillD and Vandie. They gave me hope. Every year new things are being tried and new procedures created. Two years ago, IVIG treatments weren't available at my center, now they are. We just have to keep pushing for new procedures to be available in more and more centers. Who knows what might be possible next year? :2thumbsup;
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Amen Paris.
Things are always changing and science is constantly moving forward. That's why I hold out hope and won't give up (my above post was tongue in cheek).
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Stacey,
When I was researching about getting Jenna multiple listed I called USF. The coordinator there told me the wait in the SF area was just as long as Los Angeles. He said other procurement areas had shorter waits. Nevertheless she was evaluated and accepted by California Pacific (looking back I don't know why we bothered, but it had been recommend twice by doctors down here in LA.) We never heard a word from them (no calls.) But when she multiple listed in La Jolla (and changed her primary wait time to their center) she got called twice as back up (she had 3 years and their wait time in 36 months on average.) If she hadn't had a living donor come forward I feel confident that she would have gotten a deceased donor kidney much sooner than here in LA. If we had to do it again I would go to San Diego again, and also list in Sacramento. Transferring your accrued wait time to the NEW center gives you good status at the new list you join, while you change your new status to your existing center. I hope that makes sense.
It's worth exploring.
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When I went to the orientation to get on the transplant list at UCSF, most of the information was old news because I had received two previous living donor transplants from family members.
We were in a small classroom and at the end of the presentation the speaker goes over the average wait for blood types.
I'm O Negative.
When she reached the O's, she said, "...you have an average five to eight year wait."
My jaw dropped and I blurted out the F-word.
Its been five years, two months and a handful of days and not one call.
It was suggested by a reader of my blog that I try applying to other hospitals nearby (Los Angeles and Portland)
I have called both hospitals numerous times and not one call back.
The transplant list is confusing, secretive, and the bane of my existence.
May all the members of IHD find their "mythical" kidney one day.
Because I've given up hope of it every happenning.
Dear Stacey,
I agree with petey, paris, okarol and Sunny. There is research going on all the time,
we only hear about the successes, but nevertheless, there are doctors
trying to find answers, I am sure.
Another point is that not too long ago I read
that more and more people in different countries
suffer from end-stage-renal failure.
The cost of more people having dialysis
might be another "incentive" to push science forward
to find a better solution.
Please don't give up hope.
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Stacey,
When I was researching about getting Jenna multiple listed I called USF. The coordinator there told me the wait in the SF area was just as long as Los Angeles. He said other procurement areas had shorter waits. Nevertheless she was evaluated and accepted by California Pacific (looking back I don't know why we bothered, but it had been recommend twice by doctors down here in LA.) We never heard a word from them (no calls.) But when she multiple listed in La Jolla (and changed her primary wait time to their center) she got called twice as back up (she had 3 years and their wait time in 36 months on average.) If she hadn't had a living donor come forward I feel confident that she would have gotten a deceased donor kidney much sooner than here in LA. If we had to do it again I would go to San Diego again, and also list in Sacramento. Transferring your accrued wait time to the NEW center gives you good status at the new list you join, while you change your new status to your existing center. I hope that makes sense.
It's worth exploring.
My husband changed where he was listed about a year into his wait (different center, same listing region). The new center was very curious why he changed. He told them that he felt like number not a person at the other center and that he was looking for more.
Stacey, I hope that you can find a center that treats you like a person, not a number. Also, please don't forget that the statistics for waiting times for the various centers are on the web. There's a thread about it here on IHD someplace.
If anyone here on IHD ever needs assistance with finding information out there on the web, please let me know. That's pretty much what I do for a living and I am happy to help if I can.