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Author Topic: Hopelessness with new transplant rules  (Read 14405 times)
fearless
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« on: January 01, 2015, 10:04:24 AM »

It's been a very long time since I visited this site.  Some new rules for how deceased kidneys are allocated are in place now (since the beginning of December)  I am feeling quite hopeless in the face of these new rules. 

I went from being near the top of the list for my blood type in my region to being where I have no hope at all for a kidney that will last me for many years.  Why?  Well, before I had my time on the list working in my favor, and whatever kidney became available that was suitable for me would be mine.  I've never been very overly eager about it all, because I feel like it's all fate anyway and if it were meant for me it would happen.  I never liked the fact that someone would die that I might continue to live.  But I always imagined that after all these years on dialysis and on the list, once I received a transplant I would somehow make it work, my life would be better and I would have it for many many years.

Now, it doesn't matter if a perfect kidney becomes available for me, it will always be given to someone younger or healthier than me.  I have no hope of receiving a kidney that's going to last many many years because the powers that be don't think that I myself will last many many years and it would be wasted on me.

I was 43 when I started on dialysis.  I had been sick for many years and probably should have started sooner but I had no insurance or doctor.  I never got on the list until I several years later.  Now I've been on the list almost 5 years and last summer my transplant doctor said "this should be your year".  But now, even though my time on the list has suddenly become 11+ years, I have that fact working against me too, since the longer you're on dialysis, the worse your chances of long term survival.  My heart is good, but not great (also a result of being on dialysis so long, and the kidney failure of course)  I never feel good anymore and I had placed so much faith and hope in getting a transplant.  Now I wonder.  If I get one it's more likely to crap out in a shorter time.  I'll be back on dialysis with all the negative effects of carrying a rejected kidney and feeling that much worse. 

Not really lovin' life right now.  feeling hopeless.  Feeling sorry for myself.   

I know there are young people who've never even had the chance to have any sort of normal life because of kidney failure.  They deserve a chance.  This is life and life entails death.  I don't begrudge anyone anything and I'm trying not to be depressed.  It just seems like after all these years I'm very very unlucky to be so close to getting the best kidney available for me to suddenly having no hope of doing so.  I can only now have a kidney that will last as long as some medical people somewhere think I "will need it"  based on how long they would expect me to otherwise live.  Which isn't so long for same reason I was near the top of the list.

Feeling depressed about the future and the present too.

Thanks for listening peeps.  So glad I could come here.
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Simon Dog
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« Reply #1 on: January 01, 2015, 12:38:53 PM »

I believe that only the top 20% of kidneys are reserved for persons with an EPTS (expected post transplant survival score) below (I think) 20.  I ran the math a while ago, and age 53 is enough to push one out of the <= 20 range.  You fall out of the range at an even younger age if you have a lot of time on dialysis, already had a transplant, or have diabetes.

BUT.... The way I read the rules all kidneys not in the top 20% are fair game - so you might very well get a kidney that is the top third of donor kidneys, but won't get one in the top fifth.

Quote
working against me too, since the longer you're on dialysis, the worse your chances of long term survival
Once you are out of the top 20%, I don't think other things that lower your EPTS score affect the allocation algorithm.
« Last Edit: January 01, 2015, 12:40:08 PM by Simon Dog » Logged
cassandra
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When all else fails run in circles, shout loudly

« Reply #2 on: January 01, 2015, 03:54:34 PM »

Simon Dogs explanation sounds not bad at all dear Fearless. No reason at all to be getting hopeless. Stay positive please.

Love, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
coravh
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« Reply #3 on: January 01, 2015, 04:19:31 PM »

I haven't gone through all the new allocation rules, but the bottom line is that it is still incredibly complex. Also, have you thought of an EDC kidney? That's Extended Donor Criteria. I had a friend who was in her mid 50s while on dialysis. She opted to consider an older kidney. The donor was 61 years old. That kidney would not have gone to a younger person and she got it quite quickly. She has now had it for about 7 or 8 years and her creatinine still runs at about 1.2 (and has for most of the time). It's a great little kidney.

So don't lose hope. Options are out there. Keep yourself in the best health and shape you can and that will help to improve your odds as well. Best of luck to you.
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Michael Murphy
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« Reply #4 on: January 01, 2015, 05:43:24 PM »

One of the people I used to work with was way down on the transplant list, over a christmas holiday he got a call.  They started calling people and most were not available or unreachable, so one Chirstmas Santa delivered him a new kidney.  Where there is life there is hope. 
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iolaire
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« Reply #5 on: January 01, 2015, 07:03:27 PM »

One of the people I used to work with was way down on the transplant list, over a christmas holiday he got a call.  They started calling people and most were not available or unreachable, so one Chirstmas Santa delivered him a new kidney.  Where there is life there is hope.
I second that, I didn't get it, but weeks before I started dialysis on Thanksgiving Eve I got my first call, because of the holiday they had to way down the list.  I didn't get that one but it was a nice start when a few weeks later dialysis started.  I received maybe four more calls in 2014, but the last call was in the summer. 

FYI: EDC is a thing of the past now: PDF: http://www.unos.org/docs/Kidney_Brochure.pdf
If you have been listed for some time, you may have heard of kidneys being classified as “standard” or “expanded criteria.” These classifications will no longer be used in the new system.
I think those expanded criteria kidneys might be more available to older folks now, increasing the chances of them getting a kidney.

One question though fearless, I thought your time on dialysis played in your favor under the new system, did that change not help you?
« Last Edit: January 01, 2015, 07:06:21 PM by iolaire » Logged

Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
fearless
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« Reply #6 on: January 01, 2015, 09:24:12 PM »

Gosh, thank you all so much for commenting.

my understanding is: the new rules give you a % based on how long you're expected to "need" a kidney.  So apparently someone, somewhere, is deciding how long any given patient is determined to live based on very clinical aspects of that patient's health, and the kidneys which become available are given a % - and you're not considered for a kidney better than one which will be appropriate for your expected survival (unless all those with a better % aren't chosen for some reason).  And your expected survival is based on a number of things: age, diabetes, time on dialysis, etc.

So, the 11+ years I've spent on dialysis without receiving a transplant will move me to the top of the list for my area of the country - no doubt.  The reason I've been feeling sorry for myself is that I was already near the top of the list under the old rules (having been on the list for almost 5 years anyway).  But now the top of the list will never be what it was for me.  I just happen to be one of the people who will likely do worse under this change than I would have before.  Just happened to be in the wrong kind of situation.  I'm an unusual case because people don't typically go 11 years without having at least one transplant (although I know there are others like me).  Before the changes the "top of the list" meant I became eligible for the best kidney available at that given moment.  I have zero antibodies (I know that's impossible, but basically I would be a good candidate in that respect) no diabetes, never had a transplant and was extremely healthy before kidney disease started taking me down many years ago.  I didn't get the medical care I should have and the nephrologist under whom I finally started dialysis seemed to think I understood everything and was making my own decisions.  I spent too much time anemic and dehydrated on PD, and later with different doctors experienced other setbacks that have worsened my health. 

I had opted out of the expanded criteria because I just wanted to "get my kidney", live a normal life for a long time (whatever that meant), and never go back on dialysis.  I figured I'd stay on dialysis until it wasn't good any more and then get a transplant.  No one told me back then:

1. the list was long and getting longer
2. after 7 years on dialysis the average survival rate, even if you get a transplant, is lower
3. chronic anemia and fluid imbalance can reduce your heart efficiency and make you a worse candidate for transplant and long term survival

So, whereas before my 11 years on dialysis meant I was getting through more of my life without a transplant, and therefore pushing my survival to be longer because once I got one I'd just "finish out" my life that way and accept death when the kidney failed - well, now there's not so much of a chance of that possibility.

My thinking probably sounds like it was kinda crazy.  There was so much I didn't know during my first 5 years of dialysis.  If I had gotten on the list right away I would have already received a transplant several years ago, I'd be healthier today (I know that's only one possibility of course)  But also, if today's rules were in place back then, I would have been eligible for a better kidney than I am now. 

Every step of the way I've been on the wrong side of the decision tree.  I was so close.  It was time to start keeping a bag packed.  It was time to let some hope creep in that I could live without dialysis, maybe even for a long time, before I had to say goodbye.  Then, with the flip of a calendar page, it's changed.  Even though I had continually opted out of the extended criteria, that's possibly the best I can hope for now.  11 years on dialysis and being a good patient and staying healthy to survive as long as I can on dialysis so that I dont' have to go back only now means: lowered chance of long term survival, so, lower chance of getting a very healthy kidney.

I do appreciate the kind words of encouragement.  I've had many setbacks over the years.  I've always found a new reason to hope.  Part of that has always been hearing from others who understand.  Just so so tired of it.  It's a hard time to have this latest hope taken away.  The clinic I'm at right now is not great but the only one I don't have to drive an hour to get to.  Last time I was there one guy had to get off to go to the bathroom and when he came out he had crap all down the back of his pants and tracked it all over the floor and sat in his chair that way.  People are moaning and groaning.  The guy next to me is really old and just about gives up the ghost every treatment.  I know I sound awful.  I've always been encouraging to every other patient - a model for how to maintain a good life.  Perfect labs.  Active when my hemoglobin isn't in the crapper.  But part of my optimism has always been that I've found some reason to rationalize that I really didn't belong to that crowd.  Now I'm starting to feel like I do, and I just happen to be younger.  It seems like my life has been on hold since the age of 43.  Now, suddenly the age of 55 feels old.  But a couple months ago, when my hemoglobin got a little high, I went hiking in the state park near my home - every day - even dialysis days.  I always try to take advantage of those times.  But it would take an act of Congress to convince my doctor to let me keep my hemoglobin higher.  Perhaps that will be my next battle.  If I have to stay on dialysis the only thing that will enable me to face that kind of future is if I am allowed to try to maintain the activities of a more healthy person in the present. 

Well, I'm rambling a bit.  I thank you all, again, for each of your comments.  One problem with the depression from these changes in expectation is that there's really not one other person I can speak to who understands.  The other patients who are my age and on the transplant list have only been on dialysis a few years.  And they will not have their status changed all that much.  If anything they'll get a kidney sooner, although like me they won't be eligible for the "top" kidneys.  Still not really comfortable talking about transplant this way.  It's strange that after all these years of being rather stoic about it all, and not wanting to really come to terms with the reality of it: I'm waiting, with thousands of others, for thousands of people to die.  For pity's sake, there's got to be a better way. 

Seriously, I'm thinking about taking myself off the list and delving into my faith.  Let the holy spirit heal me.  Let someone who's highest hope can be fulfilled have that kidney.  I don't know.  I'm tired and can't make sense of my thoughts and emotions right now.  I'm just grateful to you all.  Thanks again.

I prbably should re-read this and edit it because it might not make much sense.  But oh well - I know you all will forgive me for that. :)
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iolaire
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« Reply #7 on: January 01, 2015, 09:40:36 PM »

The clinic I'm at right now is not great but the only one I don't have to drive an hour to get to.
I feel lucky that my shift and center seems to have fairly normal people. There is only one guy that seems high maintenance that gets off just after I arrive.  I feel very luck that I'm not the gentleman next to him that probably is at prime nap time when the high maintenance guy starts speaking up.  I feel like my 3:30 shift seems to be filled full of people who worked in the earlier part of the day or are more active, I see more of the elderly getting taken off just as I arrive or on the morning shifts when I have to switch things around.  I appreciate how you don't want to commute to another center, since I take public transportation it takes an hour to get to the center, versus the 15 minutes for my wife to drive home.   FYI I turned 40 this year, but I've just started my second year of dialysis - I had thought I would have received a kidney by now.

I wonder if you might have a better experience at some other shift time within the same center?
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
Michael Murphy
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« Reply #8 on: January 01, 2015, 10:07:33 PM »

Be careful in reading mortality rates for dialysis, one the newer filters are better in removing toxins from the blood and capture and eliminate more than the older filters. More importantly many of the people who are not complient are the ones dying keep putting 5 or 6 kilos and sooner or later you will have a heart attack eithe from too much fluid or the stress of removing that much fluid.  Keep eating the forbidden fruits that contain phosphorous or potassium and again a heart attack is in your future. Follow the plan watch what you eat and drink and at your age you will live along time.  Don't forget the technology is improving and new research in transplantation, artificial kidneys, better. Filters and cloned kidneys is currently under way.  Follow your diet and you will be here when one of the many projects pays off.
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cassandra
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« Reply #9 on: January 02, 2015, 05:49:18 AM »

More importantly many of the people who are not compliant are the ones dying keep putting 5 or 6 kilos and sooner or later you will have a heart attack either from too much fluid or the stress of removing that much fluid.  Keep eating the forbidden fruits that contain phosphorous or potassium and again a heart attack is in your future. Follow the plan watch what you eat and drink and at your age you will live along time.  Don't forget the technology is improving and new research in transplantation, artificial kidneys, better. Filters and cloned kidneys is currently under way.  Follow your diet and you will be here when one of the many projects pays off.

Really? It's mainly the patient fault they die on D? Really? I definitely agree with the better filters which are used by every centre, not. The better info provided by staff in D centres, not.

I believe people dependend on D or any other form of 'artificial organ' have to be as informed, proactive, and incredibly lucky as poss to outlive statistics.
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
Simon Dog
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« Reply #10 on: January 02, 2015, 06:09:53 AM »

Quote
One question though fearless, I thought your time on dialysis played in your favor under the new system, did that change not help you?
It sounds like it did, but he is now near the top of the list for a lower quality kidney.

The allocation process is a zero sum game - you cannot improve things for some without making them worse for others.
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amanda100wilson
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« Reply #11 on: January 02, 2015, 08:10:30 AM »

Why have you waited so long for a transplant?  How long have you been listed for a transplant out of the 11 years on dialysis
.  Is there some factor that is precluding you from getting a transplant quickly
.  Eleven years with zero antibodies seems an awfully long time to wait.  I hve been waiting for eleven years but my antibody level is through the roof.  Simon Dog is right.  It is only the top 20% of kidneys that  are earmarked for those with a score of twenty percent or less. The rest are supposed to be generally available for the rest of those waiting.  They are supposed to be also offered on a national basis not a regional basis so in reality, it may not make much difference to you because there will actually be a bigger donor pool available to you now.  Have you tried finding a live donor.

My fear is that the system will not be used as intended with the transplant hospitals misusing the new system.
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ESRD 22 years
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  -PD for 8 years
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Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

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kristina
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« Reply #12 on: January 02, 2015, 09:59:15 AM »


My fear is that the system will not be used as intended with the transplant hospitals misusing the new system.

Hello Amanda, please tell us how the new system could possibly be misused ?
Thanks from Kristina.
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iolaire
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« Reply #13 on: January 02, 2015, 10:11:36 AM »

My fear is that the system will not be used as intended with the transplant hospitals misusing the new system.
My transplant doctor was complaining how they had no control of the allocation and now its based on rules developed by the government.  Because of that I get the feeling that they can not misuse the system.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
Michael Murphy
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« Reply #14 on: January 02, 2015, 10:22:19 AM »

One of the most depressing thing I ever saw was the Emory iOS app that predicted mortality for dialysis patients.  When I show my nephrologist he told me that while the numbers were right the way to beat the odd were to be as complient as possible. If you have 4 or 5 kilos removed every treatment the stress would eventually damage your heart.  Too much phosphorous or potassium can take you out too.  The more complient you are the better are your chances to live longer.  Are people who aren't complient responsible for what happens. I blame the disease but if I thought my chances were what the Emory app gives me I certainly would be depressed.  Knowing I can have some control over my odds makes it easier for me.
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jeannea
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« Reply #15 on: January 02, 2015, 10:51:29 AM »

Fearless, you're making sense. However, I don't think you need to give up hope. The new rules are complicated and I don't think they rule you out. I think you should ask for an appt with a doctor at your transplant center. Explain your thoughts and ask them where you really stand. I suspect you're still in line for a transplant soon. In one of the changes, I think your waiting time is now extended to when you started dialysis. There are so many changes that you should get info from your center. You can still get your kidney.
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MooseMom
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« Reply #16 on: January 02, 2015, 11:05:01 AM »

I found this podcast from the Renal Support Network's Kidney Talk to be very informative.

http://www.rsnhope.org/kidneytalk-podcast/show-index/new-kidney-allocation-system-revealed/
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« Reply #17 on: January 03, 2015, 05:00:54 PM »

I am 53 and received a kidney last April after waiting almost 5 years. I think it depends on the transplant center as to when you get a kidney, the fewer patients seems to make for a faster transplant. It was for me after I transferred from the VA to a private hospital.
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fearless
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« Reply #18 on: January 03, 2015, 05:33:51 PM »

"The allocation process is a zero sum game - you cannot improve things for some without making them worse for others."

Simon Dog, this is the truth of it. 
5% more transplants for patients under 55,
5% less transplants in patients 55 and older.

Yup.  That's me.  I was near the top for my region and blood type.  Now - who knows where I am time-wise.  Those with sensitization who are in the same category as me will be moved ahead.  And no matter where I am now, I am no longer eligible for the 20% of donor kidneys of which half are still ticking at 13 years or longer.  And more likely fall in the range of donors whose kidneys have a half life of 5 years. 

MooseMom.  Thanks for the link.  I listened to the whole thing and it didn't give me any encouragement.  In fact, the more I learn about the details, the worse I feel.  But it's important to know and understand. And I thank you.

jeanna, thank you.  I've been reluctant to ask the transplant center just exactly what my "percentage" is.  My center hasn't publicized the explanations of these new rules.  I think they're hoping patients won't ask.  But some hospitals sent out printed explanations and I happened to get one.  My coordinator is kinda weird about some stuff.  On this site I learned the kind of questions I can ask about the donor kidney.  When I asked my coordinator about that, she got a little indignant.  Said the donor's history isn't shared.  I said I don't want to know about the donor, I want to know about the kidney (match, CMV, etc.)  They don't seem to want to have to get down to the nitty -gritty.

Michael Murphy - you're right.  Just the fact that we're here on this site means we're more pro-active than most.  One of the reasons I got away from this site was that after all these years I try to limit the energy I spend absorbed in dealing with the disease.  I learns tons here.  And from the very beginning I've been a model patient.  PErhaps to my detriment since I got in the habit of demanding things the clinics didn't want to give me and demanding explanations for this that and the other.  I was asked at one point if I had any advice for patients who couldn't seem to keep up with compliance.  I decide how much fluid to take off at each treatment. It's never more than 1.5 L and is often under 1.  For years I took 3 binders with every meal: ate 1/4 of the meal, took a binder, got to half, took a binder, ate another 1/4 and took another binder.  I got a nice break on nocturnal when I didn't have to take any at all.  Now back on 4 hours I'm up to my full complement of all these drugs again.  Truly - keep up the good work and you will do well.  Many many people don't make it 11 years on dialysis like I have.  Some make it much longer.  I just never thought when I started dialysis at age 43 that this would be it - for however long I can stand it (or my body can hold out)

Amanda - dear friend.  So glad to hear from you.  I have no idea about misuse.  When I learned that rich people can hire a company to coordinate multiple listings and provide emergency transportation to whichever hospital finds them a kidney, I realized that the kidney transplant system is gamed, like many other systems.   All other things being equal, a rich person will get that kidney before you do because they're going to make sure they're in the right place at the right time - anywhere in the country.
The reason I waited so long to get on the transplant list is that the clinic I started dialysis at wasn't great about promoting that.  When I started, the wait list for my type was about 2-3 years.  I also mistakenly assumed that my sister would be able to donate once I was ready - since she is a perfect match and very healthy.  But, surprise!  Low clearance in spite of good health.  So, by the time I got on the list it had been 6+ years.  And the list for my type is now obviously > 4-5 years.  And now, who knows?  And what can I really expect with these changes?  I feel horribly greedy wanting the healthiest kidney.  I think if there is room for misuse it would be that those kidneys that might just barely fit in the upper 20% will go there - so that younger or healthier people will have them.  That would make the long-term survival rates look very good.  And someone like me could be written off )"oh, they're older, been on dialysis a long time, etc" - not expected to survive so long anyway. Also, the 80% will not be distributed nationally.  The regional allocation remains the same for those kidneys, although there will be some overlap in border areas to make some kidney available to more people close by (as I understand it)  Perfect matches will still go nationally.  Amanda, I may message you soon.  I so appreciated contact with someone who's in a similar situation.  But it does look like those with sensitization will be given preference if a suitable kidney becomes available.  I hope I understand that correctly and that that means you!

Cassandra - I do agree with what you say regarding "have to be as informed, proactive, and incredibly lucky as poss to outlive statistics."  and I have found that lucky is just as important as the other two in many situations.  This is what I lament at this time.  Bad luck for me.  But where are you at with things at this time?  I hope you're doing well.

iolaire - thank you so much.  The seats at my clinic are tight.  It's weird.  There are 2 clinics in this town and way more patients than they can easily accommodate, but there  seems to be no push to expand services.  The bigger clinic has the less popular director, I believe.  So everyone's trying to squeeze into the smaller one.  I've been pushing for a nocturnal shift since I got there.  But the people who need to take the initiative to make it happen aren't inclined to do so.  The last patients are out by 5 pm.  No evening shifts.  The techs there work almost every day (instead of having staff for alternate days)  It's bogus.  But I've lost my stamina and impetus to move or do anything else except try to survive.  Too many setbacks over the last couple of years.  Now this.  It's going to take a while to get the wind back in my sails and figure out just how to live the rest of my life.

Sometimes the time just collapses on me.  I do appreciate everyone's comments because even if it's not possible to relate perfectly, it's something to care.  Thank you so much. 

iketchum.  Just saw your post as I was about to post this.  The transplant rules changed at the beginning of December 2014.  Usually the difference between hospitals has more to do with the kinds of kidneys they transplant.  That's my understanding anyway.  I'm very happy you got your transplant. :)
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fearless
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« Reply #19 on: January 03, 2015, 05:42:25 PM »

I think I need to find out where Zach does his dialysis.  :)  He puts my complaining to shame.  It's just been a long hard road so far and the thing that was keeping me going was the growing hope that the call was right around the corner.  And not just that, but that it would be the best possible outcome for me based on the luck of the draw.  When I found out my perfect-match sister couldn't donate 5 years ago, it was a big let down.  But I readjusted and placed my faith and hope in the deceased donor program.  Now, I must readjust to having those hopes pulled away.  Sorry for the self-pity.  Today was a dialysis day and I always feel worse after that.
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Simon Dog
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« Reply #20 on: January 04, 2015, 09:29:49 AM »

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I've been reluctant to ask the transplant center just exactly what my "percentage" is.  My center hasn't publicized the explanations of these new rules.

Figure it out for yourself:

http://optn.transplant.hrsa.gov/converge/resources/allocationcalculators.asp?index=82

What is of equal interest is the KDRI/KDPI of any offered kidney:

http://optn.transplant.hrsa.gov/converge/resources/allocationcalculators.asp?index=81

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When I learned that rich people can hire a company to coordinate multiple listings and provide emergency transportation to whichever hospital finds them a kidney, I realized that the kidney transplant system is gamed, like many other systems.   All other things being equal, a rich person will get that kidney before you do because they're going to make sure they're in the right place at the right time - anywhere in the country.
Steve Jobs took it to the extreme with his liver - I think he got his xplant in TN.   Things are a bit easier when you can tell you pilot "keep the jet fueled and be ready to go 24x7".
« Last Edit: January 04, 2015, 09:34:11 AM by Simon Dog » Logged
jeannea
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« Reply #21 on: January 04, 2015, 11:34:14 AM »

I often sound like a broken record on this. Have you considered seeing a therapist? A therapist can be very helpful when you feel like your world has been turned upside down. I know a lot of us grow up with "I'm strong I can do it." It's not necessary.

I think life is easier for people with huge sums of money no matter what the problem is. Manhattan is an incredible place to live...if you have money. If I ever get lots of money, I'll help kidney patients somehow. But I don't think there are enough of those super rich people looking for kidneys to mess it up for the rest of us.

If you read here, many of us got our kidneys when we were hopeless. I had 97% antibodies with a history of really bad CMV and a history of PRES (which comes from Prograf.) I got my kidney. Things have not been perfect but it's plugging along.
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fearless
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« Reply #22 on: January 05, 2015, 03:03:49 PM »

At this point my expected survival isn't good - with or without transplant.  And that is because of the 11+ years i've spent on dialysis.  It's possible for someone my age to still be in the top 20% of life expectancy, according to the literature i found through Simon Dog's links.  That would be someone who had no diabetes and was in good health other than kidney failure, and was just just becoming sick in their early 50's.  So, I am being "punished" for surviving on dialysis all this time.  I understand the reasoning.  The goal is for younger people to live longer with fewer transplants and to give the kidneys that won't last long to people who aren't expected to survive long whether they get them or not.  There's still some chance i could end up with a good kidney.  But I don't see that chance as being very great. 

jeanna, I appreciate your suggestion.  Unfortunately I'm past the point where anything a therapist could say or do would help me.  It's all about the facts now.  Facing facts.  And the meds are placebo.  did you know that?  We;ve got tons of people taking anti-depressants when the research actually shows they're no better than placebo. However, they are bad for your liver and kidneys (if you've got them).  And they cause dependency, weight gain and other problems.  Nope.  Therapists are invaluable.  But at this point they simply can't relate to where I'm at.  There was a great social worker at one of the clinics I was at in the past who was great to talk to.  But she was a rare breed.  I think she had special training in grief counseling.  And that's what I'm feeling. Grief.  For myself.  Rather pathetic, but I can see myself very clearly.  I'm not ready to quit this very minute, but I certainly am having trouble adjusting to my changed expectations for the future.  I'm not married, I have no adult children.  I'm driving a car my sister owns - out of her generosity.  If she weren't also renting me to live in her house I'd be homeless because I've been trying to live on $1000 month for years now and everything's gone.  I had $1500 in medical bills not covered by insurance last year - paid by my 79 year old mother.  I fell and messed up my face and it's going to cost $2000 to fix that - not covered by insurance because it's not considered functional damage.  I look like hell.  I feel like hell.  My life for years has been dialysis dialysis dialysis.  I've fought to do the best for my health.  Why?  when it means more work and time doing DIALYSIS.

I better quit now.  Not liking the way I sound.
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Deanne
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« Reply #23 on: January 05, 2015, 03:46:51 PM »

If it helps, I think I understand what you're saying. It sounds like your grief isn't necessarily about the change in rules. The change in rules triggered your sense of it all. You grieve for what could have been if you'd had a transplant years ago. :grouphug;
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
Simon Dog
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« Reply #24 on: January 05, 2015, 09:45:33 PM »

Two shocking facts:

- 50% of cadaver xplant patients get kidneys in the lower half of the quality hierarchy
- 50% of MDs graduated in the bottom half of their med school class

You still have a decent shot at a "top half" kidney, and are free to decline any offered kidney you don't think is "good enough" without losing your place on the list.

The important thing is to understand the rating systems (see my earlier post), and have your questions prepped so you are not thinking "wish I asked that" when the surgeon calls with the offer.

And, with number of MDs who will see you in the hospital, odds are you will see some of the bottom 50%ers.
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