I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: fearless on January 01, 2015, 10:04:24 AM
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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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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.
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.
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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 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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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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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?
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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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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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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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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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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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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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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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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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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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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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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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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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"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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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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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
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".
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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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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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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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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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A therapist doesn't have to work exclusively with kidney patients to be helpful. You are suffering from the loss of the imagined future. My psychologist taught me that. It's a well understood problem and one that most therapists are equipped to deal with. The medicines are not placebos. However, they will not help every person in every situation. No medicine will.
I guess I'm starting to wonder what you want from us. We have given you information and encouraged you. You seem intent on proving to us that we are wrong, that you are screwed. This is an indication of depression. However, like most treatments, therapy won't work if you refuse to do the work. Do you want a transplant? Do you want to give up? Do you want to wallow? (Sometimes I really need to wallow.) Here's your chance. Be honest with us. If you want us to agree it's hopeless and your life is over, I think there a few on the Facebook group who could help you. If you want to really know where you stand, ask your transplant center. If you want to continue with dialysis and just leave the whole transplant thing to chance, that's cool too.
If you just want to rant because the whole thing sucks, we're with you on that. I just believe it will suck the tiniest bit less if you decide which direction you want to go. If you don't want to decide yet, I find ice cream helpful.
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Noahvale, that's one of the best posts I've ever read on IHD. Thank you for taking the time and making the effort to compose it.
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I started in center dialysis when just 22 in 1978. Stayed on that mode of renal replacement therapy, by choice, for 12+ years because I learned how to live well on dialysis.
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That was 10.5 years ago and I've been back on incenter ever since.
Good post, I'd also like to use your post to highlight the fact that the average life expectancy is average, based on all dialysis patients and for some people it will be much longer, and others much shorter.
Think of your center and who is in there, some percentage of the people have 20 or 30 years of retirement under their belt and even if they were not on dialysis they would have relatively short lifespan left, then you might see some people who are having a wide range of health issues - but even being a chronically unhealthy person don't its doesn't mean they all will have that shorter life expectancies - read some of the peoples stories around this site for inspiration...
I personally feel that the younger or more healthy overall you are the more likely you will push or blow past the upper end of those average ranges. Everyone is different but we have people who post of these forums who have been on dialysis for 20+years, as noahvale illustrated. So even if you pass on a transplant, there is nothing saying that you personally only have 12 years left to live or whatever the average life expectancy is on dialysis.
re: jeannea's comments - I like the idea of group meetings and therapy, even though I've not yet felt that I need it, but I may sometime - I'm only a year into this lifestyle. Just like going to school, its not like the group meetings or therapy will give you some new grand knowledge or way of being positive, but it will help you move in the right direction and sometime along the way you will find that you are better off than when you started.
(I use school as an example, because you sit in class and a lot of the time the teacher is not telling you something completely new, its just expanding on what you already know. But by the time of your graduation you (should) have absorbed a ton of new content and are a changed person as compared to when you started that phase of your education. )
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Just reading the paper today. They had a story about the 84 year old time keeper for the Dallas a Cowboys who went on dialysis
at 81 and just had a transplant at 84. The doctors say he Is doing well.
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UCSF have a pretty good video on the new rules. From the people that created/decided the new rules:
https://www.youtube.com/watch?v=mqJtVinX-wI
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Noahvale: I hear you brother! When I was reading your post I also thought of the book Unbroken. Best book I ever read. I'm not sure I want to go see the movie because I don't want to ruin the movie in my head. I also have the plan of potatoes, bananas, and milk. I truly pray God takes me in my sleep.
Hard subject but it is good to talk about it.
I've also heard that the new rules say that if you get on the list your years of dialysis count. That is BS when people have had years of annual exams and blood tests to stay active.
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I can't really express my gratitude adequately for these comments. I'm feeling better. The sun is shining here and it's been so long since that beauty showed his face. I was so depressed I stopped eating and I think that brought on some gallbladder problems. I was vomiting and ---- for 2 days. Can't really do anything when that happens except lay on the floor in the bathroom and wait. I wasn't well enough to get ready for the clinic at 5am, but when I called to tell them, they weren't going to let me back until Thursday. Which with the holiday last week would mean only one treatment in seven days. Dummies. Thank goodness the digestive chaos ceased mid-morning and I dragged myself in for a few hours of treatment. Meanwhile, the guy that crapped himself showed up 2 hours after I got there (about 5 hours late for him) and said he had come from the hospital as early as he could. They hooked him up and he was still there when I left. So, I think they were giving me a line. I had asked: should I go to the hospital? Director said: no, they won't treat you if it's not acute. I think the hospital check your potassium to see if you're "acute". She didn't want to treat me, but didn't want me showing up at the hospital and telling them that my clinic said they wouldn't treat me (that's my guess). Blah!
Dear friends - I just proceeded to write a book here, and then thought better of it.
Mostly I've just been crying after reading your posts. Crying out of the compassion you've expressed and the compassion I feel for you all.
Noahvale, I've kept and not forgotten the things you've written to me before. I think I know I need to find the clinic and doctor who will help me for the long run. I just counted the places I've lived - 19 different homes. And three while on dialysis. Too much moving and changing. Every time, it takes a long time to re-establish some kind of equilibrium. But at the same time I couldn't wait to change each time. One little escape gave me hope for something better. And the last great hope was the perfect transplant. Truly unrealistic. But that's me. Life will eventually force me into realism I suppose. I hope I survive it. :)
OK - now i just wrote another book and deleted it again.
Please let me spend some time with what you've all written here. I just wanted to say that I'm reading it and i thank you again.
the particulars of my life mean something to me. And yet they mean nothing at all. I can't really know the pain and suffering of anyone else, and I guess no one can know mine. It's not a contest of awfulness. The challenge is to cope no matter what. I do understand that. And even so there's no shame in giving up. I'm not ready to give up and perhaps it's inappropriate to rant. But you guys make me feel alright when i do so.
For what it's worth to the banana lovers, I guess I was on a strong potassium bath (or whatever) when I did nocturnal. I used to drink a big glass of V8 (low sodium) after each treatment. And my potassium still got low once. I;m sure I could have gotten away with a banana once in a while :)
I know what I need to do is find the clinic and doctor who will understand that at this point what I need is to feel good when I'm not actually doing dialysis. I'm sure that's nocturnal. And I'm sure that means going "off-protocol" on the epogen. I have some heart failure, apparently, and a little valve dysfunction. Sadly that probably could have been prevented with better medical care and monitoring. I need a good hemoglobin to deal with that. I know if I have heart surgery to fix anything - they'll take me off the list. But maybe now that doesn't matter. One of the cheap thrills of my life was simply enjoying my health. I used to hike for miles and it's just been many years since I could do that. That's enough to depress me. And I know that's rather insensitive. But seriously, I've never had much money. I've lived 19 different places in my life to try to work and get through school. I never "vacationed" or traveled for pleasure. I had my legs and my heart - and the future. I guess right now I'm just a person who didn't enjoy her present while she could - always looking to the future. Then, the future happened. Even then I wouldn't see it. Now, I'm being forced to see it. After a number of glimpses that made me cry and which I simply refused to allow into myself, my rationalizing and unrealistic optimism has finally met its match. But I will survive. Because I'm fearless :) And I don't really believe this world anyway. Even if I die, I'll survive.
I want to respond to each. And I will in time. Being sick for a couple of days put the pressure on with some things that are of a time-sensitive nature.
Please accept my gratitude and love :flower;
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Fearless I can only repeat what my cardiologist told me. In 2008 my Primary care doctor told me I needed to have a stress test. I had just had one the year before and I started to blow him off. He got upset (I really like this doctor funny and caring) so I scheduled a visit to the group cardiologist department. They gave me a nuclear stress test that left me like a beached whale ( I was over 360 at the time). I clearly failed and two day later I was in getting six stents put in my heart. It turned out I had had a heart attack. The important thing is that I was major league bummed afterwards. Thats when the doctor told me not to worry that if I followed the directions and came in for a check up and periodic testing nothing could happen that they couldn't fix. Then I remember the 40 year old male that came in with a major heart attack the staff was referring to as a widow maker. They rushed him into the cath lab broke up the clot then stented. End result no heart damage he went home the next day. Last year due to a car accident I needed rotator cuff surgery which the doctors felt was major. They put me back in the hospital for a angiogram and the results matched the X-rays from 2008. I think it works like dialysis do as your told and take your medicine regularly and go in for periodic testing you can keep on going to either a bus hits you or your relatives put you away.
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The old system was not working. Deceased donor kidneys are a scarce thing, so someone is always going to be disappointed. There simply are not enough to go around.
With stricter helmet and seatbelt laws, better airbags, improved emergency room techniques and brain injury rescue, there will be even less donors in the future.
While age is not the only factor in determining the score of the deceased donor kidney, this will give you an idea of what they are dealing with.
People waiting for a kidney in the US:
64% are over 50 years old.
25% are 35 to 49 years old.
9% are 18 to 34 years old.
Less than 3% are 17 years old and younger.
Deceased donors in the US:
35% are over 50 years old.
26% are 35 to 49 years old.
28% are 18 to 34 years old.
11% are 17 years old and younger.
In the past, basing the list primarily on wait time, a 16 year old kidney could go to an 80 year old. And a 55 year old kidney could go to a 20 year old.
The changes mean that a kidney from a 30 year old will likely go to a 30 year old or younger. And a person 50+ may get a 35 to 50 year old kidney.
We are hoping to find a living donor for our daughter, and she will enter into a swap as her high antibodies (100%) make her hard to match.
Bringing a living donor to the table will save Jenna, and the other recipient in the swap, and also REMOVES them both from the national wait list, so everyone else waiting moves up.
So even though Jenna, at 29 years old, might benefit from the new system, we are doing all we can to find a living donor. I hope it works out.
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Sorry, thanks again and for newer comments. Have written and deleted again. I just have mixed up mind.
But the one thing I have to say is that I felt bad about referring to the "guy who crapped himself". I feel I have to apologize for that, even though he probably wouldn't see this. Actually I'd been talking to him because we started at this clinic at the same time. He was new to dialysis. He's got so many problems and has come into the clinic with tons of fluid on. They always scold and lecture and threaten him, but I know it's not his fault. I know what it's like to give up. I've been strongly encouraging him to make the drive to the nocturnal clinic, and he lives about 15 minutes closer to it than I did, from what I can tell. I got my little reminder to "judge not lest ye be judged" when I couldn't go to the clinic yesterday for fear of crapping my OWN self. Yup. The universe has a way of reminding you: there but for the grace of God go I. Didn't mean to refer to this guy in a crass way. It's how I'm feeling about my own situation as well. I've had my share of out-of-body and I'm-so-sorry moments.
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Fearless dialysis is not for the faint of heart. The fact that you are even confronting your feelings instead of trying to mask them show you are a person of courage and rarer you are self honest. Please note you are not alone in dealing with the blessing and curse of dialysis. Sometimes I feel like Sisyphus pushing a rock up a hill. Dialysis can appear to be a never ending battle, with a endless series of sessions cascading into a future that looks the same. Then I slap myself and try to worry a week at a time. I need to get through 3 sessions this week next week is next weeks problem. I celebrate each Friday since I then get a week end off. Does your center have a social worker you need to talk to someone to explore ways to take control of your life. See if you are eligible for job assistance. If not do volunteer work. You are allowing your disease to dictate your life.. When I move to my retirement house in the Adirondacks I plan to spend part of my time delivering meals to the elderly. And if three is still free time find other ways to help others. What I want to do is keep part of my life away from the disease and the treatment. I find that this is a nasty thing we have to do, some days I feel great and some days I feel like I was dragged home behind my truck. But in the end I want to be able be more than a patient I want to be the me that I was before dialysis and that requires me to control part of my life. I am sorry I rambled but your pain has touched me and I see a lot of what I feel in your pain.
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When I was reading your post I also thought of the book Unbroken. Best book I ever read. I'm not sure I want to go see the movie because I don't want to ruin the movie book in my head.
I won't see the movie either. No need to see a reenactment when the book was so powerful.
When I read books I make a movie in my head. My own movie is better than theirs most of the time.
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I read all the posts and your story is painful.
It is an irony that your code name is "fearless".
Let's face it, every beginning has an end. We all know that no one get out of here alive. It is a journey that we travel with its twists and turns... It is not the statistic but rather how a person faces the
challenges that will determine the outcome of life itself.
Please accept my apology as I will be frank with you. If you could divert your focus toward some other goals and purposes, your life will have more meaning.
One example there are a lot of free classes online by reputable Universities to keep you busy.
--- The chief function of the body is to carry the brain around. ~Thomas A. Edison ~
PS: In three months I will be on dialysis for 33 yrs.
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I read all the posts and your story is painful.
It is an irony that your code name is "fearless".
Let's face it, every beginning has an end. We all know that no one get out of here alive. It is a journey that we travel with its twists and turns... It is not the statistic but rather how a person faces the
challenges that will determine the outcome of life itself.
Please accept my apology as I will be frank with you. If you could divert your focus toward some other goals and purposes, your life will have more meaning.
One example there are a lot of free classes online by reputable Universities to keep you busy.
--- The chief function of the body is to carry the brain around. ~Thomas A. Edison ~
PS: In three months I will be on dialysis for 33 yrs.
:2thumbsup; No doubt your acceptance and good outlook helped carry you through it all!
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Well mah peeps. I don't think I can write what I want to without writing a book. And I don't want to write a book. I guess one thing I've realized is that I don't have any close relationships with anyone who really understands what I've been through or where I'm at. Even the people who love me very much and who spend a lot of time with me don't know what it feels like to be in this body. And unfortunately I sense a gentle but noticeable "shutting down" on their part when I need some emotional help the most. I really can't blame them. I can't relate to their lives very well anymore either. So many of their "problems" seem so trivial. It always used to be easy to offer encouragement. After all, I was in denial about my own situation and in many ways divorced from what my own body really feels like. Having lived so much of my life for the future, it's tough to deal with the present. But i guess I knew that there were people here at IHD who would understand, and who maybe I should try to understand. So I take all your advice, encouragement, and better attitudes to heart.
Thank you for the information, links, advice and reading suggestions. And mostly, again, for the understanding and sympathy.
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Thank you also for the humor and strength of example.
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I'm not the one on dialysis, my husband is so I apologize if I am being out of line here, don't mean to be, just want to help. After reading your posts, seems you feel a little as I do....angry about others making decisions that directly affect my life. I've been through a lot. In fact, years ago an undercover cop protecting me once told me that my life is where Hollywood gets ideas to make movies. Yup, things were pretty bad. Some have told me I ought to write a book. It's all been one trauma after another. And just when I think I'm finally starting to recover from a crisis -wham! Here comes another! Get married, both get laid off, lose a house, start dialysis (home-hemo). I am 50 years old. A doctor once told me that the older we get and the more trauma we go through and the frequency can make it harder for some of us to cope, we might need more time. I started learning some Cognitive Behavioral Therapy skills and making short-term goals for myself. I only deal or do what I can from day to day and try not to beat myself up over things I can't do or feel up to doing. Some days I just let things go and focus on just one thing and don't give a rip about anything else. Most days I am overwhelmed with grief, fear, anger, depression and exhaustion and I'm not even the one on dialysis. But over the years and through all the drama and trauma, I now I am no longer the same person I was 20 years ago, 10 years ago, not even 3 years ago. Some days I hate who I am. Having a dog, I was forced to take him on walks and that actually started helping me. Was a small start but I started to mentally and physically feel better. Then the dog died. And I can't afford another or able to commit to a new dog. So I am trying to figure out a new routine to work off my anger and anxiety. Not there yet. Might start reading up on Cognitive Behavioral Therapy, tho. There's a book called "The Dance of Anger", I might read that. Don't know. I'm sure I'll learn some new trick or tool to use for coping. I started out wanting a quiet, simple life but ended up with anything but that. And I'm tired of having things decided by other people. I realize there are some things I must accept but I think it should be okay for me to stand up and say "I will do my best to cope but will never fully accept this" because well, I don't have to! Meanwhile, I'm looking at short-term goals I can achieve just from day to day and if I do a little more than I did yesterday, then great. Do a little less, who cares. It's my life. I just want to be able to be my husband's partner in home-hemo while also being a good wife and do the cooking and cleaning, etc..I don't need a yacht or to jet off on some exotic vacation, just want to have a routine of getting things done in an orderly fashion, feed my husband a good hot meal and take care of all the mundane things (that I actually enjoy taking care of) without some major crisis popping up and throwing everything out of sync. And I don't want to have to keep explaining things to our families. If they get it, they get it but if not (and it looks like they don't), then to heck with 'em. I'm too busy to keep up the little "dance" for them. Well, enough said. You're being strong by being here and writing. That is something and I hope it turns into something more for you. Keep writing, keep thinking, see what happens from different angles. Good luck.
I know I'm rambling but that's just it -at least you got on here and wrote! I think writing in itself is therapeutic and your words may have just very well helped someone else, like me for instance, so thank you!
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I see the advantage of expressing your problem, it gives a chance to let the steam off your mind. Again this is very courageous.
In the Third World countries where basic necessity is lacking, health care is non- existence; sometimes I think we forget the luxury we receive such as dialysis - a second chance to life. Life is precious!
I hope you do not mind that I post the short incident from the actor Sidney Poitier who nearly drowned:
(Poitier described, in great detail, an incident that happened when he and his wife went on vacation to Acapulco, Mexico with his agent Marty Baum. Sidney and Marty went swimming in the ocean, when suddenly they were caught in undertows and waves that almost drowned them. Only a few passages from these pages are below. From: Poitier, The Measure of a Man, pages 211-215:
The seconds ticked away. We held our breath and prayed that another swell would toss us up again. One more chance, please, God... Then the tide reversed, causing billions of grains of sand to swirl around our legs and erode out from under our feet, loosening our grip on life. With every ounce of strength left in us, we tried to hold our ground, but there was no holding against that tide. It had come to take us down for the last time.
We screamed for our wives... They didn't hear us. And then it came again, the sea, pulling us back into itself, and down we went for the third time. And then, amid the violent turning and twisting in that under to, serenity began to enfold me. "O God," I thought, "has my time really come? Is this sense of well-being here to ease me through that final barrier?"
No answer. Just turmoil. "Lord, I ain't ready to die here," I confessed. "I'm simply not ready. I'm certainly not ready to die on the beach in Acapulco." There seemed to be seven or eight seconds between waves. I prayed, "O Lord, don't let the wave be late. If we're forced to breath down here, it will be over. Let it come on time; please, Father, don't let it be late. A few seconds off the mark and we'll be done for."
Suddenly the wave arrived, with no time to spare, and it smashed into the wall of sand and jettisoned us up to the surface and onto the beach...)
--- Yesterday is not ours to recover, but tomorrow is ours to win or lose. ---
~ Lyndon B. Johnson ~
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Dear Hopeless, I have been on dialysis for almost 7 yrs. Im 41 now, just transfered my time from another hospital to get to top of the list. How do you know your not still there? Im sorry your so down. I'm getting 8 hr treatments now, nocturnal. I'm new to this site and your my first post. I wish you every happiness!!!!
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Well mah peeps. I don't think I can write what I want to without writing a book. And I don't want to write a book. I guess one thing I've realized is that I don't have any close relationships with anyone who really understands what I've been through or where I'm at. Even the people who love me very much and who spend a lot of time with me don't know what it feels like to be in this body. And unfortunately I sense a gentle but noticeable "shutting down" on their part when I need some emotional help the most. I really can't blame them. I can't relate to their lives very well anymore either. So many of their "problems" seem so trivial. It always used to be easy to offer encouragement. After all, I was in denial about my own situation and in many ways divorced from what my own body really feels like. Having lived so much of my life for the future, it's tough to deal with the present. But i guess I knew that there were people here at IHD who would understand, and who maybe I should try to understand. So I take all your advice, encouragement, and better attitudes to heart.
Thank you for the information, links, advice and reading suggestions. And mostly, again, for the understanding and sympathy.
Most of us have people who love us but do not understand what it's like to be in our position. On the other hand, I love my uncle who is battling cancer and dealing with chemotherapy, and I do not know what THAT is like. Many people "shut down" around us because they DO love us and don't want to say or do anything that might make us feel worse.
To be honest, I never knew what anyone could say to make me feel better. Do you? What would you like people to say to you? They can't say, "I understand how you feel" because you know they don't. They can't say, "Everything is going to be OK," because they don't know that. I often asked myself, "What do I want from people?" and I honestly couldn't answer my own question. If I couldn't make myself feel better, how in the world could I expect anyone else to? It's a real conundrum.
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You are suffering from the loss of the imagined future. My psychologist taught me that. It's a well understood problem and one that most therapists are equipped to deal with.
Off topic, but "loss of the imagined future" is a really useful concept when you put it in those terms. Assuming I am not misinterpreting it, this seems to describe how I feel about my daughter's condition, and what makes the experience kind of surreal.
Basically, my daughter has been the same person since being diagnosed (completely out of the blue) with ESRD and starting dialysis. Of course, we've spent a lot of time in the hospital, and there are many new tasks needed to keep her healthy (especially with PD). She's not doing all the activities she used to do, either. But there is no actual loss. I'm not mourning my daughter. She is very much alive, and I appreciate her more than ever. I have never been so proud of her before, and I take no credit for whatever kind of steel she is made of.
But she's so smart, so confident, and (was) so very strong physically. I imagined that the world was her oyster. I knew I might have to help her out from time to time, but I always expected great achievements and a long life for her.
I expect all that now. Yet, I also know how much more difficult that's going to be.
I understand my coping mechanism well enough. Woven into the narrative of dialysis and transplants is a medical breakthrough that will restore everything she's lost. It doesn't have to happen now. It could happen 20 years from now. If it doesn't happen at all, though, her future will be very different what what I hoped.
The issue is not loss. I'm not sure I know how I should feel. Things seem so much the same on a day to day basis, but I also know they're different. It's not the same as going through this personally, but maybe others who have kids with ESRD have felt this kind of limbo between life as usual and a looming sense of loss.
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Thank you for new comments.
The new allocation procedures were bound to be good for some and bad for others (as was so eloquently said by others above)
I have to deal with this either way. But it's been most helpful to hear from you all. Thanks again.
Moose Mom, I've asked myself the same question. But I do think there are ways for people to be supportive without claiming to know what you feel or telling you it will be better. I've learned a lot about relationships through this disease. In the end, like Job's friends, it's something for someone to simply be there with you when you're afflicted with sores and boils and the whole world seems to think you must have offended God somehow.
Good to see your lovely icon again after what's been a long time :)