Hopelessness with new transplant rules

[jeannea]

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.

[noahvale]

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[MooseMom]

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.

[iolaire]

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.
...
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. )

[Michael Murphy]

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.

[amoeba]

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

[Rerun]

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. 

[fearless]

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  

[Michael Murphy]

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. 

[okarol]

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.

[fearless]

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. 

[Michael Murphy]

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. 

[noahvale]

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[Rerun]

 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.

[dialysisuser82]

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.

[okarol]

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.

  No doubt your acceptance and good outlook helped carry you through it all!

[fearless]

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. 

[fearless]

Thank you also for the humor and strength of example.

[PrimeTimer]

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!

[dialysisuser82]

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 ~

[TNJean]

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!!!!

[MooseMom]

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. 

[PaulBC]

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.

[fearless]

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