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concern9
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« on: April 30, 2016, 03:10:23 PM »

Hi, this seems like a very informative forum. I began reading here because my older brother (68) has been on dialysis for five years and is presently being evaluated for a transplant. My major issue of concern for him is his poor attendance for dialysis. I have begun keeping track as best I can, and it seems he actually runs around 50 per cent. From what i have read here, this is pretty bad for his health and will also affect his transplant chances.
Anyway, I will keeping checking out the forum for any info on just how bad this might be for him, or possibly what I might be able to say/do to encourage him. It's not easy - he's single and there's really nobody other than me to try to "intervene" and he's not fond of advice from me. Matter of fact, he's downright hostile about it.
All comments are welcome.
Again, great site. Thanks.
« Last Edit: April 30, 2016, 03:14:21 PM by concern9 » Logged
kickingandscreaming
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« Reply #1 on: April 30, 2016, 05:46:21 PM »

Welcome, concern9.  I'm curious.  If your brother is so haphazard about his treatment, then why is he going for a transplant.  From what I gather, that requires enormous commitment both in the listing process and the surviving with process.  As a man with some years on him, he would probably be eligible only for a cadaveric kidney under expanded criteria (from an older donor or a lower quality/higher risk donor).  That is, unless he has a live donor available.  From what you're describing, I would guess that his dialysis behavior will be held against him. There are very few kidneys available, and they won't "waste" one on someone who has demonstrated recklessness.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
Simon Dog
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« Reply #2 on: April 30, 2016, 05:57:44 PM »

They no longer use the term "extended criteria" - it's all KDPI now.

The math is not bad for an elderly person.   Having an EPTS score (Estimated post transplant survival) above the top 20% means that you will not get a top 20% kidney unless nobody else wants it (which will happen the same time my strongbox from the Nigerian prince arrives).   So, he is eligible for anything from 21 on up - he is not constrained to a low grade kidney (generally speaking, a kidney with an 85 or higher KDPI score would be extended criteria under the old system).

High risk is scored separately from KDPI and, in fact, the data suggests that the risk is actually rather low.  Nucleac acid testing for HIV can detect the infection within 7-14 days of exposure, as compared to a minimum of 3-6 weeks with the older tests, and will generally do so before seroconversion, thus significantly reducing the risk of becoming HIV+.     HepC can also be detected rather early, and now, is 95+% curable, assuming you can afford the $95K for the pills or get it insurance approved.    You can get a low KDPI/high risk or high KDPI/low risk kidney (risk being the risk of infection, not the risk of graft failure).

But, if he is skipping treatments, it may be a self-resolving issue as he may not live to see a transplant.

There is always BEK transplant, however, they took their web site down due to the politics of the Chinese organ trade.  Back when there were advertising, it was $70K for a kidney (installed) with a $5K type-O surcharge.   Plus, Medicare does not pay for the drugs for a transplant not done in a Medicare approved facility.
« Last Edit: April 30, 2016, 06:05:05 PM by Simon Dog » Logged
Michael Murphy
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« Reply #3 on: May 01, 2016, 12:55:43 AM »

Skipping treatments is a dreadful idea,  The death rate according to  Emory University app 17% of 68 year old males in otherwise perfect health are expected to die each yes on dialysis.  The only way to improve those numbers is to be as compplient as possible.  If you brother needs to be fluid restricted and they need to take off excess fluid the strain caused by removing the extra water caused by skipping is enough to cause a heart attack over time.  Basically he needs to realize that failure to follow the program results in a early death.  I am sure his center has pointed this out to him .
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concern9
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« Reply #4 on: May 01, 2016, 02:10:06 AM »

First, my apologies to the moderator. I didn't notice that questions should be asked in a separate post.
That said, thanks for the responses and your honesty. I was not looking for "sugarcoating".
I fear he may have made some kind of decision already. Sadly, he's also a light to moderate smoker and shows no sign of quitting that either.
This is very tough, i feel like I am betraying him and he's always been a great brother to me.
Thanks again.     
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cassandra
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When all else fails run in circles, shout loudly

« Reply #5 on: May 01, 2016, 03:29:42 AM »

Welcome to the site concern9

     :welcomesign;


I'm sure your brother actually appreciates that you care.

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

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
Charlie B53
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« Reply #6 on: May 01, 2016, 05:15:36 AM »


First, welcome to IHD.  We are a growing Family and although we hate the reason for everyone coming here, we are always waiting with open arms to welcome new members.   Hopefully you will soon feel as though you belong with us.

Now, your Brother.    Sadly, some people do not take too well to aging.  Especially some of those that have an affliction that will eventually kill them.   Often they seem to have the opinion that they have had a well enough life and it is soon time for it to end.   They seem to intend to just keep doing what they have been doing all along, not willing to make those changes needed to extend what time they have left.

It is most difficult to talk to some of these people.   They are not willing to admit that there is a possibility of living longer.   They seem to be comfortable living as they are and not willing to expend the effort to change.   Actually angry at anyone that attempts to convince them in attempt to 'help' them.   These people are basically terminal and know it, and are simply marking time until their end.

All we can really do is try to accept them as they are.  Instead of attempting to change them, embrace them, love them, respect their right to make their own decisions.  Even those we do not necessarily agree with.    This isn't always easy, but once you do make this commitment to him you both may come to a much better understanding and better able to enjoy what time he has left together.
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kickingandscreaming
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« Reply #7 on: May 01, 2016, 07:44:00 AM »

Quote
This is very tough, i feel like I am betraying him and he's always been a great brother to me.

Go easy on yourself.  It is not you who are betraying your brother.  He is betraying himself. And there is really not that much that you can do.

That doesn't make it any easier to have to stand by helplessly watching someone you love be self-destructive. I suspect your brother is in a deep state of denial. He can't seem to accept that he has a disease that is really serious.  One where there are methods for prolonging his life but not fixing it.  It's hard to come to terms with that. For both of you.  It's like a drug addict or alcoholic who can't stop and we have to stand by and let the process play out-- often to a disastrous end.  But you can't make him want to do what it takes to stay alive. He has to want to.  He has to have a meaningful reason for staying alive and doing what it takes. There are some people who just have to test the limits.  To see how much he can get away with.  Perhaps your brother is like that. Playing that game with dialysis is like Russian Roulette.

Does your brother have any outside help?  A counselor of sorts?  Sometime a close family member isn't in the best position to help as you are invested him and the outcome.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
hatedialysis2
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« Reply #8 on: May 01, 2016, 08:48:02 AM »

Welcome concern9!     Your brother is very lucky to have a loving and kind sister like you.  Does he say why he does not want to comply with his treatments? The fact that he is just skipping treatments says he has not given up and is trying.  Perhaps you can go with him to one of his treatments to see if that can give you a clearer picture of what he is going thru.  I remember when I started I felt dreadfully ill after each treatment and would wind up in the hospital.  The dialysis treatments at the hospital did not make me feel so horrible.  So I finely came to realize that I had to switch to another center.   If your advice if being met with hostility it might be because he is probably getting overburdened with so many people giving advice.  You the social worker, dietitian, doctors, nurses, technicians......etc.  then to get on the transplant list you have to deal with that team and their rigamarole.  The world of dialysis and transplant is rough on body mind and spirit.  It's intrusive, demanding, life changing, and time consuming.   And that's if you have the most knowledgeable, empathetic medical team.  Imagine if you don't.     

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