Honest Reason for NOT wanting a transplant

[Zach]

I hate the fact that my body requires dialysis but dialysis itself is not ,for me, an object of hatred.  It's a life-sustaining tool that I'm glad is available to me.  

Well said.  Thank you.

[kitkatz]

Now remember some of us are stuck on dialysis for ever or until our lives run out.  There is no other option for me. Sometimes we act like there is always a choice to get a transplant and often there is not.  This discussion is kind of moot int hat case.

[flip]

ditto, Kit

[twirl]

you are so right
and how is nighty, nighty D?

[del]

Very well said, monrein. 

[TynyWonder]

transplant stats from UNOS

First of all, what does UNOS stand for?  What do all the abbreviations stand for in the chart?

[RichardMEL]

Kit, flip and others in that situation - I feel the most for you. Yes, I know some who can't have the option of a transplant don't want one and are happy on dialysis... and I, at least, admire those people... for those who would want one and cannot... that is a tragedy in my mind. I look around my unit sometimes at a lot of the folks in there who aren't going to get that option (mostly older, but some younger) and I really feel for them because this (dialysis) is likely all they will know. Sometimes the thought of a successful transplant (as a goal to look forward to) is all that keeps me going. Yes, I know when (!) I get one, it could fail soon, reject or not take at all... but I prefer to think positively that I will at least get a few years out of it, and potentially much more.. and those years I sure intend to make the most of that relative freedom from dialysis needles, restrictions and the like... and for those that can't.. well.. like I said my hat really goes off to you guys because I'm not sure how I would handle that outlook at my age etc. I know everyone is different of course but that's just how I feel.

[del]

Richardmel I hope you get your transplant and that it works well for you for years and years.    It is different I think when it is your decision not to have a transplant than when someone tells you a transplant is not an option. Maybe one day hubby will decide he wants to go for a transplant. It is just another option for him.  He is doing so well though that even nephs agree with him that why fix something that is not broken. Plus nocturnal hemo has given him so much of his life back.  Not the same at all as in center.

[RichardMEL]

I definitely agree and I totally support anyone who can and does make the decision for themselves. I would never tell someone THEIR decision about THEIR life is wrong, or bad or something.... even if sometimes it can be heartbreaking to others (eg: Anna & Randy). One of the few freedoms EVERYONE has in life should be to decide things like this for themselves. I guess my comments were more an extension of the frustration and unfairness of a situation where that decision is taken from you and you lose another aspect of control over your own life.

I suppose in some respects we (as a community) are lucky to have a number of treatment options to cover different choices - PD, in centre hemo, home hemo, nocturnal and even as in the last Kidney Talk podcast I heard - in center nocturan (which sounds great to me) and of course transplantation for some. And for others, no dialysis (as a choice).

I can't do home hemo because I'm by myself with only Celeste to help... and while the pictures of a cat holding needles ready to stick, and resetting an alarm would no doubt be hilarious - somehow I don't quite think so!! So I'm sort of stuck (no pun!) with in cener hemo, which is why a transplant is an option I really am wanting.

Thank you for your support re the transplant... My gosh I need it soon.. I have so many IHD women to visit... Anna, Deanne, Karen, Claudia......

 

 

[pelagia]

transplant stats from UNOS

First of all, what does UNOS stand for?  What do all the abbreviations stand for in the chart?

this question is with regard to the chart I posted earlier in the thread at http://ihatedialysis.com/forum/index.php?topic=9527.msg160742#msg160742

"UNOS" is the United Network for Organ Sharing

"non-ECD" is non extended criteria donor (donor did not have high blood pressure or some other risk factor)

"Tx" is abbreviation for "transplant"

"N" is the number of individuals for whom they have information, or the number of individuals in a specific category identified by the left most column and the headers across the top

"%" is the percent of individuals for categories

"Std. Err." is the "standard error"  I'd have to track down the source material to find out how they calculated it, but generally a small percent error means the numbers used in a calculation don't vary much, or alternatively that the sample size is very large.  Both make it easier to have confidence that a smaller sample from a larger population is representative of the population.

So, if you follow through the rows and column headings, you will find that the average graft survival is 72.8% for someone who received a transplant when they were between the ages of 35 and 49 and received their kidney from a deceased donor (non-ECD) 5 years previous. 

That means that out of every 100 people in this category, on average, 72 people (and that poor 8/10ths of a person) will have a functional kidney at the five year anniversary.

The highest graft survival after 5 years is for Asians (78.2%), and the lowest graft survival after five years is 58.8% for folks who received a transplant when they were 65 or older.  Or turn that around to 41.2% of people over 65 who had a kidney transplant had functional kidneys after 5 years. 

If you link to the UNOS site http://www.unos.org there is more information to be found.  Start your exploration by clicking on "Patient Survival Rates."

[TynyWonder]

Pelagia,

Thank you so much for taking the time to send me the UNOS website! 

[G-Ma]

RichardMel....Celeste is really not so far off........a few weeks ago there was an article in our paper about some organization (which I promptly forgot but now seems could do) that trains small monkeys to operate microwaves, fetch, tote, comb hair, operate ranges and many things for paralized people and they are doing it very well.  Now, I'm thinking..hmmm...no one to talk back....don't have to pay...unless with fruit??...hmmm... 

[Joe Paul]

that trains small monkeys to operate microwaves, fetch, tote, comb hair, operate ranges and many things for paralized people and they are doing it very well.  Now, I'm thinking..hmmm...no one to talk back....don't have to pay...unless with fruit??...hmmm... 

Sheesh, I hope my director at the clinic don't read this!! 

[Zach]

When I was a kid, I bought a squirrel monkey from an advertisement in Boy's Life magazine.
 

[G-Ma]

oh oh...I hear a story....share....are they really smelly??? I have heard.....

[flip]

I remember those days, Zach. One of my best friends bought one too. He was a nasty little critter.

[RichardMEL]

lol@trained monkeys... all I can think of is "Family Guy" where poor Chris has an EVIL monkey living in his closet....

[Zach]

This is really off topic, but ...
Here's Jeremiah:

[vandie]

This is really off topic, but ...
Here's Jeremiah:

I thought Jeremiah was a bull frog.

[G-Ma]

He was a good friend of mine.......

[Joe Paul]

Didn't understand a single word he said

[monrein]

But he always had some mighty fine wine.

Back on topic anyone??

[G-Ma]

Oh sure, now that this song is in my head........

[twirl]

where does the fluid go after it is drained or sucked out of out bodies----
do they have a drain pipe or something
  for the monkey

[okarol]

Joy to the world