Anyone have an Expanded Criteria TX?

[kickingandscreaming]

I am old (74, Type 2) and I score a whopping 90% on the ETPS.  I have no living donor available. And am clearly NOT a candidate for a "prime' cadaveric kidney.  I'm not even sure I want to get into the whole TX game.  But I am under pressure from my nephro and from some doctor friends that I should.  Everyone is raving about the ECD possibilities which would be all that I could possibly qualify for. But what I read about it doesn't inspire me.  It makes sense that at my age, I shouldn't be competing with younger people for a good kidney and that an older kidney would be a better match for my potential longevity.  On the other hand, when I read about how compromised some of these kidneys are, I'm less than inspired. 

Is there anyone on this forum who has undergone TX from this kind of donor?  How did it go?

An ECD kidney has a 70% greater risk for failure compared with an SCD kidney

http://cjasn.asnjournals.org/content/4/11/1827.full

[Simon Dog]

I welcome corrections, however, I believe that someone who is > 20% on EPTS (not ETPS) is disqualified from a KDPI kidney <= 20, but is not precluded from any kidney in the 21-100 range.   You may be mistaken in assuming you can only qualify for an EPTS kidney though, as with mating, lowering your standards gets you a match sooner, with higher chances of problems (also the same as with mating)

The term is no longer used, however, kidneys >= 85% KDPI are in the same range as the old ECD (Expanded Criteria Donor)* kidneys.

* - Post corrected to fix a word-o

[kickingandscreaming]

I'm not sure I understand what you're saying, Simon Dog.  Could you try to reword it?  I don't know anything about the "old EPTS kidneys."  Also, do you mean "mating" or matching?

[Vt Big Rig]

Yes, my score is way up there also  ..... over 70.

 I do not hold out much hope for a kidney. I had a friend offer; but turned out he had his own issues and could not qualify. 

But the conversation with the transplant surgeon was interesting about taking a high risk kidney. His point was the slim chance I could get infected from a kidney he checked out .... was balanced by the fact the he could cure me (or control) of anything I might catch from it made for interesting thought, as opposed to the rest of my life connected to fire hoses.

[iolaire]

Assuming you have the time and energy to complete the process and its not to big of a financial hit to be listed I recommend getting listed.   (Re cost in my case I never saw a bill sent to Aetna in listing until a three year follow-up where some labs went to Aetna for payment.) 

You will have ample time to form an opinion of what you are willing to accept well waiting and each time a call comes in you learn about the kidney and again have to say you want it or not (and I assume as you move along that day of accepting a kidney you will again have opportunity to back out). 

I also think it might be good get listed when you are as healthy as possible since if you change your mind later you might have new conditions that might make it harder to be listed.

Does Expanded Criteria Donors (ECD) include higher risk donors? I'm on the list willing to take higher risk kidneys, primarily meaning drug users or people who have been in prison and have received two calls (as alternates) on heroin overdose kidneys I the past years.  (I'm turning 42 is May.) If you are willing to take such a kidney it might open you up to better scoring kidneys than might normally be offered to you.  I was offered on diabetic kidney with a poor creatinine and I passed on being matched for that one.

Here is a story on heroin kidneys:
Heroin overdoses impact organ donations
http://www.journal-news.com/news/news/local/heroin-overdoses-impact-organ-donations/ngjCB/

[DialysisGoneFOREVER]

Kickingandscreaming, I couldn't agree more! You are NOT truly living if you need a machine to keep you alive! That's why I spent an extra 2 to 3 years looking for a living donor. Now I take my anti-rejection meds like my life depends on it BECAUSE IT DOES!!

[Simon Dog]

I'm not sure I understand what you're saying, Simon Dog.  Could you try to reword it?  I don't know anything about the "old EPTS kidneys."  Also, do you mean "mating" or matching?

I mis-spoke, I meant "old ECD" kidney (and have corrected my previous post)

Yes, I meant "mating".

Mating and transplants have one thing in common - the higher you set your standards, the longer you wait, and the greater chance you will never find a mate (or a kidney).   Fortunately, my wife realized this, and eventually lowered her standards which is how I avoided ending up alone.  Perhaps that makes me an extended criteria husband.  Similar games - multiple people in the marketplace competing for a product, and not everyone can get a low scoring KDPI kidney, just as not everyone can find a high quality mate.

Does Expanded Criteria Donors (ECD) include higher risk donors?

There are several separate dimensions to donated kidney:
- KDPI score
- CMV + or - (irrelevant if you are CMV +)
- High risk pool Yes or No.  (it is possible to have a greate  KDPI from the high risk pool, as this is measured separately)
   - The transplant surgeon tells me that this risk is very very minimal, particularly since nucleic acid testing detects HIV well before seroconversion, and significantly reduces the chances of infection compared to the older western blot test (see http://www.hivguidelines.org/wp-content/uploads/characteristics-of-hiv-tests-posted-01-03-2011.pdf)

You are NOT truly living if you need a machine to keep you alive!

I disagree.   I have a great life.    I work up next to a great little dog today; played with two dogs; did a metric s-load of useful stuff for my family today; caught up on some volunteer work I am doing for a couple of different 501(c)(3) orgs; and even had a great lunch.   I have scheduled 3.5 hours of phone, internet, and hulu/Netflix relaxation tonight to while away the time while I dialyze.    I'm also spending time leaning on an Indian programming team so I can be ready for a trip I have scheduled to Seattle to finish the project.   As I said in the  bio I did for an upcoming clinic newsletter "dialsys sucks but life on dialysis does not have to".

was balanced by the fact the he could cure me (or control) of anything I might catch from it

Sure, Hep-C can be cured if you can afford Harvoni or get it insurance approved ($95K for the pills), and HIV can be "managed".  I was shocked, shocked I tell you, at how dismissive the transplant MD was of HIV - as if it was not even a big deal.

[kickingandscreaming]

Thank you, Simon Dog, for elaborating.

I too woke up next to a wonderful dog, but then was essentially "tethered" to my PD regime for the rest of the day which now demands I interrupt whatever I am doing every 3 hours,  Hard to get into the Flow with that kind of rhythm.  Hard to go out and do lots of things when I turn into a pumpkin at the stroke of 3 hours. At least I'm due to FINALLY get a cycler early in May. So that, hopefully, will improve matters.

[Simon Dog]

At least I'm due to FINALLY get a cycler early in May. So that, hopefully, will improve matters.

It will.

[DialysisGoneFOREVER]

Simondog, that may be true but wouldn't life be MUCH better if your life didn't depend on a damn machine? Imagine if you had a kidney in you that freed you from being a SLAVE to a machine?

Kicking&screaming, I was on a cycler for 4 years and it has MAJOR problems. It was 11 hours a night for me! It can beep in the middle of the night waking you up! Your PD catheter can move or "float" away then the dialysis doesn't work! Then you must have surgery to fix it!

Dialysis is SLAVERY any way you look at it! Try your VERY best to keep your kidney(s) healthy or get a transplant because having your life depend on a machine is not worth it to me!!

[Simon Dog]

GoneForever- you are absolutely right, but I think of it as as job rather than slavery.  My pay is a day or two of life per treatment.   And yes, it is a huge hassle.    My point is that life is not on hold while on D, nor does it cease to be worth living.   It that was the case, I would run the bloodline into my bathtub, open the clamps, and be done with it forever  - but that is not on my agenda.

[Vt Big Rig]

I have to agree with Simon Dog.

Dialysis sucks ... but it keeps me alive.

Alive to talk and live with my wife of 41 years.
Alive to enjoy my grandchildren, alive to getting prepared to retire in three weeks and move back to near my grandchildren.
Alive to do most of the things I like to do.
We do NxStage at home and other than planning and bringing supplies it has not had any devastating  impact on my life. Has it caused issues with my week long back country hunting trips .. yes; but  I was getting kind of old for those anyway. My biggest problem I think is that my wife has to plan like crazy to go on a trip by herself, and then she feels guilty sending me to a center. She is pretty possessive about my fistula.

Do I get tired of chair time, yes...... but I try to plan it around a little reading, a little TV, and phone calls to friends.

Like always, life is what you make it ...... I make the best adjustments I can and carry on!!

[Blake nighsonger]

 dialysis is the fringe benefits of life,the part time job I never had and always wanted, going home every night. Knocked the chip right off my shoulder......now i'm proud to be humble.     

[Blake nighsonger]

To enhance this image of a humbled proud dialysis patient I would like to add that pre tx. Evaluation process was a explanation of choice I had of picking the cadaver kidney of my choice I surmised with my limited knowledge of the propose types of donations, it's any Wounder looking back that when I said no to older type and addict type the nephrology doctor asking the questions frowned at me . Well as I didn't comprehend at the time what it all signified I just answers with out really understanding at all. Think he went heaved and marked what he thought best for me bless his heart.

Anyway I'm going to be able to ask my Tx. coordinator about what is marked down as my choice or limitation type referred at beginnig of the transplant process . Thank you so glad someone here can explain things in a way that canulates my dialysis access (sticks.)