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Author Topic: Extended protocol transplants  (Read 17591 times)
NickL
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« on: February 06, 2007, 08:25:31 AM »

Just putting this out there.Extended protocol transplants are done with kidneys which would normally have been rejected for use. There are from donors who are > 50yrs old and or had blood pressure problems, diabetic pblms etc. but are still considered viable for use by parameters which i think vary according to surgeon. This type of txp has been used in Japan for years . If any of you have signed the form saying you will accept one of these kidneys (you might not be aware you did or forgot as the time goes by) you should be aware of certain things. First, you will not be told it's an extended protocol kidney until you are about to sign the pre op waiver saying you'll accept the risk of this type of transplant. So when you get the call that they have a kidney for you - ask. Otherwise you will find out as I did after waiting 36 hours from the moment i got the call ,until right before i was to go to surgery. At which point it's pretty hard to walk away - even though everyone says you can. Also find out how long that kidney was on ice because that will directly effect it's viability in the long run  - even if everything else goes perfectly. I just went through this process and believe me when i tell you that coming back from rejected kidneys ( in my case I had a double transplant - the thinking i guess is that 2 somewhat compromised kidneys would equal one good one) is a long row to hoe. If it's any indication I was glad to be back on dialysis. So be warned, and be aware






EDITED: Moved To Proper Topic - Sluff, Moderator





« Last Edit: February 06, 2007, 04:29:57 PM by sluff » Logged
angieskidney
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« Reply #1 on: February 06, 2007, 08:33:41 AM »

wow thanks for that post!  :thx; :2thumbsup;
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angela515
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« Reply #2 on: February 06, 2007, 08:56:40 AM »

I know all about this type of Transplant. My surgeon told me about it during my eval... and he told me because I am so young he will not allow me to even be on that list, even if I had wanted too, which I wouldnt at this age.
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« Reply #3 on: February 06, 2007, 09:42:45 AM »

I was also informed of this. I guess it is fine for some people; I just want the best kidney I can get. Maybe I will feel different as time goes on.  Thanks for sharing the information.
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Zach
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« Reply #4 on: February 06, 2007, 10:07:34 AM »

Thanks NickL, for speaking truth to power!

The Renalist.     8)
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
angieskidney
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« Reply #5 on: February 06, 2007, 03:16:16 PM »

I know all about this type of Transplant. My surgeon told me about it during my eval... and he told me because I am so young he will not allow me to even be on that list, even if I had wanted too, which I wouldnt at this age.
Are these then used for the elderly who might die from old age before the kidney fails?
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diagnosed ESRD 1982
PD 2/90 - 4/90, 5/02 - 6/05
Transplant 4/11/90
Hemo 7/05-present (Inclinic Fres. 2008k 3x/wk MWF)
angela515
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« Reply #6 on: February 07, 2007, 07:53:13 PM »

Yah
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Zach
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« Reply #7 on: February 07, 2007, 08:13:06 PM »

These kidneys are being transplanted in patients as young as in their forties.  I don't think someone in their forties is considered elderly. 
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
angela515
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« Reply #8 on: February 07, 2007, 08:40:36 PM »

Its suposed to be for elderly ppl, or ppl who have other medical issues who have a hard time getting a transplant... I would never except one myself unless i was over 60 and needed one.
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angieskidney
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« Reply #9 on: February 07, 2007, 09:03:49 PM »

and I was thinking even older than 60 :P
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diagnosed ESRD 1982
PD 2/90 - 4/90, 5/02 - 6/05
Transplant 4/11/90
Hemo 7/05-present (Inclinic Fres. 2008k 3x/wk MWF)
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« Reply #10 on: February 07, 2007, 09:08:05 PM »

lol i plan on being dead before im too old...  :P
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« Reply #11 on: February 08, 2007, 04:47:13 AM »

It's amazing the younger you are you think you'll die young but the older you get you start thinking you'll live forever.

I personally would not go through a surgery after a certain age because I believe when it's my time to go it is natural selection. Now speaking of age..maybe thats typical thinking for my age category.

Like everyone else I may change my mind if I was faced with the issue.
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angela515
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« Reply #12 on: February 08, 2007, 06:01:36 AM »

Oh, I don't think I will die young, however I will not allow myself to be too old and have to live in a nursing home or be wheeled to dialysis and not really know whats going on.. if I EVER get like that, I will stop dialysis, or make sure someone stops it for me if I dont know whats happening... that's just not living to me.
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Live Donor Transplant From My Mom 12/14/1999
Perfect Match (6 of 6) Cadaver Transplant On 1/14/2007
Zach
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« Reply #13 on: February 08, 2007, 08:35:56 AM »

Its suposed to be for elderly ppl, or ppl who have other medical issues who have a hard time getting a transplant...

I'm sorry Angela, that's not correct.

The protocol today is being used on patients in their mid-forties and older ... not just elderly or patients with other medical issues.

So for those of us "young enough" to have this pushed on us, we need to be aware of the problems associated with these kidneys.  Luckily, we still have a say.
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
angela515
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« Reply #14 on: February 08, 2007, 11:34:56 AM »

I corrected myself already, I said *I* personally wouldnt take one of those kidneys unless I was over 60.
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Jill D.
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« Reply #15 on: February 08, 2007, 12:56:08 PM »

This is very interesting information. It sure doesn't seem right to transplant these kidneys into anyone who is relatively "healthy" and still in their 40's! Thanks Nick...sorry you had to go through something like that.
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« Reply #16 on: February 08, 2007, 01:22:32 PM »

This is from an article: They said that the organs, called extended-criteria kidneys, can be suitable for older patients
who are at greater risk of dying while on dialysis, whose expected lifespans are shorter, and whose numbers on waiting
lists are growing. Surgeons are also offering them to patients who do not respond well to dialysis.


The article can be read in it's entirety here: http://www.boston.com/yourlife/health/diseases/articles/2005/06/05/transplant_plan_eases_wait_with_imperfect_organs/

We were offered this option for Jenna, as they offer it to all their patient's at Scripps, but we were also advised NOT to
accept the offer as the surgeon does not recommend this type of solution to someone Jenna's age.

I am amazed that anyone would offer or consider this for a patient under 65, but obviously it has happened.
I am so sorry you had to go through what you experienced!


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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
Zach
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"Still crazy after all these years."

« Reply #17 on: February 08, 2007, 10:06:03 PM »

I am amazed that anyone would offer or consider this for a patient under 65, but obviously it has happened.
I am so sorry you had to go through what you experienced!

Folks, this is becoming policy around the country --for a person in their mid-forties to be encouraged to accept these kidney's.

And the very fact that someone actually "offered" this option to Jenna is disturbing--a 21 year old.  Had you not been as informed as you are, and perhaps from the "wrong side of the tracks," what would the outcome have been?     :'(
« Last Edit: February 08, 2007, 10:25:42 PM by Zach » Logged

Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #18 on: February 08, 2007, 10:26:52 PM »

I am amazed that anyone would offer or consider this for a patient under 65, but obviously it has happened.
I am so sorry you had to go through what you experienced!

Folks, this is becoming policy around the country --for a person in their mid-forties to be encouraged to accept these kidney's.

And the very fact that someone actually "offered" this option to Jenna is disturbing.  Had you not been as informed as you are, and perhaps from the "wrong side of the tracks," what would the outcome have been?     :'(

I really doubt that it's becoming routine to encourage use of these kidneys if it would be a bad choice, whatever the patient's age.
The transplant centers have to offer them to everyone as it would be discrimination not to give the patient every option available.
They did stress to us that it was not an option they would recommend for Jenna, they were very clear and adamant
about that.
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
angieskidney
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« Reply #19 on: February 08, 2007, 10:33:20 PM »

They did stress to us that it was not an option they would recommend for Jenna, they were very clear and adamant
about that.
Well that is good to know!
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FREE Donor List for all Kidney Patients!

diagnosed ESRD 1982
PD 2/90 - 4/90, 5/02 - 6/05
Transplant 4/11/90
Hemo 7/05-present (Inclinic Fres. 2008k 3x/wk MWF)
Rerun
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« Reply #20 on: February 09, 2007, 02:52:21 AM »

Just putting this out there.Extended protocol transplants are done with kidneys which would normally have been rejected for use. There are from donors who are > 50yrs old and or had blood pressure problems, diabetic pblms etc. but are still considered viable for use by parameters which i think vary according to surgeon. This type of txp has been used in Japan for years . If any of you have signed the form saying you will accept one of these kidneys (you might not be aware you did or forgot as the time goes by) you should be aware of certain things. First, you will not be told it's an extended protocol kidney until you are about to sign the pre op waiver saying you'll accept the risk of this type of transplant. So when you get the call that they have a kidney for you - ask. Otherwise you will find out as I did after waiting 36 hours from the moment i got the call ,until right before i was to go to surgery. At which point it's pretty hard to walk away - even though everyone says you can. Also find out how long that kidney was on ice because that will directly effect it's viability in the long run  - even if everything else goes perfectly. I just went through this process and believe me when i tell you that coming back from rejected kidneys ( in my case I had a double transplant - the thinking i guess is that 2 somewhat compromised kidneys would equal one good one) is a long row to hoe. If it's any indication I was glad to be back on dialysis. So be warned, and be aware

What exactly happened?  What was the rejection from?  I'm so sorry it happened to you, but please explain more to us.
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renal30yrs
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« Reply #21 on: February 09, 2007, 03:53:13 AM »

Most transplant canters are required to obtain a consent from the patient to accept extended protocol kidneys.
I received the letter few years ago and answered no thanks.
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angela515
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« Reply #22 on: February 09, 2007, 07:19:38 AM »

Most transplant canters are required to obtain a consent from the patient to accept extended protocol kidneys.
I received the letter few years ago and answered no thanks.

All centers are required to get your consent... it's the law I believe, or at least UNOS rules... dunno which.
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« Reply #23 on: February 09, 2007, 08:39:09 AM »

Well, before I say "no" to old kidneys I would like to know why NickL's transplanted kidneys failed.  There should be nothing wrong with a 60 year old kidney.  It should last 20 years. 
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angela515
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« Reply #24 on: February 09, 2007, 08:48:10 AM »

No, they shouldn't last 20 years.... and Extended Protocol Kidneys, usually have other medical issues such as high blood pressure, diabetes, ect.... Im not sure if this was the case in this persons experience, but thats why these kidneys are usually in this catergory.
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Live Donor Transplant From My Mom 12/14/1999
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