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Author Topic: When the call comes.... What questions do I ask?  (Read 23491 times)
Wattle
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« on: February 21, 2007, 12:50:11 AM »

 
 :urcrazy;   I am waiting for a transplant on the cadaver list, like many of you are. Some days it totally consumes me and I can think of nothing else. "where will I be" "what do I take" blah blah blah     :urcrazy; :urcrazy;

I have also started to question what kind of kidney am I going to be offered. I would be grateful if you could give me some suggestions of the questions I should ask, if and when "the call" comes.  :P    Should I knock one back? Under what circumstances? Do I do a drug trial?

I know I will lose my head   :urcrazy;  so maybe having a list of my own ready is a good idea.

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PKD
June 2005 Commenced PD Dialysis
July 13th 2009 Cadaveric 5/6 Antigen Match Transplant from my Special Angel
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« Reply #1 on: February 21, 2007, 09:52:34 AM »

When I was first listed, I thought I should get my life in order and be ready whenever the "call" came.  Now, I don't even think about it. I keep my cell phone with me; I let the transplant co-ordinator know if I am going out of town - but for the most part, I just don't think about it.  It can consume you every thought and that will wear you out.  Ask questions, feel prepared and then go on living.    You always post good questions - makes everyone think!
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« Reply #2 on: February 21, 2007, 11:48:22 AM »

There's a post on here with a list of things you should know.  It's in this topic about extended protocol transplants
http://ihatedialysis.com/forum/index.php?topic=2608.20

If you get the call and they say "we have a kidney for you" your first response would not be "is it from an ECD" - but  after reading this it might.

From the first time I was "on the list" in 1992 and again now in 2007 (no transplant, but different story for another time) it has always been my policy to ask these specific questions about a cadaveric donor, in this order of importance:
1 - antigen match with me
2 - cold time when I am called & location, (i.e. translantes into travel time to get to my hospital)
3 - cause of death
4 - medical history
5 - age

I have them written down so I won't forget anything. The way I look at it, when I am given medication, whether IV or by mouth, I want to know the name, the dosage, interactions and possible side effects. Why would I accept anything less when someone wants to put an actual ORGAN in my body? I think, that as recipients, we must bear the responsibility of informing ourselves and FORCING our medical providers to inform us. I was burned too many times in the beginning of my ESRD experience to ever expect that anyone will fully inform me unless I make them.


After reading the other post, I think I would add Hep B status, EBV status and CMV status. (Does it match your own?)
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Wattle
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« Reply #3 on: February 21, 2007, 01:46:55 PM »

There's a post on here with a list of things you should know.  It's in this topic about extended protocol transplants
http://ihatedialysis.com/forum/index.php?topic=2608.20

If you get the call and they say "we have a kidney for you" your first response would not be "is it from an ECD" - but  after reading this it might.

From the first time I was "on the list" in 1992 and again now in 2007 (no transplant, but different story for another time) it has always been my policy to ask these specific questions about a cadaveric donor, in this order of importance:
1 - antigen match with me
2 - cold time when I am called & location, (i.e. translantes into travel time to get to my hospital)
3 - cause of death
4 - medical history
5 - age

I have them written down so I won't forget anything. The way I look at it, when I am given medication, whether IV or by mouth, I want to know the name, the dosage, interactions and possible side effects. Why would I accept anything less when someone wants to put an actual ORGAN in my body? I think, that as recipients, we must bear the responsibility of informing ourselves and FORCING our medical providers to inform us. I was burned too many times in the beginning of my ESRD experience to ever expect that anyone will fully inform me unless I make them.


After reading the other post, I think I would add Hep B status, EBV status and CMV status. (Does it match your own?)

 :P  Thanks Jbeany,

I somehow missed that post  ::) I have now gone back and read the posts. We don't have an ECD list here (well not that I have been told) and I have not signed any consent form. So I assume if I am going to offered one I won't be told until the eleventh hour. I had better have my wits about me and ask ALL the facts upfront!   
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PKD
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« Reply #4 on: February 27, 2007, 01:17:04 PM »

You have to try to not let this drive you nuts because it can very easily.  I also ran the where and what ifs through my mind often and in the end it didn't play out the way I expected.  The best thing you can do is try to stay positive and especially healthy.  Avoid people with contagious illnesses like the plague.  If you have a cold when the call comes there is no transplant.

Knocking one back is a very bad idea.  From the time you are called you can eat or drink nothing, major surgery is right around the corner.  It is a time to be nervous but also very very happy.  You will know that when you wake up there will be no more dialysis.

I had a sense several times that the time was near.  The last time that feeling hit I was two days from the real call and I felt it the strongest in those days right before it.  I had always imagined being away somewhere and having to beat feet to an airport to get back in time for the fun.  Instead we were in the server room installing equipment when the magic call came.

Transplant centers have a really good idea of how to deal with the transplant patient from the moment they call you.  They took care of everything for us including accommodations for my family both during and for a couple of weeks after the transplant.  Just relax and let it happen, it will when you least suspect.
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RichardMEL
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« Reply #5 on: September 24, 2009, 11:56:48 PM »

Thought I would add to this old topic based on the conversation I had with a guy yesterday.

They brought this guy into the unit to take fluid off. It turns out he got a transplant last Friday (hooray!!!  :yahoo;).

So I was talking to him about it and I asked him about when the call was and how it came about. His was sort of funny really. He said he normally gets up around 0400 to go to work, but this day he slept in for unknown reasons, so around 5am his boss called and asked where he was... so he's like "yep, I'm on my way".. so when his phone rang again at 0530 he thought it was the boss giving him grief.. but it was the hospital!

Now what's relevant to this thread is that according to him they basically said "We've got a kidney for you. Come on in" and he wasn't really given any information about the donor or condition of the kidney or anything. He told me he didn't ask questions he just got his ass into gear (can't blame him! he'd been waiting six years!).

Further it turns out he asked post transplant (on Tuesday) any info about the organ and all that they would tell him was that it was from a "fit" donor - no idea of sex, age, if it was an accident or what.

I sort of get the impression that at least here in Australia (and Wattle may like to comment now that she GOT THE CALL!!!) it's really up to the transplant team to accept an organ for you or not.. so you sort of have to trust if they've done any tests like HIV, Hep C and all that. I know I would ask at the very least when I got to the hospital, but who knows if you would be told or not.

I'm not saying I don't trust the team at my hospital to only accept an organ that is a good match for me or anything - it just seems counter to the way the US, for example, does it.

So that was interesting.

Turns out my hospital wound up doing 2 transplants that day, and another yesterday while I was in Dialysis!! That perked me up a bit. I think the universe is trying to tell me to hang in there and WAIT !! lol

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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
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« Reply #6 on: September 25, 2009, 02:50:38 PM »


I think many people in the US would do the same - they wouldn't ask much - they'd just go on in and hope for the best. People on this forum want ALL the info because they are aware that there have been cases where full disclosure might have influenced the decision on whether or not to accept an organ.

Richard - I keep watching for the day you post "I am on the road to transplant!"  :2thumbsup;
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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
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« Reply #7 on: September 25, 2009, 05:36:08 PM »

When I was first listed, I thought I should get my life in order and be ready whenever the "call" came.  Now, I don't even think about it. I keep my cell phone with me; I let the transplant co-ordinator know if I am going out of town - but for the most part, I just don't think about it.  It can consume you every thought and that will wear you out.  Ask questions, feel prepared and then go on living.    You always post good questions - makes everyone think!

YES!  and we were only activated for a month!  (on the list just over 9 months).
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Logan had PD cath, g-tube, and mediport placement at 4 1/2 months-- 7/2008
started PD at 5 1/2 months--8/2008
Listed--12/2008--inactive
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Cadaveric Kidney Transplant 9/4/2009 (18 months old)!!!!!
RichardMEL
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« Reply #8 on: September 26, 2009, 06:24:12 AM »


I think many people in the US would do the same - they wouldn't ask much - they'd just go on in and hope for the best. People on this forum want ALL the info because they are aware that there have been cases where full disclosure might have influenced the decision on whether or not to accept an organ.

Richard - I keep watching for the day you post "I am on the road to transplant!"  :2thumbsup;

Thanks Karol!!! :) I will do my best to keep IHD informed!

It won't be a long road though - I live right across the road from the hospital. my bedroom window looks over at it (yeah, great view - NOT!!)  :rofl;

as an aside I understand all 3 transplants done are doing well.. and that's the best news ever!!!!  :yahoo; :yahoo; :yahoo;
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
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« Reply #9 on: January 19, 2011, 06:23:54 PM »

I know there's another thread somewhere started by Zach, but I cannot find it.
Adding to what's been mentioned below:

1 - What is the antigen match with me? (also ask about the antibody match)
2 - What is the cold time when I am called & location? (i.e. translates into travel time to get to my hospital)
3 - Cause of death?
4 - Donor's medical history?
5 - Donor's Age?
6 - Is this a ECD - Extended Criteria Donor? (if you have agreed to this type of donor)
7 - Has the donor been tested for hepatitis and AIDS?
8 - Is the donor positive for CMV or EBV?
9 - Is there any history of recreational drug use or substance abuse?
10 - Am I the first recipient up or a back up?



« Last Edit: November 09, 2011, 02:22:06 PM by okarol » Logged


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
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« Reply #10 on: January 21, 2011, 05:36:03 PM »

this is very informative. my 1st kidney had EBV mismatch with me. unfortunately being a kid i didn't know to ask now i have to take acyclovir b/c of the EBV.
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Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
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Now Status 7 on the wait list for a liver.
How about another decade of solid health?
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« Reply #11 on: January 21, 2011, 07:03:30 PM »

In Australia they are bound to NOT tell you half of that stuff. I only found out (allegedly, not confirmed) the age and gender of my donor through a bit of hearsay and whispers rather than actually officially asking(which I did) and I was told they couldn't tell me. Indeed later I heard a totally different rundown of the donor (much younger) so I really don't know at this point. I suspect the only way I will find out more is when I write a letter to the family (planned for later this year) and if they feel like responding and telling me more about the wonderful person who, partly, lives on inside me.
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
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« Reply #12 on: January 26, 2011, 05:52:51 PM »

We were told the sex, age, cause of death and creatinine of the donor.  He had been in the hospital for two days and the kidney was coming from out of state.

We were told that the earliest it could happen was 18 hours away, but to be ready to leave they called and that the kidney was on a pump.  Sadly, it crossmatched and we were called after the back up was notified to come in. 

We didn't even ask about antigen match. 
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Girl meets boy with transplant, falls in love and then micromanages her way through the transplant and dialysis industry. Three years, two transplant centers and one NxStage machine later, boy gets a kidney at Johns Hopkins through a paired exchange two months after evaluation.  Donated kidney in June and went back to work after ten days.
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« Reply #13 on: February 02, 2011, 11:16:48 PM »

Thank you, Karol for directing me to this thread. This is exactly the one I was remembering.

 :flower;

Aleta
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Carl transplanted with cadaveric kidney, February 3, 2011. :)
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« Reply #14 on: February 03, 2011, 03:45:38 PM »

I printed the questions out and they lived in my wallet until I needed them!

When the call actually came I was already at the hospital and had to consent without the help of my husband. Totally thrown, out came the questions and I let fly. It was funny as the head of transplants asked if I was a nurse. They don't normally get patients asking about the CMV/EBV status of the donor!

The only way to make an informed decision is to be informed!   ;)
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PKD
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July 13th 2009 Cadaveric 5/6 Antigen Match Transplant from my Special Angel
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« Reply #15 on: February 03, 2011, 05:27:20 PM »

I urge everyone to print these out NOW.

When I read these earlier, I thought that I would get "a round tuit" but never did. OKarol helped me find the thread because my brain wasn't working right in the middle of the night.

Print them out NOW! Do what Wattle did and keep them in your wallet.

 :grouphug;
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
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Carl transplanted with cadaveric kidney, February 3, 2011. :)
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« Reply #16 on: February 05, 2011, 10:13:13 AM »

Will do.....
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In-Center Dialysis   Sept 2009
Nxstage    Feb 2010
Extended Nxstage March 2011

Transplant Sept 2, 2011

  Hello from the Oregon Coast.....

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« Reply #17 on: November 09, 2011, 02:21:02 PM »

 :bump;
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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
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« Reply #18 on: February 05, 2012, 10:10:15 PM »


I think many people in the US would do the same - they wouldn't ask much - they'd just go on in and hope for the best. People on this forum want ALL the info because they are aware that there have been cases where full disclosure might have influenced the decision on whether or not to accept an organ.

Richard - I keep watching for the day you post "I am on the road to transplant!"  :2thumbsup;

I asked!  And they told me.  But then I've been doing this a long time.  And I go to a pretty good transplant clinic!  I also know I am already CMV positive.  I contracted it while in the hospital for 3 months in 2002/2003 after my small intestine ruptured.
« Last Edit: February 05, 2012, 10:41:21 PM by Krisna » Logged

Nov. 1979 - Diagnosed with glomerulonephritis of unknown origin by Dr. Robert
                  Hickman
Dec. 1979 - Diagnosed with Viral Pneumonia
Late Dec. 1979 - Emergency surgery to place a Scribner Shunt in left arm for dialysis
Jan. 1980 - Start hemodialysis until recovered from viral pneumonia
Feb. 27, 1980 - Receive 5 antigen living related transplant from father
Mar. 3, 1987 - PTH removed and part of one placed in left arm.  Fistula also placed in right arm.
Sept. 1988 - Start hemodialysis
Feb. 4, 1989 - Receive 6 antigen perfect match cadaveric transplant
Jan. 1994 - Return to hemodialysis
Oct. 18, 1996 - Receive 6 antigen perfect match cadaveric transplant
Nov. 22, 1996 - Emergency surgery to repair aneurysm to artery in kidney
Dec. 20, 1996 - Emergency surgery to repair aneurysm.  Kidney removed due to infection which has spread down right leg to abt mid thigh.
Apr. 1997 - Arterial bypass surgery to restore arterial blood flow to right leg
July 29, 1998 - Receive 6 antigen perfect match cadaveric transplant
Sept. 6, 2002 - Return to hemodialysis
Dec. 7, 2002 Sm. intestine ruptures while home alone. Still conscious upon arrival at hospital.
Dec. 8. 2002 - Surgery to repair ruptured bowel.  The prognosis is not good.  Surgeon tells family to prepare for the worse.  Spend a week in a coma and 3 months in hospital.  Takes abt a year and a half to completely recover.
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« Reply #19 on: March 27, 2012, 04:11:29 PM »

Just some advice as I just had a transplant on March 1, 2012.  I would have done two things, first pack a go bag for the hospital with whatever you consider essential.  I left a couple of things behind in my rush to get to the hospital.  Secondly, if you have hairy arms or a chest definitively shave those areas.  The constant tape pulling and ripping off hair of body hair had me wishing for a razor.  Especially as they were using just one of my arms as the left arm had the fistula and they want to preserve it.
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CKD due to FSGS 1999
Drop from Stage 4 to Stage 2 ESRD 2000
ESRD 2005
Started Dialysis September 13, 2006
Short Daily Home Hemo March 2009
Back to In-Center Hemo August 2009 (Too Many Hours)
Nocturnal Home Hemo with Remote Viewers  May 2010
Received Transplant March 1, 2012
Transplant Failed in October 2017
Nocturnal Home Hemo with Remote Viewers December 2017
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« Reply #20 on: April 01, 2012, 03:25:35 PM »

I printed the questions out and they lived in my wallet until I needed them!

When the call actually came I was already at the hospital and had to consent without the help of my husband. Totally thrown, out came the questions and I let fly. It was funny as the head of transplants asked if I was a nurse. They don't normally get patients asking about the CMV/EBV status of the donor!

The only way to make an informed decision is to be informed!   ;)

Good idea to keep in your wallet!  :waving;
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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
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« Reply #21 on: April 15, 2012, 02:51:28 PM »

I was shocked when the call came this weekend. I had just been reactivated for two weeks.

Unfortunately the call came as I had just landed for a week's vacation in Florida (I live in Boston). The clinic had told me Florida was ok). I was told it was a good kidney, from a 67 year old woman who had died in in accident. Her creatinine was 1.0. They would do a biopsy, but I was told to get back in. So I hopped on the next flight back (my poor wife broke her ankle on the escalator, but that's another sad story). I got back to Boston, eight hours and $600 later.

After spending the night in the emergency room while they removed the kidney and biopsied it, I was told it was not a good kidney.
This is my first time that I had been offered a kidney. I know I'm near the top of the list now.
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« Reply #22 on: April 15, 2012, 10:45:20 PM »

I was shocked when the call came this weekend. I had just been reactivated for two weeks.

Unfortunately the call came as I had just landed for a week's vacation in Florida (I live in Boston). The clinic had told me Florida was ok). I was told it was a good kidney, from a 67 year old woman who had died in in accident. Her creatinine was 1.0. They would do a biopsy, but I was told to get back in. So I hopped on the next flight back (my poor wife broke her ankle on the escalator, but that's another sad story). I got back to Boston, eight hours and $600 later.

After spending the night in the emergency room while they removed the kidney and biopsied it, I was told it was not a good kidney.
This is my first time that I had been offered a kidney. I know I'm near the top of the list now.

Oh tito, what a story. I am so sorry how it all unfolded. (I hope your wife recovers soon!)
The plus side is that you're on the radar, and hopefully another good match is in your near future.
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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
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« Reply #23 on: September 07, 2012, 07:34:12 PM »

 :bandance;

At my transplant center, they required that I attend a class prior to being placed on the transplant list. In this class they explained everything in detail.
Sadly usually the coordinator that calls you in will probably know very little about the kidney especially if it's from a cadaver. And even worse, medical information is protected and you may not ever find out what some people have suggested you ask. But they are all excellent questions to ask.

However, when I got the call to come in, I was told there were 2 kidneys coming to the hospital and I would get the second kidney as long as it passed inspection once the surgeon received the kidney. At that point after waiting so long, I didn't ask anything and got to the hospital..

I figured it would be best to report to the hospital instead of wasting a lot of time on the phone. I knew I would have plenty of time to ask anything I wanted once I arrived.

My advised would be, don't stress the call, just be prepared. Get a bag packed with whatever you need for several days. I was on PD dialysis when I got the call on June 25, 2012 and wasn't transplanted until around 430pm on June 26th.  If on PD you should ask if you need to bring any dialysis supplies with you.
In the class they told us to bring a 2 day supply, but when they called they said not to bring anything.

Needless to say I was more stressed out once I reached the hospital. I got there at 5pm and was told the kidney would be there at 10pm and by 1030 I should know if the kidney was acceptable for transplant. The nurses only knew that I was scheduled for surgery at 9am the next morning. I was going crazy the next day waiting, I wasn't taken to surgery until 4pm.

But thank God the kidney started working the minute they hooked it up and been going strong ever since.

You may want to speak to your transplant coordinator and find out before hand what information they will share with you about the donor.

The only thing I was told it was from a young person, disease free and it was a healthy kidney. 
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fearless
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« Reply #24 on: September 07, 2012, 09:32:12 PM »

I understand that the antigen match is significant:  what should it be?  What 's the best you can hope/ask/wait for?

What about antibodies?  What would be the exact question you would ask there?

thanks to anybody :-)
 :thx;
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