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Author Topic: Almost got a kidney today  (Read 4450 times)
aintnorock
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« on: February 05, 2009, 01:14:18 PM »

I was called yesterday and told that I was 4th in line for 2 kidneys, and that I needed to go to the hospital ASAP.  The ASAP wasn't that necessary.  After they drew some blood and a short physical with a doctor, all I did was wait - for the next 18 hours.  I was told at 7:15 am that I was getting the kidney, and then told at 7:30, they had just found out that the kidney wasn't viable.

I have a couple questions - am I going to have to wait 18 hours to find something out every time I get called?

Why did they just find out the kidney wasn't viable?  I thought that they had already been testing it?

I was told that my antibody number was 0% and that this was good.  I was also told by the doctor that the first 3 candidates had high antibody counts. Can anyone explain antibodies to me?

Can anyone explain the matching process, in English?


Thanks for your help.


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Wenchie58
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« Reply #1 on: February 05, 2009, 01:41:35 PM »


  I don't think the hours of waiting is typical, but I could be wrong.  I can only speak of my experience.  I got my "call" at 5:30 am...arrived at the hospital at 8:00 am, was prepped and in surgery at 11:30 am.

  Sorry this trip didn't work out for you, but at least...one thing to keep in mind...you're on their radar..topping the list.  My thoughts are with you.
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Live your life in such a way that when your feet hit the floor in the morning Satan shudders and says "Oh s**t, she's awake!"

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« Reply #2 on: February 05, 2009, 01:59:40 PM »

It isn't unusual to be called several times or to wait some (maybe not 18 hours).  Several people are always called so everything is in place.  You are very fortunate that your antibodies are low. It will help in getting a good match.  The waiting is hard, but it has to be good to know you are at the top and it won't be long before you have that new kidney.   We will be waiting to hear when you do get the next call  :2thumbsup;
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monrein
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« Reply #3 on: February 05, 2009, 02:30:24 PM »

I was called yesterday and told that I was 4th in line for 2 kidneys, and that I needed to go to the hospital ASAP.  The ASAP wasn't that necessary.  After they drew some blood and a short physical with a doctor, all I did was wait - for the next 18 hours.  I was told at 7:15 am that I was getting the kidney, and then told at 7:30, they had just found out that the kidney wasn't viable.

I have a couple questions - am I going to have to wait 18 hours to find something out every time I get called?

Why did they just find out the kidney wasn't viable?  I thought that they had already been testing it?

I was told that my antibody number was 0% and that this was good.  I was also told by the doctor that the first 3 candidates had high antibody counts. Can anyone explain antibodies to me?

Can anyone explain the matching process, in English?






Thanks for your help.




I can't tell you anything about the process of waiting and testing.  I live in Canada and when I got a cadaver kidney, I was the only one called, they knew already it was a perfect match and they installed it in me just 6 hours after I was called.  That was in 1985.

Antibodies are created by us in the blood and a high antibody count means that your body will react badly to a transplanted organ, recognizing it as a foreign object and trying to attack it and get rid of it.  People with high antibodies often have had pregnancies or blood transfusions or transplants and so their bodies have built up antibodies as a way of protecting itself.  Not a bad thing really but not good for receiving a transplant since acceptance not battle mode is what's needed at that time.  Often they give a percentage number for antibodies, so 96% PRA (panel reactive antigens) means that person's body will have strong reactions to 96% of potential transplants.  0% is a lovely number to have and it's my number too.  We should both feel very fortunate.

The first thing that has to match is blood type.  Negative or positive makes no difference for a transplant but is important for receiving blood.
Next are the antigens.  We each have three from each parent and so a six antigen match is perfect but nowadays with the modern anti-rejection drugs even a zero point match is still OK especially with 0 antibodies.
If the choice is between a six point match and a 0 point match, 6 is better but once it's not a 5 or 6, it doesn't amount to a significant difference.  My upcoming transplant is a zero point match but my doctors think that's not an issue.

Hope that helps and doesn't confuse further.  Hope you get called again soon and good luck.

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Pyelonephritis (began at 8 mos old)
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« Reply #4 on: February 05, 2009, 03:39:13 PM »


The donor is on life support and sometimes they need to wait until family can gather to say good bye. Sometimes the spouse or others just need more time before life support is ended.
Our transplant hospital called 7 people for each organ. It takes time to test one, then another, wait for results, test another, wait some more. Any number of circumstances can delay the actual transplant.
I am sorry it didn't work out for you, but the good news is that now you know you're on the radar and given the right tissue match you will no doubt be getting a kidney sooner than later. Good luck!
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« Reply #5 on: February 05, 2009, 04:12:07 PM »

My Marvin has had eight "stand by" calls over the last 14 years.  The shortest wait was about 3 hours, and the longest was about 15 hours.  None of them worked out for Marvin ... but, we're still waiting for the next call.  Marvin says, "Some call -- even if it doesn't work out -- is better than no call at all."
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kellyt
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« Reply #6 on: February 05, 2009, 05:01:21 PM »

I don't have an answer, but at least you know you're at the top of "the list"!   That's wonderful news!  Keep your cell phone charged and with you at all times!   :cheer:
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
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« Reply #7 on: February 05, 2009, 11:13:38 PM »

Once the hospital gets the organ, the surgeon must also inspect it to make sure it's viable. When they say viable, they aren't referring to blood testing. They actually do a physical inspection to check the veins and arteries and to make sure there are no other physical problems with the kidney. Sometimes they get rejected by the surgeon for one reason or another.
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monrein
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« Reply #8 on: February 06, 2009, 05:05:04 AM »

Once the hospital gets the organ, the surgeon must also inspect it to make sure it's viable. When they say viable, they aren't referring to blood testing. They actually do a physical inspection to check the veins and arteries and to make sure there are no other physical problems with the kidney. Sometimes they get rejected by the surgeon for one reason or another.

Exactly right, and better to have wasted time than have a defective kidney installed.  You already have two that aren't viable, who needs a third?
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
deafman
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« Reply #9 on: February 06, 2009, 05:23:35 AM »

Don't you just find that annoying.

I wonder if they do this in Australia, because when I had a transplant I was called by my hospital at 2.am in the morning and they had to arrange for me to be flown across the country so I could have the transplant. 

I would had hated it if that had happened to me and that I had flown across the country to find that the kidney was not suitable.

Hope you have better luck next time.

deafman
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aintnorock
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« Reply #10 on: February 06, 2009, 02:03:06 PM »

Thanks everyone for the responses.  Hopefully next time will be a real go.
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kellyt
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« Reply #11 on: February 06, 2009, 02:29:23 PM »

Plus, sometimes they have to "transport" the kidney from another city or somewhere.  Something could happen in the transport, right?  When I admitted for my live donor transplant I wasn't able to meet my surgeon that day because he was in El Paso (I think) picking up a liver.
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
willieandwinnie
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« Reply #12 on: February 06, 2009, 02:58:24 PM »

aintnorock, My hubby received his call at 2:30 am on 9/6/07 and we were told to be at the hospital at 8 am (we are 2 hours away), get to the hospital and there was a delay in Texas. The donor had no next of kin and they had to wait for the girlfriend to make the decisions. At 1pm on the 6th, hubby had dailysis and transplant surgeon came and said that the kidneys are the last to be procured because they can survive the longest. At 7am on the 7th the surgeon said they were trying to find a corporate sponsor to fly the kidney to DC (bless Virgin Atlantic), the kidney arrived at Washington Hopital Center at noon and a final cross match was done and the donated kidney checked. Finally took hubby to the OR at 1pm. 34 of the longest hours I have ever spent. I was told that there are many reasons for delays and from loved ones saying goodbye to weather events on either end. Hang in there and know that now you are at the top of the list or pretty close to it. By the way, 1 month after hubbies transplant he received another call from UNOS and I had to ask the lady if they knew what they were doing. I thought it was funny at the time.  :cuddle;
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aintnorock
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« Reply #13 on: February 06, 2009, 08:58:11 PM »

aintnorock, My hubby received his call at 2:30 am on 9/6/07 and we were told to be at the hospital at 8 am (we are 2 hours away), get to the hospital and there was a delay in Texas. The donor had no next of kin and they had to wait for the girlfriend to make the decisions. At 1pm on the 6th, hubby had dailysis and transplant surgeon came and said that the kidneys are the last to be procured because they can survive the longest. At 7am on the 7th the surgeon said they were trying to find a corporate sponsor to fly the kidney to DC (bless Virgin Atlantic), the kidney arrived at Washington Hopital Center at noon and a final cross match was done and the donated kidney checked. Finally took hubby to the OR at 1pm. 34 of the longest hours I have ever spent. I was told that there are many reasons for delays and from loved ones saying goodbye to weather events on either end. Hang in there and know that now you are at the top of the list or pretty close to it. By the way, 1 month after hubbies transplant he received another call from UNOS and I had to ask the lady if they knew what they were doing. I thought it was funny at the time.  :cuddle;

If the kidney was someplace else, I could understand the delay, but we were told that the kidney was actually in the city already.  It couldn't have been far if they had my surgery scheduled for 1 hour later.

Oh well, I'm near the top of the list.  Maybe next time.  Glad your husband got a kidney.

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