| Author |
Message |
ChuckZ
Forum Leader
Username: Chuckz
Post Number: 1068
Registered: 05-2006
| | Posted on Sunday, January 01, 2012 - 10:29 pm: | 
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A very good friend of mine was put on the kidney transplant list six months ago. Today he got a call from his center saying that there was a possible donor organ and that he was one of three potential recipients. He was told by a surgeon a few hours later that the kidney would not have been good for him. I received a living donation from my sister, so I had no wait and couldn't be much help in answering his concerns.
His questions - How many times did you have a "false alarm"? and - How long was your wait from the first call until your transplant?
I know that every situation is unique and there are many, many factors, but I would appreciate the feedback.
I hope that all of my Transplant Buddies have a very happy and healthy New Year!
God Bless All of You,
Chuck |
Richard Owens
Member
Username: Richardindy
Post Number: 718
Registered: 07-2007
| | Posted on Sunday, January 01, 2012 - 11:51 pm: |
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Chuck,
The question of how many false alarms is persistent and understandable. I heard a transplant coordinator quote an acquaintance who had known of 12 false alarms. (After so many retellings, does this make it a "rumor"?) Because I received one call each for my kidney and liver, I hardly qualify to offer advice to those unfortunate enough to be false called. This is another factor of transplantation that will be eliminated only by having sufficient organs available to satisfy all those who wait. My heart goes out to those wait extraordinarily long times and those who receive false calls.
Richard
Kidney Transplant - Aug 30, 1986 - Type One Diabetes
Liver Transplant - May 15, 2007 - Hepatic Carcinoma due to Hepatitis C |
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Cora
Member
Username: Cora
Post Number: 425
Registered: 06-2007
| | Posted on Monday, January 02, 2012 - 08:45 am: |
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I received a living donation from my cousin, but I was on the waitlist for a pancreas. I had 4 false alarms. I live a distance from the center and in one case I even made the trip, but it was a no go. I hope your friend gets the "real" call soon. Best of luck.
Cora
Dx with T1 in 1966
Kidney tx in Minneapolis 2002
Pancreas tx in 2008 |
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NORM
Member
Username: Kidneyboy
Post Number: 3
Registered: 01-2012
| | Posted on Tuesday, January 17, 2012 - 11:53 pm: |
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Hi,
I had two "dry runs" before I received my kidney in 2000. In both cases though I was prepped for surgery, the pathology of the kidney was bad and I was sent home. I waited about a month, from the first to the transplant and three years of dialysis over all. One small plus was when the eventual day came I had little anxiety left and was "ready" for the operation. Please pass on my best wishes for your friends continued health. |
miocean
Member
Username: Miocean
Post Number: 146
Registered: 07-2010
| | Posted on Wednesday, January 18, 2012 - 12:22 am: |
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I received the first call for a kidney after 5 1/2 years on dialysis and 4 1/2 years on the list. The donor was a two month old baby! There was a person who was called before me and that person received the transplant. I received my transplant 4 months later, but received other calls during that time. I turned down the kidneys because they were from donors with health issues.
When I registered at this center I signed a paper (I found it among my paperwork after my transplant) stating I would accept an "expanded criteria kidney." This was not fully explained to me, at least not that I remember but I was very distressed at the time as the realization I needed a transplant had finally hit home. This is a kidney from a donor who is 60 years or older and/or has health problems like high blood pressure or died of a stroke. One of the kidneys I turned down was from a person 67 years old with 25 years of high blood pressure and died of a stroke. I was not at death's door and waited until a better kidney came along. The one I received was from a 60 year old with no previous health conditions who fell off a ladder, hit his head and died. I was 57 at the time and would have accepted a living donation from a friend who was over 60 but she ended up being unable to donate. I have done extremely well for the 22 months I have had the kidney.
Another center I registered at explained what an expanded criteria kidney was and I signed papers saying no to it. I received a call from them the day I was being transplanted after a 2 1/2 year wait on their list.
There are some things to ask when a call for a kidney comes:
1. What is the creatine level?
2. Are there any previous health conditions?
3. What was the cause of death?
4. Is there scarring? How much?
I don't know if you and find out about the match at the time of the call, I found out later mine was 3/6.
It is also important to understand that several people are called for an organ. I was the 4th of the people called for mine. I asked what happened to the other 4 and was told 2 chickened out and 2 could not be reached.
As disappointing as it is, it is better to find out the kidney is not the right one for you before it is put in you. If you health permits you to go a little while longer and you are not satisfied in the quality of the kidney it is better to wait a little while longer. Once you get the first call, more will come.
I wish your friend the best. Keep us posted.
Diffuse Scleroderma
Kidney Transplant March 11, 2010
St. Barnabas Medical Center, Livingston, NJ |
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HealthEdPro
Member
Username: Healthedpro
Post Number: 1
Registered: 01-2012
| | Posted on Tuesday, January 24, 2012 - 04:35 pm: |
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I am a former transplant coordinator and owner of Health Education Productions, Inc. We specialize in information for candidates getting on the waiting list and living donation. We even discuss post transplant. Some of those questions about false alarms can be answered through our videos but a lot has to do with how well a match, distance, how well the kidney was functioning prior to transplant, antibodies, and so forth. For more information on the waiting list and matching you can go to our website at www.healtheducationproductions.com |
HealthEdPro
Member
Username: Healthedpro
Post Number: 2
Registered: 01-2012
| | Posted on Tuesday, January 24, 2012 - 04:38 pm: |
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I am a former transplant coordinator and owner of Health Education Productions, Inc. We specialize in information for candidates getting on the waiting list and living donation. We even discuss post transplant. Some of those questions about false alarms can be answered through our videos but a lot has to do with how well a match, distance, how well the kidney was functioning prior to transplant, antibodies, and so forth. For more information on the waiting list and matching you can go to our website at www.healtheducationproductions.com |
Brian
Member
Username: Briancurran01
Post Number: 209
Registered: 10-2009
| | Posted on Tuesday, January 24, 2012 - 06:47 pm: |
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Your friend shud be happy he only waited 6 months to get a call i am goin on 25 months and not 1 call.
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Rita
Forum Leader
Username: Rita
Post Number: 838
Registered: 06-2003
| | Posted on Wednesday, January 25, 2012 - 05:47 pm: |
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I waited 4 years on dialysis and did not get a call. Then one day I got a call and they told me to come in and give blood for matching etc. They also told me that they called several other people, if I recall correctly she said 10 people. So that night I got the call to come in for the transplant. 9 other people were passed over for other for various. It is very hard, I understand. 11 people lives were touched that day, I think about that sometimes. I hope your friend does not have to wait to long. Wishing you the best.
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Deb
Member
Username: Deb
Post Number: 420
Registered: 06-2003
| | Posted on Monday, January 30, 2012 - 07:37 pm: |
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I waited 2 years while on dialysis. I had one false call. Plus my brother had match up until our day of the operation and for some reason we did not match at the last moment. I have diabetes one and lupus sle. Everyone was puzzle and said it must had been the lupus being active that change the lab-work. For later on I had gotten really ill due to the lupus and infection and I would had just lost kidney. After my second year of dialysis, I had received my second call for a kidney transplant.
Kidney transplant 6/22/2002
lildeb |
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sparekidney
Member
Username: Sparekidney
Post Number: 1
Registered: 02-2012
| | Posted on Tuesday, February 21, 2012 - 08:45 am: |
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Im willing to sell a kidney if anyone is interested please email seanessex@ymail.com |
Rita
Forum Leader
Username: Rita
Post Number: 858
Registered: 06-2003
| | Posted on Tuesday, February 21, 2012 - 11:26 am: |
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Go away sparekidney. I hope to God you are never in the position where you need something in life as basic as health and someone offers to help you for money. I truly hope you life is surrounded by people who love you and it is not at a price.
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