| Author |
Message |
grace
Member
Username: Graceb
Post Number: 1
Registered: 02-2012
| | Posted on Tuesday, February 28, 2012 - 12:46 pm: | 
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Hi all,
The transplant committee met on Friday, but no phone call thus far. Just wondering if that is a sign one way or another. If they decide to list you, do they generally call you to inform you of their decision? Or do they generally inform you by mail? Just wondering if the lack of a call is a sign of anything or not....the waiting is hard!
Thank you for sharing your experience!
Grace |
Sarah
Member
Username: Sarahbear
Post Number: 188
Registered: 06-2009
| | Posted on Tuesday, February 28, 2012 - 01:15 pm: |
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I received a letter in the mail, but my coordinator was less than helpful, so I never expected her to call me for anything.
Sarah
1st Kidney Transplant @ Vanderbilt Medical Center in Nashville
June 22, 1999
2nd Kidney Transplant @ Piedmont Hospital in Atlanta
June 18, 2010 |
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sssteph
Member
Username: Sssteph
Post Number: 4
Registered: 12-2011
| | Posted on Tuesday, February 28, 2012 - 02:14 pm: |
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I was at an appt with my Neph. and she informed me that they would be listing me in the next few days. I then received a letter a few weeks later saying that I was listed. I never really had that "waiting" feeling, because I was constantly reassured/informed of where I was in the process and that there was no reason I would not be listed. But is was one of those milestone days! Hang in there and hopefully you will hear soon! |
Rita
Forum Leader
Username: Rita
Post Number: 867
Registered: 06-2003
| | Posted on Tuesday, February 28, 2012 - 04:01 pm: |
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The transplant coordinator emailed me. Then I received a letter in the mail. I do know that when you get all your testing done after that they have some sort of meeting on you and then from their a decision is made on placing you on the list. I think it took her a week or two to call me after the meeting. Then you have to have monthly labs so that they can use your blood to do cross matching for possible kidney matching. My suggestion is to call and leave a message for your transplant coordinator, if possible get his or her email address so that in the future if you have pressing questions you can email him or her directly. Wishing you the best.
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Rita
Forum Leader
Username: Rita
Post Number: 868
Registered: 06-2003
| | Posted on Tuesday, February 28, 2012 - 04:02 pm: |
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PS Grace Welcome to transplantbuddies!!!!!!!
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bill s
Member
Username: Bill_s
Post Number: 107
Registered: 08-2011
| | Posted on Tuesday, February 28, 2012 - 04:16 pm: |
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This is weird - I thought the waiting process was the same for everyone. In No. Calif when your creat reaches 4.0, your nephro automatically puts you on the waiting list and he told me that depending on various circumstances my wait would normally be 6-8 years and the local kidney transplant center sent me blood tests by mail periodically to ensure that I am up to date and they may have performed some physical/xray etc., exams to ensure I was qualified to get a kidney. As the yrs passed, my nephr would just say the list is still long. In my case, the local transplant center notified my doctor and sent me a letter that they had made a change in their operating rules and that suspect kidneys would now be made available to me. My nephr told me that I was still 18-24 mos away from a kidney but that if I went on this new list I would be near the top of the list. Being 74, I jumped at it and they started giving me the physicals, blood tests, etc., they required for me to get the transplant - this was in Nov '10 to Jan '11 (5-6 yrs after first getting on the list). They told me to be ready at any time and I got the call in Feb '11. |
sssteph
Member
Username: Sssteph
Post Number: 5
Registered: 12-2011
| | Posted on Tuesday, February 28, 2012 - 05:53 pm: |
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For me the longest period was the year it took to go through the extensive testing: cardio tests, untrasounds/sonograms on very part of my body, blood tests, dental exam, gyno exam, etc and interviews with the transplant team, social worker, heart dr, transplant nephrologist, etc. they also had to get clearance from insurance (which was a fight in itself) Then once I was done with all that, they had a round table discussion about my case and a few weeks later I was listed. I also had to submit monthly blood antibody tests and saw my neph every 3 months. I was only on the list for 6 months, after 2 backup calls, and then the third back up call, which turned into my time. Dont remember what my creatinine was before transplant, but I had 17% working kidneys. I was given a kidney and pancreas on 9/13/11. I was told the average wait for just kidney was 4-5 years, but for a kp it was an average of a year to 18 months. I was put on a list for an isolated kidney and on a list for kidney/pancreas. Once i was listed I was told that I was 3rd on the list at my hospital for a kp with my blood type.
Kidney/Pancreas 9/13/11
Scripps Green Hospital, La Jolla CA
"Dream like you will live forever,
Live like you only have today"-unknown |
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grace
Member
Username: Graceb
Post Number: 2
Registered: 02-2012
| | Posted on Tuesday, February 28, 2012 - 07:16 pm: |
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Thanks everyone for your experience. My brother is the one waiting for the call or letter. Things were going smoothly until a complication occurred during his heart cath procedure requiring a stent in his right iliac artery. Hoping it is in a location that will still allow use of the right iliac and left iliac arteries (for grafting of the donor kidney and for the donor pancreas). If not, I am unsure how the surgeon might deal with the situation since he must need two arterial hook-ups for the 2 organs. Of course, I am not a surgeon and have only been able to glean information here and there. Hoping it is still doable. |
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