Your time on "the list"

[kellyt]

For those of you have received "the call", how long were you on "the list"?  For you multi-transplanters I'm talking about your first call.

Also, did your coordinator call you or was it someone else?  I've got to remember to ask my coordinator on Monday who will call, because I'm a screener and I've been answering every call since mid February and I'm sick of it!  I want to go back to screening!  I usually NEVER answer 1/800 numbers or "unavailable" numbers.

[paris]

I haven't gotten THE call, but when my transplant co-ordinator calls for anything, it shows UNC Hospital on caller ID.  They also have my cell phone.  It has been almost 2 1/2 years -- I'm not holding my breath!

[okarol]

Jenna's waittime was 5 to 7 years at the first transplant hospital, never got a call after 3 years.
Second transplant hospital (multiple listed and switched her 3 years of waittime to them) gave her a pager and called after 3 months, again at 5 months. These were back up calls, and someone else got the kidney in each case.
Then we found the living donor and the rest is history.

[Chris]

For those of you have received "the call", how long were you on "the list"?  For you multi-transplanters I'm talking about your first call.

Also, did your coordinator call you or was it someone else?  I've got to remember to ask my coordinator on Monday who will call, because I'm a screener and I've been answering every call since mid February and I'm sick of it!  I want to go back to screening!  I usually NEVER answer 1/800 numbers or "unavailable" numbers.

I'm a little complicated because I was accidentally taken of the list due to someone having the same name. Plus I was on the kidney only list first in November of 99, then switched hospitals after finding out about pancreas were done also. So I was on the k/p tx list in Feb of 2000, then taken off the list for who knows how long until my transplant center called me to ask if I had a transplant already. So for me, I waited 1 year 1 month, but may have been sooner. As for the call,one of the coordinators did call me. I met the coordinators when there was a transplant seminar. And at 2 am in the morning, I'm not screening calls, I answer. The caller ID did show an area code and first three digits I could associate with the transplant center since most of the building started with a 695 - XXXX. I also gave them my cell phone number and they gave me a pager at the time (do they even have that old technology anymore?). With my cell phone, I can program a special ring for numbers that the doctors give me. If they are calling from the same center, but out of a different line, it still tells me such and such is calling while displaying that number. So get a business card from you transplant center, memorize most of the numbers and watch your caller ID or cell phone. It maybe better for you to have your cell phone set as your default number to call so you will never miss the call no matter where you are at. Just leave it plugged in at home at night and on.
Good Luck

[BigSky]

1st transplant got call 6 months on the list.

Still waiting for 2nd.

[lola]

1st call 6 mos. Transplant Center called       Still waiting for 2nd transplant on list 1 year

[boxman55]

On the list for 14 months. No call yet...Boxman

[paddbear0000]

I'm a little complicated because I was accidentally taken of the list due to someone having the same name.

Don't they check other details to make sure they've got the right person?!!

[petey]

The first time Marvin was on "the list," he waited 5 1/2 years -- and then I was FINALLY approved as his living donor (we weren't a good match and I had to do a lot of convincing).  He got five stand-by calls during this time, and each time the kidney went to someone else.  But the number on caller ID showed up at our house as "Duke Hospital."  One of the calls came on his cell, and he just automatically answered it.  Four of the calls came during the day/afternoon hours, and one came at 3 a.m.  This second time, he's been back on "the list" for 4 1/2 years, and he's had three stand-by calls.  Again, the caller ID showed "Duke Hospital."  We're still waiting for the second transplant..... .  The wait is long and hard, and we try not to let it consume our thoughts.  However, every time the phone does ring..............well, you know, our hearts skip a beat because we think, "Just maybe...."


P.S.  And by the way, I argued and argued that when he went back on the list this second time that his "wait time" from the first round should be reinstated because he didn't get his transplant off the list.  We didn't get it!  When he went back on this last time, his time started over at zero.  That sucks!

[Chris]

I'm a little complicated because I was accidentally taken of the list due to someone having the same name.

Don't they check other details to make sure they've got the right person?!!

UNOS or Gift of Hope really screwed up on that one.I do not know how it happened or why. I just know when my transplant center called to ask me if I had indeed gotten a transplant from somewhere else and I said no, that she got it cleared up and I got my transplant afew weeks later.
Someone fell asleep on their job it seems! 

However, it does seemed to have played in my favor in the end sine I have had my transplant 7 years, 3 months, 26 days, not that I'm counting 

[kellyt]

That's both a wonderful and scary story all at the same time, Chris!  Congrats on your working kidney!

I believe - and I'm going to check to be sure on Monday - that they indeed have my home, cell and my husband's cell.  I would never screen a call after midnight!  I do, however, want to screen all the B.S. calls during the day/work hours.  I got more calls from Hilary and Obama.  I hate those kinds of calls - automated crap!  And if Sprint calls me one more time I'll scream!!!!!

"You're eligible for a new phone phone".

"Is it an additional phone or a replacement phone?"

"Additional phone."

"I don't need an additional phone, thanks".

"But think of the savings!!!"

"Huh?"   


Anyhoo, I'm so fresh on "the list" that I'm not expecting "the call" any time soon.  I am just wondering.

[paddbear0000]

That's why we no longer have a land line, just a family plan for our cell phones! No solicitors whatsoever! No telemarketers, no campaigners, nothing but friends, family and those who we give our number to. It's great! And saves a ton of money!

[AlasdairUK]

My 1st kidney was from my dad and took 6 months to go through the required work up.

My second transplant, I was on the list for three and a half years.

[bolta72]

Good topic, I just got on the list and was wondering what the average time was.

[Chris]

That's both a wonderful and scary story all at the same time, Chris!  Congrats on your working kidney!

I believe - and I'm going to check to be sure on Monday - that they indeed have my home, cell and my husband's cell.  I would never screen a call after midnight!  I do, however, want to screen all the B.S. calls during the day/work hours.  I got more calls from Hilary and Obama.  I hate those kinds of calls - automated crap!  And if Sprint calls me one more time I'll scream!!!!!

"You're eligible for a new phone phone".

"Is it an additional phone or a replacement phone?"

"Additional phone."

"I don't need an additional phone, thanks".

"But think of the savings!!!"

"Huh?"   


Anyhoo, I'm so fresh on "the list" that I'm not expecting "the call" any time soon.  I am just wondering.

When you ask about what numbers they have listed for you, ask which number is listed as first contact number. I have not had trouble with solisitors for either land or cell phone lines ever since joing the no call registry list the gov't set up a few years back to combat all the darn solisitation. Unfortunately that doesn't mean it stops campaign solisitation. Luckily I/we haven't had that. Like pb, my cell phone is for family, friends, and docs only. All communication with my docs is thru my cell phone so I never miss anything while I am out and about. So anyone who is having a transplant may want to have their cell phone listed as the primary number to contact if they get the call. That way no worry about screen solisitation or missing a call, also less time for the transplant center to track you down.

[KT0930]

My coordinator told me when I was listed that he would "probably" be the one to call, but it may not show up as his number at work, especially if the call came in the middle of the night. I got one call in December, and it was my coordinator, but it was at about 1:30 a.m., so of course, it wasn't his office number. My second call, when I actually got the kidney, was a different coordinator who worked for the team, and she called my husband's cell phone instead of mine (thankfully, it was at about 9:30 at night, so we were sitting in bed beside each other, anyway).

My advice, don't stop answering the calls...yes, it's frustrating, but it'd be even more frustrating to miss the call! I was on the list for eleven months.

[kellyt]

Yes, I agree.   It's far better to answer the worthless calls than to slip up and miss the most important of the all!  The Mother of all phone calls!  Thanks everyone!

I'm still interested in hearing people's time on "the list".  So keep'em coming!

[Chris]

The is a forum for transplant patients that I sometims visit that you may also want to post your question on. There are different sections for each type of transplant, so post it on the Kidney orum board. It is www.transplantbuddies.org    Some of the information there can be a little stuffy compared to the more laid back family feeling here.
Hope that also helps with your question.