Question about being put on the list

[paul.karen]

I just got the call.  I was told that i was discussed last Friday and they will put me on the list at the Univ. Of Penn.  I just need to have my stress test results sent to them.

Still waiting to hear from Robert Wood of new Brunswick hospital to see if i made there list.

My question.  Will they mail me a letter and if so do i need to keep it safe?

[Romona]

I was on the list and didn't know it. Two weeks after I was listed I got a letter. I didn't need my letter when I got called. 

[okarol]

They called to let Jenna know, followed up with a letter. No one ever asked for proof! Good luck with the stress test - I hope it goes well and you can look forward to waiting.

[jbeany]

I think they send the letter in case you want copies for your doc.  I don't think you need it for anything after that.  It's just so you can see it in writing!

[paul.karen]

Thx ladies.

Okarol already had the stress and doppler tests.  Just need them to send results to Univ Of Penn.  As they were ordered through a different TX team here in Jersey.....

[Rerun]

I kept my letter just because it was like an accomplishment!!

                     

I hope you get your new kidney soon!

[rookiegirl]

I received a phone call from the transplant coordinator and informed me that when I go for my PD Clinic visit, they will take an extra tube of blood specifically for the transplant team each month.  A few days later, I received a letter as well.

[cariad]

I was mailed letters from all three hospitals where I was listed. I kept them all - they are filed with my other important medical papers. Since I knew I was going to be transferring time at least once, I wanted proof of when my start date was in case of error.

Sure enough, I tried to do a time transfer from USC to Cedars, and Cedars did not transfer the time properly, just listed me as if I were starting over. It was only 2 months difference, but that can apparently be all the difference in the world on the list.

[Slywalker]

I received a letter and a pager.  One of the companies in our state provided free pagers while you were on the list.  Very cool.    My transplant center didn't really believe in calling people.... boy is that a long story.

Good luck on getting listed.

 

[staceyand joe92]

I was listed with Good Samaritan Hospital in November 08. They sent me a letter explaining their procedures and a average wait time.

[paul.karen]

Thank You All.

Rita one of the hospitals coordinators im seeing just called me.  I am going on the inactive list.  I quess this means i will be getting time on the list.  But my stresstest came back with something on it.  So i have to see a cardiologist to have that looked at.
Hopefully hospital #2 will call me soon.
thx again
P&K

[Wenchie58]

Paul
  When I had my stress test it also came back that they "saw something".  I visited the cardiologist and in a 15 minute exam he said it was fine and wrote the letter to get me listed.  From what I understand, even though inactive you ill be gathering time.  Your time will come.....hold tight.

[BigSky]

I just got the call.  I was told that i was discussed last Friday and they will put me on the list at the Univ. Of Penn.  I just need to have my stress test results sent to them.

Still waiting to hear from Robert Wood of new Brunswick hospital to see if i made there list.

My question.  Will they mail me a letter and if so do i need to keep it safe?

You will need to learn the secret handshake to be admitted at tx time.

Just kidding.

My center called me and  sent a letter to me and also one to my doctor.

From that point I get monthly tubes to send blood for the tissue typing center.

[willieandwinnie]

Len never received a call or letter. He just started receiving a month lab tube that I had to Fedex to the hospital every month. You would think they would make it the same everywhere but that goes to show what I know. Good Luck . 

[kellyt]

I received a letter.  The first letter I received said that I was "listed", but that I wasn't "eligible to receive a kidney" due to me having to have some dental work done (I had to have a tooth pulled).  Once I had the tooth pulled and the transplant clinic cleared me, they sent my stuff to the "committee" again and they approved me to become "eligible".  I then received another letter stating that I was "activated and eligible".  I think those were the words.

Basically, the first letter was saying "we have placed you on "the list" and you are accumulating time, but you will not be eligible for "the call" until all your testing has been completed".  I had to wait until January to get my tooth pulled due to my dental insurance being maxed for 2007.  Again, once that was done I was awaiting that call. 

And yes, I'd keep the letter(s) in a safe place just in case they ever say "you were never listed" or something stupid.  I'm sure it's happened to someone.

Congrats Paul!

[Chris]

I was just called, no letter at the time. At that time I was offered a beeper (still early days of cell phone  ). Just make sure you get those blod test done and sent in

Good Luck