What is your transplant center like as far as communication goes?

[*kana*]

Hello,  I am listed at Henry Ford and trying to get a duel at Cleveland clinic.  The problem that I have is nobody calls me from either place.  Henry Ford never even called me when my friend was a match.  I had to find out thru my donor friend even when our surgery date was.  The live donor didn't work out and I am fearful that when a cadaver kidney becomes available they will neglect to call me.  Cleveland Clinic tells me they will call me back for an appointment in a week and 3 weeks goes by and nothing.  I send my blood in monthly and nobody calls to confirm that it arrived safely, is that normal?  I need an appointment in Oct for my re-eval and when I call they tell me they will call me back, and they don't.  When I do a job I do it well and keep my customer informed the entire time.  Something like this you'd think they would stay in contact, but they don't.  Maybe I am just dealing with an ignorant transplant coordinator.  I tell my husband that I 'd going to divorce him so I can get a different coordinator.  LOL  They assign people based on their last initial.

Do you just get listed and then hear nothing from your coordinator until you get "the" call?         

[Rerun]

I'm not listed, but that seems rude and unprofessional.  Call them everyday.  Be the squeaky wheel.

[Jessmomto3]

That sounds terrible!  My experience with my son's transplant coordinator has been much different.  Granted, he's at a children's hospital and if I didn't call them at least weekly, they would call me.  Can you call them?  It sounds like you're going to have to be really proactive in dealing with them.  I think you have a reason for being worried that they're not communicating.  I agree with the previous poster, call them everyday.

[MIbarra]

Can you ask for a different coordinator? Ask to talk to the head of the clinic and maybe it can be arranged that you get another one.

I had a coordinator that would never call me and when I would get a hold of her, she seemed annoyed by my questions. Then they hired another coordinator and split the alphabet again (we were assigned by last names too) and I got another coordinator. He was great! Even visited me in the hospital after the transplant.

So, like Rerun said, be the squeaky wheel! Call daily and ask to speak to the head or the director to be assigned to someone else if that doesn't work.

[Chris]

I would also say "That's what you keep telling me and you never call me back and this has happend for a couple months now"

Sometimes you have to keep them on their toes, be proactive. Ask for your test results also to be sent to you.

What they are doing to you doesn't install confidence does it?

[susan parry]

i agree i would keep calling and bugging them-i was only on the lsit for a couple of weeks before i got my transplant but i have had similar problems with my kidney drs staff. 

i went one time and thought i had an infection-they dipped it and said no but they would grow it.  my kidney dr called a couple days later and asked how i was doing-i asked about my urine and the nurse informed me she had "thrown it out" so i would need to leave another.  (mind you this had been 4 days now and i have had polynephritis before and really didnt want it again)

another time i did have an infection and my kidney drs pa wrote the scipt for 500 mg of cipro 2 x per day for 10 days.  i called and asked her if she even bothered to look at my chart and my decreased kidney function as that was too much medication for me.  she called me back and said "oh yeah-cut the pill in 1/2 and only take 1 per day for 7 days. 

i have learned that you need  to be your own advocate and watch out for yourself as they dont seem to care.  i work in human resources and i am more through with my paperwork and job duties than these people are and i am not dealing with human life.

[cariad]

If you are trying to make an appointment and no one is calling you back, then no, not normal and not acceptable. I find it helps to be very direct with people, like Chris was suggesting. Mention that people have not been calling you back and that you think they are not taking your care seriously. Tell them you are thinking of transferring to another hospital, and do it if things do not improve.

As for not calling you when your friend was a match - yes, that is normal. This is a privacy issue and it is up to your friend to update you on testing status. I do not understand how you could not know about surgery dates in advance. That sounds like it was a major oversight.

No, they will not call you to inform you that your blood draw has arrived each month. I would not worry about this too much. Usually they sound really strict about it, but it takes quite a while to be inactivated for failure to send blood. I have not sent blood to my centers in a year, and have been told I am still active on the lists. Send your blood every month, if it does happen to be mislaid one month, it should not affect your status.

Good luck!

[Chris]

Cariad, I kinda disagree about not calling to see if they got your blood after my experience. I did not know they weren't gettiong my blood for  over 3 months till the transplant center called me to ask me if I got a transplant somewhere else because my name was taken off the list. Another person with the same name recieved a transplant and UNOS messed up bad. Unless they are drawing your blood, I would ask to see if they recieved it.

[cariad]

Cariad, I kinda disagree about not calling to see if they got your blood after my experience. I did not know they weren't gettiong my blood for  over 3 months till the transplant center called me to ask me if I got a transplant somewhere else because my name was taken off the list. Another person with the same name recieved a transplant and UNOS messed up bad. Unless they are drawing your blood, I would ask to see if they recieved it.

Good point, Chris! I seem to remember you have a really common surname. Me too. That is a very scary story. At least your (our) center called you. They actually took your name off the list? I would have thought it would just move to inactive status. That is how it supposedly worked at the CA centers where I was listed. I guess since they thought you had a transplant, it makes sense that they would take you off the list. Glad you got it sorted out!

[Wenchie58]

Every time I read a post like this I thank my lucky stars for my transplant team.  After I was listed they called every other month.  I was listed for 15 months....three weeks before I got my transplant they called to tell me I was "reachable" to always keep my cell phone with me and charged.
I was transplanted 10/24/08. I have local blood work done every other week and go to the transplant clinic every 6 - 8 weeks.  They call me whenever new blood results arrive and give me  creatinine, hemoglobin and potassium levels.  I love those folks.
Four months after the transplant I went to the clinic and showing signs of rejection was admitted.  I wasn't prepared for the stay.  The next morning one of the coordinators walked into my hospital room with a hairbrush, toothbrush and toothpaste  and above all.....yarn and a crochet hook!  She had seen me crocheting in the waiting room other times.  I made hats for the pediatric cancer unit kids for the week I was there.

I am blessed!