Transplant Coordinator issues

[Bax509]

Has anyone requested to change the coordinator assigned to them when they got listed? Before my own listing, I watched my Dad go through kidney transplant. Based on his experience, I thought that the coordinator would be "on my team" and provide support through this journey - was I assuming too much? Mine is curt, condescending, devoid of empathy and not pro-active. I've had to seek out answers to questions (on this forum for instance) elsewhere because she is so difficult to deal with. I'm afraid to rock the boat by asking to change - will that hurt my chances at a kidney or good care?

[mtwskk]

You need to be proactive and do what is best for yourself. It’s really hard to get a different coordinator as they usually assign by last name or another systematic approach. I used to say kill them with kindness. They do have your life in their hands but there are some approaches you can use. Ask lots of questions, get all your friends to get tested. Make sure they know you want a kidney and are ready to have it. Do your homework and soon you’ll be working together. But be outspoken but kind.

[AndrewT]

Dear Bax509,

Please don't think, that I'm, 'Sticking Up For' bad staff, but a few thoughts..... I had a Hospital Doctor, I won't name him, who was 'In Charge' of my Transplant. Dr T (as I shall refer to him) ALWAYS seemed 'Curt', 'Rushed' and 'Uncaring'. However the same man, worked Absolutely Tirelessly, trying to save the Life of a Transplant Patient. He had her transferred to a Side Ward, a 24 hour nurse was assigned- and the equipment in that room! Unfortunately, due to her Condition, she didn't recover.... but NOT, for want of trying.

OK IF your Doctor, really is, a 'so and so', then DO try to get Him/ Her changed. If you do take this rout, which I doubt you will have to, then Term It as follows.... 'You know, we are not really seeing 'Eye To Eye' here are we? Perhaps it might be better, for us both, if I saw a Colleague of yours'. Taking this Neutral Stance, is the best way, to approach this- you certainly DON'T want/ need to be rude!

Whatever else I, really Do, wish you well Bax509- I had a Transplant, in July 2013, so if I can be of Further 'help' please do ask.

Very best wishes

AndrewT

[Donaldson0007]

Oh my I can totally relate! My coordinator actually left my clinic and one of the others was so nasty I specifically requested someone new and got reassigned. As others have stated, do what is best for you. If that involves changing your coordinator then that is what to do. What clinic if I may ask?

[Bax509 in reply to Donaldson0007]

I live in Oklahoma City - my Hospital is Integris Baptist Medical Center.

[WYOAnne NKF Ambassador]

You have a right to change your coordinator if you feel that is what you need to do. This whole process is hard enough without feeling like your coordinator is not on your side. Changing coordinators should not effect your chances for your transplant.

Call your transplant center and ask for another coordinator. There should be a clinic manager you could speak with.

[Yankcg70]

I hate to say this as i know they are trying to do a job with alot on their schedule...but unlike the others it may be you just need to be blunt with the. The next time you go and it starts to backslide, i would blatantly ask them.."are you having a bad day or is it just me personally, you are very rude and condescending alot and i dont appreciate it" sometimes in a job like that, they dont even realize how they are acting..some of them have a horrible hierarchy attitude and think they are so smart and we the patients are so dumb and we waste their time. I am experiencing this myself with my 2 orthopedic surgeons. One is so patient understanding, and tries to answer all questions with out wasting too much time and the other in exact same office is short, distant and i really feel Pms'ng and he is a man. So dont be afraid to speak up. Your WHOLE experience starts with them and if you have a negative experience with them, then you will start to have negative feelings about the whole procedure. I wish you so much luck.

[Transplant314]

I had similar issues with my coordinator. We called her boss to complain and request a new coordinator. We received a call back from our coordinator who asked what the problem was. We were honest and told her about the lack of information and the curt attitude. She to us we could not change and she was the head coordinator. She was the weak link in the team. The surgeon, my nephrologist and the nurses have been wonderful. Having finally had a transplant a year ago, although not an excuse, I believe she does not have the best personality but was totally overworked and overwhelmed by the shear number of transplant patients she is responsible for.

[Lionkin]

I can fully relate to you, in my case - hard to believe..I never saw my Transplant Coordinator, fortunately for me the my wife was the donor - her Donor Transplant Coordinator was the savvy and pragmatical & Sweetest person- she understood my situation.. & with her support and a Great set of Doctors ... the transplant went smoothly... some time all us run into such situations, but be pragmatic ..once the transplant is done.. followups are no longer handled by Transplant Coordinator..at least in my case. .. at this point the follow up Nurses / Doctors in the Clinic...

. (Hate to say this - sometimes we have deal with the devil (pardon me) in order to move ahead.....