My meeting is On!

[kimcanada]

Hi here is my story,

Last Tuesday my son Kyle (19) took the day off of work to take me to my dialysis (close to 2 hours away and they don't want me driving until I am more stable)  anyhow he is one of my 4 possible donors.  He has been calling my "coordinator" for about 3 weeks to the tune of about 10 messages left, with no response.  So this day beings he is in the hospital with me he decides to go see miss coordinator.  Well what do you know she never received one message, not one , wow whats the odds.  Back to my story, he says to her, can you please tell me what I am supposed to be doing in regards to getting tested for my mom, her answer to him was  (DRUMROLL) Gees I don't have time today, can you come back next Tuesday . (Please see first line about how far we live , which she knows, and he is 19 and a student)

Kyle comes back to the unit and tells me that he will have to come back next Tuesday to talk to Miss Coordinator,  I lay there thinking, rolling this in my mind and finally I have my first dialysis total meltdown.

I yell over to my nurse, tell her that I feel totally out of control of my care, and since I have been put into dialysis my transplant work has stopped, I have no idea what health care person I am supposed to be talking to about what , and I am getting VERY PI***** off   , I tell her that I can't be transfered until I get my fistula (which I still don't know when I am getting)  I can't get a kidney until I know what to tell the people that have stepped up to the plate what to do.  Well what do you know in my file is my fistula date this Wednesday coming, they forgot to tell me.

I told her to make me an app. with Miss Coordinator and I think thats Tuesday.

This is my longest rant and I could keep typing for another hour, I am very frustrated, I feel like no one is driving my ship and I am being blown around with no real direction.

Kim

[thegrammalady]

sorry you're so frustrated. i have found that whenever someone says "i can't do that" my response is "that's not acceptable" so far it has worked every time they (whoever they are don't get to say they don't have time for me) make time or find someone who can. of course i'm just a pushy bitch but this is my life here and "if you can't do it my way, you don't do it at all" of course if you can give me a reasonable and logical reason why not, well then i will probably accept it.

[okarol]

The transplant teams makes the process difficult for living donors on purpose. It's one of the ways they determine the amount of commitment to following through with the surgery. Especially with someone who is so young, as your son. We experienced this many times with the donors that came forward offering to be tested for Jenna. Her 19 year old cousin that wanted to come to California from Colorado was ignored and waved off until we demanded that they talk with her.  It takes stamina and persistence to get the transplant team to take the donor seriously. But if you have a good team they will guide them through. Our first hospital was not interested in living donors, saying that Jenna would get a good enough cadaver kidney. Waiting 5 to 7 years was just fine with them. We switched hospitals and there was a world of difference. The transplant coordinator was cautious, but also responsive and thorough, which is what you want. If you have a good team the transplant will be from the right person, at the right time, and the outcome will be better for the donor and recipient.

[kimcanada]

WOW

I never thought of it being because they wanted to know if you are in it for the long haul.

I do find it hard to think that they would think that way, but I will tell you it is the only thing that makes sense.

I have been shocked at the way the Coordinator has been with me, and my family members since I have been on dialysis.

Thanks Okarol I really do appreciate your post it makes me feel like it isn't just me overreacting

Kim

[kelliOR]

The transplant teams makes the process difficult for living donors on purpose. It's one of the ways they determine the amount of commitment to following through with the surgery.

I found the exact opposite to be true at my transplant center.  I had 4 potential donors come forward, and the transplant center bent over backwards to accommodate each one of them.  By the way, I had my surgery at OHSU (in Portland, OR.) Which is three hours from where I live.  One of my potential donors lived in North Carolina, and they set up all her testing and blood work long distance so she didn't have to travel.

Kelli

[kelliOR]

The transplant teams makes the process difficult for living donors on purpose. It's one of the ways they determine the amount of commitment to following through with the surgery.

Just wanted to add that I agree that this must be the case for an altruistic donor. 

[Sluff]

How did things turn out Kim?

[kimcanada]

Well I think I might have over reacted 

I went to my doctor and told him my concerns, he went to the coordinator, and she got back to me a few days later.

My transplant process has begun, and my donors have been contacted and told what to do.

I think that I will be going to the center thats about 40 minuends from me instead of 2 hours (where I am now) in April.

Basically everything is falling into place, sometimes when you are abit of a control freak like myself, you forget to give time a chance.

Thanks for asking, its nice to know that people in here care.

Kim

[Sluff]

It's ok to be in control. At least you are on top of it. 

[paris]

I think because we can't control the disease, we tend to want to control everything else - at least I do. Hope things go easier for you.

[goofynina]

Whew, glad to hear it Kim,  please make sure you keep us posted and remember, we are here for you 

[angela515]

  Im glad you took control!

[jbeany]

Sounds like kitkat isn't the only one running around with a big stick!

You go, girl!

[Sluff]

Great just what we need another Lady with a big stick. 

[kimcanada]

Sounds like kitkat isn't the only one running around with a big stick!

You go, girl!

Great just what we need another Lady with a big stick

Will I never thought about myself with a stick, but if Kitkatz wouldn't mind I am sure I cold get stuff done with one.

I do find that with KD that you do learn to have a voice,  especially when such a big part of your life is wrapped up in this dang disease

[lola]

Kim that's awful my husband is at the university of minnesota and when i calle dto say i wanted to be tested they made things work around my schedule since i'm a stay at home mom of 3 hope your team starts acting like one!!!    Amy




EDITED: Fixed icon error - Bajanne, Moderator

[Sluff]

How did things workout for you Kim?

[skyedogrocks]

Ugh, I can't stand Rob's transplant coordinator.  When we first started we didn't get all the info on donation, she liked to give it to us at different times.  I was so frustrated!  I kept sending people to her and she would refuse.  Now, I know I have to tread lightly because I don't want to ruin any of Rob's chances.

I got so frustrated though that I asked to talk to her boss.  She got a meeting together with us, a surgeon, herself and the social worker.  She finally let me know who the best people are for donation.  I couldn't believe it took 5 months for her to let me know.  I asked why she didn't tell me this before, she didn't have an answer.  I asked if there was some sort of material they had that they could give us on their policies on donation.  They didn't have anything like that and thought it was useless. 

I know they have a stressful job, but it's even more stressful on the patient and their family.  I told her this....she has gotten a little better.

[livecam]

I don't think I would have put up with that.  There are other transplant centers that would appreciate your business.

[mmmmdeedee]

Hi Kim:

Hope things are rolling along better.

If you have any questions on any of the other processes, oplease don't hesitate to ask. I just went through the whole thing. 

My bro ended up having to send over 42 vials of blood (from Hawaii) and two trips out to California. So many things went wrong. No communication, no coordination, too many chefs with their hands in the pot.

My sister is going to send a list of our concerns now that it's all over with. Same as you probably feel = don't want to mess up the relationship with the people with whom you are trusting your life - and someone elses.

Take care and gtood luck.

[kimcanada]

I don't think I would have put up with that.  There are other transplant centers that would appreciate your business.

See thats the problem, we are set up differently in Canada, you go where you are closest to.  It is government run.

Well I have my donor in place, and she is just starting her testing, and like before, we don't know how many tests or what the time line is.  I am so fortunate that I even have a donor, but I will tell you that this has been the most frustrating process that I have even been involved in.  I talked to my social worker on Friday about not knowing anything , and she is going to TRY to get me info.  I am at the point of just giving up trying to understand what doing on, packing my suitcase and waiting for the phone to ring   

Kim

[Sluff]

Hang in there Kim, all of a sudden the messenger will be at your door! Oh thats right you have phone service these days in Canada..

[kimcanada]

Oh Sluff you funny, 

Thanks I know it will get here but man I have no patients!!!

Kim

[Romona]

There are so many coordinators during the whole process, The one that handled my pre-transplant testing paperwork ect....was ok. Test results that I faxed got lost ect.. The only way I knew she didn't have things is when I was copied into letters to my doctor. I fely like I was being tattled on and wasn't complying.  I started to hand deliver things when I was there (I live two hours away). Finally my doctor had me fax things straight to him and he hand delivered things. He would call to tell me that he gave it them. I love my doctor he goes above and beyond.
The coordinator that handled my donors was wonderful. She returned phone calls and e-mails right away.  We were waiting for a potential donor's results when I got the call that the had a match for me.
My post transplant coordinator is awesome. I call her with all kinds of questions. She is one in a million.

Good Luck and I hope you can find coordinators that work well with you. Hang in there!