How does your transplant coordinator treat you?

[Tora66]

I speak to my transplant coordinator about twice a year when I have a question. She's always pretty quick about getting back to me. Being here on this forum I've wondered about other ppl's experiences with their transplant coordinators. Do you find them helpful and supportive? Do they give you information about where you are on the list?

[iolaire]

I speak to my transplant coordinator about twice a year when I have a question. She's always pretty quick about getting back to me. Being here on this forum I've wondered about other ppl's experiences with their transplant coordinators. Do you find them helpful and supportive? Do they give you information about where you are on the list?

I never really talked to mine, in fact is was very abrupt when someone called me to schedule a 3 year re-evaluation, and I sort of companied that it was odd how they never contacted me and then just abruptly called me on my cell phone to schedule the re-evaluation (I was also irritated that I took the call and missed my Metro because I thought it was a kidney call).  Sometime after that the started a program were a contractor in TX (I'm in VA) would call to check for heath changes or recent hospitalizations, that was completely a waste of time since I was stable.  At INOVA for the first five years they never really gave me info on where I stood.

Also I was very surprised to go into the actual transplant at GW and hear from the surgeon that I was at 50% antibodies, that was never once told to me by INOVA or GW.  At GW they did tell me I was very close based on my almost six year wait time and the average wait is something like five.

I don't think they can give you clear rankings because every kidney is different and will be offered to different people because of that.

I will say at INOVA the nurses that called with alternate kidney offers gave lots of information on the donor and the kidney's health, my position for that kidney etc...  GW called twice and gave much less information.  Even the final kidney I got I received less information.  Had it been at INOVA I would have known how the donor died and such,, instead I got a Donor state, age, sex, and creatinine and that's about all.  If I was at INOVA I probably would have known how the donor died and a little bit more about the stress on the kidney from how long it has been since the death.

[Tora66]

You would expect them to give you as much information as possible. The fact that you didn't know your antibody status until surgery is not right.

[Cupcake]

Unfortunately I am having trouble with my transplant coordinator returning my calls/emails. I've been going there for about 6 months, my donor is still being evaluated(they found an 'incidentaloma' in her abdomen that is probably nothing but needs to be biopsied) and I have only called the coordinator a couple of times. She doesn't return calls to my donor either. So last week I asked to speak with her boss- I wanted to ask for a different coordinator- and the supervisors response was ' well, she's pretty good about calling people back.' Pretty good??? Is that what I can expect- pretty good?? I don't get it- I want a kidney and I guess I thought they want to help me get one.

[Tora66]

Cupcake, make it clear to the supervisor that the coordinator doesn't return your calls and that you insist that if she doesn't reply you want someone else.The lack of response is unacceptable.

[Emerson Burick]

Cupcake, make it clear to the supervisor that the coordinator doesn't return your calls and that you insist that if she doesn't reply you want someone else.The lack of response is unacceptable.

I agree with this. I'd go further--keep a log of every call/email you send and when you get responses. Without data, you're just a cranky patient. With data, you're a potential letter to a news agency or congresscritter.

[Xplantdad]

Our daughter is seen at Mayo in Scottsdale. They have a patient portal where you can post messages, etc. for the transplant team/coordinator. We also have the direct cell number for our daughters coordinator, and if she's off, then it rolls to the on call/covering coordinator.

Even at this great hospital, there is a problematic communication gap between staff. They are working to make it better, but we still have to be proactive when talking to the docs-as lots of info is not passed along!

[justagirl2325]

Canadian here so experience may be different.  Our local hospital transplant coordinators were completely useless.  Our city is about 100,000 people and there's only one hospital.  All they had to do was make a referral to the large city hospital....they couldn't be bothered.  We waited for a year for them to do anything (as everyone told us it would be at least a year) screamed at them for six months to do something (still nothing) so we bypassed them.  We called the large city hospital on our own and got in right away.  They were mystified "why didn't anyone make a referral."  We were lucky I guess that we could do it that way.  I was adding up our medical expenses the other day and we are at $26,000 this year so far.

[iolaire]

I was adding up our medical expenses the other day and we are at $26,000 this year so far.

Wow! And that is with "free" healthcare, do you mind providing some big breakdown of what those costs are for?  I.e. 20% transport and lodging in big city, 40% medicine, etc..?

With my good US corporate insurance (and Medicare) my max out of pocket is about $4000/year including the insurance costs in my paycheck.  If I max out my deductibles my good plan and cheaper plan is basically the same price annually.  Also it looks like I'll spend about $500 more per year for minerals like sodium bicarbonate which is not covered by insurance.  Where I get hit bad is on dental, to the tune of about $1500 every time they want to fix something.  Insurance will not cover the good ceramics and such so I end up paying for them, and my annual dental cap is something like $1500...

[justagirl2325]

Yep, free health care.

Not free prescriptions... so prescriptions (after coverage through my work) are about $5,000
Big expense this year was buying an insulin pump (only covered in Canada for those under 16) - that was $4,000 this year (and $4,000 last year)
We have to buy our own water filters for dialysis (due to the fact that we live in the country and have a well) those are $1,000 a year

The rest is travel.  We travelled to the big city hospital 7 times this year pre transplant on top of 3 times last year.  All but two of those trips could have been handled locally if they did anything.  We are both certain that he would STILL not be listed unless we did this.  When we go for the transplant we have to stay for a month and we have to cover our living expenses there...rent for the month is $4,000.  So $23,000 for travel of which the government has given us grants of $7,000 to pay for this.

We are lucky to be able to afford to do this.  I feel sorry for anyone local that can't.  I think they would have no choice but to move permanently or wait 5-7 years.

[iolaire]

We are lucky to be able to afford to do this.  I feel sorry for anyone local that can't.  I think they would have no choice but to move permanently or wait 5-7 years.

Thanks, I feel fortunate every day to be able to cover the miscellaneous costs...