For all the people on the list...

[tiredandthirsty]

has this ever happened to you?

as most of you all do, i have to provide a PRA sample every 30 days for cross matching purpose to the transplant center.  before i started dialysis, i used to go see the neph at the center every 30 days or less and they would take care of the sample.  But the center is a hour and a half drive from where i live so since i have started dialysis, the transplant center neph has transferred me over to a local neph and i only see the transplant center neph once every two months or so.  to take care of the PRA sample, the center has sent me a box full of vials and smaller boxes to mail them back and the paperwork which they said the dialysis clinic will take care of.  all i have to do is take it to them and they will take care of everything.  here is the funny part, my dialysis clinic has no idea what to do!  they were asking me what is this and what needs to be done!  what in the bloody he!!?  i had to call my transplant coordinator and she called them at the clinic to explain what needed to be done.  i would think as a dialysis clinic dealing with nothing but ESRD patients, quite a lot of whom are on a transplant list, they would know.  but i guess assumption is the mother of all screw ups. 

Lesson:  never assume anything.  double check everything.  call and harass if you have to. 

[dialysisadvocate]

I have heard that this happens more than not, unfortunately - One would llike to think that all facilities know what to do and why -- but unfortunately the reality is such that they don't..... ask questions and question anything that pertains to you and your care -- this is sad that one has to be so vigilent about their care they receive, but a reality for sure.
Roberta Mikles - Dialysis Patient Safety Advocate - www.qualitysafepatientcare.com

[Pam]

I take my vial  with me on lab day. The tech fills it. I date it and the lab slip, pack it up and take it to the post office. That way I know it is in the mail on time. The less people I depend on, the better off I am.
Pam

[Deanne]

I'm not on dialysis yet and have a lab that does blood draws for the local doctors do these for me. I was started that they didn't understand it either. It isn't that complicated. Draw blood. Put it into the provided tube. Hand it to me. Why is that so difficult?

[cattlekid]

Because they probably can't figure out where to bill their time.   

I do home hemo and draw my own tubes, spin them down in the centrifuge and mail them off.

I'm not on dialysis yet and have a lab that does blood draws for the local doctors do these for me. I was started that they didn't understand it either. It isn't that complicated. Draw blood. Put it into the provided tube. Hand it to me. Why is that so difficult?

[noahvale]

^

[WishIKnew]

During my 5 years on dialysis (PD and in center hemo) and on the transplant wait list, I was surprised time and again at the total disconnect between the dialysis people and the transplant people!!!!  I could share story after story...   

It's a really sad situation and I'm convinced that only the "healthy", "savy", intelligent", "rich" among us even get the opportunity to get a transplant because they make it so complicated, time consuming, expensive, etc  to navigate the process.  I've talked with several dialysis patients who have shared that the main reason they are not listed is because they don't have the energy and or the means to make it happen. 

This is one area where I think the dialysis units really fall short.  But, as someone mentioned, where's the financial advantage for the dialysis clinic if a patient gets a transplant? 

 

[jeannea]

My dialysis center had no problem drawing my tube for the transplant. I got a paper from transplant with the instructions. Then every 2 weeks I would go to dialysis and they would draw it and send it out. I did nothing except show up. But my dialysis center was very supportive of us getting transplants.

[Willis]

MY PD clinic seems to be in close contact with the transplant center even though they are independent of each other. My PD neph is on the transplant center evaluation committee. My PD nurse seems to know exactly what the transplant center wants and sends them whatever samples are necessary each month.

 

[MooseMom]

It's a really sad situation and I'm convinced that only the "healthy", "savy", intelligent", "rich" among us even get the opportunity to get a transplant because they make it so complicated, time consuming, expensive, etc  to navigate the process.  I've talked with several dialysis patients who have shared that the main reason they are not listed is because they don't have the energy and or the means to make it happen. 

This is one area where I think the dialysis units really fall short.  But, as someone mentioned, where's the financial advantage for the dialysis clinic if a patient gets a transplant? 

 

This is really disturbing, and I've heard this before, especially concerning pre-emptive transplantation.

[tiredandthirsty]

MY PD clinic seems to be in close contact with the transplant center even though they are independent of each other. My PD neph is on the transplant center evaluation committee. My PD nurse seems to know exactly what the transplant center wants and sends them whatever samples are necessary each month.

 

This is the best situation to be in.  great that you are being sorted out properly.  hope it stays that way in every aspect for you. 

[tiredandthirsty]

Like Pam, I take my transplant bloodwork tube in with me to dialysis, fill out the paperwork, pack it up in the prepaid box and drop off at the UPS Store.  Transplant center sends vials and packaging to my home every six months.  Been doing it this way for years.  Only way I know for sure that it will get done.  Just another way of not having to rely on others for my treatment.

i had no idea you could take the vial back and mail it yourself.  i thought, obviously until now, that the dialysis clinic takes care of the entire process.  i will do the same from now on.  just get them to draw the blood and do the rest myself.  " Just another way of not having to rely on others for my treatment."  very well said here btw. 

[Joe]

My center is also very supportive of their patients getting a transplant. They pull my transplant sample every month with my normal labs and send it off for me. So far, we have not had any issues

[MomoMcSleepy]

Because they probably can't figure out where to bill their time.   

I do home hemo and draw my own tubes, spin them down in the centrifuge and mail them off.

I'm not on dialysis yet and have a lab that does blood draws for the local doctors do these for me. I was started that they didn't understand it either. It isn't that complicated. Draw blood. Put it into the provided tube. Hand it to me. Why is that so difficult?

holy crap, cattlekid, you are a rock star.  It was the spinning thing that put it over the top or me.   
Incidentally, where is your fistula?  My surgeons are saying I'll be able to lift thing in a few weeks, mine is in upper left arm and looking very big and strong now.  I remember you said not to lift ever, but did you mean not to put purse straps, etc., on it?  We were talking about both. 
lol, my touchpad changed my misspelled "surgeons" into "simpletons"