Pissed @ Transplant Center.

[alrightstill]

Please pardon my french in this post.

I got a call around 5pm today from a transplant center I've been listed at for well over 5 years.

There was a kidney for me. A 4 out of 6 match (which considering my high PRA is superdeedupery excellent!!). They wouldn't give it to me cuz supposedly in May I cancelled an appointment to be re-evaluated and never rescheduled.

WTF is that f****ng sh*t?!??! NOTHING on my end has changed (insurance, health, etc) and they have all my current bloodwork and have been sent all my updated yearly tests. They tried claiming that since I missed that appointment my insurance wouldnt pay for the transplant. We told them we'd bring all current insurance cards (though, again, nothing has changed since the last time) - and the lady said "sorry, its already been rejected" and then admitted it was a mistake on both of our parts (mine & theirs - mine because I didnt reschedule and theirs because they forgot to automatically reschedule me).

I have been on their list for so long and they know how bad I need this kidney.  Why even bother to call me AND tell me its a 4 out of 6 match?

This sucks. I am so over this not having kidneys and waiting list crap.   

[karen547]

WOW, that seems a bit cruel to me. I would be so PISSED if that happened to me. I dont understand why just because you cancel an appt they can just skip you like that? I mean maybe you did cancel, but why didnt they reschedule you? I occasionally miss dialysis due to not feeling well, but thats few and far between, and hope that that doesnt keep me from getting a kdney! i hope you have better luck soon!

[alrightstill]

Thanks.. and yeah I know.  It seems terribly cruel that they even told me about it.  I've had tons of ups and downs with these kind of calls before - but never experienced something like that.

My mom verified that I did indeed cancel, but I was sick at the time so cancelling was kinda necessary. 

I used to work in a pharmacy and we were able to override certain roadblocks when it came to insurances.  I know getting a transplant is much more major than say, picking up birth control pills or something.. but it just seems lazy that there was absolutely NOTHING they could do on their part to maybe even TRY and over ride it. 

I'd understand if I didn't send them tissue typing every month, or keep them updated with tests.. or hell, even if my insurance changed... But all because I missed one little re-evaluation appt by 2 months?  Ridiculous!

Argh.

[Romona]

How frustrating! You'd think if you were not eligible that the center would have notified you after you missed your appointment. 

[Joe Paul]

Sorry they called specially if they knew you did not go through the re-evaluation tests again. Thats just plain mean.

[stauffenberg]

The background to this tragic story is that while the number of people on dialysis is skyrocketing because of the aging population and the increase in diabetes, the number of organs for transplant has stagnated since the year 2000 in the United States, and since 1998 in Canada.  In any situation where you have a desperate need for a scarce resource, manifold cruelties naturally creep into the allocation of life-saving gifts, whether you are in a life raft on the Atlantic Ocean fighting over food after a shipwreck or in the crowd fighting to get on the last helicopter out of Saigon before the Viet Cong take over the city.

The general solution to the problem is to fix the shortage of organs, which can only be done if we allow payment for cadaver-source and live donors.

[okarol]

I would be livid and upset too! I would call my insurance company and ask for clarification - it's BS - After all those years - that transplant coordinator is an idiot. If this happened to us I would be even more adamant about keeping active on the list. They just forget about patients that aren't chomping at the bit. But when you wait so long it's hard to keep fighting. This is another example of why you have to do the coordinators job for her.

Make them schedule your annual evaluation immediately. Please hang in there!

[G-Ma]

The word no one has said is one I have been told many times since on dialysis...non-compliant...I basically have been told that if I am non-compliant about appointments, medication, diet, dialysis and on and on I can be turned down for tx, nxstage and on; and they call leaving early without a good reason being non-compliant and I'm sure that domino part of what Stauff then said which is also correct, however I'm not sure it needs to be payment for organs.  Ex:  years ago no one educated me on what is done to take an organ after death so I refused to sign as a donor because I had this image of someone being cut up.  Once I knew better I had no problem saying yes I wanted to donate, so again we come back to education...educate people, especially the ones that are already in shock/grieving in a waiting room as I was when my husband had been shot and was in surgery and I had to release or deny organs and then after educate,  we need to have a system where once someone says yes I want to donate, the parents, spouse or siblings cannot change that request on demand, and yes through the years I have found I have to take charge of it all and not leave it to a coordinator or ins co or appt desk because if I don't keep following up on anything chances are it won't get done correctly.  We unfortunately live in a ""fast paced"" society so many checks and balances fall by the wayside and things like this horrid tx call do happen and I would be very unhappy as you rightfully are.

[del]

Why would they even call if they knew they weren't going to give you the kidney    Doesn't make much since to me to put you through that.  Better if they hadn't called and you knew nothing about the kidney!!  to them!!!

[Rerun]

I would be outraged! (to put it mildly)  You cancelled an appointment because you were sick.  Number 1 you were considerate enough to call and cancel instead of just skipping it and number 2 you were sick for crap sake!  I would demand your insurance get all the money back for lab work since the date of the cancelled appt.  I would demand to be taken off the list until you are out of dentention for the cancelled appt.  If you are "listed" you should be available for transplant.  This "punishment" for this and that is horse shit!  If you miss an appt or leave dialysis early for no reason then they should take you off the list so you at least KNOW you cannot get a kidney.  I'd call the press on this one.  This is absolute misuse of the National Transplant List.  Just remember that right now someone is walking around with your kidney.  I'd be more than pissed!

                           

I have to agree with Stauff.  If their were ways to pay for donated kidneys there would be more life boats in the ocean.

[Robby712]

I missed two monthly blood-tests before I went on dialysis.  (My sister was in a car wreck and spent over 3 months in the hospital, the first weeks of which was spent in a medication induced coma) and I had to wait one year before getting on the list because they said I was non-compliant.

I understand that because of the shortage of organs they are trying to find the best possible match between donor and kidney, and showing up for appointments, blood work, dialysis, etc...is all a part of determining the success of the transplant.  It makes sense.

...but if they would have told me missing labs would result in non-compliance ahead of time I would have never missed them.  That's the problem I had with it...and that's the way I presented it to them when I was up for review to NOT have to wait a year to be on the list.   That along with the sob story about my sister did not change their minds.  So here I sit, my 3rd year on the list...what could have been my fourth.

Look at it this way alright...you at least know you are getting close.  It's only a matter of time at this point...and after 5 years waiting, whats another couple of months.

[Rerun]

The little 16 year old girl who was waiting for her LIVE Donation from her cousin was being threatened with this horse shit!  Cassie if you get off early you may not get the transplant because then they would think you won't take your medication.  WTF???  She had a kidney with her name on it!  So the poor thing would sit there and hold her arm because it hurt.  AND this was the 8 hour run.  If she was on days 3 hours was enough but got threatened with her kidney transplant for leaving 2 hours early.  SHE already had twice as much dialysis as anyone on days. The thing there is "NUMBERS"  The clinic likes good labs and if you leave early you may make them look bad! 

That does it I just won't go on the list!  Screw them!  I'm not going to be judged on every move I make.  I had a transplant for 17 years and if that is not enough credibility for taking care of my transplant then f'c them!!!!

[okarol]

This case doesn't have anything to do with being compliant. The transplant centers require an annual update to your evaluation to be sure you are a viable candidate for transplant. The chest X-ray and an EKG, gynecological check up, dental check up, social workers review, surgical notes, all the hoops you have to jump thru once a year have to be done - if not they can exclude you. That's why I would call the insurance company and ask them - because it sounds like a bogus excuse by the coordinator. She should have called you months ago to say you were "inactive" on the list - but they dropped the ball. Sounds like someone is trying to cover their ass.

[stauffenberg]

Unfortunately, educating people to give cadaver organs will never make up for the shortage of kidneys for transplant.  First, only about 20,000 people a year die in the highly specific circumstances which make them medically suitable candidates for consideration as sources of cadaver organs for transplant.  Then, after exclusions of cadavers because they never signed a donor card, their family refuses the donation, or because of the whole gamut of medical reasons, such as cancer metatasis in the body, there are only about 15 to 20% of the remaining bodies available for organ transplant.  Only if we make much larger use of living donors will the kidney shortage be removed, and given the selfishness engrained in everyone who grows up in a capitalist society, that number will never be adequate unless we pay people.

[Rerun]

Or, Stauff, if we put into law "presumed consent" as which you are considered a donor unless otherwise stated.  That would be a very good solution but again they are not looking for a solution are they.

Alrightstill.... if you really want your transplant center to SHIT THEIR PANTS..... call them and tell them you found a living donor and you are going to have the center at the donor's location perform the transplant.  OMG they will be kissing your ass to stay.  The secret?  Medicare only pays the center that does the transplant.  Medicare also only pays after the transplant for ALL the workup tests.  So, just tell them the NEW center will be sending for all the tests done in the last year!   

                                                        

[G-Ma]

and payment only if all tests were done in order as required.  Bet the file system would be very upgraded and used.

[Ang]

get  onto  one  of the  major  newspapers  and  tell  em  what  a  load  of  BS  the  system  is  and  needs  to  be  changed  pronto

[Robby712]

This case doesn't have anything to do with being compliant. The transplant centers require an annual update to your evaluation to be sure you are a viable candidate for transplant. The chest X-ray and an EKG, gynecological check up, dental check up, social workers review, surgical notes, all the hoops you have to jump thru once a year have to be done - if not they can exclude you. That's why I would call the insurance company and ask them - because it sounds like a bogus excuse by the coordinator. She should have called you months ago to say you were "inactive" on the list - but they dropped the ball. Sounds like someone is trying to cover their ass.

My Trans coordinator has screwed up enough for me to believe that without hesitation.

[vandie]

These sad stories are why we, the patients, have to stay on top of our care.  Keep calendars, schedule your yearly tests to be sure you are active on the list.   It may be the facility's responsibility, but we cannot count on them.
All it takes is one person missing something for these things to happen.

Many good thoughts headed your way. 

[paris]

My co-ordinator was promoted and my case assigned to a new co-ordinator.  Who NEVER called, wrote or informed me of the change.  I called the center because it had been a year since my last tests and they usually schedule them automatically. I wanted them done before the calender year was over and I had to pay new deductibles.   She has overlooked my case completely.  She did say "well, you still show active on the list"!  I better! I have missed nothing, very compliant and if I become inactive because of their mix up, why should I be punished?       But, your center was so wrong to call and say there was a good match, but you can't get it.  How cruel.  I hope this gets worked out soon and a kidney has your name on it any day now.