Beginning transplant evaluation process

[okarol]

I am starting a new subject from a discussion with Restorer in another thread.

... I finally managed to call UCLA to reschedule the transplant evaluation appointment I missed thanks to being in the hospital in May. They were able to squeeze me in on August 31st. Now that it's looming again, it's almost all I can think about. I'm a little anxious about it. I'm going to Vegas for 2 days the weekend just before that. I hope I can enjoy it instead of being worried.

Just an update on me, I guess.

I am happy you scheduled the transplant evaluation. You should get waitlist time that dates back to when you began dialysis (this is a pilot program in Calif. and a couple other states.)
You will be fine - they just need to be sure you are healthy enough and responsible enough to get a transplant. Just for fun, check out the "What NOT to do or say at the Transplant Evaluation!" thread here http://ihatedialysis.com/forum/index.php?topic=703.0 - 

okarol, do you have a link to information about that program? I did a cursory search while I was at dialysis, but it's hard to find things with my phone.

I was thinking about it some more, and I think the thing I'm most afraid of is a line of questioning like this:

Doctor: When did your kidneys fail?
Me: I was diagnosed in March 2007.
Doctor: When did you start dialysis?
Me: September 2008.
Doctor: Why did it take you so long to come to us for a transplant evaluation?
Me: Uhh...

I don't have a good answer for that, at least not anything that wouldn't raise doubts of some kind. I'm worried that either they'll think I don't care enough about my health, or... well, that I have other issues that need to be worked out first. Is that something they're likely to ask? In general, are they really sensitive about things that might (in their eyes) predict negligence toward the transplant? Am I just overanalyzing everything? 

ETA: Maybe I should start a new thread in the Transplant section?

I cannot find the pilot info but it's referred to as "wait time backdating to dialysis time" and the transplant team should be knowledgeable about it.

These comments may or may not reflect your situation, but some have been mentioned on this forum:
Doctor: When did your kidneys fail?
Me: I was diagnosed in March 2007.
Doctor: When did you start dialysis?
Me: September 2008.
Doctor: Why did it take you so long to come to us for a transplant evaluation?
Me:
1. I didn't have a referral.
2. My social worker never suggested going in for evaluation
3. I wasn't sure transplant was for me. Both dialysis and transplant are treatments, neither is a cure.
4. I wanted to be sure my health was stable first.
5. I had hoped a living donor would step forward.
6. There are risks with taking immunosuppressants (like cancer) and I wanted to consider carefully before I decided.
7. I was hoping to find a job with insurance to help pay for the surgery and medications.
8. I was doing fine on PD.
9. The process seemed overwhelming at the time.
10. I wanted to learn all about transplants first.

Don't worry. You will be fine.
 

[Restorer]

Thanks okarol! 

Maybe I should be thinking more in the direction of telling them what they want to hear (as long as it's not in outright opposition to the truth). 

I'll keep throwing my questions into this thread as I get them, but for now: is there any consolidated list of things I need to know for a transplant? Drugs, side effects, procedures, treatments, surgery descriptions, definitions, things that influence outcomes, etc. Not just a FAQ, but an EQEA (Every Question Ever Asked)? If not, I'll probably end up reading every topic in this section anyway. 

[paris]

Matt, I am so glad you are able to start this process.    My fears of going through the evaluations were much worse than the actual events.  I had one kind doctor explain that they weren't trying to rule me out for a transplant, but they just wanted me to be in the best shape for a new kidney.  I kept thinking the tests were to rule me out and they thought the tests were to make me ready for surgery!      You will do well.  I don't think you can give any wrong answers  --- just be yourself.  They will all love you and soon you will be telling us that you are listed.  I look forward to that day!     Keep asking questions -- someone will have an answer. 

[Sunny]

      I have a spiral notebook I always take with me with a list of questions I want answers for along with noting anything important they tell me.
I have kept this notebook for many years and find I can refer back to it if my memory lapses (often!).
      The most important thing is to get on the list, because once you're on it, there is plenty of time to mull over all the existential questions you have regarding whether a transplant is right for you personally.Seriously, just answer their questions the way you think they want you to answer them and always put your best foot forward.
       I have been through this process for 6 1/2 years and once you are on the list, they will probably see you once a year and want to be CC'd on all of your medical records.Then if you get a transplant, they will continue to ask for medical tests and updates regularly. It never ends, but that is part of the responsiblity on your part that they are evaluating. I think the defining moment in one of my interviews with the transplant doctor was when I told him I always carry a weeks supply of emergency medications in my purse at all times in case for some reason I forgot to take a pill, which I pointed out is rare, or, jokingly, in case California had a big earthquake and I was stuck away from home for some reason.
      Good luck. Don't let it stress you. They want to help you and they want to get you on the transplant list.

[Restorer]

I have a file on my computer where I'm saving questions to ask at the evaluation, questions to ask closer to a transplant, and things to keep in mind (like things not to ask or mention!). I intend to write them down on a small notepad that I can carry with me to the appointment, and take notes on that.

I'm not doubting whether a transplant is for me. With all the problems I've had on dialysis, I want to give a transplant a try. The chances of it being worse than dialysis seem small, despite all the side effects I've been reading about. Besides, with potential donors, I can keep hoping that I won't have to wait years for a transplant.

[Restorer]

I'm less worried about the evaluation now. I have a list of questions to ask, some answers for questions they might ask me, and an idea of how things work.

I got a little discouraged reading through this section, seeing all the troubles people have had with medication side effects, the transplant itself, getting tested and approved, and getting donors tested and approved. But seeing the loooong list of people here who've had transplants cheered me up a bit. 

Now I'm thinking it won't happen as quickly as I had hoped, because they haven't given me any instructions on preparation for tests at the evaluation. They'll draw blood, but unless they tell me to hold off on caffeine and my beta-blockers when I call tomorrow, they're not going to do a stress test this time.

On Friday I'm going to get to dialysis at 6 am, get back home at 9:30, head out for Vegas, and just enjoy the weekend without thinking about the appointment. 

[okarol]

Personally I think if you have the option, get wait listed. You can always say no if it isn't what you want when you're offered the chance for a transplant. Some people cannot get listed. I wish transplants were available for everyone who wants one.

[paris]

Have fun in Vegas this weekend and forget all of this for a couple of days.   I'll cross my fingers that you hit a huge jackpot!   

[MooseMom]

The evaluation is also your opportunity to evaluate THEM.  I can guarantee that you will have many questions throughout the evaluation/testing/listing/post-listing process, and it is very important that you feel that you have good, open lines of communication open with your transplant coordinator and his/her team.  My coordinator had been on the job for only 3 weeks before I first met her; she had spent the previous decade being a dialysis nurse, so we were both rather new to the world of transplantation, and we hit it off immediately.  I asked if it was OK if I emailed her with questions as they come to my mind...this is how we communicate, and it has been invaluable.  So, after your loooong meeting with them, ask yourself if these are people that you can work with and who you can trust.

I can also promise that there will be bumps and miscommunications along the way.  All of the testing is made more complicated by insurance requirements, referrals and general bureaucracy, and if you and your coordinator work together well, these problems are easily and quickly dealt with.

[Sunny]

A lot of us live in locations where we don't have much choice about where we can get on the transplant list. Insurance coverage, distance to the hospital and convenience play a large part about where I was referred. I had to learn to live with what was offered. That includes finding a way to get along with my various transplant nurses and social workers for the last 6 1/2 years.

[Restorer]

I'm back from Vegas and I'm ridiculously tired. It was fun, though. I had a couple things I wanted to ask about/add on here, but I'm too worn out to remember, so maybe tomorrow. (Why don't we have a passing-out tired smiley? )

Oy, it took forever to write that. I kept zoning out as I was typing. If I could sleep, I would.

[cariad]

Glad to hear that you had fun in Vegas, Restorer.

Were you told that you needed a stress test? Aren't you 24 or something ridiculously young like that? I had one stress test in all of my evals (5 as an adult) and I have no idea why that centre insisted where the others did not. I went off on my coordinator a few times over the seemingly endless list of demands from that particular hospital (Northwestern) and not the others. It certainly began to feel like they were looking for reasons to reject me. I think the ugly little secret of transplant is that it's not so much that they care about you, but they want to guard their statistics because if those fall, then insurers will stop referring patients there. If that happens with Medicare, they're done.

Never went to UCLA - I contacted them, but they seemed to love making everything so difficult, and I think it took at least 3 tries to get a response. (I loved the message saying that someone would get back to you within 72 hours - I think it was more like 72 thousand hours in my case.) And their 4-hour orientation (4 hours!!!) was where I drew the line. Speaking of which, are you required to go to UCLA for some reason? If not, may I suggest checking out Cedars? They struck me as the most grounded and least arrogant of the LA options. USC acted as though they were doing me a favour by listing me (then had the nerve to act shocked when I ditched them).

I don't imagine you will be asked about why you took so long to get listed. It's a personal decision. I wouldn't actually know if that's a question they would ask as the moment my GFR dipped the slightest bit below 20, I was knocking on their doors demanding my rightful spot on the list. Still, I cannot see that it would matter how long you took to decide to get listed.

If you think you are done with testing, be sure to always double check this with your coordinator. Sometimes they neglect to mention that one last test, or that they never received that one set of records. That way, when the coordinator tells you you're done and then they still pull this one on you, at least you can feel justified when you land on the coordinator for being such a dolt. (OK, I'm projecting - I'm sure things will go fine for you)

Best of luck!

[Restorer]

I don't know about the stress test. When I made my first appointment (the one I missed), the letter they sent included a list of tests I needed to have done before the evaluation, which included a stress test. Then again, it also included a colonoscopy and a pap smear, so I don't think that list was tailored for me.    The letter they sent for this appointment didn't include a list of tests at all, and the letter itself doesn't mention any tests. So I have no idea if they'll make me do a stress test, and if they do, if they'll even have me do it at this appointment, or later.

I'm doing things with UCLA because that's where my first nephrologist referred me. If I don't like things at UCLA, I might consider Cedars, but with all the trouble (on my end) I had just getting started with UCLA, I don't know if I'd ever get things going with another transplant center.

I'm not looking forward to dealing with an unhelpful transplant team. I really hope things turn out better than I've heard they would - but from my past experiences with UCLA, I'm not optimistic.

[okarol]

Jenna never had a stress test, only chest x-ray, EKG and a million vials of blood. We started at USC, considered going to UCLA but the same problems existed - too many patients and not enough staff to help them. And the wait time in Los Angeles is 6 to 8 years now. That's why we went to la Jolla. But the advantage to UCLA is if you have a living donor, but they do not match, you can swap in the large national pool run by the National Kidney Registry. So this makes it possible to find a really good match and that's a bonus.

[Restorer]

Heading out the door in just a bit for a long day. Think I have everything I need. Would it help me to bring beers for the transplant team?   

[Marina]

You'll  do  fine  Restorer.                  I  was  terrified  of  having  my  evalutation.    It was  a piece of  cake!!           I  worried  over  nothing.              I  had  asked my neph to  order  the most common  tests  the  TX center  would  ask  for.    I  asked  for  copies  of  all  tests  I  had  done, and  faxed them to  coordinator  whom   at this  time I had not  met  in  person yrt  (lots of  telephone  calls).  She  would  call me  as  soon  as  she  received  a  fax  from me to  tell me  she  received  it.At eval,  the  drs  reviewed  all tests I  had  done,  and  gave  me  a list  of  what else I  still needed.    Only  thing  they  did at  TX  center  was  draw  10 vials of  blood.    My  list  included  a   stress  test  and  an   cardioangiogram.   the  angiogram  is  a  requisite  for  all  diabetics.   The  letter  I  received  to  confirm  appt  said  to  expect  to  be  there  from  4-6hrs  or  more.  It  only  took  3 1/2  hrs.
                 
After  tests  were  done,  we  waited  for   financial  clearance  (or  insurance  autho).   It  took 4days  to  get  autho,  which   coordinator  was  surprised, she  said  it  usually  takes  4-6 weeks  for  autho.     She  also  scheduled  me  to  go  see  TX  surgeon to  review  what  the  surgery  would  be  like.   I  was  told  to  expect  at  least  4hrs  for  this  appt.  It  took  1 1/2  hrs    

The  surgeon  said  “congratulations  you’re accepted   as  a  good  TX  candidate.  Estimated  wait  time  for  a kidney  and  pancreas  Tx  is  6months-2yrs.
It  was  such  an  easy  two  appts ,  darn  I  worried  over  NOTHING!!!
Good  luck to you  restorer!!!
 

[Restorer]

Traffic 
Orientation 
Lunch 
Waiting to be called 
Talking to the social worker 
Waiting for the nephrologist 
Talking to the nephrologist  (accent)
Waiting for the transplant coordinator 
Talking to the transplant coordinator 
Waiting for blood to be drawn 
Getting 11 vials of blood drawn and an EKG done 
"You're done" 
Traffic 

That was my day. I never thought I'd need a bigger variety of smilies!

So, the orientation was mostly stuff I already knew, with a few interesting things I hadn't heard, like how the average type O wait in the Los Angeles area is up to 10 years now, while in La Jolla it's about 3 1/2 years, and in Arizona it's less than 2. Lunch was called after orientation, and I stopped by the next waiting room to put my name on the list (third in line!), then had lunch.

I saw the social worker, and that was the hardest part of the evaluation. Lots of questions about support, and caretakers, and who would drive me, and lots and lots of questions about insurance. Not unexpected, just... well, difficult. Then the nephrologist, and he went through my medical history, and felt around my belly for anything obvious, and then said he had all the tests he needed right then.

Then I saw the transplant coordinator (actually the assistant coordinator), and I signed the consent for a transplant, and she marked me as Work-up Completed, so I'll be put on the list once I'm financially cleared (which is pretty likely, according to the social worker) and once I get a second blood typing from my primary doctor, and an abdominal ultrasound. She also took my mom's living donor form, and they'll get in touch with her soon (hopefully) to start her work-up.

 

Just one last question: any idea why they want a 2nd blood type? It looks like a standard thing they do, it's even marked on the form as "2nd Blood Type."

Edited to add:
I forgot to mention a few things.

The expected wait from now until a transplant is 6 months if my mom is approved as my donor. The nephrologist asked about a fistula, but he agreed that it's probably a good idea to wait to see if either of my donors are approved, and if the wait is 6 months or less, not bother to get one.

[MooseMom]

They type your blood twice just to make extra special sure that they have the right blood type noted in your records.  I went in for my first evaluation in 2004.  In the second evaluation in Feb this year, I brought those 2004 records and showed them where I was typed.  They took 13 vials of blood, and do you know what?  I got a call a month or so later telling me that they FORGOT to take the second typing, so I had to go to my local lab and have my blood typed again!  Anyway, for reasons of ABO incompatability, that's why they type you twice.

I'm glad you breezed through the whole thing, relatively speaking.  Keep us posted about possible donors!

[cariad]

Hey, Restorer, that sounds like a hugely successful appointment on balance. I am flabbergasted that this is UCLA that we are discussing.

Definitely don't get a fistula if you can at all avoid. Six months for a live donor transplant is a helluva wait, but much more in keeping with the UCLA I know.

I am just going to throw this out there should things not come together with you mother (I'm sure they will, though.) Switching hospitals and transferring time is easy!

The two blood typings is the law in California according to what I was told. One of the many Cal-specific and utterly fascinating laws that that state has to offer! Two vials must be drawn, AND, must be at least ten minutes apart. UCSF had everyone go in, get their bloods drawn, sit in front of the clock ticking away, and then return to get their bloods done again at the ten minute mark. They get to cover themselves legally, and you get twice the sticks!

You may already know this, but be sure to bring everything with you -packing, address labels, etc.- to ship off your monthly bloods for the list, because under no circumstances will they hand you the tube and let you do it yourself. It does not matter what the letter says or what the doctor requests. And yes, Cal labs lose blood. With stunning frequency it would seem.

This all sounds so good! Very happy for you!

[Restorer]

The expected six months to finish my workup and my donor's workup and then schedule the transplant is more like the average assuming she's a match. I don't know if that includes the scheduling woes of past donors and recipients. I was told it could be quite a bit faster if everything goes really well.

I'm going to try to avoid a fistula if at all possible. I just have to keep reminding my mom to hustle with her testing so I don't get a terrible catheter infection while I'm waiting. "Did you make an appointment to get those tests done? I can feel the bacteria creeping clooossseeerrrr..."  (But seriously, she can take as much time as she wants - I did.)

If my mom's not a match, then it'll be at least until next summer to schedule things if my other donor is approved. If that happens, my unit will probably be putting the pressure on me to get a fistula.

I'm back to the "hurry up" part of the "hurry up and wait!" 

If can I have the second blood typing done with my usual labs at dialysis, I can avoid the extra stick!

One thing that surprised me, but maybe it's not that odd: out of the 10 or 11 patients at the orientation, I was the only one with a possible living donor.

[Marina]

At  eval,  I was  sent to the  lab  where  they  drew  9 vials  from one  arm  and  1vial from the  other  arm.
This was  at  California  Pacific Medical  center  in Aug 2008.
My  brother  listed  at  UCSF they  drew  blood  one  arm  (I can't  remember how  many  vials)  and  sent   him out  to  waiting  aread  for  5-10 minutes.  Then he  got  called in again  for  the  other  vial.

I  get  my  monthly  labs  drawn at  regular  lab  and  also  bring  my TX  vial.  I  have  the  tech   initial  and  date   the  label  that  comes  with  vial  and  I DROP  it  off  at the  post  office.

Good  luck  with  the  rest of the  workup  testing  with your   donors!!!   

[RichardMEL]

Yeah the average is usually around six months. Why it is almost 15 months for my brother's evaluation.... and still continuing... I'll never know.