How to pass the transplant eval with flying colors

[Chicken Little]

My appointment is February 6th.  I'm going for the whole new system. Kidney & Pancreas.   

Any tips?  Things I should or shouldn't say? 

I wanna be added to the list now!   

[Rerun]

Chicken Little,

Here is a link on things "not to say"  Pretty Funny!

http://ihatedialysis.com/forum/index.php?topic=703.0

[jbeany]

I'm going in Feb 5, for the same reason.  I'm just filling out the forms they sent and one of the questions they ask is "What are your biggest fears or concerns about the transplant?"

duh - not getting one!

[angela515]

Just be positive and don't say anything negative or depressing.... Lol. Ask questions, be ompliant, dnt complain about the testing. There is tons of testing that has to be done, and to be honest it takes months for it to all be done.

[livecam]

Good advice Angela and by the way, congratulations!  Enjoy it!

[onesicpup]

I go on Feb.7th for my evaluation and I thought this thread might be the place to get some info. I know the appointment is scheduled for 5 hours, but what is it just blood work and interviews? What else happens? Any input will be appreciated. Thanks in advance.

[angela515]

You meat each person on the transplant team, social worker, surgeon's, nurses, transplant coordinator, and anyone else involved. You also will porbably watch a few movies and ask questions. So it's at least 5 hours long.

[okarol]

Jenna's evaluation included the coordinator, social worker, surgeon, nephrologist and also a representative from the financial office who went over the medicare and insurance information.
The first time Jenna was listed took almost 3 months. Later when we went for multiple listing at 2 other centers it took one day.
Looking back, if we could do anything differently I would have called more often to find out if they were missing anything, or what we could do to facilitate the evaluation. The first transplant hospital changed coordinators in the middle of the process and the new guy had no idea what he was doing. And they never told us - we were patiently, dutifully waiting, thinking they were contemplating listing Jenna, when in fact her file probably sat in someones inbox untouched for 2 months.
I think with the multiple listing it helped that I prepared a info sheet about Jenna, with the date on top. It had all her contact info, including email, her SS#, birthdate and insurance info. I also included the names and addresses and phone numbers of her dialysis center, her nephrologist, her primary care doctor, her urologist and also all her current medications. I also prepared signed release forms for the team to contact those people for Jenna's records. I brought 8 copies of the info sheet and gave them to each person we met with. It minimized errors and questions and made things a little easier.

[jbeany]

My appointment was Monday at Ann Arbor, Michigan.  I was hoping for a kidney-pancreas transplant.  It was a 5+ hour day of appointments - the vast majority of that time spent waiting for the next doc or social worker to show up. 
First thing (after a half hour wait for someone to actually show up) was a "educational seminar" - which didn't tell me much I didn't already know - except I finally got to see a pic of how a pancreas transplant is done, and where the donated pancreas is attached.  The transplant coordinator in charge of the class spent a lot of time stressing how important it is to keep all your blood tests updated every month while you are waiting, and to keep up other yearly evals like cardiac stress tests.  They did talk about how long it would be before you would be allowed to drive after the transplant - Up to 6 weeks! - and went over the schedule of how often you would be expected back for blood work in the first few weeks and months.  They also spent quite a bit of time on the subject of not skipping your anti-rejection meds.  (Duh!)  Then they sent me off to another waiting room.  They finally dragged me back into a small exam room, which I got very familiar with - I was in it for the next several hours.  The nephrologist came in first.  He asked my family and medical history, did a brief exam, and explained some of the criteria they would use to determine if I was a good candidate for either the kidney or the pancreas.  In terms of the kidney transplant, he thought I was a good candidate.  He did stress that everything hinged mostly on my cardiac health.  They will not put anyone on the list with heart problems, since the risk of dying from the surgery and anesthesia are too high.  All diabetics are required to do a complete echocardio stress test before any final decision is made about putting them on the list.  He also explained some of what they look for in a pancreas transplant candidate.  The fact that I have very good blood sugar control is actually a mark against me.  The pancreas transplant is a much riskier surgery than a kidney transplant, and the success rate is much lower than that for kidney transplants.  I may not be a good candidate for the higher risk since I have good control, and can tell when my blood sugar is dropping.  Someone who isn't aware of their own blood sugar level will be more likely to be given a pancreas, to prevent them from needing hospitalization with diabetic coma.  I've never had that problem in 23 years of being diabetic.  I asked him about my weight, and the issues I've discussed on here about needing a BMI of 30 or less to get on the list.  His answer - and I quote - "If we only put people with 30 or under BMI's on the list here in Michigan, we wouldn't transplant any kidneys at all."  Ouch - yes, we are one of the fattest states in the nation.  He said my weight wouldn't be a problem, because I carry it in a way that wouldn't interfere with the surgery.  (Which was a polite way of saying my ass is too big, but my stomach is flat enough.) 
When the nephrologist left, I waited a while more and the surgeon came in.  He was more focused on my weight than the neph - he thought I needed to lose more weight to decrease my chances of complications, but he agreed he could do the surgery on me at the weight I am now.  He wasn't very optimistic about the pancreas either.  He wanted to run blood tests to make sure that I really have Type 1 and not Type 2, no matter what age I was diagnosed at.  A pancreas transplant won't do a thing for someone with Type 2 - that's all about insulin resistance, and even if the transplant works, it won't cure the diabetes.  He was very interested in how much my daily insulin dose was.  Because it is relatively low, he suspects that I may be Type 2.  If he's right, then I'm not a candidate for a pancreas.  On the other hand, if I really am Type 1, the low amount of insulin I'm on will work in my favor, because a Type 1 who needs a huge dose of insulin won't benefit from a pancreas transplant either - a transplanted pancreas can only make so much, so in that case, the patient would just need less insulin, even if the transplanted pancreas was working perfectly.  My retinopathy and gastroparesis are points in my favor in terms of getting a pancreas - those kind of complications from diabetes would be stopped by the transplant.  The surgeon also stressed that everything depended on my cardiac results.  Both the neph and the surgeon also asked me how I was doing at dialysis.  The fact that I crash almost all the time apparently makes me a better candidate for a transplant.  Gee, soooooo glad to know there's a benefit to that.
On to the social worker.  Such a fun batch of questions.  "Are you religious?"  No.  She paused, in that psychologist trick of waiting for someone to fill in the silence.  I didn't bite, and she went on to the next question.  Other interesting questions - "Do you drink?"  "Ever done drugs?"  "Ever thought about suicide?"  "Ever had counseling for depression?"  I gotta wonder if they really expect honest answers to some of these.  I got a pleasantly applied grilling about my support system, which is more than adequate.  I live in a small town, and most of my family is still in the area - getting rides and help with chores is not a problem.  I've got insurance, so the money isn't an issue either.  NEXT!
I got to meet my transplant coordinator in another office - who may not be my coordinator if they actually decide to give me a pancreas - that's a different coordinator, apparently.  I got to sign a handful of papers, and then it was off to the medical tests.  Blood work (13 vials!), chest X-ray (Nipple markers - who the heck came up with that idea?  And could they make the stick-um any more annoying?) and an EKG.
My EKG came back with this unexpected notation.  "Sinus rhythm with premature atrial complexes.  Cannot rule out Anterior infarct, age undetermined.  Abnormal ECG."

They see prospective patients M,T,W, and meet on Thursday to compare notes and decide who gets to go on the list, who gets on hold (needs more info.) and who isn't a candidate.  It will take them another week or so to contact me after that.  Then I can find out if they will bump me immediately because of the EKG, or if they will schedule a full cardiac stress test to find out if my heart problems are bad enough to keep me off the list.

[goofynina]

Wow Jbeany, you had one helluva day didnt you?  At least that part is over    Thank you so much for that detailed description of your "eval"  Now we know what to expect.  I am glad they agreed to do your surgery at your current weight, I AM MOVING TO MICHIGAN PEOPLE...   Please continue to keep us posted girlfriend 

[kelliOR]

Jbeany,

Would you receive a kidney and a pancreas at the same time?  I have heard that some K/P recipients have gotten a kidney first.  True?

Kelli

[kitkatz]

Same things happened to me here.  God I hate this damned process! Alost sound slike we had the same appointment except for the EKG and the pancreas talk.

[jbeany]

Jbeany,

Would you receive a kidney and a pancreas at the same time?  I have heard that some K/P recipients have gotten a kidney first.  True?

Kelli

They prefer to do them together.  Less risk of complications with just one surgery, I suppose.  And getting a live donor would possibly mean not getting a pancreas at all - if the kidney was working, would you want to take the risk of messing it up with another, much more complicated surgery?  I wouldn't want to take the chance.  It would mean a second round of increased doses of steroids and immunosuppressants to treat the new pancreas, and that might destroy the functioning kidney.

[melshell]

jbeany- I laughed hysterically about the big ass, flat stomach remark!!! My eval is 6/25/07 -- got the call today about the appointment- of course I've been devouring everything written about evals on the site since!! The "what not to say at your eval" thread was very refreshing- a good read!! Thanks for your very detailed account about your eval. I am beginning to worry a bit though...the social worker, and psych stuff, how much credence does the team give to those evals? I mean, say if I'm a back slidden (<-is that a word?) Christian, I drink socially, and I experimented with dope as a teenager? What if I had a complete nervous break down when my Father died 10+ yrs. ago and I spent some time in the "rubber Ramada"? Who honestly hasn't contemplated suicide? Should I just NOT tell them any of this? How would they prove it one way or the other anyway? I REALLY don't like psych stuff!! Also, aside from ESRD, I'm a Type 2 diabetic, was hypertensive pre-dialysis, and am not a thin gal!! O.K....I think I'm losing it, I've got a couple of weeks before the eval, and in that short time I've got to quit smoking and lose 40lbs., so why am I even stressing about the psych stuff right?

[jbeany]

Melshell, for the social worker and the psych questions - I just made it a point not to volunteer anything that wasn't specifically asked.  Think of it kind of like testifying in court - yes or no answers and don't elaborate.  Don't get sucked in by the long pause after you've answered the question - you don't have to fill it in with details.  I stuck with the truth - I just didn't give any details.

[melshell]

THANKS jbeany!!! I'll try not to lose it completely before the eval. -I finally called a friend and vented for a good hour (yes! I know, GOOD friend, eh? LOL!) and I've calmed down considerably!!  It's just one more thing I gotta do, the eval., just gotta get it over with! Thanks again for the advice!

[kitkatz]

Do not worry about the psych evaluation, the waiting will make you crazy enough!

[okarol]

Keep smiling. 

[Chris]

Just realized I can't remember what I went through to get on the list. Just fragments of the process. I remember the bad things that happened through the process and of waiting.