Transplant Evaluation

[thh21]

I am going on Thursday to the University of Alabama-Birmingham for transplant evaluation.  I am very nervous about it.  I have been told where to go and what to do, but been told nothing about what to expect.  I understand the evaluation is very intense and very thorough.  I would like to know more about what procedures I will undergo, the testing involved, etc.  I would greatly appreciate any info you may have.  I think the apprehension of the unknown is making my sense of dread worse than it has to be.





EDITED: Moved thread to proper topic - Sluff, Moderator

[angieskidney]

This is a good thread that might help you: http://ihatedialysis.com/forum/index.php?topic=703.0

[ahamner]

I am going on Thursday to the University of Alabama-Birmingham for transplant evaluation.  I am very nervous about it.  I have been told where to go and what to do, but been told nothing about what to expect.  I understand the evaluation is very intense and very thorough.  I would like to know more about what procedures I will undergo, the testing involved, etc.  I would greatly appreciate any info you may have.  I think the apprehension of the unknown is making my sense of dread worse than it has to be.

I went to UAB for my transplant evaluation in May of 06.   The purpose of the evaluation is to assess your general health condition and to profile your blood type and antigens so that it can be compared to potential available kidneys for transplant.  The evaluation consists of lots of routine medical tests and interviews with the transplant unit team.   The tests you will have depend on what problems you know you have and any that might be indicated by the screening tests.  The evaluation itself is nothing to worry about.  The desired outcome is to be determined to be healthy enough to be put on the transplant list or to receive a donated kidney.

During the evaluation they will explain the benefits of a transplant as a treatment for CKF as well as the required medications you will have to take post transplant to prevent rejection.  In all I was in the Hospital for two and 1/2 days with a lot of that time spent waiting.

I received my transplant at UAB in December.  That was a very unexpected surprise since I was told to expect a four to five year wait for individuals with my blood type (AB). 

I wish for you the same good fortune I have had so far!

[angela515]

My transplant eval was about 4 hours long. Basically I went in, and there is usually about 4-5 other patients there for the same reason. We started out watching a movie about kidney failure, dialysis and transplants. You will see everyone from the transplant team individually. Transplant Coordinator, Transplant Social Worker, Transplant Dietician, Transplant Surgeon, Kidney Doctor, and anyone else who may be a part of the team where you live. You will sign a lot of papers and fill out things... You will also see a Physcologist, for your mental health.

Once you do that, the Transplant Coordinator then tells you when she gets the paper from the doctor saying what test you need done, she will then start scheduling them and contact you with dates and times. The tests vary for each person depending on your medical problems. Some common tests they do for everyone are blood tests, chest x-ray and EKG. Depending on results of those and what other medical conditions you may have they will schedule you for other dr's and other tests.

Once you complete all the tests and passed to there requirements, they then place you on the transplant list. Once placed on the list they will send you a letter stating the date you were placed on the list and once a month they will draw your blood for the transplant list, to keep a current level of your PR and blood type and such. If you go to in-center dialysis, they do it with your monthly labs there. If your on PD, they do it when you come in for your monthly labs. If your not on dialysis yet, you will come in once a month for it to be done.

Completing all the testing sometimes can take months, or years... depending on if your passing them or not and how many you have. So be patient and dont expect a next day listing.

Good luck, hope that helped some.

[angieskidney]

You also have to be under a certain weight, right?

[boxman55]

you do have to be under a certain weight but not sure what the range is. Boxman55

[goofynina]

You have to be 80 kilo's and under 

[angieskidney]

You have to be 80 kilo's and under 

That's 176lbs? are you serious? That has to be just the women's weight!!

[angela515]

Im sure the weight also depends on the persons height. 176 lbs for me would be WAY over weight. Im only 5'0". Luckily for me i never had to lose weight for a transplant... i weighed 135 before transplant and now 126.

[angieskidney]

Im sure the weight also depends on the persons height. 176 lbs for me would be WAY over weight. Im only 5'0". Luckily for me i never had to lose weight for a transplant... i weighed 135 before transplant and now 126.

Ya I weighed 97lbs but the transplant brought me up to 130. This time around .. well right now I am at 141lbs. But I am 5'5".

[melshell]

Thanks to all for the insightful information about the transplant evaluation process!! I just got the call, evaluation is set for 6/25/07 @ 7a.m., and the intake coordinator I spoke with didn't appear to appreciate me asking her any questions -she hurriedly got me off the phone after confirming my information and told me that a Nurse would call me a week in advance to remind me of the appointment. (Actually she acted a bit miffed (sp?) when I balked at the early appointment, but a 7 a.m. appt. means I'll have to get connected by 5 p.m. the night before (PD) in time to get disconnected and make the 2 & 1/2 hour drive to get there on time...) She very curtly stated that it had to be an early appointment because it would be an all day process, whatever that means!! Guess I'll get more info. when the Nurse calls...?? Of course my mind was reeling with questions, so I rushed right to the computer and logged on to IHD!! Thanks again to everyone! I'll keep ya posted on the outcome!

[Sara]

You'll likely be given a schedule of appointments for the whole day and days to come (it will bring back memories of high school  )

[okarol]

Thanks to all for the insightful information about the transplant evaluation process!! I just got the call, evaluation is set for 6/25/07 @ 7a.m., and the intake coordinator I spoke with didn't appear to appreciate me asking her any questions -she hurriedly got me off the phone after confirming my information and told me that a Nurse would call me a week in advance to remind me of the appointment. (Actually she acted a bit miffed (sp?) when I balked at the early appointment, but a 7 a.m. appt. means I'll have to get connected by 5 p.m. the night before (PD) in time to get disconnected and make the 2 & 1/2 hour drive to get there on time...) She very curtly stated that it had to be an early appointment because it would be an all day process, whatever that means!! Guess I'll get more info. when the Nurse calls...?? Of course my mind was reeling with questions, so I rushed right to the computer and logged on to IHD!! Thanks again to everyone! I'll keep ya posted on the outcome!

Each time Jenna was evaluated it took the whole day. They started with labs. Then we had numerous appts. with the transplant team members:  the nephrologist, surgeon, social worker, financial coordinator and transplant coordinator. Then she had to have an EKG and chest x-ray. After that they sent us off to get records or appointments to bring all her dental and gynecological records up to date.

[melshell]

okarol- I know I read somewhere that you compiled a family/medical history as well as other info. to have on hand at your eval appt. that was beneficial; could u list an outline for me? I thought I may do the same--sounded like it could cut down on alot of repetitive questions I may be asked if I had something on paper I could just hand to them...THANKS!!

[jbeany]

I took a stack of info sheets - my name, contact numbers, doctors and their numbers and addys, dialysis info - center, days, current time on, as well as the list of every med I'm on. Then when they askedabout it, I could just hand them a copy.  I wish I had done another with family medical history - I would have been able to give them a much better one if I had thought to type it out before hand.  I have enough trouble remembering dates and medical problems for my own long drawn out medical history - there's no way I remembered everything about the entire family.

[okarol]

okarol- I know I read somewhere that you compiled a family/medical history as well as other info. to have on hand at your eval appt. that was beneficial; could u list an outline for me? I thought I may do the same--sounded like it could cut down on alot of repetitive questions I may be asked if I had something on paper I could just hand to them...THANKS!!

Ok here's an example of what I did. You can modify it for what works for you. I brought these whenever we went to an appointment and they'd add them to Jenna's chart. It minimized the errors and questions. And it helped me remember the info when they asked!

Information current as of (Date)
Name
Address
City, Sate Zip
999-999-9999 home phone
999-999-9999 fax
999-999-9999 cell
999-999-9999 work

Soc. Sec. # 888-88-8888 / DOB 01-01-2000

Insurance Info: Number, Policy, Company and contact info



Nephrologist

Dr. Name               Direct 999-999-9999       e-mail
Hospital                   Office 999-999-9999
Address                                  Fax 999-999-9999
City, State, Zip

Transplant Center


Dr. Name               Direct 999-999-9999       e-mail
Hospital                   Office 999-999-9999
Address                                  Fax 999-999-9999
City, State, Zip

Dialysis Center


Dr. Name               Direct 999-999-9999       e-mail
Center                           Office 999-999-9999
Address                                  Fax 999-999-9999
City, State, Zip
Patient's Dialysis Days/Time


Primary Care

Dr. Name               Direct 999-999-9999       e-mail
Hospital                  Office 999-999-9999
Address                                Fax 999-999-9999
City, State, Zip

Emergency Contact

Name                             Direct 999-999-9999       e-mail
Relationship                  Work 999-999-9999
Address                                   Cell 999-999-9999
City, State, Zip

Allergies: List
Surgeries: Brief Description and Date

List current medications and dosage:

[goofynina]

Okarol?? are you sure those numbers are right? i tried calling you at 999-999-9999 and it said it was disconnected, hmmm, maybe i should try again     

[okarol]

Okarol?? are you sure those numbers are right? i tried calling you at 999-999-9999 and it said it was disconnected, hmmm, maybe i should try again     

Hey, quit crank calling me!
 

[Wattle]

You guys have soooo many hoops to jump through. We don't have any of it. A few tests and thats it. 

Yes, i know we have a lonnng wait. Maybe that makes up for it but they really give you a hard time with all the tricks you have to do.   

Go get them melshell. Get on that list   

[paris]

All the tests I went through were for my benefit. They told me they weren't trying to NOT give me a kidney, they were making sure there were no other problems. If they found anything, they would "fix" the problem and then go forward. I am glad they thoroughly checked everything out to give me the best chance at keeping a new kidney.  The process took awhile, and I was frustrated at times, but I will jump thru any hoops to live a longer life.   Is there a hoop jumping smilie?

[kitkatz]

I am still going through the hoops a year later! I hate this crap!