Nephrologist is refering me to the transplant center. Whats next.

[skuch65]

I am getting refered to the transplant center.  I will be getting a packet in the mail and was wondering what is in the packet and what happends next after the packet?  I'm guessing a lot of testing.  After turning in this packet what kind of time frame am I looking at for all the testing and whatever else they do before I am on the transplant list? Thanks for any info.

[okarol]

Related info here http://ihatedialysis.com/forum/index.php?topic=2607.0

[Romona]

If you aren't doing the required testing at the transplant hospital, get copies of all the results. Don't trust your hospital or lab with geting the results to the coordinators. I even hand delivered results and they were "lost".
The packet will probably have some basic questions and answers and you may be required to attend a class and meet with the various coordinators. What hospital are you going to?

[skuch65]

Thanks.  I am being sent to Intermountain Medical Center in Salt Lake City.  I believe its on 5300 South and State Street.

[jbeany]

Be prepared for a lot of" hurry up and wait" time.  My transplant hospital did things in groups.  They had a group of patients run thru all the tests, meetings and orientations on the same day.  Then, when all the results were in, they got all the transplant team together to decide who passed and who failed.  Eventually, they sent a letter requesting more tests.  I did those, and got the results sent, and waited some more.  They dont' rush much of anything, from what I've seen.

[paris]

jbeany is right.  You will learn a lot of patience during the evaluation process.   The packet has information on what you will go through, and forms to fill out.  Each center is a little different from the next.  Hopefully, yours will be quick and get you through the evaluations and testing fast.  Keep us updated 

[dyannalw]

I have to go to St. Luke's in Kansas City MO in the middle of June.  I am really nervous about what all is involved.  IHD is really helpful at taking some of the fear of the unknown away and I thank you all for that.  I am suppose to get a packet in the mail but haven't received anything yet. 
So far medicaid won't pay for me to see a dietitian. I really need to see one.  I have no idea what I'm suppose to be eating or not eating.  I am diabetic also and I know a little about the diabetic diet but not much. 

Dyanna

[kellyt]

On my first visit to the transplant clinic (Oct 2007) we had a class to talk about what's going to happen.  Then one by one we spoke with our coordinator, social worker, dietician, and finally a physician.  They drew like 16 tubes of blood and we were done.  It was an all day thing, as they had their regular patients in that day, as well.  Then I started receiving phone calls telling me about tests and appointments and such.  It just went from there.  I would have been all done with testing in about 3 months, but I ended up having to have a tooth pulled and my dental insurance was maxed for the year so I had to schedule the pulling for January of 2008.  I was finally done with all testing and activated on "the list" on Feb 13, 2008.  And, yes, teeth are important, so if you need some work done they probably will require it be done before being listed.

lab
heart
teeth
gyno
you name it. 

It wasn't that bad.  The end result is well worth it.   

Good Luck!

[pelagia]

Kelly's outline of procedures sounds a lot like what my husband went through.

[Wenchie58]

Lots of paperwork. Lots of doctors. Lots of poking around.  My clinic worked with me and I did ALL my testing in two full days.  Heart, lungs, stress test, OB GYN and general physical day one.  Endoscopy and colonoscopy day two.  I got a release from my dentist...and 3 weeks later was placed on the list.  I had to ask to "bundle" my appointments..but everyone was cooperative and though tiring it went very well.  Fifteen months later I got a transplant.
Hold on...it's a rollercoaster ride. But OH SO worth it.  Best of Luck!

[kellyt]

I didn't have to do a colonoscopy!       Thank goodness!  Is that age determined?  You're not older than me, are you Wenchi?

[Wenchie58]

I'm older than most!!!       I just dont act it...and yes, I think I am older than you Kelly!

[kellyt]

I checked and you are older than me, but not by that much! 

[Wenchie58]

Oh cool...maybe you're gonna catch up!   

[kellyt]

Well, I'm not going to rush to catch up, but I'll get there soon enough.

I can't wait to meet you in Vegas, Girl!   PARTY!

Well, to be honest I'm not much of a partier.  I AM older than you in that respect.  But I'll stay up late with you and walk you back to your room if you need it.