I thought it could be helpful to share my experience at UCLA for my kidney transplant evaluation in case you or a loved one is about to have their appointment. I know I didn’t know what to expect, and I would’ve loved some more information!
This appointment will be broken up into 2 sessions, the morning and the afternoon. In the morning you are in a group with other patients and their loved ones (or support person), and then in the afternoon you are meeting with the team individually (with your loved one).
In the past they said they used to break this up into 2 different appointments which wasn’t really the best as far as it feeling personal or as far as it feeling like an efficient use of people’s time knowing what it takes to get to the appointment. The initial session (which is now the morning session) was in an auditorium and would be for about 70-80 people at once. And then people would come back at a different time to do what is now done in the afternoon session. While a lot of information is presented, I don’t feel like it’s too much that you can’t handle it in a day. Having 3 kids at home and the center being 200 miles from our home I’m all on board for this model.
You will get a binder at the start of the day that has all the slides from the presentation, along with other useful information about the kidney transplant process.
The morning session of your UCLA initial kidney transplant evaluation appointment:
Be sure you are on time. I actually drove up the night before and stayed at the Luskin Conference Center. It wasn’t cheap, but I didn’t want any unexpected traffic or stress with it being my first time at the facility. Parking your car is an additional $32 which seems crazy, but I was able to leave it there in the morning and just walk to the Kidney Center which was nice. It was only about a 10 minute walk.
My appointment was scheduled at 9:30am which is when they opened the conference room doors and the presentation started at 10am. This initial session will be with a group of up to 10 other patients and their loved one or support person. The staff will collect your paperwork (that you were sent in the mail) and that is followed by an hour or so lecture going over the reality of what a transplant is and isn’t. They really want you to understand what life is like after a transplant and ensure that you are going to follow up with all the medications, doctor visits, etc. This is also where they explain the process of getting a kidney more thoroughly, understanding how they find matches, how the waiting list works and what types of kidneys you can choose to accept. (One side note to eliminate confusion, just by showing up you are not on the list yet. After your appointment they should know in about 2 weeks if you are eligible to get on the list or if you need follow up work done before you can get on it.)
After the first presentation a social worker comes in for about 30 minutes to share her side of things so you understand what they are looking for as far as the support/care you will need after the transplant.
Next is lunch. The cafeteria is close, and I thought had a decent selection of food options. There was a salad bar, a limited El Pollo Loco selection, Hamburgers, Pizza, and lots of other options.
The afternoon part of your UCLA kidney consultation:
We had an hour or so for our lunch break, it was nice to get outside and walk a little after being in the meeting all morning. In the afternoon you will no longer meet as a group, but you will meet 1:1 with different staff.
So in the afternoon, (this was my experience and your’s may be different based on specific health conditions)…
First I met with a nurse. She asked about my history and answered any questions I had so far. She also did a simple check up.
Then I did an EKG.
Briefly the nephrologist came in and asked a few questions about my health and history.
Chris (my husband) and I met with the social worker talking about our plan of care for during and after the transplant.
We met with the coordinator who gave us a follow up plan of action and also gave us the information for who my personal coordinator will be with the contact information for her. (Part of follow up stuff for me is to schedule a stress test with my local doctor, fax a document, etc…that kind of stuff.)
They did my lab work- literally 14 tubes of blood.
Other patients may have met with a heart specialist, done other types of monitoring, etc…based on their health conditions.
Then we were done! We happened to finish around 3:30pm, but they say be prepared to stay until 5pm.
I hope this helps in giving you somewhat of an idea of what to expect at UCLA. Obviously things will be slightly different for everyone and protocol can change all the time, but this was done in December of 2018.
I was really impressed with the facility and the staff. If you are looking at UCLA for your transplant you will appreciate knowing they are ranked top in the USA for number of transplants each year as well as in success rates. Which is awesome to know, especially knowing they also get sent tough cases from the surrounding areas.
I’m in a unique situation in that I don’t my transplant right away, but I am just getting things in order so that when I do I will be ready. I’ve been in the 23-28% range for the last 5 years, but my last 3 labs this year (I do them every 3 months) have all been 21% which is lower than previously. You have to be below 20% to go active on the list, and because I have one lab result with my GFR at 16% I can get on the list now to at least start accruing time.
It’s that fine line between preserving the kidneys I have for as long as I can, but also having things ready so if my GFR drops quicker we are ready to move forward and hopefully avoid dialysis. I will continue with all of the naturopath strategies I’ve been following to hopefully prolong the transplant as long as I can. I found a Chinese doctor new to my town that can recreate the formula I got in China when we first learned of my problems, so I am hopeful to see how that may help to slow the process and at least boost my energy levels in the meantime. I’m also unique in that this is a family genetic thing, I have no other symptoms than low kidney function (no diabetes, high blood pressure, etc…) so my case is different than those who also have other health concerns along with the kidney disease.
I send love and hope to you as you are on your journey with Kidney Disease.