The first thing I did when I was told I needed a kidney transplant was start to research all about the process. Online they make it seem so peachy and easy. My experience has been anything but. The first and most valuable piece of advice I got my my nephrologist at the hospital was you call and you don’t stop calling until you get an appointment.
Unfortunately, this process is not something you can do all on your own and it requires a lot of back and forth.
I am currently on the waiting list at Wake Forest Baptist Hospital, and I have been working with them for my living donors. According to their website they’re supposed to have an “expedited process” for people with living donors; and they give a general timeframe of three months waiting for those without living donors. (Here’s the link for those of you who want to see for themselves: http://www.wakehealth.edu/General-Surgery/Abdominal-Transplant/Transplant-Surgery.htm )Let me tell you right now this is INCREDIBLY inaccurate. First of all my paperwork was sent in on February 8th, (I remember this date specifically because it is my moms birthday) my dialysis center received a notification back that it was received and that I had been “accepted” to be a patient. Well after a few weeks of calling around to see what the next steps were I finally found out that my application had been “lost” and I would have to re-apply and be approved by a surgeon again.
So finally after re-applying I as well as my dialysis clinic got a second letter confirming my acceptance and in that letter they stated they would be in contact with a date for my education class shortly. Well after waiting weeks I called and called and called, and finally after waiting MONTHS (yes months) I called and threw fit because my most likely living donor (my sister) needed to have the surgery over the summer, as she works at a university and it was already April. Finally they rushed to get me into to the education class, which they acted like a big deal.
We received a packet in the mail which detailed all the information you need to bring with you to the class, all the appointments you need before you get a transplant, as well as some forms you need to fill out and bring with you. So I went around collecting all my medical records (getting my blood type was ironically the hardest information to find, although I had received a blood transfusion months earlier and I have had multiple surgeries) and showed up to my education course with everything ready and 4 living donors.
When I arrived at the education course I was shocked. Not only did most people not fill out the forms that were mailed to us, only 8 out 20 people showed up for the course. YES you read correctly 8/20…. for those of you bad with fractions that is 40% as in less than half. So 12 people didn’t care to come to an appointment for a literal life saving surgery. The best part of all is they didn’t even attempt to call people in to take up the vacant spots, and it makes me wonder how many times could I have been in this “always full” education course in the prior weeks when they lost my paperwork and I was waiting for a spot to open up in a course.
Well on the day of the education course a very nice nurse saw that I had all my stuff together and came in halfway through the course and said “we had an appointment open this afternoon would you mind staying after so we can test you” obviously I was like DUH ILL STAY OBVI IM TRYING TO GET THIS SURGERY LIKE YESTERDAY. So we stayed and I got all my testing done except for the stress test which I had to go over to the hospital to get, and they scheduled that for me before I left and gave me instructions, and directions so we could return in 2 weeks for that.
After I completed that testing for my living donors began, and if I thought the initial application and education process was a mess little did I know what I was about to face. First of all as the recipient they don’t tell you ANYTHING. Literally you don’t know who they’re testing, or if they’re testing anyone, and the living donor coordinator literally won’t even talk to you. I slightly understand this, they’re the advocate for the donor, but they should at least be able to tell your coordinator what the heck is going on without revealing any medical information. Like hey, one of your donors was ruled out but you have X more on your list.
As the living donor, they will completely forget about you if you’re not right on top of it. Luckily for me, I have known all my living donors and they are pretty good about keeping me in the loop as to what is going on. Multiple times I have had to call, as well as my living donor, to complain that nothing has gotten done or nobody knows what’s going on at all. Three to six weeks go by and nothing has been done and they offer no explanation as to why.
So slowly donors get ruled out and three months turns into 11 months with no end in sight.
Keep in mind during this whole process they wanted me to go inactive on the waiting list for a deceased donor, which I did initially but after dealing with them and seeing how incompetent and slow they were I decided to go back active as I am fairly certain I would never get an update to go back active on the list, and therefore never would be active.
So if you’re waiting to get a transplant, strap in it’s a bumpy ride, and make sure you’re ready to annoy the transplant center (I literally recommend calling once a week so you know they’re working on it).
Also, if anyone who has any pull is reading this PLEASE change your policies so recipients can know something and we aren’t just sitting here in limbo waiting, also Wake forest needs to consider firing all of their administrative staff, or hiring more if they’re seriously that bogged down that they continually lose people’s medical records.
Lastly, if you want to donate me a Kidney, or are willing to be a paired match (basically you donate someone else a kidney and their donor gives me a kidney… more information here: https://www.unos.org/donation/kidney-paired-donation/ ) please contact Colleen Sheehan at (336)713 – 5675 or email@example.com and say you are interested in being a living donor for me, Tracy Self, birthday 4/2/91.