Oh man, so much has happened since my last blog post. An amazing friend in the transplant biz read my last post and suggested I contact my nephrologist to ask to start the transplant process. My nephrologist responded very quickly and it’s been a whirlwind since. UC Davis had an opening the following Monday to do the evaluation at the transplant clinic. Eric was out of town that day so I went by myself. They want the recipient’s support person there at the evaluation, but since we’ve done this before, we could just reschedule the appointment with social worker. They just want to meet him and make sure he exists. Anyways, the evaluation included a meeting with the dietitian, transplant information class, doctor evaluation and a meeting with a social worker. This all went pretty quickly. It was mostly just waiting around for the next appointment.
Today I did some super important blood work for Blood Source called HLA matching. Basically, this identifies my antigens and can be matched with my potential donor’s antigens. I was super excited to get this test. Now if anyone has already had their blood test done, they can see if anyone of those people would have any matching antigens.
So far with I’ve done a bunch of required testing already.
- Transplant Evaluation
- Echo cardiogram
- Pap Smear
- HLA Test
I have a mammogram tomorrow and our rescheduled appointment with a social worker on May 11. I just need a stress test and a psych exam and I’m all done. Seriously, this is all going so fast. I spoke with a recipient coordinator and she wants all of my testing done by July 3. Hells yeah I’ll get it done!
Okay, so here’s what I know about the donor. There are 17 potential donors who signed up on the UCD website. Holy fuck!!!!!! 17!!!!!! That many people want to do this for me?!?!?!?!!? I am in awe. I tear up even when I think about it. It’s just crazy to believe. But the number is all I know. The recipient coordinator and the donor coordinator don’t know what is happening with each other’s patients because of confidentially reasons. So I won’t know anything until I have a match. It’s exciting and scary all at the same time. Since I’m out of the loop on the donor stuff, I just wait.
Here’s how I’m feeling. It looks like my kidney function is holding steady. That’s good, but that number doesn’t mean much to me. How I’m feeling is what matters. I have some good days and some really bad days. My hemoglobin is super low so I will be starting on epogen shots. I’m hoping this starts helping my energy level. I’ve had these shots before so I’m hoping they are just once a week. No big deal. Just a tiny needle in my stomach for a few seconds. The last two weeks I’ve had much more fluid retention. My post transplant nurse let me increase my lasix dosage. I’m now taking 60 mg of that. UGH! I’ve been taking that dosage for a few days now and I don’t feel like it’s helping. I’ll have to message him again and let him know. It sucks when I feel like I don’t eat very much throughout the day, yet by the afternoon my clothes don’t fit anymore. It’s uncomfortable and just wears me out. And I get horrible heartburn. I can not eat for hours and then out of the blue I get heartburn. What. The. Fuck? I still get dizzy and nauseous throughout the day, but that just seems to be the norm for the last few months.
The good news is I felt somewhat normal enough to get some workouts in. That was good for my sanity. I’m hoping I can get some more workouts in this week too. At least for the sake of my family. I think they all cheer behind my back when they see me loading my bike up in my car.
That’s the latest. I’ll keep on posting since it’s just the easiest way to keep people in the loop. I really can’t believe how many people even read this thing. I do really appreciate it and of course all the support and love we’ve been getting these last few months. It’s just amazing.