During my time on dialysis, I was also preparing myself for a kidney transplant. As I write this post I am reminded of a girl that I had worked with years before who had received a liver transplant. I remember wondering how she got there? How much her life would have changed when she found out she needed a transplant. Was she young? How did it happen? I remember thinking she must have felt so sick, and I couldn’t picture how you could go through something so life changing and just go on living your life. Her and I weren’t close, but I admired her. She seemed so free, and happy. She seemed to enjoy every moment. She later passed away, but I remember that she always had a smile on her face. So full of life.
How does one prepare for transplant, you ask? Tests. Lots and lots of tests. Stress tests, MRIs, PET scans, blood work and more blood work. A lot of waiting for appointments, fasting, many hours in a hospital. This was all completed in between dialysis runs. Because it was all booked through the transplant team they were good about booking around the dialysis schedule. As I think back to it now, the testing and all the waiting, it doesn’t seem as bad as it sounds. I needed to complete all the tests in order to get on the transplant list. So we started, in November 2016.
Getting on the transplant list will get you in line for either a deceased or a living donor. A living donor is ideal because the organ tends to last longer (20 years they say). A deceased donor organ would be in the 15 year range, although there are exceptions to both rules. At any point, a directed donation work up can be started. That means that someone steps up and says “yes, I want to donate my kidney to Kari.” Well folks, that person was my mother. I hated the idea of putting my mom through all the tests, and then potentially a surgery. I don’t know about you guys, but have you ever tried to interfere with a mother saving her child’s life? It’s a force to be reckoned with.
Now my tests weren’t nearly as grueling as my mothers. More tests, more appointments. Physical health, mental health, family history and never ending blood work. I still to this day hate that my mom went through all of that for me. It really was the best shot, coming from a relative. Around June of 2017, we got the official call that she was a match. We both cried. This could all be over with soon! One more test to go, but we were weeks away from getting a surgery date. I had plans to be back at work before Christmas!
Well, as it turns out, that last test was the one that decided she couldn’t donate her kidney to me. My mom is fine and healthy, but they like to be really sure they’re not going to jeopardize the donors health. I was driving when I looked down and saw my parents number on my ringing phone. My throat went dry. Why were they calling me in the middle of a week day? Something is wrong. When I arrived at my destination, I called them back. My dad picked up and said, “Mom got her test results back today. She’s going to be fine, but… maybe you should give her a call when you get home.” The next few hours were a blur. I can’t recall driving home, but I can picture me settling down in the bedroom with the door closed, and dialing my parents number. (Let’s be real, I pressed their name on my phone, who remembers phone numbers these days??). My mom picked up, but I’m not sure she said anything. Mom? Are you ok? She told me she couldn’t be my donor. It’s ok, Mom. I can do this. I’ve been doing this, and I’m fine. It’s not my time just yet. I love you so much, and I want you to focus on this little hiccup for you.
What I didn’t know yet was that my road to recovery was going to be very drastically different than what the “So you need a kidney transplant” booklet says, and I 100% know that I would not have been able to do that part without her.
So I decided that if i was going to be on dialysis a little bit longer, then I would get a dialysis catheter put in my stomach, so I could do paratenial dialysis from home. It runs for 8 hours while you’re sleeping, so I could potentially go back to work while receiving treatment every night. On August 25, 2017 I had the surgery, and I was slated to start on September 11, once the incision in my stomach had healed. While I was healing from that surgery, I received a letter in the mail. “You have been placed on the paired kidney/transplant list.”
I guess I’m settling in for the long haul and trying to get back to a normal life
Kari's Kidney 