Post-kidney donation update — a week later.
At my aunt’s birthday party on Sunday with my siblings and most of my US-based cousin’s on my mom’s side. It was nice to wear something normal, and not sweatpants, and leave the house.
Hi friends and family! I have been meaning to update you and I have so much to say! I’ve had many experiences and emotions since you last read anything on this blog. I’m glad I had Diane write and post about my experience. Not only did I not have capacity then to write, I still have very limited capacity to write now.
So I decided to write from the heart, tell you a few things, and not worry about capturing most of the experience or even getting the tone right. I’m going to be open — I will talk explicitly about intimate medical issues, as well as very difficult emotions — but there’s enough to say that I won’t cover much of what happened and perhaps you’ll have questions. Feel free to ask and I can respond directly or write more in a future post, as I am able.
What you read in the first two posts after the surgery was the general positive and smooth experience I had at and immediately after surgery. Since then, it’s been rocky and I’ve experienced a lot of suffering.
Prior to donating my kidney, many of you told me that I am brave, generous, and inspiring.
I am starting to understand why you might say that.
The first day+ of recovery felt great, and after that, several challenges emerged (there were likely more that I do not specifically recall) and peaked on Friday morning:
First, catheters: these are things that are put up my penis and into my bladder to drain my urine. It is uncomfortable, a little painful, and invasive to have one inserted. I don't have a specific worry about what might happen with having a catheter in, though I suspect my penis and urinary track are more vulnerable with it. In general I have fear of people doing invasive things with my penis.
On Thursday, my Foley (one that stays in for some time) catheter was removed, which was uncomfortable.
Subsequently, I was generally unable to empty my bladder. This is a common problem with kidney donations (and perhaps major surgery)
The hospital staff put a straight (temporary, that they remove immediately) catheter to drain the urine in my bladder. They suggested they might do it again, or insert a Foley catheter for me to use for a few days. I requested to not have that, and they didn’t.
I was aware of being separated from my community and being awake and alert during Thursday night / Friday morning hours
My original painkillers were wearing off
There were a few beeping machines that toned emergencies numerous time. I felt a lot of anxiety hearing them.
I was away from visitors, who in general came a lot
I was awoken/disturbed regularly for tests and medications.
Only one of the medical issues (high Creatine Kinase) seems like it could be serious. The surgeon was not very worried about that, either.
Here’s how I experienced it: I had an existential crisis on Friday morning. I felt like I was in a deep pit of despair, only seeing darkness. Everything about my life, my body, my relationships, my purpose, my beliefs were held in a place of questioning, curiosity, and challenge. It was a tender a dark place to be. I cried a little, I wanted to cry more. I plan on speaking to the kidney donation social worker, my therapist, and my friends about my experience (and I have spoken to several friends about this already).
Later on Friday, my mood lifted significantly, I had visitors, and I was discharged from the hospital. My uncle brought me to my cousin’s house in Woodbury. During the ride, I urinated on myself. While I was unable to empty my bladder voluntarily, it was so full that it came out involuntarily.
I have been at my cousin’s since Friday (December 22). My cousin and his wife take care of all of my physical needs kindly and thoroughly. Their two year old daughter is a delight. Along with my aunt’s birthday gathering, my cousin’s sister visiting from Georgia, my cousin’s parents (my aunt and uncle) that were here until Monday, I’ve been around family constantly and I’m grateful for that.
My urinary problems continued. I had a constant feeling of the need to pee, but when I attempted to, I was only able to pee a little. Consequently, I had to go to the bathroom very frequently, including at night. Eventually, the medical staff deemed it necessary to put a catheter back in and did so yesterday (Tuesday, December 26). As I mentioned above, I feel a lot of anxiety around this, and some pain and discomfort.
Otherwise my recovery from the incision has been smooth. My energy levels have increased significantly, as has my appetite, and my need for pain killers has gone down.
The part of recovery that has gone the best is the support I have received from everybody. Family that has fed and housed me, friends who have transported me, talked to me, given informed medical advice, and sat with me as I cried. I am grateful for you. The hospital/surgery/medical staff have been universally caring, thoughtful, and helpful.
I also heard that the recipient's surgery went well! I was happy to hear this, though most of my attention was and is on my own healing and wellness.
I don’t have big picture feelings or an evaluation of my kidney donation. My focus is on my health and well-being, and that’s all that I have capacity for in my heart. Somewhere down the line I will circle back and ask myself what this all means and how I feel about donating a kidney.