I'm A Kidney Donor (to be)
In late 2018, my dad was diagnosed with chronic kidney failure. Meaning he would need a kidney transplant. The moment I found out, I knew I wanted to be the one that donated. Months later, the communication between my parents and the transplant team began. They were given a time frame, answers to many questions, and a ton of information. That was in July of 2019. The timeline that they gave us indicated that the soonest surgery could have possibly been was in the second week of September. A day after we would be getting back from an annual camping trip. I thought things were going to move quickly. Looking back, I can see that I really believed it too.
Fast forward to August 2019. I applied to be a part of the living donor program at the beginning of the month and was accepted. The nurse emailed me a bunch of stuff to read and told me once I had finished, to email her. I read all the material, understood what I was getting myself into, and emailed her on the fourth. I got an auto-response moments later. She was going to be out of the office until August 12th... while I was out of town. Then started one of the tougher weeks of my life.
I got her response on the morning of August 12th, while I was at the Joni and Friends Urban Family Retreat. I wasn't able to respond until I got on my break after lunch. I sat out in the sun on some stairs by myself to reply to the nurse's email. Typing out the email only took a minute. Sending was the hard part. My finger hovered over the send button for a good fifteen minutes. I sat on the stairs, running my fingers through my hair with terrible thoughts going through my mind. "You could die on that table." Of course I knew that the chances of that were so small. 0.03% to be exact. Still, the voice was there. "There is still that chance you'll die under the knife. You don't want to take that chance." I said to the Lord, that if he really wanted me to do this, he would send someone to me. He did. I sent the email and went on with my day. I was shown so much love and support by my fellow STMs and friends.
On August 27th, I went in for my initial testing. Pretty much seeing if I was a blood-type match with my dad. I wasn't expecting to get the results until about a week later, while I was camping with friends. A couple of days after they had taken my blood, I went to bed but never fell asleep. I kept getting a feeling that I was going to get the results that day. I did. I am a match. Along with the results from the test was an order for another test. I was going to receive a cheek swab DNA test in the mail. Once it came in, I finished it, packed it up again, and sent it back to the lab. Hoping that the results wouldn't take too long to get to me.
I didn't get the results from the DNA test until September 16th. That afternoon, I got the email that said I was a "direct donor match," which meant that I would be able to donate directly to him... and had yet another lab order to fulfill. I read that, sent out an email to my church, updated a few friends, and kinda just shut down. At that point, my brothers didn't like when I talked about it, so I would normally avoid the subject around them. I had no idea how hard it would hit me that night. I cried so much. I was anxious and terrified. I sat in my bed with my Bible and prayed. After many hours, I found peace and started my day, without a wink of sleep.
September 23rd, I went to the lab to get things done then back again the next day. At that point, I felt like a pro at getting my blood drawn. I got all the results from the lab on the 26th and was told everything looked good so far. We just needed to wait for my dad to finish his work ups. He had an appointment on the first with cardiology. It was technically supposed to be his "last appointment before surgery."
October 1st was not a good day for me. I didn't hear what I wanted at all. Some of my dad's numbers were too high, so the doctor wouldn't clear him for surgery. I thought the holidays were ruined. My mom wasn't able to quit her job like she wanted. She was going to be working instead of being with family. It was one of the worst days I had in a long time, I was so upset. A friend texted me later that day, giving me words I desperately needed to hear. That all of this happened for a reason. That no matter what happened, it was all for God's glory and that it was His will. It meant so much to me.
The evening of November 16th, we (my family and I) looked at the results of the blood work my dad had done earlier in the day. His numbers were well under the goal his doctor had set over a month before. We didn't think they would drop so quickly. On top of all that, his other high numbers were also down. We rejoiced!
At the time, I was feeling a lot of mixed emotions. I was glad that it was finally looking like we would be able to move forward with all of it, but I was scared out of my mind. My dad had an appointment scheduled on November 20th. Since his numbers had lowered so much, I thought that things were about to start moving very fast... and that I would soon be in a surgery that would remove one of my kidneys. A piece of me. Early December even. My mom even asked me if I'd be ok with things moving this fast. I said yes.
Then, some really unexpected events came along. On the 18th, my dad started feeling intense pain inside. Level seven pain on a scale of 1-10. I had no clue what it could have been. Except that it could be his kidney. We thought we would have to take him to the ER that night. We didn't. On the 19th, his pain level was up to an eight. He decided to contact his doctor that night and left a message. He was going to be seeing that doctor the next day anyway.
When the November 20th came, Mom went to work, and my dad went to his first appointment of the day while in a level of 9-10 pain. He called me around noon to say that his doc was sending him to the ER. He went to pick up my mom while I grabbed a few things for him and my mom then packed it in bags. They swung by our house, took the stuff, and went to the ER. They arrived and checked in at the hospital and didn't hear anything until 6:30 pm. Still hadn't seen a doctor. Tests but no doctor.
At 8 pm, they finally put my dad into am ER room. I didn't hear anything until I got up the next morning. They got home in the wee hours of the morning after spending around 12 hours there. There wasn't anything wrong found.
On November 26th, I got a call from my mom. She said my dad was "low risk." Meaning, that we had the green light. There was a bunch of strange feelings and I was excited to get things moving. However, things didn't move. The transplant team still had to meet and approve my dad for placement on the National Transplant list.
We didn't hear much until the second week of December. My dad had still been experiencing high level pain for about a month at that point. One of the doctors told him that if the pain didn't subside in the next two weeks, dialysis would be seriously considered.
On the 11th of December, we got a call from my dad's transplant nurse and were informed that he had been approved for transplant and was finally on the national registry. Sadly, all we could do was, once again, wait. Paperwork had been sent to insurance for their approval. We were told this process could take as little as 4-5 days to as long as a few weeks.
A bit later in the day, my nurse contacted me. We scheduled an appointment for the next week.
On December 20th, I had a full list of events. 3 separate blood draws, a living donor class, an EKG, a chest x-ray, and meetings with professionals on the transplant team. Even though I had spent a really short amount of time sitting in the waiting room (making me think it would be quick), I spent nearly seven hours at the hospital. By the end of all that, I was exhausted, a bit woozy, and super hungry. It was a lot, but I wanted to get (or at least try to) everything done in one trip. Sadly, I was unable to schedule the needed CT scan for that day as there were no appointments available. I ended up getting that done a week later.
December 27th, the day of my CT scan, I was (surprisingly) not nervous at all. I had never done one before but I knew enough about them to not be scared. I got to the hospital and found my way to the lab. I checked in at the desk and sat in the waiting area. Around 15 minutes, and my name was called. One of the techs walked me to a changing room so I could change into one of those stylish hospital gowns. I eventually made my way into a curtained off room where I was instructed to lay on the table.
I'm gonna give you a quick piece of advice. Whatever you do, do NOT look at the needled when getting an IV stuck in your arm. I had a quick moment of "oh my gosh, that needle is huge, it's gonna hurt so much." If you avoid looking at it (like I normally do), it is done and over before you really feel the needle prick.
Once the IV was in, a syringe of saline solution was injected into my IV. This was my first IV so I wasn't exactly prepared for it. I could feel the saline flowing into my body and under my skin. I guess it kind of felt like someone sprayed my arm with a squirt gun. Except when I looked, my arm wasn't all wet.
I was moved to the room where the CT scan would actually be, and felt my nerves a bit. I was told that when they push the "contrast solution," I would feel very warm or even extremely hot. I was put in the machine and took some deep breaths as the tech helped me get settled in. We did the initial scans, I held my breath when I was prompted, and five minutes later we were halfway done. The second half was the hard part. I got hooked up to an IV bag of the contrast solution (I don't know how that works), and them the iodine was pushed into my veins.
I had no idea it would be as uncomfortable as it was. First the sensation was felt in my arm when the saline was injected. I could TASTE it. Let me tell you, iodine doesn't taste pleasant. Then I got warmer. Then even warmer. Hot. Then I felt like I was on fire. It wasn't really... painful. It was like I was standing in a campfire, but I wasn't burning. About three minutes later, the feeling subsided and was comfortable again. Or at least as comfortable as you can be when you're in a giant tube and have a needle in your arm.
Soon enough, I was helped out, IV was pulled from my arm, street clothes back on, and on my way back home for a nice nap and lots of water to flush my system of iodine.
My family and I really thought that all this would have been done by the end of January. Unfortunately, it wasn't. I was told the transplant wouldn't happen until February because the transplant team was "mostly booked up for January." So once again I waited.
My dad was still in pain and the doctors didn't want him in surgery while in pain. He had a couple procedures to try and find what was causing it, but none of them helped at all.
I awaited the email that was going to come into my inbox after the transplant team's meeting on January 29th. It never came. I sent an email asking for an update and was told my dad's case had not been presented at that meeting. We had been told three weeks in a row that he'd be presented next meeting.
So I waited... And waited... And waited. Eventually, my dad received a new medication that stopped his level 10 abdominal pain. After a month.
Two weeks went by and he was pain free. We began to have hope that it would all be over soon. Soon, this season would end. Soon, this act in the play of my life would draw to a close. I thought I could feel the intermission coming up. I was wrong.
Almost a week after the last procedure, I woke up with some upsetting news. At 2 in the morning, my mom had taken my dad to the ER. He had been experiencing difficulty breathing. A couple hours later, he was was admitted for observation. I was told that his kidney function had further decreased and the doctors wanted to run a bunch of tests. One thing gave a bit of hope though. One of the doctors saw no reason to prolong the wait for transplant. That hope was quickly snuffed out. Our surgeon was out of town.
One day without sleep. Two days without sleep. Three near emotional breakdowns. Then he was home. things got better again. It began to seem like this experience was going to give the transplant team a push in the direction of giving us a surgery date. It did.
Now, at the beginning of this post, I said this would tell the story of when I began this journey, up to the day I got my surgery date. I wish the story was over. It's not.
On March 10th, we suddenly lost my grandfather figure to a heart attack. After all of the troubles before that point, it felt like the tsunami of it all. Days after his passing, I received a surgery date. It was a point of light in those moments. We got through the wake and funeral, I was thinking, "life is going to be a breeze after all this."
On March 16th, we received another wave. Due to the COVID-19 virus crisis, Rush had cancelled all elective surgeries. That included my own. If I had to describe how I felt that morning in one word, I would say "shattered."
On May 1st, elective surgeries opened back up in the state of Illinois. So on the 3rd of the month, I emailed my nurse to hopefully get an update. In the email, I informed her that my time table had changed, and , "window of availability" was open longer due to events I normally work being cancelled.
On May 13th, my nurse emailed me again. This time, to follow up with me and see if I would be interested in donating in June. When I read those words, I was so excited. Then, I was a tiny bit hurt. She told me that visitors would most likely still not be allowed in the hospital to due to pandemic policy. Meaning, none of my family would be allowed to see me until I was released. My mom didn't like the idea of me being by myself, but I was left with the final decision. I had so many people praying for my family and I. I am SO thankful. After a couple of days, I made the decision to go ahead with surgery. June 24th is my new surgery date. I have my final check in on the 10th. I am hoping none of it changes after I publish this, but who knows?
If you got to the end of this long and kind of depressing post, thank you. It's been an interesting couple of years. This post took me a LONG time to write. I'll most likely have surgery related content coming out on this blog, She Be Fierce 2, and my YT channel. I have a tiny little announcement to make and that is that I started an Instagram account for all the She Be Fierce "brand" I guess you could call it. If you want a little extra content (sporadic as it may be) go ahead and follow me on Instagram.
Once again, thank you so much for taking time out of your day to read this! It means a lot to me! If you would like, please follow this blog and my Instagram!
Until next time,
Katherine Simeon
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