I kept a diary for the first-month post-transplant.
I took note of every single small change that I felt.
How many times did I pee today?
How much water have I drunk?
What were my lab results?
Check Blood Pressure.
Am I losing weight? Am I gaining weight?
If one tiny thing was off, I'd call and pester my nurses at transplant. My greatest fear was rejection. They told me after surgery that the first four months were the most important. If I were to reject my sister's kidney, it would be in those first four vital months.
Sure, I was living it up! Eating great food, enjoying my fresh kidney freedom, but I was also anticipating the 'what if.'
I'll tell ya' what, the 'what if' game is excellent when you're dreaming of something grand and fun you anticipate experiencing in the future, but when it comes to disappointment? It's more harmful than helpful.
So, instead, I've attempted to stay focused on the kind of life I want to create, the people I want to be around, the projects I want to try, and the stories I want to share. This blog is what has come out of that focus.
My four-month transplant follow-up was scheduled months ago. There it sat like a paperweight in my calendar beckoning me to stay focused on living!
Month two, three, and four, I started to get lax about taking my temp, checking blood pressures, and weight. The monotony of those tasks reminded me I was still sick! I wasn’t sick anymore. My temps, weight, and blood pressures were starting to remain the same every day. I was making progress! I didn't want to be reminded of my condition anymore. I instead wanted to create memories of health and vitality! At the same time, I’ve stayed dilligent at taking my medication every day at the same times, drinking plenty of water, and making sure my labs are what they should be for optimal health.
Rather than fixating on what made me sick, I got outside more, and started taking pictures of flowers, animals, and birds out by the Buffalo River behind our house. I joined the Unitarian Universalist church in Eau Claire to participate in community and make new friends. I went back to Toastmasters (a club for speakers) and gave my first speech since transplant. And Benjamin took me to open mic for the first time in over a year!
Getting involved with community can really feel like an act of renewal for me. I'm no longer fixated on my own problems. Instead, I feel like an equal partner in making other people's lives better just by showing up. And believe me, showing up when I'm scared, don't feel good, or even (ironically) lonely, can feel like an act of congress! Showing up for community is probably one of the most essential parts of recovery.
Two weeks ago, I went in for the big follow up appointment. Benjamin and I woke up at the butt crack of dawn to drive two hours to Mayo Clinic for my early morning lab draw. Then my biopsy prep appointment. Unfortunately, my biopsy had to be post poned because I had a bladder infection. Damn it! You can't have doctors poking you with giant needles when you've got an infection, so the plan was to return Friday for the biopsy and the results!
Friday rolled around, and we were off again, this time Ben had to work, so I went to biopsy on my own. Honestly, it was no big deal. I knew Ben wouldn't have been able to come into the procedure with me anyway. As soon as the giant needles came out though, the sweat began pooling in my hands.
I knew it would hurt.
I knew I wouldn't like it.
But, I also knew it would be over soon.
That's pretty much how I get through anything hard. I count down the steps.
First needle. Ouch! Gosh dang, that hurts like a mother bear! It's the numbing medicine. I can feel it draining down through my body and even into my back.
Second needle. Oh man! That really freaking hurts! More local anesthetic. This time in a different spot.
Only four needles to go. Now only three...
The biopsy needle was huge! It was about six inches long with a hollow point to extract some of the tissue to test for rejection. It made this horrific loud clicking sound and I jumped a mile in the air! Ok, that's a total exaggeration, but yeah, I jumped! The nurse tried distracting me with questions about my family. It helped. I also practiced my deep meditative breathing.
One more needle aaaaannd... finally... it was over. All done. I could finally relax my tense jaw muscles, and take a deep breath.
I was sore with a little bruise right above where my transplanted kidney rested in my abdomen.
When you get a transplant, they don't try and shove the new kidney back into the original spot. Instead, they place the transplanted organ in the abdomen for easier access and blood supply. Also, they don't typically take out the rejected kidney. Removing organs can be risky and causes more scaring than is necessary. I now have two transplanted kidney's on my right side. Amazing, huh?
I really wanted to get the results of the biopsy that day. The anticipation was starting to get to me.
Because my appointment was rescheduled from the previous Monday, I was squeezed inbetween two other patient appointments, and it was Friday. I knew there was a pretty good chance I wouldn't get the results. Turns out, I was right. I would have to wait until after the weekend to find out if I and this kidney were gonna make it. It was a long weekend.
Monday morning. I was dead tired. I had a heck of a time trying to sleep the night before, and once again, it was an early morning lab draw for me. After labs, I headed up to transplant to get the results of the biopsy FINALLY.
"Everything looks great! The first biopsy test came back negative for rejection," my transplant doctor said. I looked at Ben, and we both sighed with relief and smiled.
Can I just tell you.. the relief I felt in that moment was palpable? Had I been holding my breath? I took a giant deep breath and felt the calm wash over me. Everything. Was. Going. To. Be. Alright. Phew!
To celebrate, Ben and I took off for New Hampshire! I couldn't wait to share the great news with my kidney sister!!! Bree was waiting there for us at the Manchester airport in her used-new pickup truck! After giving each other giant emotional hugs, I made Bree pose on the hood of her big truck!
How long had Bree wanted a truck? She lives way up in the hills of the White Mountains and hauls a lot of stuff around. Sometimes an Idaho girl, who now lives in New Hampshire, just needs her pick up!
I filled Bree in on all the great news! "The koala butterfly and I are doing amazing," I told her. I could see the relief on Bree's face too.
The koala butterfly is Bree's kidney. Right after transplant, still jacked up on morphine, I imagined Bree's kidney hugging me from the inside. But it wasn't a kidney hugging me, it was an adorable koala bear with bright blue wings! Yeah, pain drugs are fantastic! The image stuck and now we affectionately refer to it as the koala butterfly, or the koala kidney.
So, it seems I'm in the clear! Sure, there will probably continue to be strange little adjustments to my meds, diet, etc. Like my potassium! It doesn't seem to want to stick to one number! Instead, it wanders all over the lab results like a lost little mineral trying to find its equilibrium. Besides those little things, I'm feeling better than ever! And it looks like me and koala butterfly will be sticking together for a good long time.
I want to thank YOU for sticking with me through this whole journey! From the beginning with tons of messages, prayers, hearts, and shares encouraging me to keep going, and letting me know you love me. Thank you with all my heart. There sure is a lot of dark stuff in the world right now, but what I know for sure is that there is still enough love to go around. Enough love for all of us! Thank you for all the love you’ve given me and Bree! It saved my life 💗
With my whole wild heart,