Waylon Jennings once said “I may be crazy, but it keeps me from going insane.” I can honestly say… I get it. These past few weeks have shown me how literally upside down my life can get when changes are made to your normal routine. (If we want to call my pre-transplant routine anywhere near “normal”.)
Since the transplant, my mom has had to drive me to post-op “clinics” out in Fort Worth every Monday, Wednesday, and Friday. At these clinics, they have to draw blood, take urine samples, evaluate how the meds and kidney are doing and then I meet with the doctor who lets me know of any changes in the medication/diet/etc. I need to make. Sometimes, they’ll have classes for me to take to learn about food safety or nutrition or just basic “need to knows” about living immuno-suppressed. Sometimes I have to meet with a social worker to help me with all the insurance issues involved. Sometimes they have appointments lined up for me to have sonograms or x-rays or IV infusions of whatever I might need after labwork… I sometimes never even know what to expect until I get there…and holy cow is it wiping. me. out. Not only is it exhausting, but every change in medication has a different side effect…which we’re still trying to regulate! In addition to the change in medications, I also have the changes in nutrition. Everything I was told pre-transplant (limit fluids, low sodium, etc.) is completely opposite now. I am REQUIRED to drink a ton, and raise my sodium to keep my blood pressure regulated. Right now, the steroids have my blood sugars through the roof, my vision is completely messed up…everything is a total blur, and my blood pressure completely plummets in the morning leaving me as weak and useless as a ragdoll. It’s temporary, and they say these things will improve as my drugs are adjusted, but I’m tellin’ ya, there is no “routine” to follow right now (except my timer which tells me to take my meds at certain times of the day) and it feels like a weird form of organized chaos. I know that as crazy as all of this is, if I keep at it, I will be normal again and the crazy will subside into a new “normal”.
On a lighter note, my family was asking if I’d name my new kidney. I wasn’t going to, but after joking about it, we actually came up with a name that kind of made us laugh. Kirby the Kidney. Not only is Kirby a brand of vacuum (and this kidney is sucking out all the bad toxins in my blood now), but it was the name of a monkey doll I received while in the hospital… and it kind of stuck. 🙂 I had no idea it was also a Nintendo character (see pic below), but I’ll roll with it.
In the meantime, I’m going to keep babying my “Kirby” by drinking tons of water (to keep it “juicy” as my coordinator says) and going to my crazy clinics. And despite this topsy turvy-ness, I’m still a very happy and thankful girl!!!
Things I’m thankful for today:
1. I no longer have breathing issues when I go to bed! Yaaay!
2. I no longer have to hook up to a machine every night… I have freedom to crash on the couch if I want!
3. My mom who is having to wake up so early and drive me all over oblivion to get to all my appts. Love you mom!
4. I’m meeting some very interesting people at the clinics who are going through transplants of their own and sharing their experiences with me.