During my last renal appointment, the “D” word was mentioned and y’all…WTF?!
Ever since my diagnosis of renal disease in 2016, my kidney failure was something that I took seriously but I treated like it was something that was happening to some other Rachee. I took my meds, changed my diet and started working out more but a small part of me just knew that I was going to “beat” this thing. Last year when my kidney function started to decline, and I had to create a micro-site to seek a living donor, I still held hope that the work I was doing (exercise and diet) would somehow cancel out this disease. In fact, I treated my appointments as a hang session with my nephrologist so that we could chat about books and running, and I could bitch about the awful job I had at the time.
A few weeks ago, I was having the best week I’ve had in a while. I wasn’t feeling tired, my hair was bouncing, and I actually ran during my morning run group meet-up, but all of these good vibes were dashed when Dr. L shared the results from my latest set of labs…it’s time start talking the “D” word.
It wasn’t really a shock. My team and I had been talking about the possibility of dialysis but I kept thinking that I had time. I changed the way I ate…more fruits and veggies! Less meat! Getting up early to workout and trying to be stress free (ha!). But a bout of Covid last year did a number to my health and well…here I be.
My mom and aunt did home hemodialysis, and it was a roller coaster of a journey, to say the least. I recognize that me, a person not tethered to a machine yet, is complaining about their CHRONIC DISEASE but as a person faced with the possibility of this treatment, I’ve got thoughts. I recall everything revolved around dialysis. Vacations. Work. A ride to the mall. Even entertaining at home was a production that left my mom and my aunt wiped and exhausted. And the supplies. And the doctor visits and the blood and ports and fistulas and oh my.
I have been in a funk thinking about the “D” word and have been on the struggle bus. I’ve been told that I cannot run the marathons I had planned to run this year (although not having to run double digit miles in 85-degree heat ain’t so bad). I have to take an extra med (a “water” pill so I am suddenly my grandmother running back and forth to the bathroom), I have swollen ankles (I sometimes have…cankles!) and I’m always tired.
I was really hopeful that I would have gotten a donor at this point. I was hopeful that someone would come through and all would be well. That I would get a new kidney and suddenly everything would be OK but no. There have been some folks who have tested but were ruled out for various reasons.
Lately, I feel like all I do is work and come home and stew, indulging in the game of “What if?” What if I never find a donor? What if I have to do dialysis and have to get a port and a shunt and other medical terms that bang around in my head. What if I had never gotten Covid? What if I just ignored those headaches? Sometimes I try to turn those what ifs into action…What if I actually go for a walk or, gasp, a run? What about a quick ride with Lt Uhura? But then I come home, sit on a something and start reading a book.
This is a start. Writing about the “D” word has made this situation not feel quite as overwhelming and huge. I feel like when I meet the surgeon (surgeon!) I won’t be tempted to run screaming from their office.
If you’re still reading (and you know you are!) please remember that Monday, 8/1 is PA Donor Day.
8 lives can be saved by with one donor so please consider becoming an organ donor. Click this link to learn more about how you can get involved.
Check out my micro-site and learn how you can possibly save a life.
Excuse me while I run to the bathroom.