Today is Thursday, March 14th. In addition to eating Pie and celebrating Taylor Hanson’s birthday, it is also World Kidney Day and I’m spending most of my morning at my clinic for a routine post transplant checkup.
I’ve talked a bit about my kidney failure and transplant here in the past – there’s a whole section just for that – and I’m sure people who I talk to regularly are more than well aware of things about kidneys you never knew you needed to know (like how they don’t typically take out the existing kidney during a transplant).
Since it is World Kidney Day, I thought I’d do a little Q&A, with help from Planners Gone Wild because I couldn’t think of all the stuff I get asked all the time.
DISCLAIMER: I AM NOT A DOCTOR, NOR DO I PLAY ONE ON TV! All of this is my own experience, or things I’ve linked to. If you or a loved one is going through this, please confirm things with your own doctor because everyone’s experiences are different. The website I’m linking to is The National Kidney Foundation, which is a fantastic resource for both patients and caregivers.
What happened? Why did your kidney’s fail?
That’s a good question! We aren’t quite sure. The official diagnosis is Glomerulonephritis, which is basically some kind of infection that damages the filtering part of your kidney.
The current theory is that I got a staph infection as a kid, which is pretty common, and it settled in my kidneys where it did minimal damage of a long period of time. Possibly scarlet fever. Then at 27 it kicked in again, gradually got worse until BAM, failure.
We, meaning my Kidney team and myself, don’t think it’s genetic or anything like that. I just got lucky.
What is Dialysis like?
I always thought of it like going to Chemo, although I have no idea what Chemo is like and hopefully won’t have to deal with that any time soon.
There are two types of Dialysis, Hemodialysis, which is the kind that filters your blood, and Peritoneal Dialysis, which is done through a tube in your stomach and some kind of voodoo involving your abdominal lining… the process is wild, but it really works. The links will explain more in detail on how each works, because it’s… a lot of technical stuff. I was on both.
Hemodialysis can wipe you the fuck out. I started on that because of the “emergency-ness” of my situation. This meant that I went in to the clinic at my local hospital 3 times a week at 5:30am for treatment. I had a port in my chest that had a tube down in to my heart and then they’d hook me up to a big machine to filter my blood. During the 3 1/2 hour sessions, I would get really cold, my blood pressure would drop, I’d feel nauseous, and be really bored but not have enough energy to read or do anything. I’d watch Food Network on the TV at my station until it was time to unhook, then I’d drive myself home, eat a scrambled egg, and sleep for most of the day. I hated it. It made me feel “sick”.
When I switched to Peritoneal Dialysis, I was able to do my treatments at home, which meant I only went to the clinic once a month for bloodwork. I had a closet full of supplies and hooked myself up to a machine every night that basically created bags of pee. This was MUCH easier on my body as long as I was careful with my diet levels and water intake. I have less to really say about it because it was akin to almost being “normal” in comparison to the hemo experience. I still felt tired and swollen all the time, but I could do things during the day that I couldn’t have otherwise.
How did you deal with the emotional highs & lows?
Crying. I can’t even lie. I cried a lot. It was very cathartic. And sometimes that’s all you can do.
I ended up getting in to Planning because of all the appointments and stuff I needed to track. Being able to stretch my creative muscles was so helpful in dealing with everything because I could at least make pretty things. Art is a really effective form of therapy and has always been an outlet for me in times of stress.
I also started learning everything I could about my situation and the things I could do to have some impact to make my body cooperate better. I figured out better food swaps so I could still eat some of the things I loved (although nothing replaces a Diet Coke or a Potato).
How hard is it to find a donor?
This is a loaded question. Some people have a really hard time. I was extremely lucky in that I had two REALLY GOOD matches within my family. I have my mom’s kidney. It worked the moment they hooked it up. I peed on the operating table (which is like, the best sign ever in transplant land).
My total time from failure to transplant was about 18 months. Some people have been waiting years on the transplant list. A lot depends on what your particular situation is, your location, your age and other health status… I think I was told the average wait on our local list was 3 years.
If you are on the list, FOLLOW ALL THE INSTRUCTIONS NO MATTER WHAT. Each hospital has different rules, but mostly it comes down to keeping yourself healthy enough to get a phone call for immediate surgery. That means: follow your diet, take your meds regularly, don’t skip treatments, don’t use drugs (some places are lenient about CBD and some aren’t so check with your doctor), and basically keep yourself as good as you possibly can.
How long did it take you to heal & feel better? What’s the first month like?
Going from no kidney function to having a kidney again was great. Then they gave me Prednisone initially and I was FLYING. They day I got home from the hospital, I was running up and down my stairs.
That being said, you’re adjusting still. I had giant metal staples in my abdomen for the first month that… let’s be real, hurt. The initial medications I was on gave me horrible nightmares. I was still tired and weak from over a year of being on dialysis. My brain recovered faster than my body did and that was frustrating.
The first month, I hung out close to home. We didn’t go out and do a ton, but it was the middle of summer so I was able to be out and about a little. I had family around to help with things. But, by the end of the month, I was ready to be on my own and deal with things myself.
Can you go do things in public? Like eating out, travel, and other stuff?
I never let anything stop me from doing the things I wanted to. Probably broke a bunch of the “rules”. My theory is that I should enjoy the ability to do the things so I’m gonna.
Now, I am fairly careful about the places I eat – especially sushi. Some doctors say no… I never asked mine. I just make sure the health inspection is recent and perfect. I won’t eat buffets (unless I’m in Vegas). I traveled on Dialysis – it’s a pain, but it is possible, talk with your clinic. I go to large events. I don’t wear face masks, but I think I’m gonna start during cold & flu season because…
How hard is it to stay healthy now that you’re on immunosuppressants?
First year? Easy. I got my required shots and didn’t have anything worse than a cold.
This year? I got septis from a UTI, a mysterious virus that basically knocked me out from November to February, Strep, and a wart on my thumb.
Granted, this fall was exceptionally stressful for many reasons, but it was a good lesson in “Everything can and will make you sick if you don’t take care of yourself properly”. So, where as I was doing the things like taking my meds regularly and washing my hands, I wasn’t eating well, sleeping well, or prioritizing my well being the way I should have been. Don’t do that.
And maybe wear a mask during flu season. Get those cute ones from Japan and say you’re practicing to do some cosplay.
What does life look like in the long term?
Well, I’m turning 31 this year and going through what every millennial does when they hit their 30s. Reverting back to being a child.
Seriously though. I will be on immunosuppressants for the rest of my life. I take two, twice a day, every day. There is an increase risk of skin cancer, so I have to sunblock it up if I’m going outside. I’ve gained… a bit of weight over the course of things that is SO HARD to shift (and having to come to terms with the fact that my college weight was because I was essentially dying so I don’t want to go back to that). I have some PTSD over medical stuff, so getting sick also gets me panicky and a whole mess of stuff to go along with that, but it’s getting better. I’m still dealing with tiredness a lot.
But I’m good. I go out. I’m involved in my community. I date. I still occasionally go to the bar. I’m looking for a job with health insurance (stop laughing fellow millennials). Long term, things are looking good. It’ll never go back to “normal”, but it’s a new normal.
What do you want your caregivers to know?
Everyone is different, but I HATE when people tell me to look on the bright side, or “it’s not so bad”. Nah, it sucks and that’s ok. You’re allowed to be mad about this shit.
Then is that the whole “invisible illness” cliche of even though we look fine, we’re not. It’s hard to describe the feelings of your joints being full of fluid between your sessions or that yes, that banana pudding CAN actually kill you. We aren’t making this stuff up for funsies.
And we really appreciate you. We appreciate that you don’t eat mashed potatoes in front of us, or that you buy the unsalted tortilla chips even though we both know they taste like shit. Thank you for putting up with the beeping of the machines going off in the middle of the night and taking our calls when we just want to cry about how much we hate it.
A big reason I got through all of this was my support systems, near and far, that would check up on me to make sure I had a ride to my appointments or texted instead of called because they didn’t want to wake me up after a session. We really do appreciate it.