Suck-a-versary

This week is a milestone for me, and it’s kind of hitting me hard. On June 12, 2017, I spent the entire day at Barnes Jewish Hospital knocking out all of the testing and meetings for my pre-transplant evaluation. They usually do it over two separate days, but then I still worked full time, so they agreed to do it in one day to minimize time taken off.

Over 10+ hours, I was examined and tested from stem to stern and met with the nephrology transplant team (including doctors and coordinators), social workers, and financial and insurance specialists.

I remember waiting at the valet parking kiosk and texting my husband. The drive home was a complete blur, but somehow I made it. I remained useless and brain drained the rest of the day.

Part of me vowed that I’d never do the subsequent annual testing in one day, and part of me prayed I’d get the call to come in for surgery before a year passed.

I got the letter last week, saying it’s time to call to set up testing again. I’m struggling with this suck-a-versary. Fortunately for me, several of the tests I had during a scare in February count toward the yearly work up, so I don’t need repeats. Score one for the spoonie!

A year. A whole year passed already.

I’m not on dialysis yet, but in March my nephrologist checked in with me on the type of dialysis I’d want. It makes a huge difference for planning purposes. One type requires an access surgery that takes several months to heal and mature before use. The type I chose will use an access point that needs only weeks before it’s ready. We talked lab numbers and what I would need to hit to schedule surgery. I realized how bad I felt now would feel like a walk in the park compared to how awful I’d feel at surgery numbers. That was a sucky discussion.

I’m so very thankful for each and every day I have here, with my family, especially not tethered to a machine. I’m grateful that I will have methods of staying alive once my kidneys finally run the white flag up the pole, but I’m trying like mad to do everything in my power to slow down the inevitable march to complete renal failure. Tweaking my diet, drinking more water, meds, rest, work reduction, injections, I’ll try *almost* anything. Prayer is difficult now, but when I can I pray that my time for a transplant will come soon.

This all scares the shit out of me. The decline, the symptoms, the treatments, the cost, the complete uncertainty of my life. It’s too much at once, added to normal life stuff.

When I shared my fear to an acquaintance, she was shocked. She thought I was one cool cucumber. Not so. I have my coping mechanisms, mostly sarcasm and dark, gallows humor. I prefer to put a clown nose and a party hat on the monster in the corner. Always have, always will. I take anxiety meds (just popped my next dose) and see a therapist. Today I called my primary to ask for something a little bit stronger for my anxiety. I try meditation now and then, but these days it isn’t really working for me. It sort of is what it is.

Depression and anxiety are common among renal patients and lupus warriors. I know mine this past two weeks is compounded by the suck-a-versary along with being off work for seven weeks and not driving for the past five. For someone who craves a certain amount of freedom, that’s a real kick in the bloomers. I’m hopeful that at my recheck on Thursday I get the green light to start walking again.

As of today, I am on page five twelve of the kidney transplant list for my blood type, halfway down, with approximately 40 people on each page. Every time I call or email my transplant coordinator I think of that song from the Breakfast Club.

So for now, I wait. I remind myself of all the wonderful people and things in my life. I try to not take myself seriously. It’s time to pick a new party hat for the monster in the corner. Shall we go with sparkles?

Thanks for reading.

Keep it renal,

Jen (Mama)

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