A Kidney Transplant Spouse’s Story - Released

2:40 am the day (middle of the night, really) after the release from the hospital

So after three days in the hospital (sleeping on a chair by his bedside that didn’t fully extend so you had a lump in your back the entire time, you know, like the one in your throat), they said he could check out. New kidney, old spouse, new anxieties and the old hotel where we had stayed previously for our visits to Mayo Clinic, wondering when we would get the call to come and get Michael’s new kidney.

We weren’t prepared. I don’t think you can be, to be honest. Oh I’m sure some people have the “hospital bag” poised at the front door, waiting for the call but we were not that couple. Hell, we didn’t even have a real plan for someone to watch the cat (thank God for the kindness of current and past co-workers jumping in). That said, we were as prepared as we could be for us when the call came on a Thursday afternoon at 12:30 pm (October 4, 2018). I was at work. They had a kidney, it looked good but there were biopsies to do once the kidney arrived at 9 pm so they would call us around 10:30 pm. That bought us time to ready ourselves. While Michael got his head around the idea that he was getting a kidney, I was doing what I do best, running. A dash to Walmart to buy enough cat food for 14 cats for 14 years, even though we only had one cat. Filling 5 gallon water bottles that were empty, that we wouldn’t need on our trip, just because. Calling the hotel and finding my faith in humanity lifted when the operations manager offered to get us a room on the Mayo campus at an enormously reduced rate and asked, “Is there anything else I can do for you?” Throwing everything out of the refrigerator and cleaning it like a mad man (I clean when I get stressed - I should only be stressed more often, then the house might be cleaner!) The call came at 9 pm, we were on the road in the next 45 minutes. By 2 am we had arrived at Mayo Clinic. At 5 am they wheeled him into surgery and at 7:20 am on October 5, 2018, the doctor came out to say the surgery was uneventful and that he was glad Michael wasn’t “bleedy” - a good thing.

The next three days in the hospital, you’re living moment to moment. First there are the thousand tubes and machines he’s hooked up to. As he was taking his first steps around the hospital floor, I remarked to the physical therapist and nurse, who were holding all of these cords so he could shuffle along, “Wow, maybe someday he’ll get to be a real boy and not have these strings.” No response. Either they were too young to have seen Pinocchio or we were in the ward for those without a sense of humor. Everyday there was something new. Hell, every few hours there was something new. A new medication, a different dose, a different benchmark for his blood pressure, decisions to give him hemodialysis as he had a “sleepy kidney” (not uncommon in organ transplant, especially when the donor had been deceased). So much new that you don’t really have a lot of time to think about being stressed.

I found moments to get a shower or fill the refrigerator at the hotel for his arrival “home” while he was in treatment or sleeping. I sent texts, called his mother with updates, called my mother with updates and all the while I would get texts from friends that said, “Don’t forget about self care!” It was day three, this was hardly the time to ask Michael to wait on his next round of meds so I could go to the spa. People, designed only to annoy, it seemed.

I wrote a pithy and emotional post on Facebook. Michael despises social media but had authorized I could post something. Well, friends from a thousand years ago, who had no idea Michael even needed a kidney started posting. Some seemed passive aggressive to me, “Wow, can’t believe no one told me about this before seeing this post, I’m shocked. Please send him my best.” (You have to know the people. I could hear the tone coming through the iPad screen.) And yet, in the moments when I was in a bathroom or somewhere by myself, I re-read my post and the comments (old and new) over and over again. It made it real. And felt like support. Wasn’t this self-care?

If you’re dealing with someone going through this, just know it’s never a “good time” to send the text or call but go ahead and do it. It’s a distraction and allows me to roll my eyes at the people who just don’t fucking get it. “Everything ok?” Is the text equivalent to a booty call text, “You up?” I know you’re trying to be nonchalant but he just had his abdomen ripped open and someone’s organ placed inside so “Everything ok?”  REALLY? “It’s a fucking sideshow and I feel like the one armed carny trying to sell tickets, while pasting the beard on the bearded lady without anyone noticing.” Yet, I simply answer, “Yup, can’t text, more later.” When I don’t answer at all, that’s self-care. Maybe not a spa, but feels good not to answer when I’ve always prided myself on having the answer or being able to find it for someone.

I fell asleep on the couch at around 9:30 pm and Michael woke me, telling me to go to bed. I slept until he came to bed around 2 am and then I was on high alert. He has these horrible hiccups, preventing him from sleeping (they last for hours) so I got him a Xanax (which he’s allowed to have, as needed) but when you discover you’ve doubled the dose of what he’s supposed to have and he has to be up for labs at 5:30 am, you stare at him for awhile to make sure he’s breathing and then, convinced you’ve killed him or hurt his recovery, you get up, start writing notes for the doctors for tomorrow’s visit and find yourself a blogger again (if only for yourself) as you listen for sounds of breathing from the other room. 30 minutes of sleeping sounds, 3 trips in to stare at him sleeping, 3:30 am, the fucking hiccups returned. ARGH!!!

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