“Seasons of Love,” a song from the Broadway musical Rent, starts with “Five hundred twenty five thousand, six hundred minutes. Five hundred twenty five thousand moments so dear. Five hundred twenty five thousand, six hundred minutes. How do you measure, measure a year?” The near end of the song says, “Remember the love. Remember the love. Remember the love. Measure in love. Measure, measure your life in love.”
We’re starting a new year today. One that promises to be vastly different from our last one, but with a new set of challenges. If I summed up 2018, I would say it was the year I lost my job, gave away a kidney and gained perspective. Arabella, when asked, said 2018 was a pretty crummy year, but December pulled through. In the end, if we measure our year in love, it was an amazing success. We have never felt as supported by the people in our lives as 2018 showed us.
Our goal was to get Arabella to transplant in 2018. On December 18, we snuck in, just under the wire. As her living donor, I had surgery at the University of Cincinnati and my kidney was carried across the street to Cincinnati Children’s Hospital Medical Center, where Arabella was waiting in the operating room. Happily, all went well. I was discharged from the hospital the following day and Arabella was discharged on Thursday, December 27.
Unfortunately, a kidney transplant isn’t an easy adjustment. After fighting extraordinarily high blood pressure for over a year–she was on 5 daily blood pressure meds and ultimately even had her kidneys removed to try to control it–Arabella is now suffering from low blood pressure. Going from one end of the spectrum to the other, literally overnight, has her feeling nauseous, dizzy and exhausted.
The high phosphorus levels, which had her swallowing a handful of pills with each meal and snack–and which ultimately prompted our early move to Cincinnati because of the need for both hemo and peritoneal dialysis–again, gone…overnight. Replaced by, you guessed it, a phosphorus deficiency that now requires meds 3x/day.
The drinking limit of 34 oz per day has been replaced by the need to drink no less than 2 liters of fluid every day or face increased lab values. The leg aches that disappeared with dialysis have returned, but she can no longer use Epsom salt or magnesium spray because it could affect her post-transplant magnesium levels.
At this time, Arabella and I are pretty much quarantined to our Cincinnati apartment for the next 6+ weeks. She has twice weekly appointments at the hospital to keep us busy. Or we can go outside, since germs are dispersed more easily outdoors. We have to be extremely careful during this period because, although she will be on immunosuppresants the remainder of her life, she is on the highest doses right now. These medications suppress her immune system so that it doesn’t recognize my kidney as foreign and fight it. The downside is that she can’t fight any other germs either. When we go outside the apartment, she wears a mask to minimize exposure to germs.
All the things Arabella is experiencing are routine for transplant recipients. It’s just that most of it isn’t talked about outside the kidney community. People tire of hearing dreary news. They want things to be better–back to normal. The reality is that “true” normal is part of our past. We’re adjusting to a new normal–and for as long as Arabella’s kidney lasts, it’s a normal without dialysis. When she wants to go to sleep at night, there’s no setting up her machine and connecting, just falling into bed. Gone are the 3 days per week spending our afternoons at the hospital. We’re adjusting to Arabella having a kidney that’s powerful–a good problem to have. She has traded her old meds for new ones. The first year post-transplant is supposed to be the hardest. They prepare you for it as best they can–I’ve said it’s a lot like having a new baby…until you’ve gone through it, you can never really “know” what it’s like and even then, everyone’s experience is different.
We’re entering into a new season. A new year with a different measure. We want to make our minutes count and we’re thankful for your continued love. We feel blessed that things are going so well and we look forward to 2019.
Tonight’s picture features Arabella as she waited in pre-op to go to the operating room. How do you measure a year? Remember the love.
