Nearly a decade ago as we approached my wife’s lung transplant, I felt well-informed. Seventeen years of being with Rebecca (who was then 38) had taught me much about cystic fibrosis, its impacts, and its treatments. I was learning so much about lung transplantation that I was the envy of … well, not many because my wife was on a ventilator. Regardless, I still knew a lot. When she received her life-saving lung transplant we breathed a sigh of relief because it brought us exactly what we had hoped for: more time.
And as that time passed, I continued to watch and learn as we made it through the transplant and into the following years. I was so smart that I knew the difference between good news and bad news. You see, the good news is an appointment where her PFTs come back consistently beyond the percent predicted and the bad news is the kidney disease silently advancing behind the scenes.
Roughly eight years after Rebecca’s lung transplant, blood work tracked the progression as her kidneys approached critical levels of function. Long-term use of anti-rejection medications continued to put stress on her kidneys, which was accelerated when she contracted COVID-19 in 2023. A kidney transplant was likely in her future — which was bad, right? Of course it was...
I had a pit in my stomach when we started the transplant workup. It couldn’t be as bad as the six months spent on a ventilator, being told a lung transplant — and survival itself — was unlikely. Even dialysis would be nothing compared to that. Despite failing kidneys, Rebecca was fairly healthy, going to the gym multiple times a week while her new lungs gave her the confidence to call herself “the big, bad wolf.”
We had friends and family members willing to donate a kidney to her if they qualified. This would drive the best medical outcome possible and avoid waiting on a long list for a deceased donor. On top of that, the kidney transplant procedure itself was less risky with a faster recovery than a lung transplant. The bonus was that this wouldn’t force me to leave my job this time, deal with a career setback, or worry about basic finances as I did during that first transplant. I had to keep repeating these things until I stopped worrying … so basically indefinitely.
The kidney transplant workup included a stress test where they found an issue. The details would be revealed in a subsequent heart catheterization where they found a 99% blockage in one of her arteries, requiring a stent. The dye used in the heart catheterization and stent placement was known to be hard on the kidneys and risked pushing her into dialysis. If that wasn’t enough, the procedure would delay the transplant by six to 12 months. The added time would further increase her probability of needing dialysis.
Rebecca was crushed. She worried her potential donors would change their minds, that the dye and months of waiting would push her into dialysis, and that the symptoms from her failing kidneys would worsen. Dialysis statistically results in worse outcomes for kidney transplants as well, so it felt like a big bundle of bad news wrapped in another. Or was it?
What if we looked at it a different way? Imagine her kidneys held up well following her lung transplant. Let’s say her kidney transplant was pushed out by several years. Great news, right? She could continue to go to the gym, travel, and “huff and puff” with those big bad lungs, knowing she was doing all the right things for her health. But that blissful ignorance wouldn’t have changed the fact that she had a 99% blockage in one of her arteries. She would be taking a risk every time she worked out or exerted herself and we would have been blind to it.
The only reason why they performed the stress test that identified an issue was BECAUSE she was going through her kidney transplant workup. So, looking at it through that lens, her failing kidneys potentially prevented a heart attack.
Fortunately, as it turned out, she had her stent placed and didn’t experience any complications. The dye didn’t push her kidneys into dialysis and now she’s able to return to her activities without restriction. Her kidney transplant is delayed, but we won’t know the impact of that for at least another six months. It’s starting to feel more like good news than bad news.
As I try to put things back in perspective, I still can’t say I’m happy that she needs a new kidney, but I can say I’m thrilled they found and fixed the blockage. And maybe I’m not as great as I thought at distinguishing good and bad news as it’s presented. But, as a Monday morning quarterback, I’m a self-described rockstar. The one thing I know is life with CF will continue to be a challenge and we must remain relentless for ourselves, our loved ones, and everyone else dealing with this terrible disease.
Until it’s done.
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