TRIO Member Stories:
I’ve been a worrier since I was a child. As far back as I can remember, I would wait anxiously when my parents left the house without me, afraid something terrible had happened and they would never be coming back. As a college freshman, I gravely told my Resident Advisor, who was dating a younger student, “Marrying a younger man is a great idea because men die earlier than women.” She laughed hysterically and went off to tell my dorm mates what I’d said.
Do other 18 year olds mull over things like that? I think not too many.
In 2010, I did get married, to a man my age: 34. We bought a house and had a wedding in the same month; we talked about starting a family soon. While growing older had naturally tamped down my anxieties, I still held the irrational belief that worrying about something could prevent it from happening—I just had to worry about enough things and cover all the bases. And I still had “hypochondria-by-proxy”: I had no concerns when I got sick that it could be something serious, but if a loved one had symptoms, I’d scour the internet to see what terrible afflictions they might possibly have.
Just eight months after our wedding, my husband Taz was hospitalized after routine blood tests indicated something was very wrong. Though he had a mild case of Crohn’s, a chronic inflammatory bowel disease, we’d thought he was otherwise healthy. As we waited in his hospital room, I thought back to the past few months when Taz had been feeling cold and tired quite often. He wore sweaters when I was warm without them. He had a portable heater he placed next to his desk while he worked, and it was on all the time. He regularly fell asleep watching TV in the evening.
These were all things I recalled in hindsight after the diagnosis, when I kicked myself for not noticing sooner. Taz had a kidney biopsy while hospitalized and the results indicated chronic kidney disease, with little kidney function left. His nephrologist believed the damage had been a side effect of his Crohn’s medication, and had probably been ongoing for quite a while. A transplant and/or dialysis would be in Taz’s future, sooner rather than later.
Taz has the good fortune of being a natural optimist. After a few minutes of shock, he was ready to do what he needed to do and get on with life.
I, on the other hand, needed a bit more time to let the news sink in. I also went into action right away, researching the kidney diet and revamping my recipe repertoire, reading kidney disease studies and literature, checking our health insurance and other life documents to make sure everything was in order…and worrying.
Naturally, I worried. Now instead of far-fetched scenarios, I had something concrete and worth gnawing over. The first few days after diagnosis were difficult—I remember a haze surrounding me while I sleepwalked through work and this new kidney-centric world. I felt I’d done everything wrong all along; I’d worried about as many things as I could think of, but managed to be blindsided by kidney failure. Kidney failure caused by medication—the chances were miniscule! I had not covered that base.
I wondered if we should go ahead with our plan to have children. What if Taz wasn’t healthy enough to work, or to help raise kids, or God forbid, wasn’t around at all to watch them grow up?
(Incidentally, our situation reinforced in me the conviction that patients should take control of their care and make sure their particular needs are met. It wasn’t until a year after Taz’s hospitalization that his nephrologist advised us that now, pre-transplant, would be the best time to try for children if we wanted them, since there are some indications that anti-rejection meds can affect fertility. A nephrologist is not necessarily obligated to discuss fertility issues with their kidney patients, but then again, neither was anyone on Taz’s care team.)
The nephrologist we saw for a second opinion, a doctor renowned for his bedside manner as well as his expertise, confirmed the diagnosis but had encouraging words. His wife had a serious chronic condition herself, and he told us a little bit about their experience. They’d been married several decades, had teenage children together, and they had been living with her illness since soon after they’d met.
The doctor acknowledged our experience would be life-changing, but it needn’t be negative. “Life will not go exactly according to your plans, but it will still be good.” It was not quite an “everything will be OK,” but it made me feel better to hear it. No one can promise everything will be OK. Of course not. And I was learning to live with more of that uncertainty in my life, because I had to.
Strangely, after the fog surrounding the diagnosis lifted, a huge weight lifted from my shoulders. The situation held so many unknowns that something in my brain knew I had to give up trying to work it over. It was only through this experience that I was able to truly understand—not just cognitively but down to my core—that worrying about bad events did not prevent bad events from happening, nor could I prepare myself emotionally by thinking the worst. There was simply no way to control the world through worry, and there were so many things that could happen in life, there wasn’t much point in trying to worry about all of them.
Still, it was with some relief that one day I realized I was turning over a trivial woe in my mind and getting worked up about it. For a while, there had been no room to let the small stuff in; these little distresses crowding in meant a return to the everyday. Before, my anxieties were further compounded by guilt that I was having such negative thoughts despite my good fortune—now, I let the whole lot of it go and move on.
I know I am very lucky, and worry comes with the territory of loving someone. Taz is still feeling healthy, working and traveling as usual. His sister is entering the home stretch of donor testing and, if all goes well, Taz will have a transplant sometime soon. The odds are in our favor, and I don’t even consider the possibility that the transplant might not work out. I’ve decided to keep living as if everything will, to keep planning for a family and a future together.
I don’t know what that future will bring. I don’t know if soon Taz will not be feeling as good, when his transplant will be, or how well he will do on it. I don’t know if we will die old, together, while holding hands on our front porch swing. And if we don’t, it would be a shame to waste today worrying about what might happen tomorrow. All I know is that today, while I have a cheerful and active husband—today is pretty good.
Her story will be updated as she and Taz
move forward in their ‘transplant adventure.’
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