Written by Carolyn Arrington
This is a personal account of my own struggles with cystinuria, and while it is always difficult to recall the traumatic events involving my past medical problems, I hope many other cystinurics can relate to my experiences.
I’d like to tell you I’ve been courageous in my endurance, vigilant in following doctor’s orders, a cooperative, docile patient — but that is not true. Some of my resistance to initial treatment came from my own emotional difficulties surrounding the particular time of my diagnosis, as well as a myriad of complex factors. Suffice to say, I was a troubled young adult, mainly from unresolved dysfunctional family issues, and the first few small stones occurred in my late teens. Though painful and requiring hospital emergency care, I passed those stones, and the G.P. who treated me did not suspect that those isolated incidents were connected.
After I was married a year or so, I had episodes with larger stones which required hospitalization and one cystoscope. Fortunately, I was under the care of an excellent urologist, and he had laboratory analysis done on a stone, told me I had cystinuria and sent me to a nephrologist.
At this point there occurred an almost fatal mistake on my part, and both the urologist and nephrologist. What happened? In retrospect, I tend to think it was simply a profound lack of open communication, almost a misunderstanding, complicated by my own emotional frustrations, fears, worries which were never addressed at all. The urologist was a talkative, demonstrative individual; he would speak at length about the urological aspect, even showing me small-scale models of the kidneys, etc. I’d become accustomed to his articulate, engaging manner and expected the same treatment by the nephrologist.
But, as I eventually learned, these two specialists were utterly different in their personalities, their medical approach, their go on and on with the medical saga, but I think every cystinuric knows all the various details about major kidney surgeries, the other procedures that helped me survive. It was a long, difficult two years of endless rounds to doctors’ offices, medical labs and occasional hospitalizations. I’d love to tell you I was brave, but I was not; I was a thoroughly depressed, miserable woman.
If I could change one thing about that ordeal, I wish I’d had professional counseling — not only for my diagnosis of cystinuria, but also for other troubling emotional difficulties that took me many years to resolve. I never met another cystinuric during that time, but the few people I happened upon with kidney stones, either while in the hospital or while in a doctor’s office, were suffering so much that it seemed impossible to discuss our medical problems.
Perhaps in an effort to correct his earlier casual attitude about my condition, the nephrologist now gave dire, scary warnings and instructed me to take penicillamine. And I didn’t question him; I did what I was told. Frankly, I didn’t see I had a choice, and though I was depressed, I did want to live. When I broached the subject of having children, there really was no need for the doctor to say anything: the look on his face said it all. It was not a primary concern for me, therefore I willingly decided against ever having children…something I’m sure many women might not so readily accept.
I attribute my survival now to the penicillamine, which I took for fifteen years; but when side effects occurred, I had to stop it. Looking back, I personally feel that the starvation diet along with overwhelming stress brought about my acute attack when both kidneys were blocked. Prior to that, the early diagnosis apparently gave no indication of cystine levels being high enough to cause such a devastating consequence.
I’d love to end this by saying I always take care of myself, always drink enough water, eat right and see a specialist regularly. But the truth is, while I do much better now at taking care of myself, I am far from the perfect patient; I am always looking for alternative treatments, hoping that a genetic breakthrough will solve the riddle of cystinuria, somehow give us all better prospects for treatment/prevention in the future.
The good news is, though, I no longer DENY being a cystinuric — because I learned the hard way it is a costly mistake to do so.