Until October 19th, 1999 I had lead a rather unexciting, perfectly ordinary life. That fall I had started Nursing school, gotten a part-time job, and was dating a guy whom I figured I would eventually marry. That day, after a few weeks of sore muscles and weird dizzy spells (that I, and everyone around me kept explaining away as the stress of school and work), I was rather suddenly diagnosed with TTP-HUS (Thrombotic Thrombocytopenic Purpura-Hemolytic Uremic Syndrome).
A few days earlier I had been taking my blood pressure in class when I noted to my teacher that I must be doing something wrong – my pressure kept coming back way too high. The next thing I knew, I was hospitalized and undergoing apheresis, popping prednisone and dodging suggestions of chemotherapy and spleenectomy (just talk at the time)…and wondering about my future. Exactly one month later I was free, feeling much better and without any residual damage – unless you count the fact that I smartened up and left that guy in the dust (he couldn’t handle the fact that I’d been so sick). I picked myself up and moved on with my life, planning to never look back.
Two years later I was back -- in the hospital, covered in bruises, having heart palpitations and experiencing a relapse that took me entirely by surprise. I had been healthier than I’d ever been in my life over the two years that had spanned the “remission”…nothing added up. After another month, I had recovered once again and quickly returned to my everyday life. Not long after that, I graduated from Nursing school, met the man I would later marry, and soon forgot about the hospital, the apheresis machines and the steroids. I began looking towards a future devoid of hospital stays.
I spent five amazing years attempting to forget what TTP-HUS was (though truth be told, I never succeeded). In those years, I got married and started a family – how could I possibly relapse now? I’d been healthy for what seemed like forever. I did get a few warnings from various doctors about how I might relapse…but really, no one was prepared for how bad things would actually get.
Two days after giving birth to our perfect, beautiful, healthy, wonderfully amazing son, (delivered 7 weeks early) my body once again decided that all hell would break loose. I had quite a substantial post-partum relapse, from which it took me two months to recover. My husband handled it amazingly; took it all in stride. He stepped in and took over the care of our newborn son in a way I hadn’t expected, while I lay in the hospital, willing myself to get better, going through the rigmarole of treatment: apheresis; steroids; Rituximab; MRIs; CTs; talk of neurological damage, possible kidney failure, dialysis, transplant…But after two months it was pretty much all just talk that time too.
Then, one sunny Tuesday morning (after being out of the hospital for 10 months) I found out that my platelet and hemoglobin counts had fallen, my kidney function was plummeting and I was smack in the middle of relapse number four. Four months later (after more Rituximab and a spleenectomy, a bout with pneumonia and entirely too much time away from my husband and 1 year old son), I was discharged, looking forward to six to eight months of recovery. Due to the massive doses of steroids and rituximab, I had muscle wasting so drastic that I couldn’t walk or even stand without a cane, a severe stutter, absolutely no immune system, relentless depression, weight gain, memory loss, and fatigue. From the relapse I was now saddled with chronic kidney disease, anemia, hypertension and chronic fatigue. As my reward for being discharged I had a calendar full of follow-up appointments, tests, exams, kidney biopsies, bone marrow biopsies, countless blood tests, transfusions and medications. And that hasn’t ended even now, 6 years later.
But... These days, I often step back and consider what I’ve been through – what everyone touched by TTP-HUS has been through in one way or another. My husband tells me (at least weekly) that what I have been through has made me into what I am today and that I have to think about it in a positive way. And when I’m able to think about it like that, I don’t want to change it. Because, without all of it, I would have a different life than I do now. I might have married that dumb boyfriend all those years ago. I wouldn’t have met my husband and would never have had our son. I also wouldn’t have met some of my best and closest friends. Sure, I could do without the chronic kidney disease and the state of unknown that goes with a relapsing-remitting blood disorder…but all the good that came out of it has made me who I am. And for that I am weirdly… strangely… grateful.