This is a plea for my life.
My story with the illness that changed my life forever begins on October 19th, 1999. Until that day I had lead a rather unexciting, perfectly ordinary, relatively happy life. That fall I had started Nursing school, gotten a part-time job, and was dating the boyfriend 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, or at the worst a flu), I was rather suddenly (and improperly) diagnosed with a rare blood disorder called Thrombotic Thrombocytopenic Purpura or “TTP”.
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. He told me it would be best to see my family doctor, just in case it was a reaction to the flu shot I’d had earlier, which apparently it wasn’t.
The next thing I knew, I was hospitalized and undergoing apheresis, popping prednisone and dodging suggestions of chemotherapy and splenectomy (just talk at the time)…and thoughts of my tempestuous future. Exactly one month later I was free, feeling much better and without any residual damage—unless you count the fact that I left my boyfriend of 8 years in the dust (who could not handle the fact that I had been so sick) and I had to start my first semester of nursing school all over again. Regardless, 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 quite suddenly 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 got back on with my 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 dreaded steroids. I began looking towards a future devoid of hospital stays.
I spent five years attempting to forget what had happened to me (though truth be told, I never succeeded). In those years, I got married and we decided to start a family—how could I possibly have relapse? I’d been healthy for what seemed like forever. I did get a few warnings about how I might get sick after the baby was born, or how there might be difficulties with the pregnancy… but really, no one was prepared for how bad things would get, I don’t think.
Two days after giving birth to a perfect, beautiful, wonderfully amazing baby boy (7 weeks early I might add), my body once again decided to allow all hell to break loose. Apparently I was having 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, really. He stepped in and took over the care of Leith 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; talk of MRIs, CTs, neurological damage, possible kidney failure, suggestions of dialysis (that I avoided, by the way), and even thoughts of a kidney 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 only 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 Ritux and a splenectomy, a very bad bout with pneumonia and entirely too much time away from my 1 year old son and husband) I was discharged, looking forward to six to eight months of recovery. I had muscle wasting so drastic that I couldn’t walk or even stand without a cane, a severe stutter, relentless depression, weight gain from the steroids, memory loss, fatigue, chronic kidney disease, anemia, tests, exams, follow-ups, bone marrow biopsies, countless blood tests, transfusions and medications I couldn’t even count.
I managed. I had a young son (Leith) and a husband away at school in Ottawa. I worked full time (most of the time), took care of Leith and functioned. I was tired. Some days too tired to do much of anything and some days had just enough energy to get a fraction of things done. I kept up appearances for my friends and family and for our son, but I knew I was running myself into the ground. I was tired and weak. I had pneumonia then strep throat and the flu. I was sick every fall and winter and then too tired to enjoy the spring and summer the way I wanted to. I was also dealing with chronic kidney failure that had me on a pretty strict low-potassium diet, which as a former foodie (I wrote recipes for the Food Network and wrote for General Mills at one time) was pretty depressing. But I was alive…and happy…most of the time.
Years later I was talking to a hematologist at St. Michael’s hospital, where I had been followed ever since giving birth to my son. I also happened to work at the hospital so I ran into this doctor often. She, hardly knowing my story except that I had had a few relapses and always a rather odd bout with what everyone thought was TTP, decided that I should be tested for an even more rare (of course) disease, aHUS. We did the test and waited. The genetic bloodwork came back positive and my official diagnosis was changed. Luckily, unlike TTP, aHUS has a treatment that isn’t just a wait-and-see-if-you-get-sick option. There was a new drug, just approved that same month for use in Ontario for which I was a candidate. I jumped for joy.
Then reality set in. The cost of the drug was completely prohibitive. It wasn’t a simple matter of giving up certain splurges (of which I have few)—it was an astronomical cost. My doctor wrote a letter to my husband’s insurance company and luckily they covered the cost. I was home free. I started the drug not long after that and while I didn’t see results right away the bloodwork showed it was working and doing what it was supposed to do (suppress a very specific part of my immune system) and I was tolerating it with no difficulties or complications.
And now, two short years later I am well. My kidney function has pretty much completely returned (my most recent creatinine was 116) and I have the energy to live my life. I have a job I love with people who are kind, creative and amazing. I have a gorgeous 9 year old son who plays AA Baseball, is in French Immersion, studies Arabic and loves to sing, swim and dance in the kitchen with me (when I beg him…and when none of his friends are around). My parents have their daughter back, with the energy I need to be able to help them out (they’re 81 and 74 and while very spritely do need the odd pop-over). My friends have the “old Jennifer” they hoped to see again after Leith was born and I am able to go out, cook, do yoga, swim, skate, go for walks, write and even have a glass of wine now and then.
Of course the story doesn’t end there. If it did, it would be a fairy tale for the ages, wouldn’t it? But no. Now I’m facing the very real possibility of losing my insurance coverage for Soliris. If I lose the coverage of the drug, it would be a disaster. I would likely relapse again after discontinuation. I would not be able to work, take care of my son or live my life. The very idea of being diagnosed with a relapse fills me with fear. Fear for myself but also fear for my son. He was only 1 when I was last hospitalized, and doesn’t remember it at all (though he’s heard all the stories). He was only 7 when I started Soliris…he doesn’t clearly remember that his mother used to sleep a lot and never had the energy to do much of anything else. I don’t want him to see those sides of me. Which means I need to stay on Soliris, no matter what.
This is my plea. I don’t think I have ever begged for anything before in my life. But I am begging now. Hoping that the Ontario government will reconsider my case and not force me to discontinue taking the drug that made me able to live again.
As of 2016 Jennifer has received government funding for the drug she needs and she is living comfortably with her aHUS. She dreams of advocating for other patients with the disease and hopes that in the future no one patient will ever have to go through the struggles or uncertainty that she had to.