I am 54 years old. While I had symptoms most of my life, I wasn’t diagnosed with cryo until 2013. Even as a kid, I had rashes on my legs and places where elastic cut into my body, and I had joint page as a teenager. I got pregnant at 18 and had my daughter — everything was fine. A week after she was born, my entire lower body broke out in the red splotches: they were big and very red. My joints started to hurt too. Some got swollen as well. We rushed to the doctor and they were clueless. They tested me for everything under the sun and everything came back negative (it was 1981). The only pattern I could observe was that new rashes came on every single night and then they would fade away in 4-5 days. For about the next year, this would happen every single day. The joint pain got better much sooner: at first, I had a hard time washing hands, just moving my fingers were extremely painful. After a few months the pain was mostly gone and only came out here and there.
Over the years, the rashes and pain would come and go. I couldn’t assign much cause/effect. Definitely, if I was on my feet a lot, I’d get rashes and swelling on my feet and legs. If I wore something restrictive (tight jeans, belts) it was much-much worse. Then I got pregnant with my son. Just to be sure, before we went for the pregnancy, I had myself checked out again for everything and again, nothing bad came back. Three months into the pregnancy, I gained 16 pounds overnight and had some pretty bad cramps. I had to convince the ER doctor to do a kidney test on me, b/c she said it’s normal to retain some water in pregnancy! Ultimately, they diagnosed me with vasculitis. I was 6 months pregnant and they said I should have an abortion because there was only a 10% chance that both the baby and would survive. I decided to hope for the best and went ahead with the pregnancy. By the end of 9 months, I had 50+ pounds of water on me. The labor went fine and my son was a small but perfectly healthy baby. After he was born, they put me on prednisone and I had a kidney biopsy and the majority of my kidneys did not seem to be affected. In six months I was off the meds and my kidneys were working fine. I had to go back for kidney tests every six months and they were always the same — not perfect but OK.
Fast forward 20 years. I started to have insanely high blood pressure readings: I would end up in the ER with a BP of 250/150. 2013 was the turning point because the doctors started to test me again and I tested positive for cryoglobulinemia and for HCV. To my huge luck, a few months after I was diagnosed the new Sovaldi and Olysio came out, so relatively soon I was able to get cured, but by then, I was truly on death’s doorstep. I was admitted to the hospital in December of 2013 to have a kidney biopsy, and plasmapheresis. I had 4 treatments of that over 4 days. They gave me a huge IVIG, to which I reacted with what I think now was a bad cryo episode: I started to get freezing cold, and had whole-body muscle spasms and a a heart rate of 180 for several hours. I really thought then, that was it. The nurses kept on leaning over me, telling me: Just try to breathe, try to breathe. Then I slowly came out of it.
They let me go home a few days later, only to wake up to a fever of 102 the following day — back to the hospital: it was a staph infection from the pheresis wound, that then made its way to my heart. That time, I was in for 10 days for IV antibiotics. They they let me go home with a pic line and my husband was giving me the IV twice a day for the 6 weeks. I had to go in for yet another round of plasmapheresis for another week, and then finally I was well enough to start the combined Sovaldi-Olysio combo for 3 months. (Several times during the previous hospitalizations, I had to get blood infusions too but I don’t remember exactly how many times.) My kidneys were sort of tanking and at the beginning of the HCV cure stage, I had about 25 pounds of water on me. I was in a very-very bad shape, with finishing up the high dosage of antibiotic, getting high levels of prednisone, plus a ton of BP meds, plus the HCV meds. On top of that they did a four-week Rituxan treatment (1/week).
But after the second week of the HCV drugs, I was virus free! I also couldn’t eat anything and as my kidneys started to buck up I started to lose not only the water weight but my weight kept on going down. I’m 5’9″ with a normal weight around 130, and I was down to 109 lbs fully closed. I remember for each doctor’s visit I put on more and more layers b/c I didn’t want to get hospitalized for malnutrition. On my nephrologists’ suggestion, I got medical marijuana, and that actually helped me starting to eat. My hair was coming out like crazy and totally stopped growing. I had hair down to the middle of my back before and I had to get it cut down first to a bob and then I just went with short-short hair. That was very hard for me. I was so weak that I couldn’t stand up from a squatting position. My husband had to take me out of the bathtub, At one point I collapsed while crossing the busiest intersection in Hollywood just as the traffic light changed to give the cars the green light! My husband ran back and carried me out; I couldn’t even push myself up, my legs just gave out.
It took quite a while to build back my strength, after the HCV was gone. I’d say it took at least 6 months, during which I was being weaned off prednisone. Of course, the expectation was that the cryo will go away and at first it seemed it almost did. (I clocked in positive at 2%) Unfortunately, after a few months w/o prednisone, it started to creep back again and my kidney function started to creep down. I was put back on 5 mg/day but even so, a year after my being cured, it was time for another series of 4 Rituxans. I got the first two in May 2015, then I promptly came down with Legionnaire’s Disease and kidney failure. Back to the hospital. This time, even my husband thought I was dying and got my kids to come. (To be fair, my husband was very sick too, on the verge of pneumonia, and he is strong as an ox.) I spent another ten days in hospital, and I pulled through! For the most part, I was literally COVERED with rashes, and they couldn’t tell if it was the vasculitis acting up or allergy to the antibiotic. (I was on 60mg/day prednisone too.) It turned out to be allergy…
Anyhow, 9 months later, here I am. Six weeks ago my kidney function hit 19, which is the magic number to start to get the testing to get on the kidney transplant list. I really view this not as a major change in my health but an opportunity to be proactive about my future. Because of my poor kidney health, over the years I have developed gout and it ruined one of my toes so I had to get that amputated a little over a week ago. This too was a step I view as proactive for the future (better mobility). I didn’t lose a toe – I lost a tofus (gout joke). Actually, I lost that toe ten years ago when the gout started to eat away at the bone.
Because my decreased kidney function comes with a set of symptoms and limitations, it is kind of hard to know which one of my ailments is due to that and which to cryo. (Other than the obvious rashes and the hand/foot numbness response to cold.) It doesn’t seem that cold plays a big role whether I get cryo symptoms or not, except for the hand and foot numbing. Most of my worst rashes actually happened during hot weather (and without air conditioning). As I have reread this, it sounds like a sob story. It is NOT a sob story. It is a story of survival. It’s been hard at times and I know it will be hard at times but my illness doesn’t define me. I consider myself lucky for living in a place and at a time where managing my illness is possible. I have a supportive family. My life is what I’m going to make of it and I’m determined to make it fun.