I wasn’t prepared for chronic kidney disease, an aHUS comorbidity
While no longer on dialysis, this columnist still faces challenges from CKD
Renal failure, liver failure, hemolytic anemia, 18 blood transfusions, plasmapheresis, dialysis, chemotherapy, post-traumatic stress disorder, heart damage, permanent uterine damage, and a mini-stroke — I never expected any of this, or to be dying at the age of 36.
All of this was my introduction to a rare disease I’d never heard of before called atypical hemolytic uremic syndrome (aHUS).
In September 2020, I fell gravely ill after feeling off for months following an asymptomatic bout of COVID-19. My life was forever changed, and I spent nearly two months in the hospital’s intensive care unit. I still need ongoing chemotherapy today to manage my disease.
I barely escaped death, but I couldn’t avoid having permanent ailments and comorbidities. Something that wasn’t made clear to me by anyone on my medical team was how different my life would be with another major illness caused by aHUS: chronic kidney disease (CKD).
According to aHUS News, more than 50% of aHUS patients experience impaired kidney function. Some patients even need a kidney transplant, a procedure that is considered if kidney function progresses to stage 4 CKD or above.
When I was admitted to the ICU, my kidneys were functioning at less than 5%. After a risky kidney biopsy, doctors discovered that the damage to my kidneys was most likely permanent. I was put on dialysis for the first five months of my aHUS journey, and I would’ve been a candidate for a kidney transplant but my body mass index was well above 35, which is the limit for transplant.
At that time, I presumably would need dialysis — which is the worst part of severe kidney disease — for the rest of my life. Dialysis is exhaustingly long, painful, complicated, and depressing to go through.
Once I started it, I could never regulate my body temperature. I was constantly freezing no matter what I did, a teeth-chattering kind of cold.
Dialysis also wreaked havoc on my digestive system. I was sick and vomited every evening after each session. (I had dialysis three days a week, every other day.)
My chest hurt all the time where my port catheter was located. Every time my shirt grazed across it or the dialysis technicians moved it to hook me up to the machine, pain shot through my chest and neck. I also experienced two infections, and my port fell out once.
Turning things around
I began eculizumab infusions as a treatment for my rare disease. It’s often called a “miracle drug,” and for me it was. Much to the surprise of my entire medical team, my kidney function slowly improved, and in February 2021, after a severe dialysis port infection, my kidney function finally increased to 15%.
When a CKD patient reaches a kidney function above 14%, they are no longer considered in end-stage renal failure, so I didn’t need dialysis anymore! My nephrologist fought me on that change, but since I was being monitored every 14 days during my chemotherapy treatments, I told him I was willing to take the risk. I’ve successfully stayed off dialysis for over three years now, with constant monitoring, diet, and exercise changes.
Much to my surprise, though, CKD continues to be exhausting, and I’m still stuck in stage 4. The symptoms I experience daily from CKD include difficulty breathing, swelling in my legs and feet, severe hypertension, weakness, fatigue, muscle cramps, and more.
No one really discussed with me what living with CKD would be like. Most of the aHUS resources I was given didn’t mention it. I think new aHUS patients should be given more information about this comorbidity. It’s easier to face health issues if you know what to expect, what resources to look for, and who to talk to.
Do you have aHUS and chronic kidney disease? Do you feel you were prepared enough about what to expect? Please share in the comments below.Â
Note: aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of aHUS News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aHUS.
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