My Real Medical Journey Began After I Left the Hospital
A columnist finds herself without a road map following her aHUS diagnosis
As my eyes slowly opened, I realized my vision was blurry. My head was throbbing, and I could taste blood. My right cheek felt itchy from the fibers pressed against it. But I could feel warm sunlight bathing my left cheek.
I blinked hard to get my vision to clear and then it hit — excruciating pain in my torso. My breathing hitched because the pain took my breath away. No one prepared me for this.
Crisis, diagnosis, then what?
In September 2020, before the scene I described above happened, I was in the ICU with multiorgan failure. I was dying. I had kidney and liver failure, insufficient blood in my body, a ministroke, and more. I was eventually diagnosed with atypical hemolytic uremic syndrome (aHUS). The ICU became my home for five weeks as I was stabilized and had dialysis, plasmapheresis, chemotherapy, biopsies, and myriad tests.
But my biggest issue with medical care is that no one prepares you for what happens once you go home.
My medical team did an amazing job at saving my life. But once I left the hospital, it was like being dropped off in the Alaskan wilderness with a lighter and a hat. I’d never been this sick before, so managing 14 medications was overwhelming. Plus, I had a packed schedule of chemo, dialysis three days a week, and one or two doctor appointments each week. I couldn’t walk up stairs because I was too weak, yet I was expected to manage this schedule? How?
When the hospital released me, I was delighted to go home. But I had dialysis the next morning at 6 a.m. in the hospital emergency room, due to an insurance dispute. Once I arrived, I had to sit in the waiting area for 13 hours before receiving dialysis. I was not prepared for that.
Once I was home, I was exhausted, swollen, hungry, nauseous, and dehydrated, and I had missed taking several blood pressure medications. I stood up and dizziness washed over me. I felt like a weighted blanket was on my head and I was sinking. My legs grew heavier and my vision narrowed. That’s the last thing I remember before I blacked out.
When I awoke, I quickly realized what had happened, and my torso was killing me. It hurt so badly I couldn’t move for two hours. Eventually, the pain subsided enough for me to return to the hospital. I was readmitted for another three weeks. When I blacked out, I fell and punctured my liver, which caused a hematoma that slowly filled my torso. I simply wasn’t prepared for how weak and vulnerable I was after being released.
Ongoing health issues
My life is quite busy with managing various medical issues caused by aHUS. One major issue is organ damage. My kidneys, liver, heart, and uterus were affected the most. It was so bad that I was in end-stage renal failure and needed dialysis for five months. I’ll forever be at risk of needing dialysis again.
I also experience:
- Hypertrophic cardiomyopathy
- Pulmonary and muscular deconditioning
- May-Thurner syndrome
- A liver hematoma (still present two years later)
- Unrelenting fatigue and exhaustion
- Muscle damage from the dialysis port
- Nerve damage
- Medical PTSD
- Side effects from eculizumab
But the worst part involved changes to my menstrual cycle, something that is often discussed in aHUS Facebook groups. Yet there’s little research about it that I know of. So not only is aHUS rare, but also women’s healthcare is severely lacking. And no one wants to talk about periods. (Gasp, scoff!) Menstrual cycles, fertility, and sexual dysfunction are huge parts of life that are commonly affected by medical issues and diseases.
The dialysis, organ damage, and blood thinners threw my cycle into chaos, which is apparently common with dialysis. It caused a cycle that didn’t end for more than nine months. And not a single person warned me about it.
I tried hormonal medications and invasive, painful, and traumatic procedures to “fix it.” But each effort made my symptoms worse. Six months in, I needed blood transfusions every three weeks.
So, at age 36, I had a total hysterectomy and bilateral salpingectomy. I’d always wanted a third child. But aHUS took that away from me. That chapter of my life was closed. No one warned me about that, either.
The only solace I feel when thinking about my new challenges is the voice that aHUS has given me. I don’t want a single person being blindsided, overwhelmed, and alone like I was when I left the hospital, with no idea what happens next and no clue about what the body might do.
I contribute to several aHUS, hysterectomy, and ablation Facebook groups, where I answer questions and share experiences, links, and other resources.
Lastly, there’s BioNews, the parent company of this website. BioNews has given me the most amazing opportunity and platform to be honest, open, vulnerable, and real with fellow patients and caregivers. That’s exactly what I’ve wanted to do since my medical journey began.
Being a light to guide someone through the fog is as amazing as walking on water.
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.