No answers about what’s causing severe inflammation and swelling
I'm worried about what it's doing to my blood pressure
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Swelling, swelling everywhere. I can’t find a reason for it, but it’s resulting in multiple issues for me.
In the fall of 2020, I nearly died from an ultra-rare disease called atypical hemolytic uremic syndrome (aHUS), an autoimmune disease in which my immune system attacks and destroys my red blood cells. But I also suffer from immune thrombocytopenia, which causes the destruction of my blood platelets, and thrombotic thrombocytopenic purpura, which causes small blood clots to form in my organs, mainly my kidneys.
These severe autoimmune responses can be triggered and activated at any time. Right now, it’s causing severe edema in my lower legs, ankles, and feet, along with swelling in my eyes (scleritis) and gums and uncontrolled high blood pressure. It was 196/165 mmHg yesterday!
Swelling up
Shalana Jordan’s feet and ankles have recently become so swollen that walking is difficult. (Courtesy of Shalana Jordan)
My feet and ankles have become so swollen that it’s hard to walk. It looks as though I have huge burn blisters across my feet and ankles. It’s cutting off circulation to my toes, and I can’t step properly because my ankles are too swollen to bend the way they need to.
My skin burns as if hot coals are lying across it because it’s been stretched so far. The swelling has spread up to my knees and is causing my skin to split, crack, and bleed.
My eyes have always endured short bouts of scleritis, an autoimmune issue that causes the whites of them to swell. This means every time I blink, my eyelids pinch my eyes. It’s like sandpaper rubbing over them.
I also deal with more severe bouts of May-Thurner syndrome when my inflammation gets this bad. This causes the left side of my body to swell more than the right side.
The swelling has gotten so bad that my nurses couldn’t get a blood pressure reading on my left side. The swelling on my left leg tends to be more severe and wakes me up at night.
Controlling my blood pressure
My blood pressure really concerns me. Low kidney function greatly affects blood pressure. My kidney function typically hovers between 16%-20%, so I regularly take three blood pressure medications to keep it under control. But in the last couple of weeks, nothing has been working.
My kidney function actually reached a huge milestone, hitting 23% for the first time in six years. This sounds great, but the rest of my labs look awful, my inflammation is the worst it’s ever been, and my blood pressure is through the roof. My medical team is stumped and concerned because a consistently elevated bottom number (diastolic) raises my risk of stroke or heart attack. Also, my aHUS treatment, eculizumab, isn’t safe to administer when my bottom number is over 100. I was given an emergency dose of blood pressure medications so I could do my aHUS treatment the past two sessions.
I think the worst part of inflammation like this is not knowing its cause or how to stop it. It affects many separate systems in my body and can cause minor or severe issues very quickly.
For now, I’ve been told to relax, elevate, and monitor my blood pressure and edema. Hopefully, this will pass as so many issues do after a few weeks of chaos.
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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