A new doctor brings something that’d been in short supply: Hope
In medical care, being heard is just as important as being treated
I nervously tapped my foot while waiting in the examination room to meet my new nephrologist. I could hear him talking in the next room, so I knew he was finishing up there. When he walked in, he extended his hand and introduced himself. But he stumbled on his words and stared at my face.
The interaction was strange, but I cut through the awkward silence by introducing myself. He quickly recovered as he went to his computer and began what I call “the interview,” in which I tell my rare disease origin story.
I was seeing a new nephrologist because I’d recently moved here from another state. I have a complicated medical history because of my atypical hemolytic uremic syndrome (aHUS), a rare disease that nearly killed me in September 2020, when I spent nearly two months in the intensive care unit in multiorgan failure. Unfortunately, the damage was permanent, so I’ll have lifelong comorbidities affecting my kidneys, liver, and heart.
When I first became ill, my kidneys were functioning at less then 5%, which is considered end-stage renal failure. After plasmapheresis, 18 blood transfusions, dialysis, and a biweekly infusion of Soliris (eculizumab), my kidneys regained some of their function, currently hovering between 16% and 20% — just barely above the point where I’ll need dialysis again.
That’s why it’s crucial for me to have a nephrologist. My kidneys will always be in danger, so I need to be closely monitored for worsening kidney damage, sudden blood abnormalities, and other possibilities. It’s also important to have a kidney professional I can consult to know which medications are safe for me, as my kidneys can’t process some of them.
What it feels like to finally be heard
As we went through my origin story, I mentioned that while I was in the hospital, my medical team initially thought my kidneys were being attacked by another disease I have. Before I could finish the sentence, the doctor asked, “Did they suspect lupus nephritis?” The puzzled look on my face confirmed his suspicion.
He nodded and said, “When I first entered the room, I know I paused awkwardly and stared at you. It was because I could tell by the shape of your face that you have lupus.” I was pleasantly shocked. This doctor had known me for only a few minutes and was already able to identify issues without reading them in my chart.
It’s very rare for me to find a doctor who’s knowledgeable enough to manage my case. It’s even harder to find someone with experience treating aHUS. To my surprise, he’s even had an aHUS patient before.
My biggest goal for this appointment was to ask if weight loss medication would be safe for me, particularly tirzepatide. Like many other patients in my aHUS support group, I have issues with weight gain. Several of us who are taking Soliris have been experiencing it slowly but consistently.
I’ve spoken with doctors about weight issues in the past, but I don’t feel like my concerns were taken seriously enough, which is frustrating. Quality of life is important. Yet I spend every day with uncontrolled hypertension, get winded when I walk, and experience swelling. A higher weight affects my kidney function and the edema in my feet and legs, and it also increases my risk of stroke.
My new nephrologist agrees with my concerns. Thankfully, he said tirzepatide is safe for me. It’s actually been found to be beneficial for kidney and heart patients, which I already knew from my research, but wanted to confirm.
He also noticed something no one else has: my low potassium levels. When I was initially hospitalized, my potassium levels were through the roof, which is normal for someone in kidney failure. So I went on a low-potassium diet that I continue to follow now. But he noted that even with the diet, it’s not normal for my potassium levels to be so low.
He thinks my weight issues are caused by unchecked damage to my adrenal gland. If it was damaged during my first aHUS attack, then I might be producing too much cortisol or aldosterone. These are two hormones the body produces, but in large quantities they can cause weight gain, hypertension, and several other symptoms I have. That’s a huge revelation. He’s scheduled extensive blood work and labs to see if that’s an underlying issue.
It’s frustrating to ask for help with something and repeatedly get blown off. It’s equally discouraging to do everything you can think of to lose weight, to no avail. So I’m excited about these new possibilities.
Aside from weight loss, it’s more important to feel heard. Having confidence in your medical care is crucial. I never realized how much I’d need to advocate for myself in the medical world. We know we our own bodies better then anyone else, so if something doesn’t seem right, it’s important to continue pushing for answers.
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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