Weight fluctuations can be a challenging part of life with aHUS

Weight is a popular topic here in the U.S., and “skinny” seems to be the desired standard. Celebrities, regular working people, and even teens and children are constantly pressured to be thin. But what happens when you have a rare, chronic disease that wreaks havoc on your body?

I spent most of 2019 and 2020 on a weight-loss journey. I went to a hypnotist because nothing else was working, and to my surprise, I lost 110 pounds! It was amazing. But then the unthinkable happened.

In September 2020, I ended up fighting for my life in the intensive care unit due to multiorgan failure from atypical hemolytic uremic syndrome (aHUS). I developed myriad complications and comorbidities that affect me to this day. I still take a half-dozen medications and have chemotherapy every other week to keep my condition stable.

But something that’s rarely talked about is the toll a rare disease can take on your weight. Some of us lose a lot of weight as illness ravages our body. Patients can lose 20% of their muscle mass after only 10 days in the ICU, and I was there for nearly two months. I lost 15 pounds while in the hospital.

I also have a few aHUS friends who have a hard time keeping weight on due to dialysis, medications, chemotherapy, and other physical issues. Losing too much weight can have negative side effects, such as fatigue, changes in blood pressure, hormonal dysregulation, gut issues, and more.

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Then there’s the other end of the spectrum: weight gain. Many patients are prescribed medications that can contribute to an increase in weight, which may also result in a number of health complications.

In the past few months, several celebrities with chronic illnesses have been in the spotlight due to weight gain. Actresses Selena Gomez, who has lupus and is a kidney transplant recipient, and Christina Applegate, who was diagnosed with multiple sclerosis in 2021, have both said that their medications were the cause.

My struggles with weight

After I was released from the hospital, my weight fluctuated a lot. I was still doing outpatient dialysis, which gave me a lot of stomach issues. But then I started a menstrual cycle that didn’t end for nine months. My gynecologist had me try multiple forms of oral contraceptives in an attempt to stop it, but none of them worked.

The last medication I tried was Provera (medroxyprogesterone acetate). This made me gain 50 pounds in just six weeks! I spent months begging for a hysterectomy, and although I had to jump through many hoops to get it (that’s another story), I finally had the surgery and started to feel much better.

But now I had an extra 50 pounds to lose. At only 5 feet tall, I have a small frame, so that amount of weight was hard on my body. Unfortunately, aHUS and chemo make exercise hard. I experience shortness of breath and get cramps in the leg that’s affected by May-Thurner syndrome, my blood pressure spikes and drops easily, and my bones and joints hurt.

I spoke at length with my medical team about my options. Could I take weight-loss medication? No. Could I have gastric sleeve or bypass surgery? No. Could I take diet pills? No. Could I have liposuction and skin removal? No. Everything I asked about was met with a hard no because my kidney function is so low. My doctors all seemed to have the same attitude: “You’re lucky to be alive. Be happy with that.”

I am thankful to be alive. Being a walking miracle is always at the forefront of my mind. But quality of life is important, too. So I’ve had to seek alternative ways to get this weight off. I’ve scoured mom groups on Facebook, weight loss videos on TikTok, and posts on other social media platforms for ideas.

And I’m ecstatic to have found something that’s working for me — a generic probiotic. I’m down 34 pounds with no exercise and no dietary changes. Of course, I would never take any medication or supplement without first consulting my medical team. But they approved this for me, saying a probiotic wouldn’t impair my kidney function.

The conventional scope of Western medicine doesn’t always have the answers. Weight isn’t a black-and-white topic, as everyone’s body, diet, and physical activity vary. But I know how awful it can be to constantly be haunted by societal standards and the side effects of weight fluctuations. I’m thankful I’ve found an option that works for me.

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.