Blog post

It is not just about you: Social distancing for immunocompromised people during coronavirus

"I am a two-time kidney transplant recipient, I am immunocompromised, and I am high risk for COVID-19. My life could depend on whether or not you follow social distancing recommendations." Read AKF Ambassador Alysia's story on our blog.
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For two and half years, I impatiently waited for a phone call that would save my life — again. I felt the constant dread of the unknown — when would I get the call letting me know another kidney was waiting for me? When would my second transplant happen? I put my life on hold waiting for that call, which meant limiting my travel, not making plans and staying close to home, so I could easily be available and ready to go to the hospital for surgery at a moment's notice. 

I did not think I would have that gloomy feeling of life's unknown so soon again after my second successful transplant surgery, but this COVID-19 pandemic has brought back many of those same feelings I had while waiting for that call. There are too many things out of my control right now and I cannot help but run through a list of what-ifs in my head. Now I am back to staying close to home — not leaving home, actually — to minimize my chances of becoming exposed to the coronavirus.

I am a two-time kidney transplant recipient, I am immunocompromised, and I am high risk for COVID-19. My life could depend on whether or not you follow social distancing recommendations.

I take immunosuppressive medicines to stop my body from rejecting my transplanted kidney. These medicines help keep my new kidney functioning, which keeps me alive. These medicines are also what makes COVID-19 so dangerous for me. 

I have been fighting kidney failure since I was 8 years old. I have spent most of my life following the advice of doctors to protect myself and my transplanted kidneys, so I can stay safe and healthy. Now, suddenly, my life depends on others doing the same by listening to the recommendations to practice social distancing and following the orders some states have put out to stay at home. I fought hard — both physically and mentally — to be where I am today, and this scares me so much. I want to feel safe in my community.

My biggest fear during this crisis is losing my kidney or worse, dying. I am strong, but am I strong enough to fight the virus with a suppressed immune system? If I get COVID-19 and survive, does my body have what it takes to go through dialysis and transplant again? Does my family have it in them to go through that again with me? What if my doctors test positive for COVID-19 and cannot help me? What would my care look like? What would it be like to wait for yet another transplant? These are the questions cycling through my head as I am quarantined at home. 

I want to live.

Someone saved my life. Not once, but twice. Everyone, whether healthy or sick, has the ability to save countless lives right now, too, by listening to experts and practicing social distancing.

Please practice social distancing and think of me. Think about my fight to live. Think about the hundreds of thousands of other people with kidney transplants, like me, whose lives depend on it.

You can find more information and resources for kidney patients by visiting our special COVID-19 webpage. AKF will update the page with important information for kidney patients and their caregivers as the coronavirus crisis continues to unfold.

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Alysia Yamasaki

Alysia Yamasaki is an Ambassador in AKF’s Advocacy Network and a two-time kidney transplant recipient.