In this column, I want to share the story of a friend who needs a triple-organ transplant: lungs, liver, and kidneys.
Before I delve into his experience, I’d like to provide some context about me. I have cystic fibrosis (CF), and through my writing, I was offered a position as Community Manager at Cystic Fibrosis News Today. I share my experiences living with CF and other conditions — massive hemoptysis, autoimmune disorders, and depression, to name a few — to advocate for myself and the entire CF community.
In my role, I receive requests from people with CF who want to be featured. I do my best to honor these requests. A few weeks ago, I received a message to our Instagram account from a man who needed help.
Daniel Mendizabal is a 34-year-old musician who was recently turned down from a hospital for a triple-organ transplant. While his nearest center was willing to take on his complex case, that center doesn’t take his insurance. Having read his message, I immediately thought of ways that I could share his story. So I asked him if he was interested in being our Man Crush Monday.
When I feature community members, I encourage them to tell their story in their own way, sharing who they are with and outside their illness. I know this is a powerful way to advocate.
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Following a long phone call with Daniel, I realized I had met a soul-friend and someone with a bizarrely similar CF story to mine. The friendship that unfolded took me completely by surprise. I know that it sounds crazy, but sometimes you meet someone, your soul resonates with them, and you feel as if you’ve known each other for your entire lives. This frequently happens in the CF community.
I learned that he had two lobes removed due to massive hemoptysis; my adolescence was defined by the gripping and abrupt terror that coughing up cups of blood induces. The feeling of choking on your life source, your blood, is petrifying. It’s not unusual for people with my disease to cough up blood, but it’s not commonplace to expectorate such large volumes.
The more he shared his story, the more I heard reflections of mine.
Five years ago, I developed a rare autoimmune disorder called Henoch-Schonlein purpura. My body ravaged itself, my capillaries became inflamed, leaving me with severe pain and rashes on my legs. It was the most horrifying experience I have ever had. I hadn’t met anyone, let alone another person with CF, who had experienced anything similar.
Daniel told me about a hospital admission when he developed vasculitis, which affected his kidneys, leaving him with rashes, and in severe pain. I could hardly believe what I was hearing. I asked him to send me photos of the rashes, and it was like looking at my own pictures. I was bewildered and felt a sense of profound camaraderie. I wondered why we have such wildly similar experiences.
However, the parallels between his experiences and mine ended there. Fortunately, my body has weathered these unusual storms. I sit here breathing at a lung function of 84 percent, the highest I have ever had. Meanwhile, Daniel is across the country, in Westminster, California, with a lung function of 26 percent, kidneys that require careful monitoring, and a liver scarred by disease.
How do you deal with a body crippled by disease?
We are often asked this question. While you might find it to be patronizing, for this column, we should realize that love and kindness know no limits. Letting yourself be vulnerable to love without fear allows magic to happen.
My heart has witnessed miracles, and the people I have encountered have shown me the meaning of faith. I have been lucky that people have believed in me, and because of their willingness to care for me, I am alive. I am here spending time with my family, cuddling my dogs, and marveling at my life. I know that with support and perseverance, it is possible to manifest the impossible.
I hope that Daniel can marry his best friend, Lisa, and continue to make music.
Right now, Daniel needs a center to see him and evaluate his case. I hope that by sharing this story of two similar lives that have taken profoundly different turns, that maybe, just maybe, we can rally enough voices to get him evaluated. Everything else is up to placing trust in the surgeon and the universe.
Note: Cystic Fibrosis News Today 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 Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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