Life is strange and so are the many directions it takes you. Never did I imagine I would have a double-lung transplant in 2014 and eight months later pick up my belongings, my life, and my healthcare and move across the pond to England. This was never some lifelong dream, and yet my English husband and I found ourselves in the midst of a medical insurance nightmare and felt the only way to truly move on was to move somewhere where healthcare was guaranteed and not tied to a job or a government program.
I am beyond grateful for the care I received from my transplant team in the states, and I am beyond grateful for my donor and their family. With that said, everything that happened after my surgery felt like a nightmare we truly could not get out of.
Medical insurance in United States is complicated — add social security disability to that and sometimes you don’t know which way is up. My insurance company wanted all of the money from my transplant four months after I received my miracle lungs. Wires got crossed about who my primary and secondary insurances were, and we were caught in an impossible scenario — either pay thousands of dollars out-of-pocket or fight the charges and fill out forms to prove we didn’t make enough to pay those bills.
At the time, my husband and I were living in California without family support. My family was in Chicago, and his was in England. We knew we could not sustain looking after my health, protecting his mental health, keeping his job, and fighting insurance at every turn. We had to do something radical to reset. England seemed like our best option.
England has the National Health Service (NHS). The NHS is based on our taxes and while some people have to pay for medications, every medication is capped at the same amount, which is under £10. Some people — depending on their circumstances or disease — get free medications. I get free medications due to having diabetes.
Moving to England was hard. We had done some research that the NHS would care for me due to my marital visa, and we contacted CF centers and transplant centers in England to let them know I was coming. My husband hadn’t used the NHS much in his life, so he had no idea how well it would work for someone with a life-limiting, chronic illness. We took a leap of faith.
Expat life in general is hard. Culturally, things are so different. Words are different, even in the same English language. I stuck out with my American accent and big puffy prednisone cheeks from my transplant.
However, navigating my access to care went much smoother than I thought. I was able to sign up with a general practitioner immediately, who referred me within days to the transplant hospital. The transplant team was so welcoming and listened to all my medical issues that were still occurring so soon after my surgery. They walked me through their process and how I would obtain medications. I got my medications set up through the hospital’s outsourced pharmacy who call me each month to set up a delivery. These days, I never see a bill or wait for prior authorization.
The NHS is a huge system working for millions of people, and although it seems behind the times here and there — they still use paper instead of scanning a wrist band — hospitals themselves look tired and worn down, and staff get paid a fraction of American medical salaries — the care I have received is some of the best I’ve had.
That’s not to say I have crossed the ocean and never looked back. I miss things about my healthcare in the U.S., like better food in the hospital, being able to call a specialist myself instead of waiting for a referral, and more modern medical technology.
As we all know, taking care of ourselves, living our lives day-to-day, and trying to fight with insurance companies are all hard to manage at times. These tasks have been taken off my plate, and have saved my husband’s and my sanity.
I like to say I kind of float in the Atlantic Ocean. I don’t so much belong here, but now that I have been an expat for almost 10 years, I don’t feel like I belong so much in the states either. It is the constant push and pull between trying to fit into my new home country and keeping roots back in the U.S. that make me feel like myself.
I do see family when I can and travel home for holidays. I also firmly plant myself in the American online CF/transplant community as much as possible. I’m a peer mentor for CF Peer Connect, I have facilitated transplant groups for BreatheCon, I have done cooking demonstrations for CFRI, and I keep in close contact with friends who have CF that I have known for decades. I’m trying to engage more with the CF Trust here in England and add programs for teens and adults to interact more online in support groups and conferences. I hope to set up a cooking demonstration for teens with CF teens soon. Planting myself in communities in both countries is important to my psychosocial well-being.
I’m not sure if England will ever truly be home with its gray and rainy skies, but the U.S. also feels like an impersonal and harsh place for someone who has a medically challenging life. I feel well taken care of here by a country that is not even my own yet has given me 10 long years with these beautiful lungs.
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