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What I Wish I Had Known Before Moving Abroad With a Chronic Illness

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Moving halfway around the globe can be a nerve-wracking experience for even the healthiest of individuals. It involves stepping outside of comfort zones, building new social networks, navigating foreign areas and communicating in a different language. For those of us with a chronic illness, however, the choice to move to another country can seem impossible. Moving abroad is a herculean task involving extensive planning to ensure that our bodies will be able to handle the stress of adjusting to a new environment with different emotional and physical triggers.

Before I accepted a job in Hong Kong, 8,000 miles separating me from my friends and family, I had to calculate the realistic possibly of managing my chronic illness in a country with a lower incidence rate of inflammatory bowel disease (IBD). While 238 people for every 100,000 have ulcerative colitis in the United States, it is estimated that only 26.5 people for every 100,000 have ulcerative colitis in Hong Kong. Although the prevalence of those affected by ulcerative colitis is lower in Hong Kong than in the United States, the incidence rate for new diagnosis continues to climb throughout Asia.

Even though I realized it would be challenging to manage my illness in Hong Kong, I thought I was well prepared to take up this new adventure. After all, the worst-case scenario would be hospitalization. “Being in remission for the past three years, the chances of that are extremely low,” I thought. A mere three weeks after I walked through immigration at the Hong Kong International Airport, this worst-case scenario transpired.

My immune system, already weakened under the immunosuppressive medications used to manage my ulcerative colitis, tanked under attack from an aggressive form of the Epstein-Barr virus. I spent 18 days hospitalized in Hong Kong with a 105-degree fever and supervised by a team of doctors consisting of an infectious disease specialist, internist and hematologist in Hong Kong and my gastroenterologist in St. Louis. When they had exhausted all treatments in Hong Kong, my doctors decided to medically transport me to a hospital in the United States. Although I ended up surviving my worst-case scenario, my treatment and recovery process would have gone smoother had I prepared more fully. If I could go back in time and redo the preparations I made for my move to Hong Kong, there are a few tips I wish I could have told myself.

For the first few weeks in Hong Kong, I focused mainly on practical chores such as finding an apartment and opening a bank account while postponing social engagements in the office. Due to my priorities at the time, I knew only a few people in my office and had not formed a strong enough relationship with other friends outside work. When I found myself alone in the hospital, I realized how isolated I truly was. There was no one I knew to bring me drinks, food or to sit with me to distract me from the pain I was constantly feeling.

If I could repeat these first few weeks in Hong Kong, the first piece of advice I would give myself would be to focus on building a support system. While it is important to sort out a permanent apartment, find the local grocery stores and adjust to normal life, it is equally important to seek out people on whom you can rely during times of crisis. This means going to lunch with as many coworkers as you can, spending weekends participating in meet ups or engaging in other group activities that you enjoy. As someone with a chronic illness, being part of a social group might become a vital component in combating any health crisis you might face.

During my 18-day stay in the Hong Kong hospital, I overheard many debates between my nurses and specialists about how to best handle my illness. Having dealt with only two cases of IBD, the nursing and medical staff were not just unsure of how my disease would be affected by the medications used to combat the symptoms of Epstein-Barr, but also doubted the effectiveness of the long-term treatment plan for my ulcerative colitis. They had never encountered an immunomodulation therapy involving 6-MP (mercaptopurine) that was used for long-term treatment outside of chemotherapy for leukemia. The debate over the correct treatment for me continued until I brought my IBD specialist from the US into the conversation. Eventually, with the teamwork from the local specialists and my home GI, they were able stabilize my condition.

If I could repeat the preparations for my move, the second piece of advice I would give myself would be to partner my home specialist with a local doctor to provide long-term and emergency care of my illness. Often, the specialist you have in your home country can recommend or research a colleague they might have practicing in another country. If you have found a doctor and treatment plan that works for you in your home country, it might be worth continuing to see that doctor every six months to preside over your long-term treatment. In my case, my company allows me two home leave trips per year to go back to the United States to see both my GI and primary care physician. Since these doctors cannot supervise over daily issues or respond quickly enough in the case of an emergency, it is important to find a doctor locally who will work with your home doctors to monitor your illness and conduct any necessary procedures.

My admission to the hospital is almost a complete blur, but I do remember handing over my credit card several times to pay for my room, meals and for any medicine administered to me. At that time, I was not concerned about the cost of the hospital stay. At discharge, I was given a dose of reality when I saw the final bill was $380,000 HKD ($49,000 USD). Luckily for me, my company has emergency insurance (International SOS) for all its employees overseas that greatly reduced the price of this bill.

If I could redo my move, the third piece of advice I would give myself would be to check all the details of my medical insurance policy, including what is considered in and out of network. Before I left, I should have gained a deeper understanding of which doctors and hospitals were covered under my US insurance policy, how to file international insurance claims and how the emergency international insurance policy worked. In my case, this insurance guaranteed payment for my hospital stay and my medical transport back to the US. When I was told I was to be admitted to the hospital, the nurse informed me I should bring in all the daily medication that I take. Some of these medications, especially the Lialda for my ulcerative colitis, do not exist in Hong Kong. Due to this, the hospital pharmacy had no choice but to dispense medication to me from my personal stash (with a dispensing fee attached, of course). While my final pharmacy bill was high, I was happy I had brought six months’ worth of my daily medications into Hong Kong.

If I could give a final piece of advice, I would remind myself of the importance of diligently managing medications. Before I left for Hong Kong, I spent hours on the phone with my doctors’ offices, prescription insurance customer service representatives and the local pharmacy to ensure I had at least six months of my medication to bring with me, as I knew Hong Kong did not allow my medications to be shipped to me from the US. This forward thinking attitude ensured I would continue my treatments, uninterrupted, until my next visit home.

This medication management took around four weeks in total from start to finish. The first step was researching the country formulary to see what medications were readily available in Hong Kong. Next, I asked each one of my doctors to write a prescription for a year’s worth of medications and called my insurance company to get an override for early refill. In my case, the early refill requirements were anything over three months’ worth of medications.

Once all of this was processed, I ordered my medicine for home delivery and waited for it to arrive. The final step for me was to request letters from each of my doctors that stated the medically necessary medicines I would be bringing into the country. This is not a necessary step, but I would recommend it in case customs officials are suspicious of the 180 mesalamine enemas you might have stored in your suitcase.

Although I would like to live a normal life, I often remind myself that living with a chronic illness means I should be more diligent than a healthy individual in preparing for any circumstances that might occur. It takes more work and patience to live this way, but I have learned that with a little research and a lot of preparation, tasks that seem like impossible fantasies, such as moving abroad with a chronic illness, slowly become probable realities.

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Thinkstock photo via YakobchukOlena.

Originally published: May 19, 2017
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