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  • June Okochi

Travel the World (with Sickle Cell)

Disclaimer: this should not be taken as medical advice for traveling. This is a guide solely derived from my lived and tried experience so I would advise anyone requiring medical support in the first instance to speak to your GP or haematology team before you take any holidays abroad.

I really love travelling and I am lucky to have travelled widely, I am clocking 50 countries and there are still a lot of places I am yet to visit. The world is big and beautiful. Everywhere I have travelled to remains enchanting and enriching in its unique ways and has left me with stories and experiences I will always cherish.

I personally think travelling is one of the most fascinating things in the world because it opens your eyes to new things. You meet new people, experience new cultures, hear different languages, taste new dishes and flavours, get to do a lot of different and interesting things you wouldn’t necessarily do at home. It’s also a time to relax, soak in couture, learn, feel, see, taste, and reflect. And for someone living with a chronic condition like sickle cell, it puts too many things into perspective for me.

So if travelling for healthy people could be stressful and tiring, think about how much worse it could be if you live with a lifelong chronic illness or condition like sickle cell where high altitudes are likely to trigger a crisis and lead to possible hospitalization.

Many years ago, my father (now retired) worked in aviation and between living/ working in 3 cities, Lagos, London and Paris, he and mum flew quite a bit when they started having children. I guess this was a great introduction to the world of flying as they travelled with me a few times when mum was pregnant with me even and after she had just me so they trained me well.

So combined with my experience of traveling as an adult, I thought it would be helpful to write a little guide for others and hope I can use some of my experience to encourage and guide other warriors who are worried to travel crisis free.

Those of you who know about sickle cell may be aware that flying long haul trips could have a significant impact on your health and the consequence is one that is likely (though, not always) to trigger a sickle crisis due to reduced oxygenation in high altitudes.

Of course, if you have taken the time off, booked and paid for holidays, the last thing you want is to be unwell.

So having flown over hundreds of thousands of miles and spent a bit of my adult life on air traveling and wander-lusting, these are some practical travel tips for people living with sickle cell:

Step 1 – Insuring your health

Ensure you have travel insurance before even booking your flights. This is essential as most insurance companies would rather you buy your package at least a few days or weeks in advance of travelling especially if you have a pre-existing condition. If you travel more than twice a year, it’s probably cheaper and better to buy an annual trip insurance package.

If you require a one off deal which is usually what most families may need during the school holidays, then it’s advisable to buy a one off package as it’s always a cheaper deal than the annual package.

I have used Goodtogo insurance company for many years as they cover people with pre-existing conditions including sickle cell. I have personally found them reliable and responsive in an emergency when I have been unwell a couple of times abroad. They provide an emergency number which my family or friends usually have access to and they advise of the closest affiliate clinic to attend in the city.

I have also recently started using the UK post office travel insurance and bought an annual worldwide package as I can travel 3-4 times a year across 3 continents. Your quote and cost of package will depend most likely on your personal health circumstance. For example, the numbers of times you have had a crisis, the number of hospitalisations you have had, if you have had a major complicated procedure or surgery. So the fewer crises I have had in a year determines how much my next annual insurance will cost.

Note that with travel insurances, in certain countries, you may be required to pay for your care at point of access and then claim the payments from your insurance company subsequently, so make sure you or your family have enough to cover you if you are asked to make payment to a hospital abroad. This is rarely the case as most hospitals should bill the insurance company directly.

If you live in the UK, you can get a European Health Insurance Card (EHIC) which is likely to cover some or all of your health expenses if you are ever hospitalised in countries within the European Union.

With Brexit over the line, there is some uncertainty as to how this will continue to work. So keep an eye out for updates.

Step 2 – Plan layovers if flying long hours

Once you have booked your holiday, depending on the duration of the flight, the destination and the duration of your trip, you will need some certain precautions.

If you can, where a flight is more than 8-12 hours long, it is recommended you break your flights by having a layover/stopover and then continuing hours later or the following day. It eases the impact of jet lags and the risk of a crisis which could be caused by high levels of altitude leading to a lack oxygen in the blood vessels or a lack of blood circulation. This could often result in a crisis.

As sickle cell is caused by the lack of oxygen from the red blood cells, flying long could easily impact people with sickle cell when you are thousands of miles above sea level, in extreme altitudes.

If you are travelling short hauls, step 2 probably is less applicable but ensure you move your body as frequently as you can to enable circulation.

Step 3 – Gather information

As a sickle cell crisis can be super unpredictable, ensure you find out the closest general or specialist hospitals around your hotel or place of residence at your final destination before you fly.

Ensure you make a note of the hospitals that could take care of you if you become unwell while out and touring. It limits any delays in your care.

Access to rapid response from an ambulance in under-developed counties could be a challenge so ensure a family member or friend has your personal details, hospital details of where to convey you as you may be required to get to hospital using a taxi or other forms of transportation. If you are travelling alone, communicate to the hotel or place of residence.

If you are in excruciating pain, as you know, it could be sometimes difficult to talk or communicate effectively before you receive pain treatment, so make all your personal and medical information as easily accessible as possible. I tend to write mine on my phone where it gives an option to write your medical history on the IPhone health app. You will be surprised the level of information that medical professionals will find helpful when they are treating you for the first time.

An example was when I had a nasty chest crisis in New York in 2018 and my partner, worried and scared to death managed to stay composed and knew my medical history and information was on my health app. So he just handed my phone to the paramedics who conveyed me to hospital and subsequently the doctors who treated me as I was too sick and in a lot pain to even speak.

My care plan was also embedded in my phone. You can take a picture of your care plan or email it yourself and save it on your flagged items.

In New York, the staff and Paramedics also respected my dignity and privacy by taking me through staff lifts and through the back door of the hotel into an ambulance. They were all kind, compassionate and sensitive and it made such a difference on top of an added anxiety of having a crisis away from home.

Another tip: Ask for the house doctor in the hotels. Most good hotels and resorts of good size will have a medical lead that can support you if required or at least point you to the right place to get support if required.

Step 4: Preventing Malaria or other possible viruses

If you are travelling to Europe, parts of North America or Australia, this is unlikely to apply. When I am unsure, I just ask my GP.

If you are travelling to Africa or other tropical regions in the world, check for malaria prevalence as you will be required to take anti-malaria precaution or certain prophylactics if going to malaria prevalent regions. I would advise to speak to your GP in this case. They always know when vaccinations are required in any region of the world and can prescribe the right medication for you.

My parents and some of my siblings live in Nigeria so I tend to travel to visit my family which means I have to start taking my prophylactic at least 3 days before.

Note you may want to do this a week before as it allows time to start taking the medication to protect yourself before arrival to a malaria prevalent country. Malaria and sickle cell are not great friends, trust me! J

There may be other air-borne diseases to be mindful off so ensure you contact your GP if you are unsure.

Now it looks like the travel industry may be introducing covid-13 vaccination passports so get vaccinated before you fly

Step 5: Staying well and proactive before your trip

If you are going to spend over 3-4 weeks away at any time, it’s important you discuss with your medical and nursing team in hospital to ensure they are aware. Ask them for contact information incase you need to reach them.

For long haul flights far away from home, you may require a blood exchange if you are on this treatment to ensure your hemoglobin levels are normal. You must discuss with your doctors if you are unsure.

You will require sufficient medication (including your pain treatments) for the duration you are away and even a little extra incase you become unwell and become stranded for whatever reasons - delayed flights, adverse weather, security or conflict issues or even a breakout of a disease like they have recently had in China with the coronavirus. It could anything outside your control that stops you from coming home at your planned departure date. So take more than enough always!

You will require an accompanying letter from your doctors stating the list of medications you take, your diagnosis, any complications you have and what medication you are travelling with incase the security airport officials question you. This is always helpful as traveling with lots of opiates and analgesics could pose a small issue at security gates. I always just take a copy of my last outpatient letter as this always has an up to date record of my medical history.

The letter may also indicate that you have sickle cell and may require oxygen in-flight as if your saturation begins to drops, this could trigger a crisis. However, be mindful that if the airlines perceive you as being unwell or unfit to travel, they may not let you fly. Its really in their discretion and of course, they need to be risk averse. So the letter has to state you are well and medically fit to fly, however, if you become unwell, you are likely to require oxygen. Now I do not always need this as I am usually well most times. However, I have required it once or twice after I had a bad episode of acute chest syndrome so my lungs were still recovering from a bad trauma. So this is really at your discretion.

As mentioned above, you will require your care plan either on your phone or in your carry-on for any eventualities on the plane or at your destination so medics know what to do and understand your personalized treatment protocols. They may not always have an exact pain medication on your care plan, but if they have your record, they will tend to give you an equivalent or similar to your treatment threshold.

List of things you should have on board:

  • Of course, your passport and travel documents

  • Your sickle cell care plan

  • Pain killers and other daily routine medication

  • An extra blanket as it gets too cold on flights. I don’t personally find the ones provided in-flight long or thick enough so I tend to take my travel thermal blankets which you can find in most online stores.

  • An oximeter to monitor your saturation levels when altitude is significantly high, you could use it as evidence to ask for oxygen with that letter from your doctor when your sats drop.

  • Travel socks to control blood clot or manage circulation which could prevent DVT in sickle cell. You can buy these from any pharmacy.

  • Take a lemon and a little pot of honey for your water as this helps reduce the risk of bacteria or infections in long flights especially when passengers cough and sneeze in a tight air cabin. Or just ask the air host/hostesses. I usually ask for warm water, lemon and honey. Evidence has it that you are more likely to catch a cold in a flight than in your usual day to day environment.

  • Take a spirometer and use it if you feel a little tight in your chest as this helps expand your lungs.

  • Bottles of water once you pass security especially for long haul flights as you only get small cups of water on the flight and trust me you want to stay as hydrated as you can on a long haul flight.

Things not to do on a long haul flight and if you can on a short flight

  • Do not sit tight! Move about.

  • Try to avoid caffeinated drinks, teas, coffees, energy drinks or alcohol.

  • If you are in pain, do not sit calm, ask for help. The sooner you get help, the better for you, the rest of the passengers and you could be saving the rest of your holidays.

Things to do in your flight (especially long hauls)

  • Book an aisle seat as this is easier to support movement.

  • Take regular breaks by walking or pacing up and down the aisle. Do this every hour. This may look odd and embarrassing but trust me it does wonders for your circulation. Sometimes I have a friendly chat with the crew at the bar, they are usually very lovely when they are not busy.

  • Drink lots of water and fruit juices. Infact start hydrating 24 hrs before flying, it does a lot for the body.

  • Ensure you eat warm food at least once on a long haul flight.

  • Move your feet, neck and hands regularly in circular positions to ensure you are regularly in motion. Again this helps circulation.

  • Dress warm and wear free loose fitting clothing - this is always advisable.

  • Wipe and moisturize your hands, face and neck before landing to clean up stale air or moist residue.

After your flight

  • When you land, do not rush into any physical activity that will strain or exert you. Remember you may be jet lagged and that alone is a trigger risk in itself. So this means you will need lots of sleep, rest and hydration and a good meal.

  • Once you have had a day or two to acclimatize, and you feel well and fit, then you can explore and continue your adventure. This is important as people with sickle cell need some time to adjust to different climate and weather conditions.

  • Ensure you have a backpack with a bottle of water, your medication, an umbrella or a cardigan for when/if the weather changes.

  • I usually pack thermals and a mini hot water bottle if travelling to somewhere cold because if the air conditioner in the hotel room becomes unmanageable or the hotel room is colder than normal, then I have a back-up plan. But also, when I travel with my family, my partner or friends, their body temperatures are different, so they may feel warm and I may be freezing so rather than argue about the temperatures of the aircon or heating, I just wear my thermals and layers and everyone is happy! J

  • If the weather is very warm, remember to dress light and expose some skin if you feel comfortable to. Drink even more than normal. And on a very hot tropical day, you don’t want to over exert yourself by climbing mountains and running marathons as this could be detrimental to your health. Find shaded places to rest. For example, I love orange trees in Spain and palm trees in the Caribbean so I usually stop for shade if I am wandering and enjoy a cold drink or some ice cream.

The final advice is DO NOT overthink anything, relax and have a fabulous holiday because that’s all that matters in the process. The moment you begin to build a level of anxiety, this becomes a trigger for a crisis and really all you want is a holiday that is perfect for you and absolutely pain-free.

You are welcome!

Please share tips of how you cope with traveling living with sickle cell. I would love to hear from you.

To read some of my travel stories, click here

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