International Travel with a Chronic Illness


Our Next Adventure Part 1

Having managed tripping up and down the North Island of New Zealand over the last 4 years, including flying, just to see how it would go, Derek and I want to venture a little further.

The Practice

To begin our preparation for an international flight, the first thing we did was try flying to Auckland.

It required a trip to the Airport, then flying to Auckland, and driving to Hamilton.

Derek took extra medication to fly.  He took extra hydrocortisone for the drive to Hamilton from Auckland.  He then lay down for a long rest when we got to Hamilton.  He also had to rest the next day, but that is normal when we travel any kind of distance.

On the whole, the trip was good.  We listened to others’ advice, had learned what Derek could manage, and when he needed to up dose.

Flying Further

This time we decided to go to Australia.  Originally our first trip overseas was going to be to Sydney or Melbourne for a weekend for a Show. After being offered a trip to Fiji earlier this year, and the realisation that a 2 day trip would be way too hard, we thought a longer trip would be better.  Because a friend with Addison’s was heading from Hong Kong to Brisbane for medical treatment, and we had friends in Brisbane, that was going to be our destination.

We are not the first to travel with chronic illness, and we won’t be the last.  When you look around the cue of people going to the flight, you don’t know who has a chronic illness, who has spent days and weeks preparing, and who has just grabbed a ticket and headed to the airport.

I asked my cousin, who’s husband has several serious medical issues, what they do to take a trip.

Trev just sorts all his medication and I just carry it…never had any problems, I think I have only been asked once and they were good about it. I never carry hospital documents but for you guys being a first since Derek has been sick, just get your GP to write a letter out lining the diagnosis and a list of the medications on the letter. Never really had problems with insurance just be up front about it all, you may not get full cover but shop around. We don`t stress about overseas travel, there is always a hospital where you go if things don`t go to plan. Just relax and enjoy the trip. We are probably not a good example…as we are pretty relaxed about it and just roll with it…lol…isn`t that naughty, but thats just us…great place we have just come back from there.

The trip they had returned from was a trip to celebrate 25 years since “Trev” had an organ transplant.  (By the way, I am totally in favour of organ transplants.  It saves lives, including that of my cousin’s husband so please think about donating organs if the unfortunate need should arise).

Booking the ticket.

We have made the decision to travel over to Australia.

Now What?

Do we need to get permission from the Dr?

We don’t believe so because we went to see her about going to Fiji with a work trip for Derek, and she said no, because of the risk of food poisoning, the possible need for INR while there, and the short time frame.

But she said that if we wanted to travel somewhere else, like Australia or England, then yes, she would make sure we could do it.

We bought the tickets. tickets

When I booked it, I also requested a wheelchair at both ends.  That meant an alert on the ticket booking, and I had to call a number, and speak to someone.

The flight is a Partner flight, which means we are booking through one airline, but the flight is provided through another, so there was a delay while the confirmed that the wheelchair was available.

We knew from experience going places with Derek he could not stand in line long.  He gets very fatigued just waiting at the supermarket, and if there are more than 2 in a line, he has to sit while we wait.

Then there is the timing of the flight.  We could fly out at 11am.  That would mean Derek could wake up as normal, and we could take our time.  But that also meant 9-12 hours flying as we would have to fly from Wellington to Auckland, wait for 2 or more hours, then fly to Brisbane.  We would arrive at night, and it would be a very long day.

That would take more out of him.

Alternatively we could fly out from Wellington at 7am.  And then fly for 4 hours, directly to Brisbane, and land at 8am Brisbane time.

This meant a lot less travel time, but a very early morning.  Derek normally wakes at 6am, takes his first round of HC, then goes back to sleep for an hour while he waits for his meds to kick in.

This trip would mean waking him at 4am to take his first round of HC, Drive to the airport, have breakfast, then check through Customs. (hopefully we haven’t got any fines that hold us back).

So next we book an appointment with the Dr.  We need:

  • A letter for treatment protocol (if he suffers an Adrenal Crisis)
  • A letter confirming he is able to fly (because of Antiphospholipid Syndrome and risk of DVT)
  • A list of medication (it needs to be declared at every port entry and exit).
  • Any meds he may run low on before he leaves, or soon after he gets back.
  • We also need to organise an INR when we land in Australia. This is the bit we are unsure of, but the essential bit to make sure it hasn’t dropped too low while flying, which could mean a blood clot.

Then there is Travel Insurance.

Normally you just buy it when you buy your tickets.  All you need for Australia is cover so if you get waylaid, you can get a change of ticket.  But if you have extra conditions, you need to tell them about them.  Then the cost goes way up.  It went up by $150 for Derek.

But we don’t know if we have declared everything as they didn’t have the ability to declare the catastrophic event he had.  And I hadn’t declared his prostate cancer.  Oh well, looks like a phone call.

I got two quotes.  So we needed to call both companies to see how things would change.

After a long phone call to each company, Derek’s insurance was going to cost $6 extra for the prostate cancer which is in remission.


Emergency Kit

The Take Every Where Kit

We would need a list to make sure we took everything.   It currently sat in multiple areas of the house.  We also needed to make sure it all had a proper prescription labels.

When my friend Wendy travelled from Hong Kong to Australia I told her to declare, declare, declare.  If she declared everything she would be fine.

I was going to work on the same principle.  But that is not the case for Derek as he takes DHEA (Dehydroepiandrosterone).  It is classed as an anabolic steroid, and therefore restricted.  Derek needs a licence to carry it into Australia, even as a prescription medication.

And one of his other medications needs authority to carry it out of New Zealand and then back into the country.

So, we have a Dr’s note x 2, we have an emergency letter, we have an application to take his medication into Australia.

We can only carry a month’s supply in and out of New Zealand but that’s fine because we are only away 6 days.

We have to wait to hear from the Dr regarding whether he needs 1 more medication for the trip, but otherwise, we have things ticked off that we need.

Getting all the advice is key to a successful trip.  So I went seeking advice.

Travel Advice from the Experts

The Addison’s Disease Self Help Group UK has some great advice:

  • Good general advice for long distance air travel includes:
  • Remember that air travel is dehydrating so you will need to drink more fluids than usual in the air. Drink alcohol, cola drinks, coffee and tea sparingly as these dehydrate the body further. If possible, carry a large bottle of water in your hand luggage. If you forget to bring your own water, be assertive about requesting extra refreshments from the cabin crew.
  • Walk around the plane as much as possible. Try to get up out of your seat every two hours to stretch your legs and keep the blood flowing.
  • Many chemist shops now stock knee-length support socks, which can help prevent the formation of blood clots that might lead to a deep-vein thrombosis (‘stroke’).
  • Adjust your watch to the time of your destination as the flight begins, and adjust your in-flight activities to that new time zone as well. Sleep through the in-flight meals, if necessary, to get attuned to the new time zone.
  • Try to book flights that allow you to arrive at your destination in the late afternoon or early evening local time, so that you get a night’s sleep at the end of your travelling. Flights which arrive in the early morning local time will leave you tired after travelling but having to stay up all the day before you get a proper night’s sleep.

So we missed the last one.

But we are going to stay at the house of an Addisonian, so they will know that Derek will be going to have a sleep when he arrives.

So everything we can think of is ticked off.  Now to wait.

Now to wait for the actual trip.

We are excited about the trip.  We have thought of all the possible issues, and taken care of everything we can.  Derek isn’t being wrapped in bubble wrap, but we are reducing the risk as much as possible without saying, “too hard, not going.”

Next Chapter – The trip.

I am hoping this will be a very dull chapter with just the excitement of having the Sunday lunch with other addisonian’s, and enjoying visiting somewhere I have never been.  I won’t apologise if my after trip post is boring, as that would be the best trip ever.




Road Trip, Ready? or Not

Adrenal Insufficiency means you don’t have cortisol, this means you don’t have easy access to your “Stress” hormones.  You have to take hydrocortisone when you are stressed.  It’s better to take extra BEFORE you get stressed, but of course, you don’t know when you are going to be stressed some times, so that doesn’t work.  Stress, both psychological and physical, makes you very tired, this could be stress of work, stress of ill health, stress in the house (things breaking down, kids etc), or stress from an outside source that doesn’t understand what you are going through internally.

We have had various “stressers” lately.  Derek has had work issues that have been plaguing him since before he got sick.  The kids are “growing up” and trying to be independent (sometimes a little too much).  And he has been trying to deal with Accident Compensation Corporation.

Work understands the need to try and control his stress levels.  They don’t always manage it, but they try.   The kids will always be kids.

ACC are a completely different kettle of fish.    They just don’t get what having no “Stress Hormones’ means.  They are supposed to be there to make accidental illness/injury and recovery easy, and fast.  In practice, they make it a lot harder because of a lot of internal issues within the organisation that they push on to their “clients” that just adds to the stress of recovery.  I suspect the most over worked department in ACC is their complaints Department.

It will be 12 months at the end of September, since Derek suffered his Adrenal Infarction. He still hasn’t recovered from the multiple organ failure, and he hasn’t rested because he has had to work to keep paying the mortgage, so recovery has basically taken a back seat.  With stress building all the time.

We have decided to take 2 weeks off work.  We are going to travel up country to get completely away from work and hopefully ACC.  We are only away for about 7 days as I would like Derek to rest for a couple of days before the trip.  He will also need to relax after we return as we don’t know what stress the trip will put on him.

Last time we took time off work as for 2 days over a 3 day weekend and we spent the whole weekend redecorating the home office.  It wasn’t a rest.  In fact, Derek was worse afterward, than before. (See Taking a Long Weekend)

This time, it is OUR time.  Not time for the house, or the kids, or anything else.  It is for US to have a rest.

What even we didn’t understand until we found ourselves in the position, is how tiring chronic illness can be, not only on the person with the illness, but on the people around them, trying to care for them.

It’s something those on the outside looking in don’t always understand. I have to admit, I didn’t realise how hard it could be.   It’s like having a small child that needs all your attention, except they don’t get older, and need you less, normally it’s the opposite.  They get worse, and need you more.

It will be the first time we have been more than an hour from home, and our local hospital.  We won’t be more than 2 hours from any hospital as we travel up country because NZ isn’t that big, but having to visit a hospital that has not had to deal with Addison’s (and we won’t know if we have to visit one, or if they have had to deal with it, unless we rock up to one) is a little scary.

We are taking 2 emergency kits of 100mg HC with us just in case.  We are also planning on taking copies of his medical notes pertaining to September last year so we can inform anyone if something goes wrong and we end up at a Hospital somewhere.  New Zealand Hospitals are supposed to be linked so any hospital can access your medical records, but I suspect in practice it doesn’t work that way so better safe than sorry.

I will work on the theory that if we taken them, Derek will behave himself and we will stay out of hospital.  If we leave them behind, we will need them.

Planning doesn’t take away the apprehension.  It doesn’t matter how much we plan, we don’t know what will happen.

Driving up we have other drivers to contend with.  We will be driving through the centre of the North Island, which can close down due to snow, with only an hours notice.  It is not unusual to get caught in snow and have to be rescued.  Because of this, we will take extra food, and some blankets to keep warm along with our normal emergency items.

We are really looking forward to going away.  We are seeing some very close friends whom we haven’t seen for over a year.  But it’s also a little scary as we haven’t done this since Derek almost died.

Let’s hope things go smoothly and we get the rest we need.  Roll on September.