International Travel with a Chronic Illness – Part 2

Australian Triip – Day 1-3

I had just done all the preparation for our Trip to Australia.

I sat on the train on my way home from work going through things in my head.  Everything that I had done to make sure it the trip went smoothly was ticked off.  Then it came to me.  Derek took DHEA.  It is a steroid.  But what type of steroid?  I grabbed my phone and looked it up.

Well of course it would be an Anabolic steroid, and prohibited for import into Australia.

Great, this meant going on line and filling in an application to import a prohibitied substance.  It also meant a letter from Derek’s Dr confirming it was prescribed for a medical condition.  When I got home that night and pulled out the laptop, found the link to the Australian Customs website and hit apply.

I was amazed that I had a response, with a form, arrive in my inbox within 2 hours.  This meant I could take it to our Dr’s visit the next night, and have the application off by Friday.  I was cutting it fine.  It was supposed to take 20 days to get it approved, and I had 18 working days before we flew out.

We went on the Thursday night to the Dr and discussed everything we needed:

  1. A list of medication for NZ Customs
  2. A letter for Australian Customs regarding the DHEA
  3. Did we need to get an INR while in Australia.
  4. Did we need to carry Clexane incase Derek’s INR dropped too low.

After the discussion the Dr felt that, as it was only a 4 hour flight, and we were in Australia, then an INR check would not be necessary, and if something happened, they could give him clexane anyway.

We then did an audit of all his medication and put enough in containers for a months supply of everything.  If something went wrong and we had to deal with it over there, we wanted enough medication to last for the month at triple dosing, not just a week of normal dosing.

The last thing Derek had to do was go out on the Friday morning and get an INR.  It came back in the afternoon.  It was 2.9.   His preferred level is 3.2.  It wasn’t considered low, was lower than we prefer.  It could be easily managed.

We were ready for our trip.

The night before we flew out Derek took extra hydrocortisone.  We set the alarm for 4am, and I put all the bags in the car.  All we would have to do was get up, get dressed and go.

I woke up before the alarm.  In fact, I woke up half an hour before the alarm, so I went and emptied the dishwasher, and tidied up the kitchen.

At 3:50 I was dressed ready to go and I woke Derek.  All he had to do was put his cloths on, grab his normal daily bag, and get out the door.  He took 20mg of HC (normal morning dose is 10) and we left.

He closed his eyes when we got in the car, and rested.  I drove to our son’s house to pick him up.  Derek was starting to come round as we got to the city so was awake (a very loose description) when I pulled up outside Colin’s home to pick him up.  He was taking the car to his place from the airport.

I told him we would stop at the 5 minute drop off, we would unload, and he could go.

As I took all the bags out of the car I looked around.  There was a baggage trolley outside which I grabbed to put our bags on so Derek didn’t have to carry anything.

As we entered the Departures Checkin I looked around.  Directly in front of Virgin Airlines Check In counter was a wheelchair.  Great, they had it.  Derek needed it.  We went up to check in “Hi, we are here to check in, and is there a wheelchair for Derek?”

“Yes.” The checkin operator looked over to the chair I had seen.  “It’s over there.  Give me your tickets and passport and I will start doing that while you go get it.”

“You can’t take that!”  I stopped to see another check in operator looking directly at me as I was reaching gfor the wheelchair.

“It’s OK.  It’s for my husband”  I pointed to him, leaning against the counter 2 check-ins down.

“Oh, that’s ok.  I thought you were from the Qantas Flight.”  She had looked to where I was pointing.

We finished the check in process, then piled our carryon bags on Derek’s lap and went for breakfast.

Fast Track to a Holiday

I wasn’t sure what would happen when we attempted to go through the Departures Gate.  It was a lot easier than I had though it would be.

As I pushed Derek through the barrier for passengers only I noticed another woman pushing her husband.

We both took the long cattle track as it wasn’t made clear that we could take a short cut.  As we arrived at the security scanning area I unloaded everything to go through the x-ray machine.  I then pushed Derek to the Security Gate.  He was asked if he could get out and walk through.  He did, but the wheelchair was a little too close and it set the alarm off.  He then had to stand and be checked with their hand held metal detector.  He was clear.  I pushed the chair through the side entrance, then went through the scanner myself.  I too was clear.

We piled Derek up with everything again, and moved through to the duty free zone.

A sales member came and help us with our purchases after which we went to the gate to wait.  I grabbed a couple of bottles of water, put some electrolytes in Derek’s and settled him with our bags.

Right beside the gate was a coffee shop.  Yay, finally we could have a coffee.

I cued up with everyone to get my early morning coffee while we waited for boarding.  I looked up to see a Virgin Airlines staff member talking to Derek.  She was organising to get him on board.  We only had time to drink half the cup of coffee before we were called to board before everyone else.

I pushed Derek and the staff member took my carry on bag.  We were assisted the whole way.  They settled us in our seats and then turned to the rest of the passengers.

The flight itself was very uneventful.  An hour after taking off he took another 10mg HC (his normal morning dose).   About 2.5 hours into the flight Derek decided he needed to go for a walk, to stretch his legs.  The Business Class Steward saw him get up and offered him the use of the business class toilet, rather than walking to the back of the plane.

As the flight was preparing to land they again approached Derek and informed us that we would have to wait until all other passengers were off before we could disembark as they had to clear the way for the wheelchair, which would be waiting at the door to the aircraft.

After everyone was off Derek got up, and almost fell over.  He couldn’t stand up straight.  His hips hurt, his legs hurt, he was extremely tired (even though he had taken more HC on the flight).  Looking at him, I was thankful I had organised the wheelchair.

Once we disembarked, I was even more thankful.  There was a 600mtr walk from the gate to the immigration hall.  There was no way Derek could have walked that far, and then cued with 300 others (a second flight had just landed).

The beauty of the wheelchair didn’t stop there.  I didn’t have to push Derek at all.  A staff member pushed him.  He also took us through the priority system.  He helped us with our passport clearance, helped us through luggage pick up, and most importantly, helped us through declaring Derek’s drugs.

It was a doddle.  We ticked we had things to declare, they asked us what, we said drugs and food, we handed over the letter from Customs allowing us to import DHEA and we were told “Customs have already cleared you, of you go”.

With that the gentleman pushing Derek lead the way out into the arrivals concourse, took us to a seat, unloaded Derek and left us.

As we were going through baggage claim I had noticed a family (one of the first off the aircraft) waiting for their bags.

I left Derek to sit and rest on a soft seat while I went to pick up a micro sim for my old phone (to give me data while on holiday).  It took a good 15 minutes.

“Guess who I saw only just come out of the arrivals gate.” Derek asked as I arrived back.

“I don’t know.   Who?”

“The guy that was sitting next to us.”  He was also one of the first off the aircraft.  I knew we got through quickly, but not that quickly.

Next job was to get the car I had booked and get on our way up to the Sunshine Coast.

So far everything was going exactly to plan.  This was a good thing.

After Derek had had a rest we went and got the car.  It was a short walk, and he needed to stretch his legs.

We found the car, put our bags in the boot and got in the car.  We were going to stay with Des Rolph and Wendy Lau at Des’ Beach House.  Derek put the address in the phone, and set the system up to navigate.

Let the Games Begin

The trip up went well.  We arrived at the house just after 11.30.  Although I had never met Des or Wendy in person, I had skyped with Wendy a number of times, and had chatted on facebook to Des.

We arrived to discover that Des and Michelle Dalton (another facebook friend) had gone to the supermarket, but Wendy and Chris (Des’ husband) were home to greet us.

It was like meeting up with old friends.  We felt at home with them immediately.  And it was no different when Des and Michelle arrived back.

Lots of chat, some food, a little wine, and what to Derek and I was a late night.  Derek kept double dosing his HC all evening, we had a lovely dinner, and then excused ourselves to go to bed.

des-place

Michelle, Des, Wendy, Jo and Derek. Chris is the photographer.

I woke very early the next morning.  My body was on NZ time and Queensland is 3 hours behind.

I lay in bed watching video’s on my tablet while I waited for Derek to wake.  He finally woke up and took his first dose of HC for the day.  He then rolled over and went back to sleep.

As he slowly woke up he made a great announcement.  “I forgot to take my warfarin last night.”

Bugger.  Friday his INR was 2.9, flying decreased INR, he didn’t take Warfarin last night.

This all equals low INR.  We needed to get it checked quickly, but it was Sunday and we were in a foreign country.

We spoke to Des about what we could do.  There was a lunch function at the house with 6 other Adrenal Insufficient patients and we weren’t going to miss this for the world.  It was exciting to finally get to meet others with AI, and to chat to the spouses to compare notes.

Read about “The Domino Effect” here.

the Domino Effect

The Domino Effect

We had breakfast and started preparing some of the food for lunch (I say we, but mostly Michelle).

Once it was open, Des phoned the local 7 day medical centre to see if we could go in there and organise a script for an INR at thelocal Pathlab.

We were told they took walk-in’s so we could turn up at any time.  We decided we were going to leave immediately.  That way we could be back in time for the lunch.

When we checked in at the medical centre I asked if they were able to do plasma INR or if it was just a coagucheck system.

“It’s coagucheck, but that’s fine, its really accurate.”  Came the response.

I was doubtful, as I had heard through the APS forums that, for certain APS patients, it wasn’t that accurate, in fact it was dangerously wrong.

The Dr came out to reception “Derek?”

We got up and followed her into her consulting rooms.

I looked at Derek, who was still extremely tired.  “Derek has Antiphospholipid Syndrome and is on Warfarin.  How much do you know about Antiphospholipid Syndrome?”

“I gives you an increased risk of a blood clot” the Dr said with confidence.  However, she didn’t ask if Derek had ever actually HAD a blood clot.

“It doesn’t just give you an increased risk.  Derek has had clots.  He has actually suffered Catastrophic APS.”

She looked like she didn’t really know what it was, so I began to explain.  Derek chimed in as he could but he was struggling.

We then explained that he had a very high risk of having too low an INR and we needed it checked.

“We can do that here with the coagucheck machine.”

“I don’t believe that is very accurate.  We need a plasma INR.”

“Oh, these machines are very accurate, we have never had a problem with them.”

“They are accurate in atrial fibrillation, and in some patients with certain APS, but Derek has low Platelets as well, so for him it is not accurate.”

“Well let’s check it and see what it is.”

I was beginning to get the “I’m a Dr and I know better than you” feeling.  Not an unfamiliar feeling these days.

We went out the back and had the test.  It came out at 4.3.  this mean a very high risk of bleeding.

“Well that’s not possible.”  I was looking at the result, and then at the Dr.

“INR can be quite unstable when traveling.  It can be caused by heat, by long travel. Lets go back to the office and discuss it.”

Research has shown that Coagucheck INR is not recommended for patients like Derek who has High IGG and low platelets, as they tend to give a higher INR than it actually is.

Derek and I endeavored to explain that with APS flying lowered INR and therefore that result was most likely wrong, but like many Dr’s she was determined she was right.  We also got the feeling, when she mentioned Clexane, she though it would increase INR, where it does not have an impact in INR but does affect coagulation.  It should be used to reduce risk of clots, not reduce INR as was indicated by the Dr.

After some conversation, the Dr was determined we should head straight to the local hospital to have an INR as it was too high and could be dangerous.  She also advised not taking warfarin that night.

I agreed we would take a letter for taking to the Hospital, as long as she also wrote a script for an INR sat the local PathLab on Monday morning.

When we arrived back at the house we told Wendy, Des and Michelle what had happened and that there was no way we were going to the hospital before the lunch.

Wendy said she that her Dr friend was a Heamatologist and she would contact him to see what he thought.  I was still unbelieving of the high INR, and was still concerned that in fact, it would be extremely low.

After a very hectic time over lunch (explained here) Wendy finally got hold of the Dr for us.  I found it strange to be standing on a balcony on the Sunshine Coast, talking to a Chinese Dr in Hong Kong.

He agreed with me that there was no way Derek’s INR was 4.3, and that waiting till Monday would be safe, Derek should just take his Warfarin as normal that night.

Given Derek’s stress levels were very high I wanted nothing to do with Hospitals that day so we would go to the pathlab the next morning before heading south.

The next day we were due to leave.  Everyone in the house was extremely tired, and needed an early night so we went to bed by 8pm (11 NZ time) and slept.

The next morning we woke to pack our bags, get ready, and head to the Path Lab.  It was only 20 minutes down the road.  After we had the blood taken we were heading to Bribie Island to meet up with another friend.  This time someone I met through the Coro St MIRC group I had joined 20 years earlier.

I was excited to be meeting her so was wanting to get the test done.  We had to also organise for them to call us with the results as we would’t be going back to that particular medical centre again.

Medical Incompetence is International

We arrived at the Pathlab and handed over the form for the blood test.  As I handed it over I asked if there was any chance we could have the results phoned directly to us, as we were travelling.

“We will see what we can do.  Is this the correct Medicare Number?”

“What, we are from New Zealand, we don’t have Medicare.”

“So what is this number?”

“I have no idea.”

“Date of birth.  Is it ######”

“No.”

“Phone Number:  Is it ########”

“How did they have a phone number, I have never given them a phone number.  What is the name on that form?”  Derek and I looked at each other.  We couldn’t believe what was happening.

“Dale ####”.

“That’s not Dereks form.”

After a little more discussion we headed out the door to the medical centre to get it sorted.

On the way over we looked at the letter we were supposed to present to the hospital.  It also had the wrong information, but the right medical issues.

Wow, a major mistake.  If the other patient had had to go to hospital, he may have been given clexane because his INR wasn’t at the right level.  It could have killed him.  But worse, if Derek’s INR was wrong, he could also have been incorrectly treated.

We got back to the medical centre to explain what had happened and request a new form.

The Receptionist went to speak to a Dr.  She came back a few minutes later.  “The Dr discovered her mistake yesterday after you left so she faxed the correct details to the hospital.”

That was great, except there were two public hospitals, she had no idea which we would have gone to.

We got the correct Pathlab request and went back for the blood draw.  Derek was treated by a Kiwi phlebotomist.

We then headed to Bribie Island to see Jubbly (Jacqualine Russell).

It was a 1.5 hour drive so we let Jubbly knew we would be late.  We were also meeting Elaine Miles, another person I had known for 20 years without meeting.  I was excited.  Yesterday was Derek’s day, today was mine.

jubblyelainejo

We finally arrived just on 12.00 noon.  As we got out of the car to walk to where we were meeting them Derek asked if we had the chargers, tablets, and cables for our technology.

Bugger, no, and my phone was running out of battery.

I went back to the car to check, sure enough, in our haste to get to the Pathlab, and the stress of the previous day, we had left them all behind.

I would have to think about what we could do.  But that was later.  Right now we were focusing on Jubbly and Elaine.joexercisejoderek

After chatting for a short time we headed to the fish and chip shop to get lunch.  All the way Jubbly kept poking me, just to make sure I was real.  It was like on the Sunshine coast, like meeting a long lost friend.walking

We had a great time.  We talked, and talked, we laughed, we ate fish and chips by the beach, we walked along the boardwalk.jubblyjoselfie

 

 

 

 

 

 

After the stress of the previous day, it was great to relax.  Derek was starting to show his tiredness, but he also looked like he had started to relax a bit.

Then we had to organise getting the stuff we had left behind.

This meant we had to drive the 1.5 hours back north before we drove south.  So far this holiday had not gone exactly to plan.  It was a major learning curve and we were only at day 3.

After saying a gre

at goodbye to Elaine and Jubbly we got in the car and headed back north.

Watch out for the next leg of our “holiday”.

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