The Dentist and the Dragon

The Dragon

As many of my readers know, we have a good medical system in New Zealand.  It’s good, but it’s not great.

We also have a very different system when it comes to injuries and medical misadventures.  For a start, in New Zealand we don’t call them Medical Misadventure.  Oh, it’s an adventure.  For some, like Derek, it’s the ride of your life.

But it is, like a broken leg, classed as an injury.  For Derek, it’s a “Treatment” injury.  He was injured because of medical treatment.  But that’s history.  Or should that be “His Story”.

When you suffer at the hands of the medical community, and are injured because of it, you get to have an assessment by the Government’s “Independent” “Insurance” Company.

Set up in the 1970’s, it was designed to stop any form of Litigation.  Stop people having to pay crazy amounts of insurance just in case they suffer an injury.  But like anything new, the concept and the reality can be vastly different.

This great independent organization, that was there for the injured, were under some very strict Insurance type rules.  And like any good insurance company, they change the rules as often they change their pants.  So, you have an injury you don’t know if you will be adequately covered.

When you read back through my blog you will see that Derek was covered for his Treatment Injury.  This injury is his Adrenal Insufficiency.  This impacts all parts of his life.

He had to give up driving because, although there is no obvious brain damage, he can no longer multi-task (Yes!  I was lucky enough to marry a man that could multi-task).  He is also one of the most intelligent men I have ever met.  This is not me saying this, his School History (top 50 in the country) says this.  He has been assessed as being unable to focus on more than one thing, his short-term memory is now not what it was, his ability to manage his stress is nothing compared to what it was.

But we manage.  He still has his job.  That’s thanks to an amazing boss.

So, the New Zealand insurance system, known as the Accident Compensation Corporation (ACC as we all know it) is our Dragon.

His treatment injury is permanent.  It affects many aspects of his life, and if we need help because of that, we have to go into the dragon’s cave, and convince that dragon to stop breathing flames, and let us past, to get to the help we need.

To this end, he has a “Case Manager”.  This is his direct contact in the dragon’s lair.  But this Dragon is very hard on their workers.  They are always being burned to the point the run, screaming from the lair, never to go back.

But on their way out, as the scream ENOUGH, they are supposed to contact all their “clients” and let them know they have reached boiling point, and they have run.

The Dentist

So why the back story?

Earlier this year Derek when for his normal checkup with the Dentist.  She checked his teeth.  They are ok.  He needs more work the longer he is on steroids, but it could also be the fact he has “reached a certain age”.   It comes to us all eventually.

She did x-rays, and then the bad news.  “You need to have your 2 remaining wisdom teeth out.”

“OK can you do it?”  Ah, the naivety of my darling husband.  Hell NO!  No way she will do it.  She doesn’t mind the fact he is on warfarin to stop him clotting.  He can even keep his INR within his designated range.  She isn’t even worried that he has suffered CAPS.  What she is terrified about is the stress it will cause him, and the very real, and high risk of an Adrenal Crisis.

“You need to see an orthodontist.  They will do it under anesthetic, in hospital, where they can keep an eye on you, and monitor you properly.

Here’s where it gets a bit real.  Oral and Maxillofacial Surgeons cost money.  OK, not as much as in the US, but a lot for little old NZ.  And I sure as hell am NOT paying.

I don’t mind paying $1500 to have it done in the local surgery, under local anesthetic.  But an oral surgeon, anesthetist, a hospital bed for the day (or longer).  No way.  We would not have to pay that if he didn’t have AI, so no way am I paying.

Fighting the Dragon

Off to the Dragon’s Leir we go.  Putting on our bravest face.  Derek puts the words on paper, and I then writing them in a firm way.

Please Mr Dragon, can we have the money for the surgery.  We should be covered as it’s due to the treatment injury he needs the high-risk extraction.

I don’t know if it’s the words I use, but we were told “Please, who would you like to assess you.  We have Surgeons on our supplier list.  Use one of them”.

Well, this is going to be a battle then.  And the line has been drawn.  We have to use one of THEIR suppliers.  And anyone who has dealt with ACC know that their “authorized suppliers” are not there to spend ACC money, they are there to reduce that spend.

First blood to us.  The Oral and Maxillofacial Surgeon we wanted to specifically use, is on THEIR list.  We get our choice.  But this is just stage one.  The visit to the Orthodontist to get an assessment.

Does Derek need the extractions: Absolutely, and soon, there is already jaw damage being caused by the teeth.  It will soon become painful, and there is a high risk of infection.

Does it need to be done by a specialist:  Absolutely yes.  These could be done in a standard dental surgery, but if something goes wrong, the teeth break or they are difficult extractions, then it would have to stop, and then it would become an emergency extraction.

Does Derek need General Anesthetic.  Yes.  Due to his complicated situation, a General, even though stressful on the body would be safer in case something goes wrong with the extraction.

We wait for the report to come back from the Oral and Maxillofacial Surgeon.  It didn’t come.  Oh, yes it did, it went to SPAM.

We then draft a very short email to Derek’s Case Manager and forward the report and the quote.

We decide that we will be willing to split the cost.  We pay what it would cost in a normal dental surgery, ACC pay the rest.  Now we wait to see what they decide.

Again, we waited.  The first thing we were expecting was a letter from the Case Manager saying “thanks for your email, I will forward it for decision”.  It never came.  So, a week later we sent it again.  Having fought battles with this Dragon before (and won) we did our usual.

“HI, you haven’t responded to our previous email.  Please tell us what is happening, we are reattaching the documents in case they were stopped at your gateway.”  We sent the email again 6 working days later.  Then we sent one without the attachment.  Still absolutely no response.  So we had one more go.  But this time we sent a copy to their “Complaints” department.  We have learned through the 6 years so far of battling ACC, that we need to do this to make things happen.

We received a very quick response, but NOT from our case manager.   The response included “ Ann has left ACC, this is why you wouldn’t have received a response yet.  We have sent your email to someone else”.  That was it.  Still no idea who.

Apparently, “Ann” ran so fast out the door of the Dragon’s Leir, she didn’t have time to let anyone know she was going.  We were put on to someone else.

We waited until “someone else” then responded to us.

So off to the complaints office we trot.  This time it was a “Formal” complaint, not just a CC.

We want to know who our case manager is, why have we not had a decision on the dental work, why were we not told our case manager had left, oh, and why, after making the first “complain” was his right to have what is called “Driving for Independence” looked at, and why was our GP being asked whether Derek was now able to drive safely, and therefore cancel the driving provided.

Suddenly a swathe of emails from the Dragon’s Leir.

  • SORRY! We have given you TWO case managers so this never happens again.
  • SORRY! Please resend the information and we will get it to our assessment team urgently.
  • SORRY!  I hadn’t read the case file fully, and just saw that your driving was renewed 6 monthly, and that hadn’t happened so was reassessing your need.  I now understand that it is a permanent (lifelong) Driving service we provide.

I guess, if you have to be given a sword to slay a dragon, it’s great when you get the RIGHT sword.

I have mentioned before, and if anyone fighting ACC reads this again, I will repeat.  YOU HAVE RIGHTS!  And for Derek, the key right is that they MUST take his injury into account whenever dealing with him. They had also failed to properly communicate with us, along with other violations.

For someone with a broken leg it’s easy.  They simply say, here, have some crutches and come on in for an assessment.  With a Mental disability due to an accident, it’s not as easy, and the sword they are given is NOT a strong one.  They are disadvantaged as they must fight with all the might of someone fully functional, but who is missing two arms.  And the sword can be taken at any time, just because they can.

But for Derek, they can’t do that.  His covered condition is Adrenal Insufficiency (although the regularly get that wrong, and are currently calling it Adrenal Sufficiency).   But as it is written everywhere that it is the lack of the stress response hormone, it’s a “Gotcha”.  They are not allowed to cause him stress because it will make him sick, and that is not taking his injury into account.

And they have come to the party.  Not quite with the best offer, but it’s a start, they have agreed to pay for the hospital, and the anesthesiologist.  We haven’t finished, but we have time.

So now the preparation begins for the 24 January 2020 (baring anything going wrong in the meantime). Derek is scheduled for the first appointment of the day, in a private hospital, for his tooth extraction, and a day’s monitoring to ensure he doesn’t get sick.

 

 

But What Cost, a Medical Misadventure

When the Medical Side is Under Control

4 years on from Derek twice having his warfarin stopped by a hospital who’s excuse is “Oh, the Dr didn’t realise the importance of bridging” and we have, with very little help from them, managed to get Derek as stable as he will ever be.

 

We have got his Adrenal Insufficiency as under control as it will ever be.  We have worked out through experiement, what dosing works for him (and it’s not what they say in the books).  We have added other replacement medication (DHEA, Vit D) which is helping.  We are learning the symptoms of low cortisol.  We should have learned, we see them frequently.  Derek updoses as he needs, which is different to stress dosing when sick, and how to stress dose (double or triple HC) when he IS sick.

He is being driven to work, although he works mostly from home at the moment.

But what is the unseen cost of the medical fraturnity almost killing him?

It’s the costs they don’t compensate you for.  It’s the cost of things he can’t do any more. The things we now need to pay to get done.  For some it is things like having to employ a builder, for others, it is having to downsize their home, pay a cleaner, pay a gardener, or just not do things any more.

Why is employing a builder a hidden cost of his injury?

Bedroom RenovationBefore Derek suffered his CAPS event we used to work together to do renovations to the house.  This included turning our downstairs bedroom, shower room, and toilet, into a Master Bedroom with ensuite.

The cost of this exercise was extremely low.  We paid just for the materials used.  We paid a very small amount to have 2 power points moved.  We worked weekends, nights, and took a few days off work.

Top Left is the entrance foyer of our home.  You can see the door to the shower room, and the door to the downstairs toilet.  The bedroom is the door to the right.

Derek built the new wall (back of new wardrobe).  He then demolished the old wardrobe, we gutted the room, insulated, relined, and created a new Master Bedroom.

This was done a year before CAPS.

We have done a couple of small outside projects, with a lot of help from others including building a garden and a garden shed  and an deck outside the dining room.

Derek designed the deck, but we had to call on friends and family to build it.  It is an amazing asset,  and again, we paid for materials, and food for workers.  The help to build these things was fantastic.  But what about the bigger projects. Something the size of the Master Bedroom.   Like a kitchen?  Or insulating the Living Room?

We are looking at selling our home in a few years and find something slightly smaller.  There is a lot of new building going on around our area and we have to have our home at the right level to get the right money.  That means insulation in the Living Room is essential, as is a new kitchen.

Once upon a time we wouldn’t have thought anything of it.  We would have just purchased the materials, contracted a kitchen manufacturer to make the cabinets and bench top and over a period of a couple of months, done the work.  But not now.  And it was too big a job to ask friends to spend 2 days building.

So we had to pay a builder.  He is a great builder, with home renovations/alterations as his specialty, but still, we had to pay.  We have had to pay him for a lot of the other “little” jobs around as well.  Things that would normally take a weekend for Derek and I to do, now either doesn’t happen, or Chris comes to our rescue, but at a price.

So, Chris came in and gutted the lounge.  He then built a new ceiling, insulated the entire lounge, relined it.  We had to get a plasterer in to paint.  We had to get a painter in to paint it.

As for the kitchen.  It is a great Kitchen, I love it.  But again, we kept Chris employed where we could would once have done much of the work.

Gutted KitchenWith the help of a friend we did remove the old kitchen.

Most of the kitchen was still in good enough shape to be used elsewhere.  It was after all, a Designer kitchen.  It just wasn’t a well designed kitchen.

Our friend agreed to remove it with her and I doing the bulk of the work including carrying the units down to her trailer, taking them to her place, and putting them in her garage, for her to have installed in her home.  Derek did the little bits.  He unscrewed units from each other, and supervised, or held things while Sian and I did the hard labour.  Thank the Lord for Sian.  She has a new kitchen and Derek didn’t end up overdoing things.

But once everything was removed the walls were a complete mess.  Patches here and there.  Holes in the wall.  No insulation,  It had to be gutted.  We also needed to install a new window as one of the windows was sitting below the height of our new bench.

 

rebuilding

Chris, working hard (instead of Derek)

Enter Chris again. It wasn’t a big room.  For someone fit and healthy, which Chris is, it was a 5 day job to put up new ceilings, new wall lining, and install the new window.  Working along with the plumber and electrician it took 2 weeks in total.  Inbetween that, we had the kitchen company come in and install the units and bench top.

Then Derek and I could do some more work.  Well I could do some more work.  Derek “supervised”.  I plastered, sanded, and painted.  Derek did bits and pieces, working as he could, taking extra HC as he needed.  It took several days, with me doing the bulk of the work.  It was hard work, but rewarding.

Once we had the units installed it was time to put up the tile spashback behind the sink, and along the bench top.  Again, Derek cut a few tiles with a motorised tile cutter, and I did the installing of them.

KitchenFinished

The Finished Kitchen

All Up, for the living room and kitchen, it cost us $10,000 for work that 5 years ago we would have done ourselves.  This was the cost of employing a builder for work that Derek was once very capable of doing, and in a good timeframe.

So what is the hidden cost of a medical misadventure.  So far in the last 12 months it has added up to $10,000 and rising.  This, you do not get compensated for.

 

I understand that others would already have to get someone in for this, but when it is something you would have previously done yourself, it makes a difference. It certainly made a difference to the cost of the Kitchen.

For others it may be something different but there will always be hidden costs that are not compensated for, or that have no real measure and that are not thought about when it comes to the cost of a Chronic, or unexpected illness.

 

 

 

DHEA – To Take It or Not

What is DHEA?

Dehydroepiandrosterone (DHEA) is a drug that those in the Addison’s world talk about.   Some talk is positive, some is negative.
Some have tried it and think it is the best thing since sliced bread, others have tried, and stop quickly because of their perceived side effects.

Technically Dehydroepiandrosterone (DHEA) and DHEA sulfate (DHEAS) are the major circulating adrenal steroids and substrates for peripheral sex hormone biosynthesis.

DHEA is a Hormone precursor that is produced by the adrenal glands. The problem is, as a rule it is not replaced when your adrenal glands fail, especially in men. For 2 years, we didn’t know anything about it. It wasn’t an option talked about by Derek’s Public Hospital Endocrinologist. It was something I started hearing about in the Forums.

After discussing DHEA with a number of men in the forums I talked about it with Derek. He started investigating. He is not one to listen just to those taking it. He wanted to know the scientific information behind it.   He read multiple studies.

After 6 months of investigation we went to our Dr and asked if Derek could trial it. She had heard of it, but never scripted it so sent him to a private Endocrinologist who worked with “those with complex endocrine issues”. We spent an hour with this Dr.

At the end of that time, we walked out with a 3 month trial of DHEA. The catches:

        It is a prescription only medication.
        It is not available through your normal pharmacy.
        It is not subsidised, so you have to pay full price.
      You have to go to a compounding pharmacy.

DHEA and Testosterone

DHEA increases your Testosterone, in both women and men.  There is he risk of too high a rise in Testosterone because Derek has had, but is currently clear of, Prostate Cancer. We are aware that pushing his testosterone up too high may be an issue.

We decided the trial was worth a trial it.

We knew all this going in. We also hoped (but anyone who knows ACC wouldn’t hold their breath) that as this was a hormone produced by the Adrenal Glands, ACC would pay for it.

Step 1 – Get blood tests of important levels as a base point.

Step 2 – Send script to the Compounding Pharmacy. The Endo gave us the name and contact details. We then contacted them to find out what had to happen.

Step 3 – Wait. Because the drug had to be made for us especially, we knew it would take a few weeks. It finally arrived.

Step 4 – Trial Begins. There needed to be some provable results so we got blood testing. We started with levels of cholesterol, testosterone and DHEA.

Derek began the Trial. – 25mg/day

After a week he felt he wasn’t quite as tired as he normally was by the end of the week.  I actually observed one night about 5 days into the trial, that he was still up working on his tablet and watching TV at 9.15pm.

His normal bedtime for the last 3 years has been 7.30-8.00 pm.

Was this wishful thinking, or genuine result? Time would tell.

After a month I had noticed a difference. He seemed happier, more relaxed, less fatigued (we were able to do more things), but the biggest difference was he became more “loving”. He was not back to pre injury, but he would grab me as I walked past and give me a hug. Something he hadn’t done in a long time. Not that he hadn’t wanted to, he just hadn’t had the energy to do it.

After 3 months we had his levels checked again.

Testosterone Range – 9-25 nmol/L
Pre DHEA – 15.3 nmol/L
Post DHEA – 19.7 nmol/L

DHEA Serum Levels Range: 1.4-8.0 umol/L
Pre DHEA – <0.6 umol/L (undetectable)
Post DHEA 2.6 umol/L

LDL/HDL ratio: <4.0
Pre DHEA – 6.1
Post DHEA – 6.0

The Trial Ends

After 3 months it was decided Derek would take a 2 week break while we got another script, and to see if there was any obvious change.

Within 4 days, he was back to going to bed around 8.00pm at the latest. He was struggling to work properly, he was finding it hard to focus on things for too long.

Monday of week two he struggled home from work and collapsed into his chair. He could barely function. Tuesday got worse. Wednesday he was barely working. He took extra cortisol.

Thursday he again took extra cortisol, had a bad headache, and his blood pressure had begun jumping for no obvious reason. His mood was that of a person fatigued to the point of no patience.

Another thing we noticed is that at some in the first day or two of stopping the DHEA he had knocked his head, and had got a small “mark” which bled. Every morning for 2 weeks he would wash his face, and the small mark would bleed. On the Saturday before he started the DHEA again he was walking into the bathroom and walked into the door frame. He cut his forehead just below the previous mark, and right through his eyebrow. It wasn’t a serious cut, but enough that it took a while to stop bleeding.

The telling issue came at midnight Thursday night/Friday morning of week to off DHEA.

I woke to find Derek tossing and turning. I heard the tell tale signs of burping. I lay there, not letting him know I was awake, as he hates disturbing me.

He had developed a headache before going to bed, and by midnight it was a lot worse. He eventually took panadol and got up for a cup of tea. I went to the kitchen to see him, get him back to bed and, after resting for 5 minutes, I took his BP. After being in bed for 6 hours, it had risen to 157/99.

At this point I insisted he took more HC. We had two more days before we were going to have him take the DHEA again.

Should we give up and start it again?  Was this rapid downhill run truly due to the lack of DHEA?

He suffered on Friday, taking double dose HC. He was not ill, but showing signs still, of too low a cortisol level.  Saturday morning, laying late in bed, Derek asked me if he should take the DHEA or wait till the Sunday.  He was getting worse by the day so I told him to take it again.

Back on DHEA

Derek started taking DHEA again on Saturday, Sunday he felt the same (we didn’t expect anything else).  We have settled on 25mg/day.

Monday he worked from home. He felt tired, but not as bad as the previous week.

Tuesday night our youngest (18 yr old) came into the lounge and asked if we were going to bed, what was Dad still doing up.

We suddenly realised it was 9.45, and he was tired, but not struggling to the point of being desperate for bed.

Other things we noticed.

We have noticed some other things significant to Derek.

The most telling was the small mark on his forehead that had continued to bleed each morning on washing his face for the whole 2 weeks he didn’t take DHEA.

By Monday morning, not only did that mark finally stop bleeding when Derek washed his face, but so did the cut he received 2 days previously.

Since his CAPS event, he has suffered from sharp sudden migraine type symptoms when put in a fight or flight situation. Nobody has been able to get to the bottom of this. The only thing we know for certain is that, if it is a visual issue, the pain begins on the right side of his head, if it is auditory, it begins on the left.

What Derek didn’t realise until he stopped taking the DHEA is that he still suffers these incidents, but the sharpness of the migraine has been reduced when on DHEA. It wasn’t until he suffered a fright in the car on the second Saturday and he got the old “sharp” pain in his head did he realise that in the last 3 months, the pain had been more dull than sharp. He also suffered 3 events in one day.

Clearly this is a Plus for Derek.

The second thing he has noticed is his sleep. We have Fitbits. We use them, not only to track walking, but to track his sleep.

When not on DHEA Derek tends to “crash” for long periods of not moving.  When on DHEA his sleep is more of the normal 3 levels of sleep that “normal” people get.

During the 3 months trial period Derek got a cold.  It is not the first cold he has had but this time, it didn’t come to anything. He took an extra couple of days at home, but he didn’t need to take time in bed. He was able to function. This was a big change from previously when he would end up in bed, taking double or tripple dose HC for 2-3 days just to function.

He is going to continue taking this for at least a year to see if there is further improvement. The fatigue is still there, that is a side effect of the exective dysfunction, the effort to eat with his dysphagia, and the adrenal insufficiency, but it has definitely lessened. With some of the other improvements, for Derek at least, DHEA is something that should be replaced.

As a foot note. The Accident Compensation Corporation has agreed to fund the DHEA, our local Chemist is able to source if for us (from the compounding pharmacy so we simply take the Script to them when Derek takes other scripts in, and now the Dr knows what level to prescribe, she will do the pescriptions.

Today, all is good with the world (at least the world of DHEA).

If you are a male with Adrenal Insufficiency, and you haven’t thought about this hormone, it is worth giving it a go. There isn’t a lot of research where men are concerned, but that doesn’t mean it isn’t right for men. Speak to your Dr or Endocrinologist. If they say NO, ask them why, make them justify not giving it, rather than them making you justify why you should have it.

WARNING:  there are two types of DHEA.  Be careful which one you get.

Wild yam and diosgenin promoted as a “natural DHEA.”   In the laboratory DHEA is made from diosgenin, but this chemical reaction is not believed to occur in the human body. So taking wild yam extract will not increase DHEA levels in people. Individuals who are interested in taking DHEA should avoid wild yam products labelled as “natural DHEA.”   Copied from <http://www.nlm.nih.gov/medlineplus/druginfo/natural/970.html>

Worst-Case Scenario

What if I had an accident, not bad enough to require an ambulance, but that required me to go to Hospital?

Since Derek became ill I have had a “worst-case scenario” played over and over in my head.

For two years, I have imagined what would happen if I became incapacitated. For some reason, I couldn’t drive. What sort of impact would that have on the fact that I was the only driver in the house.

I have played it over in my mind many times, thinking “what would I do”, “how would I deal with the problems”. “What if I had to get Derek or Bevan to a medical appointment, or I had to do grocery shopping”.  “What are all the problems I would have to deal with?”

Who could I call.

My worst-case scenario? To break my right leg at home.

 Actual Event

Stepping down off the back lawn onto the steps. I felt my ankle roll to the outside. My mind immediately went to the thought of, “NO, This can’t happen”. So I tried to correct. But to do that I had to put my left foot down on the step. Great, I will be fine.

Imagine my shock when I realised too late that the step I was aiming for wasn’t there. I didn’t stop with both feet on the same level.

I stopped when I was layed out flat on the ground, having landed very heavily on my left knee. It hurt, but not as much as my right foot. That was screaming.

But over riding it all was the thought, “Crap, Derek is going to get a headache, need to go to bed, and I think I should probably go to A&E”.

I lay there for a few minutes, running everything through my mind, tears running down my face. I wasn’t sure if I was crying because of the pain, or because my worst-case scenario might be coming true.

While there, I worked out that I have hurt my left knee. I knew that because I could feel the blood, and I could feel the hole in my jeans. I still hadn’t risked moving my right foot. It was still yellowing for attention, and I was refusing to give it.

The reaslisation that I was the only one with a Drivers Licence, or that could Drive dawned on everyone. Offers of “I’ll call and ambulance”, “Do you want me to call an ambulance?” and other phrases including the word ambulance were used.

No, this was not bad enough for an ambulance. I felt sure I could get to my bed, rest it, and then see what was happening.

All this time I was pumping adrenaline like crazy.

This is a good example of how fast Derek reacts to an emergency. He walked over to me at his normal speed, and just stood there asking if I was ok. Not able to actually react in a normal way. I could tell that, because all he did apart from asking me if I was ok, was to call Bevan, who was already running to my aid from inside the house.

I finally managed to sit up and reassess the situation. My foot hurt, my mind jumped to “crap, broken it”, then moved slightly more slowly to “nah, it’s just going to be a bad sprain”. Ice, rest, and then a trip to A&E to get it strapped, and find some crutches for a couple of days.

I worked out how to stand up, with assistance. I then tried weight bearing. Great, I can stand on my foot.

1 step, 2 steps, that was it. No more. I was NOT able to stand on my own two feet.

Somehow, in that short time, Bevan had come up, assessed the situation, realised I needed help, and went and found my mother-in-law’s walking stick. Well done that son. I hadn’t even noticed he had left before he was back.

Bevan and our Boarder helped me inside (with me sliding down the stairs from the top of our back yard) to my bed, I was given ice.

As I lay there I realised that, even though I knew my eldest son who lived at the other end of town needed to go to bed at a reasonable hour, and that I was about to spend 5-6 hours in A&E, I sucked in my pride, accepted it as a fait accompli, I phoned him and told him the situation. He said he would turn off his dinner (which was almost cooked) and come get me.

No, I wasn’t having that, I wasn’t going to inconvenience him that much for a sprained ankle.

I took pain killers and lay there for an hour waiting for him. At first it was fine, I didn’t mind waiting as I knew it was just a sprain. I had time to go through each plan of how to get to work the next day as spraining my ankle wold mean not being able to drive for 24-48 hours.   I would need crutches but that was it.

By the time my eldest arrived to take me to hospital I was desperate. I couldn’t walk, I was in a lot of pain, even with pain meds,  and shock was setting in.

Derek on the other hand, was laying there, he looked worse than flat but not as bad as he has been some times. He took panadol, and just deal with the headache as best he could.

I worked my way to the car and got in the passenger seat. My instructions to my son was, on arrival at hospital, get me a wheelchair. I was NOT going to try and walk.

We checked in, we could see it would be a 4 hour wait at least. What was a girl to do. Post on facebook of course, where my daughter read about it.

At some point my daughter and her boyfriend (a paramedic in training) turned up. This was a great opportunity to send Derek home. He had taken extra meds, but still looked worse than me.

Finally I am taken out the back and seen, very quickly, by a Dr. Quick exam, “yes, think we might get an x-ray”.

1 found of x-rays and a 5 minute wait later and I get the good news. “Yes, you have sprained the outside of your right foot. But I need another x-ray of it. A slightly different one. That spot you say is the extremely painful, is where you broke it! But there may be another break as well”

Boom!

There it was!

Worst-case scenario now a Reality!

I am cast. Both figuratively and literally.

Oh, and I have to get Bevan to a Medical Appointment tomorrow a long way from home!

Boom! There it is again.

For the next two weeks I will probably be in a plaster case, at which time I have to see an Orthopaedics Specialist to see what they want to do. Even if taken out of the cast and put in a moon boot, I will not be able to drive for another couple of weeks.

Up to 4 weeks of not having a driver in the house.

Yup. My worst scenario is now playing out in real life.

A GasWHATopy?

For just over 2 years now, Derek has been having an issue with swallowing. We have talked about it with various Dr’s but nobody seemed interested in investigating it.

Now we have recently changed Dr’s, we have tried again.

Finally we have had some luck. Not what we were looking for, but at least it’s a start.

We received a letter to call the Endoscopy unit at the local hospital to make an appointment for a Gastroscopy. It was December, and the year was coming to a very quick end.

Using the speaker phone, Derek phoned the hospital to find out more, and make an appointment (we presumed for late January or early February).

A Gastroscopy is a routine procedure where they put a camera down your throat to view anything there may be wrong, including tumours, etc. If necessary, they may take a biopsy.

We were given an appointment for 18 Dec. Only a week away. We then started looking at the forms Derek had to fill in, and noted he had to mention to them if he was taking anything such as Warfarin. We called the Hospital back and asked what we should do about it.

This is where I remind readers that invasive procedures such as this, require you to stop Warfarin 5 days out from the procedure, to reduce the risk of bleeding. A reminder also that last time the Medical Profession stopped Derek’s Warfarin, he suffered Catastrophic Antiphospholipid Syndrome which left him as he now is.

You can imagine my serious caution about this procedure now.

We told the receptionist about the warfarin. She then got the nurse to call us back. Having spoken to us, the Nurse then spoke to a Dr.

A call came back later that day to say that they had decided to not stop his warfarin, but to call him back if they needed to take a biopsy.

They then changed the date to 31 December. Fantastic. New Years Eve and he was having a medical procedure.

Being a “protective” mother type person, I then went to the Adrenal Disease Self Help Group in UK website and found the protocol for Hydrocortisone during certain procedures.

UK Protocol:

Other invasive procedures eg. endoscopy, gastroscopy
100mg hydrocortisone IM just before commencing
Double dose oral medication for 24 hours. Then return to normal dose.

I decided, rather than talking to them about this, I would simply email them the PDF.  Thankfully, the agreed to follow this procedure.

I received acknowledgment of the email then on the following Monday 15, Derek received another phone call. For some reason, somebody had decided he should have the procedure on 31 Dec, but alas, there would be no staff on hand to do it. The appointment was put back to 18 Dec, which was now only 3 days away.

The appointment was also set for 12.30pm. This was a Clinic Appointment, which meant that everyone turned up at 12.30. They then went through everyone in no specific order, did the medical prelim, then you waited again, until it was time for you to have the procedure. The big catch is, you are nil by mouth from 7.00 am.

Due to possible stress, Derek and I discussed it, and we agreed that having mild sedation would help reduce the risk of going into crisis during, or after the procedure.

The day of the procedure dawned. Derek woke at 6.00 to take his normal morning HC. He then had breakfast and his Fludrocorisone.   All good so far.

Then the problem dawned on us. Derek drinks small amounts of water but constantly. This is because he can’t swallow properly, and because people with Addison’s Disease are prone to dehydration.

This procedure meant he had to go without water for 7 hours.

We arrived at the hospital in plenty of time, and proceeded to wait.

Everyone was told to be there by 12.30. But of course, people think that means you walk in the door, and then fill out the forms.

So we continued to wait.

Finally a Nurse came in to the waiting room and called the first of the 6 people waiting. Derek arrived first, but he was not called first. When Derek was finally called for his pre-assessment, I went along with him, and told the nurse they needed to be aware of the potential for Crisis. He had not taken his 11.30am dose of HC because they were giving him 100mg before the procedure. It was now after 1pm and he was clearly suffering. We mentioned dehydration to the nurse but, as usual with medical professionals, they dismissed the concept of dehydration as yo don’t get dehydrated by not drinking from 7am to 1pm. Unfortunately, if you are Adrenal Insufficient, yes yo do She didn’t UNDERSTAND that Addisonian’s are not “normal” people. Medical professionals don’t understand that even if he was drinking, Derek can still become dehydrated.

Derek was finally called in for the procedure. By now it was after 1.30 and he was starting to really suffer. He told me later that by the time they lay him down to give him his IV HC, he was all but unconscious. They barely gave him the sedation before he blacked out.

I sat waiting for several hours while Derek was being done.

He finally came out looking worse for wear. Before we left, he took his next dose of HC. We didn’t worry about doubling as they hadn’t done any biopsy’s or anything.

He also began drinking. He had already had a cup of tea when he came around from the procedure.

We went home, and he went to bed. The next morning I woke up very early and raced to work as it was a very busy time. I phoned Derek regularly during the day.  His BP had dropped to 90/53. He was dehydrated and could barely get out of bed to go to the toilet. I got him to triple dose for the day. He also drank re-hydration drinks all day.

Even though we warned the Medical Profession about dehydration being a problem, they ignored us. This is not the first time, and would probably not be the last.

As a consequence of the Medical Profession thinking they know all, we spent 3 days trying to stop him going into crisis.

WARNING TO ADDISONIANS HAVING PROCEDURES.

Try to push for fluids if you are Nil by Mouth for more than 3 hours.

Dr’s are told “First Do No Harm” but each time they ignore what you say, the first thing they are doing is causing harm.

Foot Note:  As we expected.  Because they look once past the throat opening, they didn’t find anything.  No surprise.

Whats in a name!

Apparently a lot.

Its not just what IS in a name, but what isn’t.

80% of those suffering Adrenal Insufficiency are because of an Autoimmune condition.  Generally, if it’s autoimmune you will have other conditions as well.

These conditions need to be taken into account when drugs are prescribed.

In New Zealand we have Government Subsidies to pay for medications.  As long as the medication is on the list approved by Pharmac then it costs $5.00 each time you get a script.  Derek normally gets enough Hydrocortisone for 3 months at a time.

The catch with this is he is limited to one brand, and only one brand.

Derek’s Adrenal Insufficiency is not autoimmune thankfully, but his Antiphospholipid Syndrome is.  With Derek’s warfarin he is given options of original or generic brand.  There are two option, so if he has problems or side effects on one, he can change to the other.

With his HC there is no second option.  Thankfully, he seems to be OK on the brand we have in New Zealand.

We have learned through forums that we are very lucky he can handle the brand we get here.  I am hearing more and more about people in other countries that rely on medical insurance companies that dictate what brand they should use, and generally it seems to be the cheapest brand available.

After a new drug has been out for 10 years other pharmaceutical companies can make the medication.  These Generic brands must have the same active ingredient, but the fillers can be and normally are different.  It is these fillers that can cause health problems.

With an Addisonian, that can be deadly.  If you have a reaction to one of the fillers, or the amount of active ingredient is even slightly off it can make a big difference to your health.
Imagine taking a tablet 3-4 times a day that is very slowly causing a negative impact on your body.  At first you think you are having a bad day, you take more medication, you feel a little worse.  After a while you find you are in crisis and you don’t know why.

This is happening regularly to people around the world.

We so often take the tablets we are prescribed,  without finding out what we are taking, thinking the medication is good for us.

If it is like Derek’s Hydrocortisone, and it is crucial to life, then we need to be careful that he doesn’t have a reaction, even a small one.  It could kill him.

Original Brand medications are very tightly monitored to ensure the least possible side effect.  Generic brands are not so carefully monitored.

If you are prescribed medication ask if it is the original or generic?  And ask what the “fillers” are in the drugs.  If you have any type of allergy or intolerance, make sure the person prescribing the drug knows what they are prescribing.

What Happens When Doctor’s Don’t Know Everything.

Over the last year one thing has become very clear.  Dr’s don’t always know everything.

We recently went to our Dr to ask about the fact that Derek was not feeling great.  After being told several times that he should not be taking extra Hydrocortisone just because he was feeling fatigued, or unwell, or had a ball of gastric wind under his ribs.

Because of this, he stopped taking the extra “stress dosses” of HC and began charting his BP instead.  After 6 weeks of readings at 4 times each day, we went to the Dr.

We found that his BP will go into a clinically Hypertensive range of 154/96 with a 68 heart rate one day and clinically Hypotensive at 94/59 HR 101 the next.  Just the effort of standing, and the change of position could have his pulse rate jump by anything from 40-60bpm (up to a 90% increase), where it should only increase by 20%.

Derek had been trying to get back to a semblance of fitness, so we organised through ACC, to have a schedule of fitness sessions with his Physiotherapist.  The physio was doing the starting assessment, and found out about the problem with his BP and would not touch him without clearance from the Dr.

Armed with the readings from the previous 6 weeks we went along to the Dr to ask if he knew what was happening and why.  The first thing he did (and all kudos to him) was to admit that Derek was the one and only “Addison’s” Suffer he had ever dealt with, and didn’t know that much about Adrenal Infarction and the complications of it.

He looked at Derek’s medical records.  The Endocrinologist had written that at some point, and probably without warning, he would need his fludrocortisone increased.  So it was decided that perhaps a change of Fludro from 0.05 to 0.1mg per day could work to stabilise it.

Home we went, armed with the hopeful knowledge that it was the fludro out of sync that was probably causing the large difference in BP.

We tracked his BP for another week.  There was definitely a change in pressure and heart rate.  It continued going higher during the day, but falling further overnight.  It had also become more erratic.

OK, so 0.1 wasn’t the answer.  So go back to 0.05 but twice a day.  We had seen on various forums where others had had some success with this option.

Another week of tracking and another change in BP (or not).  Still heading upwards during the day and downwards at night and still no real pattern for week days and weekends.

We returned to the Dr with this new information.  He agreed that the extra fludro wasn’t doing anything positive so we should go back to 0.05.

He also had the results of some blood tests.  There was nothing markedly different from last time.  Kidney’s still not at a great level, everything else seemed fine.  Potassium and Sodium all comfortably within range.  Thyroid a little wonky but he has no adrenals so it is not unexpected, and not sounding an alert.

The Dr agreed that it was time to refer him back to his Endocrinologist and to a Cardiologist.  So we now wait for an appointment.

While we wait however, we don’t just sit here doing nothing…..

And the mystery continues.

Along with his BP and HR issues, he also can’t take a fright/shock or be startled now without “crashing”.

We decided we needed to get to the bottom of it.  Thinking it was BP related we went out on Saturday to go for a drive, taking the BP monitor with us.  One of two things was going to happen.  Either nothing would happen to cause him an adrenaline rush, or someone would do something to force me to break quickly and sharply, which would give Derek a fright, and I would get an adrenaline rush.

Thankfully the latter happened.  Derek was on the phone, and didn’t see the car in front of me that started to pull into another lane, and then started driving in both lanes, blocking everyone.  I had begun to speed up as we were going 20-30 km under the speed limit.  A little late, I realised he wasn’t pulling all the way over, and I braked harder than intended.  I got a little adrenaline rush as I thought for a brief instant, that I may hit him.  I felt my heart start to beat a little faster and harder.  I got a tingly feeling around my chest.  I am sure we have all felt it.

I asked Derek how he felt.  I could tell immediately that he hadn’t had an adrenaline rush.  It was obvious that it was going to be another drop.  I continued driving for about 2 minutes, until I could find somewhere safe to pull over.

We took his BP and pulse.  It was perfectly normal.  Almost TOO normal. His pulse was in the low 60’s.  Yet we could see, and he could feel, the usual symptoms.  Headache, feeling slightly ill, couldn’t keep his eyes open, felt weak, his speech went quiet, it slowed down.

We continued home (5 minutes away) and checked his BP when we drove in the drive (before he got out of the car).  It hadn’t moved.  His pulse was the same and his BP was within 2mmgh/l of the first reading for both systolic and diastolic.

We continued checking it every 10-15 minutes for an hour.  I had to wake him to do it as he went to bed and just lay there, unable to talk, or really communicate.  Still there was no change in his BP or pulse.

We are none the wiser.

So we are going to try his glucose levels next.  The problem is, we have to wait to see what happens with a fright.  Unfortunately I can’t just make a very large sudden noise and frighten him myself, as tempting as it might be.

We have done a lot of reading on the topic of the Adrenal Medulla and epinephrine/norepinephrine.  There are definite links to these hormones and stress.  There doesn’t seem to be a lot of research into what the effect of not having an abundance of these hormones does.

Adrenal medulla

The inner part of the adrenal gland is called the adrenal medulla. The adrenal medulla produces hormones called catecholamines such as adrenaline and noradrenaline. Catecholamines play a role in the response to acute or sudden severe stress, for example during life threatening event.

Catecholamines are responsible for the palpitations (racing heart), sweatiness, widening of eyes and shakiness of the hand when faced with sudden fear or other stressful situation.

This information is all over the internet.  What we can’t find is what happens when this process doesn’t happen properly and you don’t get the palpitations, sweatiness, etc with sudden fear or stress.  Does the body skip to the next section (rest and digest), or is it part of the process fails but another part kicks in, and then is not switched off because again, the Medulla has failed it’s job.

It is very hard when you have a rare condition, one that is so rare that little research has been done.

If we could find an answer to what is happening when Derek faces the sudden stress perhaps we could find a way to reduce the impact but the Dr’s don’t know and we don’t know how to get them to investigate.  In the meantime, we are having to do it ourselves.

Dr’s don’t know what to do with Derek.  If anyone has an answer please let us know.

A Small Win Update

I am updating a post I made recently about a small win against ACC over the 4 weeks that Derek’s case manager was saying they did not need to pay his wages because he was incapacitated by surgery.

We received a phone call to say the stand-down had been cancelled, and that he would be paid. We now have documents from ACC which state clearly WHY it was changed.

It is a matter of Law. Do Not let them refuse the cover just because.  The following is from the Policy Department regarding incapacity from injury.

ACC cannot set a stand-down period greater than 1 week from Date of First Incapacity (see Section 97) and ACC cannot set a stand-down period at any time on the basis that we have in this case.  I.e., ACC cannot say “but for the injury you would have been off work because of your surgery for 1 month, so we won’t pay you for that month”.

The whole picture changes once an injury that is covered by ACC causes or contributes to the incapacity.  As soon as a covered injury becomes a substantial contributor to the incapacity, then weekly compensation is payable (provided that the other statutory criteria for eligibility are satisfied), regardless of the presence of the non-covered condition and that conditions contribution to incapacity (unless that condition is the whole cause of the incapacity).

Basically, if you suffer an injury of any type that incapacitates you, even if you are on sick leave at the time, ACC MUST pay you.

If anyone reading this is in this situation, feel free to copy the quoted part of this post to use.

When we were in a face to face meeting with the case manager, we again questioned her decision.  She agreed to go and ask another case manager.  She came back and said she had received conflicting advice (she didn’t say she was told she was wrong) and would have to ask her Technical Claims Manager for further advice.

She then wrote notes of our meeting in which she states:

I met with client F2F.  He was not happy that ACC are trying to find out how long he would have taken to recover from his surgery and take this into consideration in the stand-down period.  This was approved by BMA and TM.  However I have spoken to another CM and appears I received incorrect adivse, referring this to TCM.

Even when told she was wrong, she continued on the path.  Question, and re-question every decision your Case Manager makes.   If it is not in your favour, it may be wrong.

The Case Manager told us that the Technical Claims Manager (TCM) agreed with her even after being told they were wrong.  The TCM was ALSO wrong, but refused to admit it.  His attitude was, I have made a decision, if you don’t agree with it, seek a review and bugger you.  We will be putting a formal complaint in about his attitude.

The parts in italics are direct quotes from the paper work received from ACC.  It is a matter of record that she was told she was wrong but refused to change her mind.

A Small Win

In February this year Derek and I decided that he would apply for a Treatment Injury claim against Accident Compensation Corporation (ACC) for the DIC/CAPS which caused the Adrenal Insufficiency.

Definition of Treatment injury

(1) Treatment injury means personal injury that is—
      (a) suffered by a person—
           (i) seeking treatment from 1 or more registered health professionals; or
           (ii) receiving treatment from, or at the direction of, 1 or more registered health 
                professionals; or
           (iii) referred to in subsection (7); and
      (b) caused by treatment; and
      (c) not a necessary part, or ordinary consequence, of the treatment, taking
            into account all the circumstances of the treatment, including—
           (i) the person's underlying health condition at the time of the treatment; and
           (ii) the clinical knowledge at the time of the treatment.

We were very surprised but very pleased when they accepted, without argument, that he had suffered a treatment injury, and they would cover the costs of his time off work, any treatments for his now permanent condition of adrenal insufficiency, an anything else related to his multiple organ failure.

He had taken sick leave from 28 Sept (the day before surgery, but day of admission to hospital), with the intention of returning to work from home, on 8 October.

On 2 October Derek visited the Dr for the first time due to being unwell after surgery (a very important date).

After the Treatment Injury was accepted, we were told that Derek could get reimbursement for the time he had to take of work between October and January.  This meant that all the leave Derek had had to take so he could lay in a hospital bed dying, or sit at home recovering, would be given back to him by his  boss as ACC would reimburse Derek, and Derek could reimburse work.

The process is that ACC agree the dates to be paid, they calculate how much to pay, based on information from your employer, then they pay you, and you pay your employer back in some way (it is up to  you and your employer how this is done).

The reinstatement of your wages should not disadvantage you or your employer, but ACC are not interested in the details.

Sooooooooooooo………

After much toing and frowing, ACC decided that Derek should have been off work for 4 weeks after surgery, and therefore he was incapacitated from surgery, and so ACC would not reimburse him for those 4 weeks, but would reimburse his wages after that period.  This was regardless of the fact we had given very clear evidence that Derek’s intention was to work.

When you receive reimbursement of wages from ACC, you do not get the first week you are off work, but you get every week after that.

According to our calculation ACC should pay reimbursement from 2 October (legal date set for treatment injury as it was the first date we sought treatment), with a 1 week non payment period, that made first day of payment 10 October.

ACC’s idea was Surgery on 29 Sept, plus a 4 week recovery from that surgery made the date of incapacity from treatment injury the 26 October.  Therefore, no payment until 26 October.  They did allow the 1 week non reimbursement to be during the period from 2 – 10 October.

We argued this point several times, but in the end our Case Manager, and Her manager, made a decision.  We were told very clearly that Derek would have his wages reimbursed from 26 Oct.  IF we didn’t agree with the decision, we could apply for a review.  If the person conducting the review agreed with the initial decision, and we were still unhappy, we could go to court.   We asked for them to produce the case law that supported their decision.  Derek’s Case Manager’s Manager actually told Derek on the phone that his would be a good “Test Case” for reimbursement.

Basically we were told they didn’t have to prove they were right, we had to prove they were wrong.

We deiced that this is what we would do, once we received their letter detailing why they had set the date as 26 October.

We then waited for the payment.  Day after day, we checked our bank account to see if the money had come in.  Derek’s boss was waiting for his reimbursement.  We planned to take a break, believing that Derek would have leave reinstated once the reimbursement was sorted out.

3 weeks later and still no payment.  Derek made phone calls to find out what was happening.

Finally he received a phone call from his case manager.  She was trying to sound like she was happy to be giving him the good news.  His reimbursement had been calculated and approved.  And the really good news…………….

Somebody, somewhere (not in the local office) had basically told Derek’s case manager and her manager, to pull their head’s in.  They were both wrong, and Derek’s reimbursement would be from 10 October (the date WE believed was correct).  His case manager had been over ruled in a major way.

She didn’t sound happy to have been told she was wrong but tried to make it sound as if she was pleased for us.  She may have been.  Ultimately we don’t care.  Somebody at ACC had seen sense, and we had won our argument, without having to fight.

It is a small win, but a matter of principle.  So, if you are on sick/annual leave, or working from home (whether a normal situation, or a special setup) you are entitled to weekly compensation for time off work.

If any one reading this is fighting over their Incapacity date because they were injured on sick/annual leave, make sure you fight for your rights.  ACC seem to work on the idea that, if they fight long enough, you will be too tired to argue, and you will accept what ever they say.

You don’t have to accept it.  You just have to have someone in your corner that can take up the fight when you are too tired.

Accident Compensation Corporation say they are there for you, and most of the people we have dealt with at ACC have been wonderful.  But the Lower Hutt’s Long Term Claims branch appears to be there to drag the chain, and sometimes appear less professional, seeming to spend their time working on reducing your entitlement with little regard for the ACC act. When asked what section of the Act they were using and how it was being applied we were simply told “it was their decision, end of story.

This aspect is the worst from that division.  We have a very long list of problems caused by that department, from reading information from other people’s files to you, to stating dates, and then getting those dates wrong, to making decisions that go completely against their own policy.

For someone who does not have Stress Hormones ACC are making Derek sicker and costing ACC more money as he ends up off work due to his Adrenal Insufficiency and they are legally obliged to pay his sick pay.

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.