In Dr’s we Trust?

Without really thinking, we do.  They are Dr’s, they know it all.  But putting all your faith in these special people, especially specialists, is not always a safe option.

We have been going around in circles trying to get more things sorted.  Derek’s lungs don’t appear working properly.  He gets breathless quickly, when talking, when walking, when laughing.  He is now worse than he was a year ago.

We used to walk 5.5km in an hour with no stops.  Now he walks that distance in 1 hour 20 minutes and he has to stop.

We are trying to find out why he is going down hill so have asked several medical people to investigate.

We went to a specialist Endocrinologist in June this year. One we have been to several times.   We mentioned this reduction in ability, but it was not recorded.   He spent a short time with us, discussed things, then wrote a letter to our GP.

This is an important letter as it tells Derek’s GP how he is doing currently with his health and his medication levels.

We have recently changed GP’s as our previous one has recently retired.  Therefore the new Dr needs all these specialist notes, to ensure she is treating Derek properly.

At the time of transferring, we decided to get a copy of all of Derek’s GP’s notes from his previous GP to see what had or hadn’t been noted.

What I found floored me.

We all put our faith in the medical profession getting things like medication correct..  But is that faith justified?

To put your all trust in what Specialists say (and they are supposed to be the all knowing Gods of Medicine), has again proven to be very dangerous.  Thankfully this time, we ignored what the specialist wrote, and the Dr didn’t bother reading what the specialist wrote.  Instead, the Dr asked US what medication Derek was on.

What the letter stated as Derek’s medication was  dangerously wrong.  This specialist  is the one responsible for making note of what Derek’s medication should be on a daily basis to keep him alive.

According to the latest letter to our GP (and the one that the hospital would read to confirm dosage) The letter states ….Hydrocortisone is 10 (5 at lunch, 5 at dinner)….

hc dosingThe letter should read 10mg HC in morning, 5mg at lunch and 5mg at dinner.  There is 10mg of Hydrocortisone daily missing.  It is half his daily dose to keep him alive!

If Derek took that low a dose he would not be conscious to take HC at lunch time on the 2nd day.  He takes 10mg in the morning (6am) rolls over to let it kick in, then takes another 5 before lunch time, and another 5mg at 4pm.

Derek has had blood tests done at 8am before his morning dose of HC and it was found that he had a level of  9nml/L in his system, the absolute minimum a normal person should have is 250nml/L.  It should actually be in the 500’s at that hour.  Less than that and you are probably in crisis.

Taking 5mg at lunch time, then 5 in the late afternoon would not be enough to keep him alive for more than a few of days, and those would be a major struggle to stay conscious.

Taking Hydrocortisone is not like eating extra food.  You can’t take your normal dose one day, stay in bed all day, and store it up, to use when needed another day.  It peaks at 2 hours post taking, and only lasts in the system for 4-6 hours.  Once that 4-6 hours is up you start to go down hill until you take your next dose.

Derek cannot get out of bed in the morning except to struggle to the toilet if he hasn’t taken any HC.

And the kicker is, the less HC you have in your system, the quicker you use it up as your body starts fighting to cope, so it use up what it has to function pretty quickly.

So putting on a legal document that he is only on 10mg a day when he struggles to stay out of crisis on 20mg, is a medical misadventure waiting to happen.

NEVER PUT ALL YOUR TRUST IN YOUR DR.  Always get a copy of your medical notes, and check them for accuracy.  They have a habit of not recording everything you say, interpreting it how they want so it fits the book, or just brushing it off.  Or worse, not checking their own notes, when writing to inform others of important information.

There is no excuse for getting critical details wrong when it could seriously harm someone

 

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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.

It’s All in His Head!

Imagine how you feel when you are trying to get someone listen to you, to help work out what is happening and the Dr you are talking to you tells you that.

For months we have been trying to work out what we should be doing when Derek gets a fright and has an “episode”.  He would get a bad headache, loose focus, be unable to communicate properly, speech becomes slow, it is all he can do to be conscious, as and he has to lay down.

Then when you finally get an appointment with a Specialist and you are told that “it’s all in your head”.

Lets go back to last year………

While Derek was laying unconscious in hospital, I noticed that the left side of his face was slightly lower than his right.  I tried talking to the Dr’s about it, but they didn’t show any interest.

When he left hospital we noticed (I noticed) he had left side deficit in his leg and his foot would slap when he walked.

It took 6 months of physio to fix it to a point where we only notice it if he is really tired.

He also has the issues I recently highlighted where every time something happens he ends up needing to lay down for hours on end.

We have been searching the internet to try and find an answer.  We were sure it was to do with his adrenal glands, and the lack of an Adrenal Medulla, but couldn’t find anything to give us a hint of what it could be.

After our last visit to our GP he finally decided that it needed investigating.  Great.

He contacted Derek’s endocrinologist.  As far as the Endo was concerned, his Adrenal Insufficiency was under control.  He was sure it wasn’t that so he didn’t want to see him.

Derek was then passed on to a General Medical Consultant.  We are not sure how it worked, but the GM Consultant to take the case was  his Rheumatologist.  Great, but could he explain anything/everything?  Would he listen, would he be able to work it out.

Apparently yes, his explanation is that “it’s all in his head”.

The Dr confirmed that Derek’s Adrenal Insufficiency is under control.  He is on the right dose of Hydrocortisone, he is on the right dose of Fludrocortisone.  Using clinical observations, he could confirm that the petuitory gland was fine, blood tests confimed his thyroid glands were working properly.

As the Dr sat there listening to Derek’s symptoms he asked a lot of questions and made lots of notes.  The most interesting thing is that he LISTENED.  He didn’t just pay lip service to what we were saying, go aha, ok, then say, Don’t know, go away.  He asked for clarification of each individual symptom.

The whole appointment took 1.5 hours.

At the end of it, the conclusion was “forget everything from the neck down.  We will focus on your head, that is where the problem is.

I.e., “IT’S ALL IN YOUR HEAD”

THANKYOU!!!!!

Finally we are being listened to.

What the Dr explained is that once you put the fact he has no adrenal glands aside, all the symptoms that are left can be very easily tied to traumatic brain injury.  The same type of injury you see in car accident victims, head injury victims etc.

Derek is now being booked in for an MRI and a neurological exam.  The Dr believes that there was probably (in fact extremely likely) brain involvement with the CAPS last year.

They may not be able to prove through an MRI that there is damage, but a neruo exam will help.  He seems convinced however, that it has happened.  He did warn us that we may never be able to fix the problem, it may or may not get better, if it does, it may take up to 5 years to see any improvement, but we don’t expect to see it back to normal.  That is fine.  At least we will have an answer.  Somebody is taking the time to confirm what that there is a problem, and what the problem is.

We will finally get an answer.

We will then have to learn to live with whatever the results are, but that would be no different to what we are living with now.

“it’s all in his head” is a good thing.  Brain Injury not so good, but we can work with that.

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.

The Holiday Begins

I began my holidays on Friday 30 August.  My first day I woke up to sounds of Derek.  It wasn’t great.  He felt unwell, and was spending too much time in the bathroom.

My first day off in months and he was in bed sick.  Great, just what we wanted.  But he didn’t take extra medication.  We decided to ride the wave and see what happened.

Saturday we woke up and he felt better.  It was Derek’s first day of leave.  He tried to spend a quiet day, relaxing as much as he could.  Unfortunately because he had been sick on Friday a lot of things that I had meant to do to prepare for going away hadn’t happened because I spent most of the day looking after Derek.

Things had to get done on Saturday instead.  Sunday I did a bit more. Monday we finally got round to packing.  By then I was tired but Derek was feeling better.  He was able to help get his clothes together, and, when sitting down, was able to think about other things we needed to pack.

Day 1, Tuesday morning we woke up prepared to drive from Wellington to Taupo.  It dawned grey and cold.  A little “frost” showing hints of appearing.

We packed the car (well I did, Derek didn’t do a lot) and once the kids had left for school I made a coffee and off we went on our great adventure into the unknown.

Our first incident happened within 40 minutes.  As we were driving around a tight few corners I was going fine but slow and suddenly jerked the car to the right.  A vehicle had pulled out of a driveway on a sharp, blind corner.  It gave me a slight fright and I took quick evasive action as I thought it was going to come out in front of me.  Obviously the driver was used to leaving his driveway in reverse on this corner, as he stopped just short of being on the road proper, and waited.  My heart beat fast for a few seconds, then I calmed down

Derek however, was not expecting it, and got a fright.  Within 5 minutes he was yarning, commenting on how tired he was, and not wanting to do anything else, but rest. He couldn’t keep his eyes open.

The road after that was relatively straight, and traffic, on the whole, was well behaved.

Even so, it took him over half an hour before he started to feel better, and more awake, more able to focus (brain fog had kicked in).

We continued to Levin where, as Derek was coming right, we stopped to take a walk.  I was driving, so I needed to take brakes rather than driving long distances and Derek needed to stretch his legs.  It was nice to refresh my brain.

We then got back in the car and began part to of our journey, driving through to Taihape for a late morning tea.  Thankfully there were no more incidents.  Derek had a travel pillow behind his neck so he rested a lot, still trying to recover from the shock he received when we first left Wellington.

As I was driving I saw a cafe we had always talked about stopping at, but never had.  So I pulled in, and we had a coffee and cake there.  It was great to be able to just stop if we wanted to with no kids asking why, or having a deadline we were working to.

Nice coffee, nice staff.

It was just before 12 so Derek decided to take his noon HC a couple of minutes early to save taking it in the car.  By now the morning clouds had gone and the day had turned to an amazing NZ day.  Bright blue sky, warm sun and picturesque views everywhere.

We headed toward the Desert Road getting views of Mt Ruapehu as we drove.  It was a glorious snow covered mountain looming ahead with no cloud around it.  A sight you always want to see, but don’t often get to see.

As I drove the Desert Road Derek was feeling a bit better, so took photos.  Anyone that has driven the Desert Road will know that you go along open roads, long and straight, with slight inclines as you rise in altitude.

At the northern end of the road, you begin the decent to Lake Taupo.  It is steep, windy and very much an up and down decent.  You have to go slow in some areas. And you cannot see what is coming round the next corner.

We were following behind another car which was travelling at a steady, safe speed.  As we were going along the car in front began to round a corner when I noticed he applied his brakes and slowed right down.  The car went from view but as I began to round the corner he was stopped, a car in front of him was stopped, and a car heading in the opposite direction was also stopped.  They were all talking.  There was no room on either side of the road.

Although I was slowing because I had seen the car breaking in front of me, I applied the brakes harder, bringing the car to a quick, but safe stop behind the other vehicles.

Derek hadn’t seen what was happening and suddenly felt the lock of his seat belt as the car came to its stop.

As you would expect, it gave him a bit of a fright.  Nothing major had happened.  His heart should have done a flutter, and he should have then been fine.  Unfortunately that wasn’t the case.

Instead, his brain told him there was something wrong, he had to hold on, but his “fight or flight” didn’t kick in and he had to analyse and think about what he had to do.  There was no instinctive reaction.  It was only because he knew we were stopping that he knew he had to hold on.  He then swore.

I realised it was a “Pilot” vehicle coming in the other direction and we had to pull over as there was a very wide load coming round another blind corner towards us and there wasn’t room for us and them on the road.

Once the wide load, and the following Pilot Vehicle had passed us we carried on over the windy road.

About 5 minutes later Derek could feel his energy being slowly drained from him. He likened it to someone pulling the stopper out of an oil sump, and the oil, thick and sludgy, slowing draining away.  He began to get a very heavy headache across his temples, and just wanted to shut his eyes.  He couldn’t do anything.  Over the next half hour he began to start yarning, he felt sore, tired, and he couldn’t focus on anything (brain frog again). I tried talking to him, but he couldn’t speak properly, he was far too tired.  He felt like he was going into crisis.  At the end of half an hour he realised he wasn’t coming right as quickly as the first time. Again I tried talking to him, but he was becoming irritable.  All he really wanted to do was lay down and sleep, but he couldn’t as there was nowhere to pull over.

Earlier, when we were stopped for a snack, he had taken 10 mg of HC.  It should have only just been kicking in when the incident happened and he said it felt like he used it all in that incident and had nothing in reserve.

Luckily his meds were only just going into his body, so, although it took over an hour from the incident, he did begin to recover.  If he hadn’t just taken his HC he certainly would have had to take a large dose to make it up.

He felt tired for the rest of the day, even when he had taken his 4 o’clock HC.

Thankfully the rest of the journey went relatively smoothly and there were no more “incidents”.

We stopped at Taupo for a snack as we were too early to head to the homestay we were booked into for the night.

Day 2 of our holiday dawned dull and grey.  We had a lovely breakfast, served up by our very hospitable hostess.  After breakfast we went for a short walk along the country road where we were staying but it started raining so we had to head back to the Homestay.  We had a light lunch and then settled down to read.  We both fell asleep for a while.

Eventually we woke and, as there was no going outside because of the weather, we sat playing cards for several hours until dinner was ready.

Derek was tired so after dinner, we headed to our room to lay in bed and watch TV.  Well, I watched TV, Derek slept.

Day 3 and we were packing our bags to head to Hamilton.  Thankfully the drive from Taupo to Hamilton was without incident.  Derek had recovered from our trip up, and he was happy to be heading to our friends place.

A Long Slow Recovery

ON 30th May  the “Experiment in Independence” ended.  At least that’s what we thought.  This weekend is the first weekend since then that Derek has actually felt like he can “do things”.

Wednesday Derek had a meeting with ACC to discuss where they are at to date regarding the reimbursements, wage compensation etc for while he was off work for 15 weeks last year.  I picked him up from work, and drove him to the meeting.  He had just taken his 12 o’clock dose of HC and then met his CM.  By 1. 40 he was starting to rapidly go down hill.  He had to take extra HC.  We put it down to the stress of the meeting.

Thursday he woke feeling OK.  Not as tired has he was the previous week.  The stress of the meeting the previous day had not had a major effect on him because he took the extra HC.  This is how things SHOULD be.

Thursday we went out for 2 hours (in horrible weather) to watch our teenagers perform at a Music Presentation at school.  Friday night Derek stayed up until 9.00 pm (normally bed for him is 7.30).

Saturday Morning he sat in the car while our Learner Driver daughter drove to her job, and he drove back home which is  3KM of driving.  Not far, but the furthest he has driven in over a month.  We went to the Hardware Store (me driving), took my son to band practice (me driving).  He actually felt like coming rather than resting.

Saturday morning, where Derek would normally be tired, and want to rest, he felt like he could go out with me.  I noticed that when 12 o’clock came round, he was surprised when his alarm went off to get his HC.  In the last 4 weeks he was hanging out for 12 o’clock to come.  4pm, again he was happy to wait.

It wasn’t a lot, but it was a great improvement.

The biggest difference this week is that he has been getting a Taxi to work and home again all week.  ACC came to the party, and it has definitely made a difference.

It was suggested at one point by someone, that “If you are too sick to get to work, perhaps you shouldn’t work.”  This is not an option as it is the mental stimulation of working that keeps him alive.  IF he didn’t have that, then I am sure he would not get well.

We have the Taxi for 3 week, then it will be re-assessed and they will see what they can do.  It’s a start.  It has given him a chance to recover from everything.

The weather was terrible this week (a major storm by Friday) but he survived it well and has now reduced his meds back to 10/10/5.  Once he has leveled out some more, he may try going back to the 10/7.5/5 that is recommended.

Sunday morning came and he didn’t feel the need to roll over as soon as he woke to take his HC so he left it for 10 minutes.  He then got a surprise when 12 came again.  He didn’t immediately stop to take his HC, but finished what he was doing.  15 minutes later he was stopped.  Again, he didn’t feel like he was running low.

Fingers crossed he will stay at this level for a while.  We can only put the recovery down to having a lift to and from work in the cold and wet.  It means I have the chance to relax a bit as well.

Getting a basic level of Fitness back is the next challenge.