Still a Single Road at Times


In 2013, my second post was very short.  It was entitled “As single road at times”.

My posts back then were very short.  They were a lot about how I was feeling, how we were learning to live with this condition strange new called Primary Adrenal Insufficiency (Addison’s Disease).

It was May 2013 that I began to Blog.  In the last 6 years a lot of things have changed.  But a lot have stayed the same, we have just learned to accept them and adjust to them.

Going to live performances, etc alone has become a new normal.  I buy 2 tickets, and find someone to join me if Derek isn’t up to it.  This could be a big show, or one that our children are performing in.  Adjusting things so that we can go together has also become a “thing”.  Whether that is by buying a matinée performance ticket instead of a night time one, or making sure he has a full day of rest, including a sleep, we will do what we need to, to keep going.

In May last year Derek had a set back.  It was serious but it wasn’t obvious.  A few blood tests went haywire for no obvious reason, he became a lot more tired than normal, and other subtle differences occurred.  Despite this we carried on with life.  We continued planning our big adventure overseas.

We did the trip.  It was extremely tiring on Derek.  We did a lot of walking with him using a walking stick constantly.  We would walk, stop for coffee, walk, stop for a cold drink, walk, stop for a few photos, walk, stop for an ice cream (they make great ice cream in Europe).  You get the picture.

Derek has been more tired than usual since getting home.  It’s now 6 months since the trip and he is still a lot more tired than he was before May last year.  So we have made more adjustments.

We have learned from that trip that you have to choose the fight.  So now, if we are going out and we know it will be stressful, or very tiring on Derek, we use a wheelchair for him.    After borrowing one for an evening we knew would be too hard on him without, he finally agreed that he really did need it.  But not all the time, just for the harder events.  It means that sometimes he can go out, and we can enjoy ourselves together.   I still go out on my own because he is not up to it.  Or we cancel our plans because I don’t want to go alone.

What we thought was just residual tired from the trip appears to not be that at all.  After having more “crazy blood tests” we began to wonder.  We have now looked at his bloods for the last 12 months, what ever is wrong, has been wrong since his various blood levels went haywire in April/May last year.  But that’s ok, there is nothing we can do except keep an eye on his levels so that is what we do.

The reason we know things have not be right since May is that we keep track of all his blood tests.  We don’t need to go the Doctor to ask, we can see.  We know the symptoms, we know the signs and we can see his “normal” is changing and not for the better.

Having said that, in the words of a good friend who writes an amazing blog, he is clearly alive and will remain so.

Dehydration in Adrenal Crisis

When your sodium is normal, but you are dehydrated.


Dehydration does cause the serum creatinine to rise and the estimated glomerular filtration rate (eGFR) will, accordingly, fall. The degree of change is generally proportional to the degree of dehydration. Severe dehydration can actually cause acute kidney injury and may lead to a need for dialysis therapy.
National Kidney Foundation.

Water, water, every where,

And all the boards did shrink;

Water, water, every where,

Nor any drop to drink.

The Rime of the Ancient Mariner (text of 1834) Samuel-Taylor-Coleridge

Within the support groups there is always talk about dehydration being a sign of crisis, or impending crisis (or pre-crisis if that’s what you prefer to call it).  To decide if you are in crisis, your electrolytes are checked.  The standard sign is low sodium of <135 and/or high potassium of >5.2.  The problem is when you don’t fit this criteria.

I hear many times, people believe they are in crisis, they feel horrible, they feel sick, they feel dehydrated, but when they present at ED they have their bloods taken, and are told they are “normal”, they aren’t dehydrated and therefore they can’t be in crisis.

What is being tested is sodium and potassium.  I don’t often hear talk about creatinine.

Yet creatinine is the better teller of dehydration.  Derek has had 3 crisis since diagnosis.  The first two I didn’t get the blood test results for.

The 3rd one, because it was 18 months after diagnosis, I knew Derek’s normal blood levels.  I was recording them on OneNote so I had them with me wherever I was, whenever bloods were taken.  So I asked the Dr what Derek’s blood results were.

She insisted they were “all fine”.  I kept pushing requesting very firmly that she told me the levels.  She kept saying she couldn’t remember them, but they were fine.  After pushing more and explaining that I knew what his normal was, so I would like to compare them, she finally told me that one was creatinine.  She remembered this number because it was high, which meant his kidney function was low.

When I pointed out that it was changed and higher than his normal level she actually argued with me that it was better than the one she compared it to.  I asked the date of that one.  It was compared to when he was in hospital suffering  CAPS and his worst and most life threatening Adrenal Crisis, before diagnosis.  She wasn’t interested.

She was a Resident, which means she was learning how to be a Dr, she was a first year resident, so some basic knowledge should still have been in her brain.

Although at that time I knew Derek’s numbers, what I didn’t know was what those numbers meant.

After some more toing and froing we finally got Derek some SoluCortef, but still no fluid because his sodium had come back in the higher end of normal.  I have since learned that his potassium was just above range and higher than normal for him.

The next day when the General Medical Consultant did ward rounds, his first comment was “So, pneumonia and adrenal crisis, and you are dehydrated.”

He had looked very quickly at a vein in Derek’s neck to confirm, but he was also looking at the blood results.

After I got home I started investigating what it was, when sodium was normal, that told him Derek was dehydrated, and why drinking water hadn’t helped.

Here’s what I found out.

Why Sodium and Water may not help. A very simple explanation.

Although Sodium can be a sign of dehydration, when you are on fludrocortisone sodium can be kept within range, but it won’t stop the kidneys from functioning below par.

When creatinine is higher, and therefore eGFR is lower than YOUR normal, it is a commonly known indicator of dehydration.  The lower the eGFR number the more dehydrated you are.

But why don’t sodium and fluids help?

If you are really suffering low cortisol then that same low cortisol stops your body absorbing fluids so you not only need sodium, but you need cortisol, to keep you from becoming dehydrated.  This is where Blood Pressure comes in.  When you are first dehydrated, your body kicks in with a lot of other system mechanisms, to keep your blood volume up, hence you don’t suffer low BP immediately.  It is the dehydration that determines when your blood pressure lowers.

The reason HC works to lower your BP is because it helps your body absorb the fluids it needs to increase blood volume, and thereby reduce the other mechanisms from activating, to try and balance things out.  This won’t necessarily stop the crisis, but it will help you long enough to get more help.

So if you are told you can’t be dehydrated because your sodium isn’t low, ask what your creatinine (or eGFR) is.  If they don’t know, ask them to find out.  If they still argue, ask them what anti-diuretic hormone does, and the effect of that when you have low cortisol.    It is one of a number of the mechanisms in your body to keep your blood volume up when dehydrated.

Generally, a high serum creatinine level means that your kidneys aren’t working well. Your creatinine level may temporarily increase if you’re dehydrated, have a low blood volume, eat a large amount of meat or take certain medications. – Mayo Clinic Website.


Back to Derek

When Derek is dehydrated he slips from Stage 2 to Stage 3 CKD.  We have to monitor it regularly.  IF you don’t know what your normal is perhaps you should find out when you are feeling healthy.  This could save you a lot of medical issues when you are sick.  And check out my post on “know your own normal” because sometimes, it too can save you.

One thing I remember is when Derek was in hospital in crisis before diagnosis, after 3 days they had to stop the fluids as his body was swelling up, and wasn’t absorbing the fluids.  His kidney’s were failing, his blood pressure had started going down, and fluids were not working as he was just absorbing into tissue, his blood volume was going down.

A number of people have asked why they get fluids and fee better, before they are in crisis.  these people still appear to have a very small amount of cortisol production.  It may be that it’s enough to help absorb the fluids.  Derek has no production, so at the time his body had nothing, including aldosterone, to help.


The Half-life of Facts


I was watching QI this morning. It’s a show where the facts are “Quite Interesting”, and generally obscure.

This morning the episode said something I was so intrigued with, that I rewound it to.
It stated that “At medical college, they usually teach that half of what medical students will learn, will be considered untrue in 10-20 years. This is termed the “half-life of facts”. That is to say that you know that half of the information will be untrue, you just don’t know which half.”

I found that to be Quite Interesting. Enough so that I decided to look the fact up, and see if there was any truth to it.

Samuel Arbesman, a mathematician at Harvard, titled his new book “The Half-life of Facts”. When talking to the Economist, he stated:

For example, in the area of medical science dealing with hepatitis and cirrhosis, two liver diseases, researchers actually measured how long it takes for half of the knowledge in these fields to be overturned. They gave a whole bunch of research papers from fifty years ago to a panel of experts and asked them which were still regarded as true and which had been refuted or no longer considered interesting. They plotted this on a graph. What they found is that there is a nice, smooth rate of decay; you can predict that every 45 years, half of this particular sort of knowledge gets outdated.”

But why am I citing an article in the Economist. Because you probably know a Dr that is still using that 50% of knowledge that is now outdated. Yet they treat you based on that knowledge.

According to Dr. Michael Gold from the Medical University of South Carolina; To paraphrase:

The half-life of medical knowledge is seven years.”

If Dr’s are not keeping up to date, they may be treating you based on what is now outdated knowledge. We have found one such Dr in the guise of the Medical Advisor of one national Advocacy group

He trained 50 years ago. Based on the half-life of facts, if he finished his training in 1970, by 2010, almost 50% of what he learned is outdated. Some of that is “knowledge” is still stating as fact which is on the groups public webiste. When we recently questioned this knowledge (which we showed with research papers to be obsolete) we were told by the Advisor “I don’t care.” (words in writing).

This attitude by the “Medical Avisor” of a major Advocacy Group for a rare condition leads to several questions.

  1. Why is he holding the position? Is it just that it has some kudos?
  2. How does his obsolete knowledge help patients today to live a better life when other Doctor use that “knowledge” to treat the patient.

Knowledge is Power, but obsolete Knowledge is DANGEROUS!

Continuing education is key to good Doctoring. And that continuing education must include reading recent research on the conditions they are treating and accepting that just because it goes against what they have been taught, doesn’t mean it is wrong, or that the Dr researching and promoting the new information is doing it “for ulterior motives”.

Next time you speak to your Dr, ask him the date of the last Research Paper was that they read? If it is before 2000, then there is a better than even chance that half that knowledge is obsolete, or will be in the next couple of years. Ask them if they have heard the term Half-life Of Facts.

Some will agree, others will get upset because they will be reminded that they are not as up to date as they should be, and others will probably refute the statement, or get angry about it. Most likely the latter, are so well past their half-life with knowledge, that they should perhaps be ignored completely.

Prostate cancer campaign ahead

Finally Prostate Cancer is being taken as seriously as Breast and Cervical Cancer.  Derek is “in remission”, i.e. he does not currently have active cancer because his Dr is proactive in screaning.  Had he not been, who know what state it would have been in, a year from now.  2 years makes all the difference in catching Prostate Cancer in time to act, or in time to “treat” until death.

A Catastrophic Event – Part 4

When we left Derek, he was sitting in a new room, having been moved to a “transit” area awaiting release on the Monday after 1 final CT of his Adrenal Glands.

The ward was mainly for neurological patients (strokes etc), so there were no TV sets.  To save him from boredom, I took Derek’s Laptop in for him to use, along with some DVD’s to watch.

He spent Friday night in the room.

Saturday was quiet.  He still didn’t feel like doing much, so just sat around, watching DVD’s, playing card games etc.

Sunday morning, I drove in quite excited.  He was coming home for lunch, and then heading back in in time for dinner on the ward.  I took some clothes in for him to put on.

I got to his room, and he was having a shower.  He came out looking tired, but happy to be getting day release (he had obviously been behaving himself).

I drove him home, watching him very carefully.  I was nervous.  He still didn’t look great and had almost died on me.  I wasn’t taking any chances.  I made sure I had his emergency kit that we were told to put together.

We had a quiet time at home.  Derek sat on his chair in the corner with his legs up.  He tired easily, but that was to be expected.

After watching TV for a while, I decided it was time to get him back to hospital.  Once we got there  I tucked him in for the  night and left, knowing I would be taking him home the next day.

Monday 29 Oct

I arrived at the hospital that morning by 9.00 am.  Derek was taken down by wheelchair for his CT scan.  He was away for about half an hour.  While he was gone, I packed up all his stuff, got out his going home clothes, and prepared for a quick exit.

All we had to do (after 2 weeks of sitting by his bed) was wait for the Dr to come in and say “yes, you can go home”.

We waited…..

And we waited……

An hour went by, and we still waited.

Finally the Dr arrived.  He pulled the curtains around the bed for privacy (as they always do).

“Right” he looked at us both.  “As you know we were looking to see what state your Adrenal Glands were in”.

He went on to tell us about the fact they showed bilateral bulky adrenal glands.  Much as we expected.  So it meant he would probably have permanent Adrenal Insufficiency.

“So we can go home now?” I asked.

“We need to refer you to the Hutt Hospital to be monitored, and managed”

“So we can go home now?”  again I asked.

“We also had a quick look at some other things while doing the CT.”

“What about going home?” I am beginning to get a bit concerned at this point.

“I’m really sorry”

I looked at Derek, then at the Dr.

“There seems to be a problem with your heart”

“Oh, for f…. sake” was all I could say.  Derek just sat there, quiet.  We both knew what was coming.

“We need to do another echocardiogram.  It looks like fluid around your heart, which explains the high heart rate.”

We were told he didn’t know when Derek would have the echo, but he was to remain on the bed while he waited, it depended on how busy the bedside echo tech would be.

An hour later the Dr comes back in.  There is a significant amount of fluid around the heart (a dangerous amount).  He is also developing fluid around the lungs again because of the pressure on the heart.

Complete bed rest!  2 hourly ops, peeing in a bottle, not allowed out of bed.  He isn’t even allowed to use the laptop.

He was to be moved back to cardio as soon as they could find space for him.

The put him down to have the fluid removed from his heart on the Tuesday, but (and with Derek there is always a but) they have worked for 4 days to get his INR to a therapeutic level and they now have to take him off warfarin, give him a vitamin K mixture and use hepron to reverse their hard work they have done BEFORE they remove the fluid.

He also showed signs of tempanade on repeat transthoracic echocardiogram (TTE).

3 hours later a nurse and an orderly from Cardio arrived on the ward to escort him down to the Cardio monitoring ward.  They wouldn’t let him go on his own, with just an orderly as he was not in a good state.

They also had him back on a heart monitor.

Tuesday 30 Oct

They took Derek into a treatment room of the Cardiothoracic ward to put the drain in his Pericardial sack.  It is a procedure that is not often done in a calm, quiet way, so being a teaching hospital, there were a number of requests to observe them doing the procedure.

Once the drain was in place, they bought him back to the room.  He was conscious throughout the whole procedure.  The fluid began draining from his heart.

Now he had to wait.  They were draining it for 24-36 hours, to see how much fluid would drain.

Wednesday I arrived at the Hospital to see about a litre of bloody fluid in the drain bag.  There should be around 15-50 mls.  A litre was a lot more.

Thursday 1 Nov

The drain was taken out on the Thursday.  It was a very long tube, and they simply cut the stitch holding it in place, and then started pulling.

They moved him into a side room with less monitoring, and informed him he  would be in over the weekend because they wanted him on a Hepron infusion for 2 days while they put him back on warfarin.  All things being equal he would be home on the Monday.  Hmmmm. We had heard that before.

Saturday 3 Nov

I arrived at the hospital to have Derek tell me that his heamoglobin was low, so he needed a platelet transfusion.  Just after he told me about it, two nurses came in with a bag of platelets.   He still had the Hepron infusion in his left arm, so they put the blood in his right arm.  He lay there with an arm stretched out on both sides of the bed, stuck, while they pumped both products into him.

Tuesday 6 Nov

They decided to wait until Tuesday to do another TTE.

Thankfully there was no more buildup of the pericardia effusion.  All being well he was finally going to be released from hospital the next day.

And so the worst is over.   He was released on 7 Nov.


Now for a new path.  That of the Addisonian. 

A Catastrophic Event – Part 3

We pick up the story on Friday.  Things were going down-hill ………………………….

The only reason I know what was happening was because I was told by some wonderful people on a Ladies Prostate Cancer forum, that I should record everything that happened with his treatment, and after care, for future reference.  I didn’t realise then, how important it would be in saving his life.

 Friday 5th October
erek had an appointment at Urology at the Hospital.
His catheter was removed.  He had had diarrhea for 24 hours.

We asked the Surgeon about the rash on his back. He told rash he didn’t know about rashes and just left it at that.  We then mentioned the bad gastric wind, pain, being unable to do anything.  He said that recovery from surgery was sometimes very slow with 2 steps forward, 1 step back.  We couldn’t make him understand that there were no forward steps, each day was a step backwards.
He told Derek to stop all meds.

 Saturday, 6th

Derek woke to a lot stronger pain in abdomen. He still had very loose bowels.
I gave him Panadine twice during the day for the pain. His stomach was becoming very tight and swollen.

 Sunday 7th:

I forced Derek to walk to end of street hoping that his wind would ease.  Each time he got up to walk around he would burp.  It was relentless.  But it didn’t ease the pain.  The ball of wind was under his ribs. He felt weak and dizzy when he stood up, he would have to sit down again.  He couldn’t stand for more than a minute or two.

The pain and swelling was so intense that I phoned a medical help line to see what I should do.  They told me to take him to an out of hours medical clinic for assessment.

His stomach was distended and painful to the touch on the right side.

He was given Omeprazol 20 mg 1 bd to reduce gas and told to go on a liquid diet for 2 days.  By this time he wasn’t eating, and was starting to lose weight.  He was also told to increase fluids and take panadole.  He also had indications of a throat infection (red and swollen, similar to the rash he had on his back.

 Monday 8

Derek would only get up to try and reduce the wind.  The omeprazole would work for a short time, but not completely.  The pain was worse.  He could not stand apart from getting himself to the toilet. He was now in bed most of the time.  He wasn’t even able to sit/lay in his chair in the Lounge.

 Tuesday and Wednesday were pretty much just a worsening of previous days.

 Thursday 11 Oct

Derek started complaining of Groin pain (described as “Like a stick being shoved between his scrotem and anus.”   It was bad enough to get him taking a lot more Panadine.  He could not get comfortable, he still had a temperature.

He had now developed a strange rash around his neck.  It was very red, raised and blotchy.  It stayed for several days.

He had an INR in the morning which came in at 6.5.  He was ordered to stop Warfarin.

 Friday 12 Oct

I took Derek to the Dr again.

We were sent for blood tests.   His temperature at the Dr’s was  37.8.  We kept giving Panadol, but it would not come down.  It rose to 37.9 an hour after taking Panadol.

His INR was down to 4.5

 Saturday 14 Oct

Derek went for another INR.  We left the lab and took the lift to the ground floor, walked outside to the car, which I parked right outside the doors.  Derek stopped before he got in the car.  He noticed a strange sensation.  He lifted his sleeve to see blood streaming down his arm.  This had never happened before.  Normally when he had an INR test, he would have a couple of drops on his arm and that was it.

Derek’s temperature continued to go up and down all weekend.

His Stomach was very tight, swollen, and painful.  The pain kept increasing.  He was completely bed ridden.

 Monday 15 Oct

The pain was at 8/10.  He Vomited at 3.30pm.   He hadn’t had any sleep Sunday night due to pain, high temp etc.

 Tuesday 16 Oct

He vomited at 3.30am.  Later in the morning he vomited again twice.

He described the pain now as 9/10.  I phoned the Dr for an urgent appointment.

I managed to get him to the car but it was not a good trip to the Dr’s surgery.  Every corner I went round caused major pain.  He could barely stay conscious.  He could not hold his head up.

The Dr examined him and said it was time he went to Hospital (finally).  I told him there was no way I was driving him there.  It had been bad enough just driving him to the Surgery.

The Dr agreed and phoned for an ambulance.

He was given Morphine and fluids during ambulance journey to Hospital.  By the time he arrived at the Emergency Department he described the pain as down to 5-6/10 (on morphine).

His stomach was very swollen by now, he had dry cough, and was barely conscious.  His blood pressure was very low, but his pulse rate was up.

They took a chest xray to see if he was bleeding into the abdomen and admitted him to the Urology ward thinking that it was all to do with the surgery.  He had a partially collapsed lung and possibly pneumonia.

I left late that night as I didn’t know what was wrong, and I was very concerned.  Derek looked very unwell.  He was in a lot of pain, he wasn’t drinking.  They put him on a drip for fluids, a drip for antibiotics and were trying to settle him in for the night.

 Wednesday 17 Oct

I got to the hospital in the morning and Derek looked worse.  His blood pressure was way down, his heart rate was up, he was now on oxygen and there were people coming and going constantly.

They decided to do a CT scan.  They couldn’t find any fluid in abdominal cavity.

What they did find was a Small amount of fluid on the lungs (plural effusion) and something in the lungs, which they thought was probably from the fluids being given.

Urology couldn’t find anything wrong on that side of things so they decided to call in some other people.

The case was being referred to General Medical for consultation.

I walked past the Nurses station at one point to see a group of Dr’s talking.  Apparently they were all there discussing Derek.  The list of Dr’s were:  Urology, Heamotology, General Medical, Infectious Diseases and Cardiology.

I heard a comment from someone who asked “Where was he diagnosed with Antiphospholipid Syndrome”.  I knew immediately that this was a problem, because it meant they didn’t know anything about his blood counts for IgG or Lupus Anticoagulant.

A female Dr came into the room and I immediately recognized her voice.  I asked her if she was the one querying his diagnosis and she said yes.  I told her exactly when and where he was diagnosed.  She admitted there was nothing on his notes (which there should have been because of his surgery), and she went off to check on the diagnosis.  We never saw her again.

 Thursday 18 Oct

Derek was deteriorating.  A General Surgeon Registrar came around at 11.30 Wednesday evening.  Derek doesn’t remember much of the visit.  All he remembers is something about a Heart Murmor and being rushed off to have something done.  He couldn’t remember what.  He is now to be seen by a Cardiologists as he didn’t have a heart murmer when he was admitted on Tuesday.  His Treponin T ‘s were elevated.  He had an Echo for Heart Issues.

He was moved to CCU due to concerns with his heart and his increasing TT’s.  They removed fluid from his plural sack for testing.  They were also considering pancreatitis as a possibility.  He now had Kidney issues as well.  They were failing.

They had noticed in one of his CT’s that his adrenal glands weren’t quite right, but they dismissed them as not crucial because he had:

  • Heart Failure
  • Partial collapse of one Lung
  • Plural Effusion
  • Worsening Kidney Failure
  • High readings of his Liver enzimes
  • Splinter hemorrhages in his fingertips,

All Fluids were stopped as he was not processing them properly and he was begining to swell.

They changed his Antibiotic to vancomycin IV.  He was was taken for another scan of his heart, and an internal probe to see what they could find.

By this time he was barely conscious, not able to wake up.  If he paused to think about an answer to a question, he would lose consciousness and not know what he was trying to say when he came too again.

I was offered a chair to sleep in beside his bed in CCU.

 It was at this point that our GP phoned me to make sure I realized that he was probably not going to survive and I should be prepared for the worst.  Nobody else was willing to say it, but I knew the truth.

 Friday 19 Oct

Friday was a further few steps downhill.  He didn’t know me all the time.  He was taken for a Transesophageal echocardiogram (TOE) to see if there was an infection in the heart valves.  This came back clear so they couldn’t explain the heart failure.

When he came back from the TOE he didn’t know where he was. Disoriented. He tried to remove his IV lines as he thought he was home.  He thought he was in England, then at University.  When asked how he was feeling by one of his Drs his only answer was “I don’t have enough data for that” and he lost consciousness again.

GENERAL MEDICAL had taken over the case, but he remained on CCU.  He was also give a PARS nurse (Patient’s at Risk).  They are the ones that make the call to take people to ICU.  CCU wanted to keep him there because of his heart so the PARS nurse came in every two hours to monitor him.

They did a blood test and found that his Cortisol levels were dangerously low.  He was given IV hydrocortisone.

He showed some improvement within a couple of hours.  I was happy going home for the first time all week.

 Saturday 20 Oct

I arrived in the morning to find him slumped over in bed.  He looked terrible.  His temp hit 40 during the night.  His BP at 7.00 am was BP 84/56.

By 9.30 am it was 91/59.

He was very confused, could not sit up, going down-hill again.  He was given more HC.

 Sunday 21 Oct

I arrived to see a slight improvement. He was able to retain information

He continued to improve over the week, and was still receiving Hydrocortisone.

He was taken off the heart monitor, oxygen etc and moved from CCU to a general Cardiothoracic ward on Tuesday.

 Thursday 25 Oct

Derek was given a ACTH Stress Test on the Thursday morning.  This involved stopping the HC the night before.  They took a blood test at 8 am, then gave him some ACTH.  He started to go down-hill again.  40 minutes later they took more blood, then gave him some Hydrocortisone IV.  He improved almost immediately.

The results came back later that day confirmed Diagnosis of adrenal insufficiency.

We were also told that it looked like he had had a Catastrophic Antiphospholipid event.  He was visited by a Rhumatologist who ran some tests to see if he had Lupus.  She confirmed that he didn’t, and was referring him to another Rhumatologist at our Local Hospital.

 Friday 26 Oct

We were finally told that Derek could go home.  He would be on Hydrocortisone for the rest of his life, he had to be very careful of his APS, and he was to be moved to another ward for the weekend.  It was planned that he would have one last CT of his Adrenal Glands on the Monday morning, then discharged.  2 weeks after being admitted.

He was even allowed to go home for a couple of hours on the Sunday.

He still wasn’t well, his heart rate would not come down under 100 but they were sure it was just the damage from the CAPS event, and it would improve.

We waited for Monday’s CT……………………………………………………….

An Experiment in Independance

Rational behind Experiment

In February we decided to put a claim in with ACC (New Zealand Accident Compensation Corporation) for Derek’s CAPS and subsequent Adrenal Insufficiency as a Treatment Injury.

We received word from ACC in April that they accepted Derek had an Treatment Injury and they would now help out with things we needed help with. This was great news. The first thing we asked for was assistance for Derek to get to work. At the time Derek was getting a lift to work with me, but that meant me leaving the main route, dropping him, and trying to get back in the Peak Flow traffic. This was adding at least ½ an hour to my trip, I was regularly late for work, and Derek was having to leave the house very early.
We were sure that taking the train to work in the winter, was not a good option for Derek as it was too cold, he had a distance to walk both directions, and had to get on and off the train in frost, rain, wind etc because there was no direct train in time for him to get to work.

ACC’s belief was that public transport was the preferred option. This is based on the fact people needing help had normal physical disabilities such as a broken leg, bad back, broken arm. Something that prevented them from driving themselves. If Derek had broken his back, they would adapt his car to give him the freedom he used to have. There was nowhere in the manual that talked about something like Addison’s Disease.

So we decided to do a test for a week to see how Derek would cope taking himself by train to work and from work every day.
Woke up late but fresh. (Had 10/10/5 the previous day)
He reduced his HC to 10/7.5/5 (the max his Endo wanted him taking) and went for a walk twice.
Felt very tired by 7.30. Went to sleep by 9 pm, struggled to stay awake that long.

Woke with alarm. Not as fresh.
Taking train to and from work.
Weather bad, cold, windy, wet.
I received a phone call at 9.45. He had made it to work but sounded very tired. I told him I would call just before 12.00. He was Very cold and had trouble warming up.
Came home and went to bed early.

Woke at 4.00am suffering wind and pain under his ribs. Woke at 6.00am with alarm but more tired than yesterday. Still with wind under ribs. Less energy. Energy reserves reducing daily.
Occupational Health visiting at today.
Missed train and had to wait on cold station. Got very tired waiting.
Came home very cold and tired.
Still up at 8.30 pm but didn’t do anything. Just sat resting.

Woke more tired than yesterday.
Slightly more gastric upset than 28 May. Symptoms worsening by the day. We are only at day 3 and he is not overly well.
10.00am spoke to him on phone. Sounded very tired. Could not totally focus on conversation. speaking slower, pausing for longer to think of what he wanted to say.
Txt from Derek at 11.20 saying he was hanging out for HC. Normally get a reminder and then realises what the time is.

Woke at 4.00 with wind on rolling over. Blood pressure not dangerous but lower than normal.
Again more tired than previous day.
Message from Derek early in day.
” Train was late this morning. On train now. In sun but squatted. Little light headed on standing. Will have some salted nuts when I get to work”
Picked him up from work for appointment so he felt slightly less tired than previous days.
Suffering Reflux at night.
Could not join me to watch our daughter in a show. Went to bed by 8 pm.

Didn’t want to wake up. Had to force himself to take his meds as he was happier sleeping.
This is the danger time as it could have been just as easy to stay asleep for another hour and every hour he delayed his meds would make him more prone to not taking them.
Still has wind under the diaphragm, slowing progressing downwards.
2 hours after meds he would rather not go to work, feeling dull, tired, focus on 1 thing only, disruptions cause total loss of focus and needs time to refocus. Constant yawning.

We visited the Dr at this point to have his state recorded. His blood pressure was down slightly, he was even more tired and would rather just lay down. Constant yawning, more wind.
The Dr agreed that for this winter at least, while Derek tried to recover from all the organ damage sustained during the CAPS, that a Taxi at least to work in the morning would be a good idea.

On leaving the Dr’s surgery Derek Stressed dosed on 20mg to get him back to the correct level.  1 hour later he was showing signs of “waking up”, and feeling a little better.

This was successful in that we found out Derek Cannot take the train to work on a normal daily dose of HC.  And it is not recommended that he keeps his levels of HC high, just to get to work.

We are at a situation where:
Do we push for a Taxi one way
Does Derek take 1 day a week off to recover from taking himself to work for 4 days.
Logic says it would be cheaper for ACC to pay a taxi 1 way 5 days a week, but taking 1 day a week off, with ACC paying sick leave, is an option we will consider putting to them.