The Half-life of Facts

Aside

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is a nice, smooth rate of decay; you can predict that every 45 years, half of this particular sort of knowledge gets outdated.”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 Because you probably know a Dr that is still using that 50% of knowledge that is now outdated.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If Dr’s are not keeping up to date, they may be treating you based on what is now outdated knowledge.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 Based on the half-life of facts, if he finished his training in 1970, by 2010, almost 50% of what he learned is outdated.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.

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The Expert Patient

As far back as 2002 an article was written for the British Medical Journal encouraging patients to become “Expert Patients”.

Clin Med (Lond). 2002 May-Jun;2(3):227-9.
The expert patient: a new approach to chronic disease management for the twenty-first century.   Tattersall RL1.  Author information

Abstract
The expert patient: a new approach to chronic disease management for the twenty-first century, produced by the Department of Health, recommends the introduction of ‘user-led self management’ for chronic diseases to all areas of the NHS by 2007. The premise is that many patients are expert in managing their disease, and this could be used to encourage others to become ‘key decision makers in the treatment process’. Furthermore, these expert patients could ‘contribute their skills and insights for the further improvement of services’. It is hypothesised that self-management programmes could reduce the severity of symptoms and improve confidence, resourcefulness and self-efficacy. It is stressed that this is more than just patient education to improve compliance. Instead there should be ‘a cultural change…so that user-led self management can be fully valued and understood by healthcare professionals’. I point out that these ideas, while welcome, are not particularly new. Achieving the desired culture change will not be easy.

“Expert patient”—dream or nightmare?

BMJ 2004328 doi: https://doi.org/10.1136/bmj.328.7442.723 (Published 25 March 2004)Cite this as: BMJ 2004;328:723:

The concept of a well informed patient is welcome, but a new name is needed

Since the chief medical officer for England first introduced the term expert patient, it has been picked up and used very widely.1 During this time, the notion of the expert patient seems to have been criticised by doctors at least as much as it has been welcomed.2 If one asks lawyers, architects, social workers, or management consultants whether they prefer clients who take an interest in the issues they face and are motivated to work in partnership to achieve successful results, the answer seems obvious. So why does the idea of expert patients provoke such antipathy within the medical profession?

There is even a Training Course across England called the “The Expert Patient Program which states:

“Creative thinking is key for the Expert Patients Programme (EPP), a thriving Community Interest Company that gives people more control over their conditions through cognitive therapy courses.

It has made a particular difference to people with long-term illnesses, such as diabetes, arthritis or respiratory problems, by teaching them how to self manage and monitor their own symptoms. “It’s giving patients more control,” says Renata Drinkwater, Chief Executive (interim). “Courses like these are proven to make a difference. They boost confidence and, in some cases, can delay the onset of other conditions. They also have other benefits, like reducing the amount of times the patient needs to go into hospital or use Accident and Emergency.”

Conclusions
So, will the vision set out by Professor Donaldson and the Expert Patient’s Task Force work? The simple answer is ‘no’, unless there is a sea change in attitudes among patients and, more importantly, healthcare professionals.

What About You?

As someone with a chronic illness, would you consider yourself an “Expert Patient”?  Do you consider your Dr a Good Dr or a Bad Dr.  Is he bad because he has a history of harming patients, or a bad Dr because he doesn’t know your specific condition.

As a patient with a chronic illness you go to your Dr expecting a good level of knowledge, and that they keep their knowledge up to date.

You go to a specialist with the same expectation.

What happens though if the chronic illness you have is rare condition?  If your Dr or Specialist only has 1 patient with your condition, but over 1000 with a more common one.  Do you expect them to keep their knowledge up to date?

The reality is, if you have a rare condition, you can’t and shouldn’t expect them to be as up to date as you want, or to have the knowledge you would like, at least not when you are a new patient.  It’s different if you have had them for 2, 3, 4 or more years.

Instead, what you CAN expect, is to be listened to, to have them acknowledge that it is a learning process for you both, and that if you are able to provide relevant up to date information, they will accept it and not dismiss it because it wasn’t what they learned when they were training 20/30/40 years ago.

Yet this is also not always the case.  So instead you learn what you can about your condition, to fill the gaps and hope you can at least work around your Dr.

In truth, a patient goes to the specialist wanting help to improve their quality of life.  If you are lucky your specialist, knowing you are coming, has done a quick review of your medical notes, a quick read up of the condition.  But with that, they have decided, almost before you walk in the door, what treatments they will or will not offer.  If you ask a question they are not expecting, you take them off guard.  But they don’t want to appear like they don’t know the answer (which they probably don’t) so they either ignore the question, or give some answer they drag from the back blocks of their brain where they remember something they heard once years ago, whether right or wrong.

These are the Dr’s we hear about in the forums.  The ones that “don’t get it”.  We get frequent cries of “I’ve fired my endo.”  “My Dr is an Idiot.” “I can’t find a decent Dr who knows anything.”  And I can see why they say it.  I have heard the horror stories of medical appointments, ED/ER visits, lack of knowledge and but refusal to acknowledge it.  These Dr’s need training in your condition, but they are not getting it.  Why?  Is it lack of time?  Lack of interest?  Or maybe they don’t know where to start?

What would happen if, instead of leaving frustrated, angry, and ready to fire them, you sat down and tried talking to them as equals?

What if you opened up the consultation with a different tact.  If, instead of expecting them to know everything, or worse, you go in expecting to have a bad appointment with them knowing NOTHING,  you went in knowing they didn’t know anything, but were open to learning.

What would happen if you opened up the conversation with something like “I am struggling with my conditions, and with the general lack of knowledge and research available.   I don’t know how you Dr’s keep up to date when there are so many rare conditions out there.  I need to get a better quality of life, perhaps we could learn and work together on how to better manage my health.”

What would your Dr say?  You are not challenging their knowledge, but you are also not putting expectations on them to know it all.   If they take that bit well, perhaps go on with “Do you have any recent research I could read, or a website where I could go to get good up to date research on my condition so I can learn more about how to help myself”.

The worst that could happen is they dismiss you out of hand and go back to their personal ideas. If this happens you have two options, you can get upset and leave the consultation frustrated then go on line to rant.  Or you could ask them straight what their objection to having a knowledgeable patient is.

By now you have nothing to lose
if you have already decided to leave
and find a new Dr?

You might get a surprise.  You MIGHT get a Dr that is willing to work and learn with you.

The Expert Patient may not only need to be an expert in their condition, but also in negotiation.  A Win/Win negotiation is an art.  It requires giving the Dr something they really need (which may be stroking their ego) but also getting what you need, which is  a Dr willing to work with you.

Dr’s won’t learn, if they are not taught and quitting a Dr because he doesn’t already know simply means that the next patient will get what you have, a Dr that has neither the time or interest to learn.  You never know, you might awaken in that Specialist or Dr, a new interest in your rare condition.  Then he won’t be a Dr to run from, but a Dr to run TO.

Biologic Half-Life of Hydrocortisone.  Why is this important?

As Derek lives with Adrenal Insufficiency, we started looking into his steroid doses to work out whether he was on the best dosing schedule possible for him.

In 2016 we had an Endo appointment and asked for a Day Curve to confirm his dosing was right.  It was refused.  So we asked for 1 random cortisol blood test.  This was agreed to, more to keep us quiet than that the endocrinologist was actually looking for something.  What we didn’t tell him was what WE were looking for.

We both believed that his dosing at 3 times a day was leaving him with low cortisol in the middle of the day.  The only way to show this was to have a random cortisol taken right before his second dose of the day was due. His dosing at the time was:

6.00 am – 10mg / 12.00 noon – 7.5 mg / 4.00 pm – 5 mg

The problem with this dosing was that by 2.00 pm every day he was feeling like he wanted to sleep, and felt “blah”.  Some days he was also showing clear signs of low cortisol.

We had seen tables that said that cortisol had a Half Life of 8-12 hours, but that didn’t make sense.  We had also seen other tables that said 2 hours.  That was a big difference.  We needed to know what was going on for Derek.

1 Blood Test Tells It All

On the day we had set for the test Derek took his morning dose as usual at 6am.  We then did the things we normally do on a weekend, very little.   At 11.15 we went to the Lab for the blood draw.  We wanted it as close to his second scheduled dose of the day as possible.

When we got the results it showed what we already believed.  He was under range.  Not just under range for that time of day, but below range completely.  His cortisol was not lasting long enough in his body.  But we had been shown tables that said it had a biologic half-life of 8-12 hours, so how could he be below range in 5.5 hours?

This didn’t make sense even though we knew it was right.  So we started looking into what was meant by biologic half-life.  What we found out is very scary, very concerning, and actually very dangerous.

What did we find?

BIOLOGIC HALF-LIFE CAN BE RUBBISH.  It can be a false number, it shouldn’t be used in the way the below table indicates.

The table here is beening used by many groups/forums and on medical sites including on websites such as Endotxt.org, NCBI, and NADF so it must be right, surely.

Do NOT use this to work out the half life of your Hydrocortisone or Prednisone for dosing!

 

Here it was, the table we got shown constantly.  So Derek started looking further to try and find out where the biologic half-life came from.  The first thing he found was the definition for biological half-life:

 

“Time required by a body to process and eliminate half the amount of a substance introduced into it. Also called biological half-life, biological half time, metabolic half-life, or metabolic half time.”

A number of variations of this table appear on the Internet and use the column heading Duration of Action.  Other variations of this table simply classify the corticosteroids as short-, intermediate- or long-acting.  The same numbers apply no matter what the column is referred to as.

If this column truly is a (biologic) half-life, and we apply the rule of 5 half-lives for complete elimination, then that would mean that Hydrocortisone would be visible in the body for up to roughly 2 days (40 hrs).  Yet when Derek had a blood test before his morning dose, his cortisol was undetectable having had HC at 4pm the night before.  That was 17 hours and no detectable cortisol.  What would happen for the other 20+ hours?  It was clear there was something seriously wrong with this table.  None of this would be consistent with the title Duration of Action.

Also, if that was the case, you would only be prescribed cortisol once a day, not 3x, or more often now, 4x a day.

Where did this Table column come from?

There is no clear ownership of the table that we could find.  It is used, copied, and the copy is referenced, but tracking back to the original hasn’t been possible by us.  We do know it was created before 1980

He became very curious and decided to look further for the source of the information and came across this quote from “Principles of Endocrinology and Metabolism”,3rd edition, 2001, Chapter 78 “Corticosteroid Therapy” by Lloyd Axelrod.

This paper references the definition of:

“The commonly used glucocorticoids are classified as short-acting, intermediate-acting, and long-acting on the basis of the duration of the corticotropin (ACTH) suppression after a single dose, equivalent in anti-inflammatory activity to 50mg of prednisone.”

This is all about suppression of ACTH on high doses of prednisone, nothing to do with the amount of time you will remain within a safe cortisol range when you have Adrenal Insufficiency, yet Dr’s and patients alike use the table to justify twice a day dosing on HC.

So what are the implications of this table?

If someone uses this table to tell you that half-life is 8-12 hours for hydrocortisone they are wrong.

After looking for the original source of the table we discovered that the test was done as above, with a normal healthy person being given 50mg prednisone (approx 200mg HC).  The only thing that can be taken from the original research is that 50mg prednisone will suppress ACTH production for a period of time.  The hydrocortisone, and other drugs, were extrapolated from there (guess work based on poor knowledge).

If you had Primary Adrenal Insufficiency (Addison’s) and Hydrocortisone had a half-life of 8-12 hours, then taking HC every 6 hours would mean constant suppression of ACTH, and you would not have high ACTH after starting the steroid.  But we know this isn’t correct because many with Addison’s still have some part of their Addison’s “Tan” due to raised ACTH.  This is supported by the document below.

Professor Peter Hindmarsh is Professor of Peadiatric Endocrinology at University College London and Consultant in Peadiatric Endocrinology and Diabetes at University College London Hospitals and Great Ormond Street Hospital for Children. He is currently Divisional Clinical Director for Paediatrics at University College London Hospitals.  He also runs a website called CAHISUS.  He has written an article called GETTING CORTISOL REPLACEMENT OPTIMAL IN ADRENAL INSUFFICIENCY

The major goal of cortisol replacement in patients with adrenal insufficiency is to mimic as closely as possible, the normal pattern of cortisol production known as the circadian rhythm. The reason why we try to achieve this, is primarily to minimise side effects of over and under replacement and promote improved overall health. The two key factors are understanding the circadian profile and the pharmacology of hydrocortisone.

In this article Prof Hindmarsh talks about getting optimal dosing, and also looks at the absorption and clearance of people.  What he showed is that there is a very large variation between people. The article is well worth a read.  He also pointed out that the half life of hydrocortisone is a lot shorted than 8-12 hours, in fact, it is more like 70-90 minutes.

Another CAHISUS leaflet states this:

Hydrocortisone has a quick onset and the cortisol peaks to the highest level usually around 2 hours after being taken.  The cortisol obtained from the tablet lasts in the blood circulation between 4-6 hours.

This is a change from an old document by Prof Hindmarsh which included the old figures as above.  Things have changed, research has improved, and there is more knowledge out there.

What Does All This Mean in Steroid Dependant People?

For me?  Gobbledygook.  If you have a clear understanding of Half-Life, Clearance, and metabolism you may follow what is talked about in the studies.  Personally, it confuses the heck out of me.

I do however, understand the concept of half-life.  I first heard about it when watching a movie years ago about a child who had a certain amount of a chemical in his body at point C, and they claimed he had been given the chemical at point A.  It was pointed out that he would have drunk a gallon of the chemical to have the amount still in his system because of the half-life of the chemical.  The chemical had been very bitter and it would not be possible for the child to drink that much.  I became very interested in half-life.  I didn’t think then that it would be so important in Derek’s everyday life.

I had to ask Derek what everything he had found, and what the implications of half-life on hydrocortisone meant in layman’s terms, but even he struggled to explain it in a way that I could be easily understand. One thing he reminded me of is that while your Cortisol is going up, it is also being used.

I have also learned through this research is that even legitimate medical websites actually have misleading or wrong information.

When you are looking at a good way to dose for you, it must be an individual choice, based on how you feel between doses, whether you are willing to take multiple doses a day, and base it on signs and symptoms.  The fact that Derek felt low at the scheduled time of his second dose of the day, and this was supported by a blood test that showed low cortisol, meant we could get the Endo to agree that dosing more frequently was the right option for him.

Now that he is on a better regime of 4 times a day, he functions a little better, he has a low base level of HC, and in the last 6 months, has lost weight without trying, but not in a bad way.

I wish you all luck with this as I understand that there are many Dr’s out there who are not interested in listening to their patients on more dosing throughout the day.  One of the reasons for this is they don’t believe that you will be compliant, even though you are the one asking.

If they think you are asking for something that shouldn’t be done, then show them Prof Hindmarsh’s document above.

What Does YOUR Adrenal Crisis Look Like?

April is Adrenal Insufficiency (Addison’s Disease) Awareness month in many countries of the world so I thought I would look at what an Adrenal Crisis is to those that suffer with Insufficiency.

I don’t mean, what does the medical world consider a crisis, but at what point do those that suffer AI believe they are in crisis, and at what stage do they feel they need medical intervention.

Let’s start with what a medical dictionary says is a CRISIS:

According to one online medical dictionary:

crisis

 [kri´sis] (pl. cri´ses) (L.)

  1. the turning point of a disease for better or worse; especially a sudden change, usually for the better, in the course of an acute disease.
  2. a sudden paroxysmal intensification of symptoms in the course of a disease.
  3. life crisis. – addisonian crisis (adrenal crisis) the symptoms accompanying an acute onset or worsening of addison’s disease: anorexia, vomiting, abdominal pain, apathy, confusion, extreme weakness, and hypotension; if UNTREATED  these progress to shock and then death.

Alterntively the Oxford Concise Medical Dictionary (9 ed.) states:

  1. the turning point of a disease, after which the patient either improves or deteriorates.

Neither of these sources, or any other I can find, state that a medical crisis is only once the patient has entered a state of hypovolemic shock.   In fact, the first one states it only progresses to shock if a Crisis is UNTREATED.  Yet SHOCK is what the Dr’s wait for, or believe to be a crisis, in the ED when an Adrenal Insufficiency patient presents.

Professor Bruno Allolio stated in his document EXTENSIVE EXPERTISE IN ENDOCRINOLOGY – Adrenal crisis

Bruno Allolio1,2,†

Prevention of adrenal crisis

Physiological endogenous glucocorticoid secretion (normal Cortisol production) is highly flexible with rapid adjustments to unexpected needs….

In the foreseeable future (if ever), no replacement therapy will be able to fully mimic this amazing adaptive potential of a healthy HPA axis.  However, many stressors can be anticipated (e.g. elective surgery) and allow to adjust the glucocorticoid dose to the expected need, thereby preventing the occurrence of clinical deterioration and adrenal crisis.  It is important to understand herein the underlying concept.  The recommended dose increase is not intended to mimic the median cortisol increase in healthy subjects during such procedures.  Instead, it is intended to mimic the maximum cortisol increase, which may occur in euadrenal (normal functioning adrenal gland) subjects triggered during these procedures, potentially induced by some unforeseen events (e.g. postoperative bleeding).  Patients with intact adrenal function can respond immediately to such problems with an increase in adrenal cortisol output.  By contrast, in adrenal insufficiency, additional glucocorticoids would only be given when clinical deterioration becomes evident.  Until then, valuable time may have been lost to adjust the hydrocortisone dose to the increased need.  For that reason, dose adjustments aim at the upper limit of the normal variation to cover such unexpected needs.

As infections are the most frequent cause of adrenal crisis, it has been suggested that the patient doubles the hydrocortisone dose if the body temperature increases above 38.0C and triples the dose above 39. 0C.  This dose is maintained as long as the fever persists and rapidly (within 1–2 days) reduced to the standard replacement dose after recovery.  Gastroenteritis poses a particularly high risk, as glucocorticoid availability may be compromised by vomiting and diarrhoea, while the demand is clearly increased.  Thus, early parenteral hydrocortisone (100 mg subcutaneously) is strongly recommended either via self-administration or by a physician.  This dose may need to be repeated and health-care professionals should be involved early for clinical assessment.  Similarly, in severe infection (e.g. pneumonia) with altered cognition, early parenteral hydrocortisone and medical help are warranted.

It has been suggested that patients today are at a greater risk of adrenal crisis, because they have less of a ‘cushion’ of excess circulating cortisol with a standard daily dose of 20 mg hydrocortisone compared with the old-fashioned standard dose of 30 mg hydrocortisone.  However, there is no scientific evidence for such a protective ‘cushion’ effect.  Instead, chronic over-replacement may rather increase the susceptibility to infection and thereby increase the risk of adrenal crisis.

Since his crisis in 2014 from pneumonia, we have learned when Derek is suffering low cortisol vs when he is needing medical assistance.  We have become very good at getting him to stress dose BEFORE he gets too sick.  He has had 3 infections in the last 2 years.  We have given him very high doses of steroids (up to 40mg in one dose over and above the 5 or 10 he would normally take).  What this meant was ignoring the Dr’s that stated that his first clear sign to US of Low Cortisol,

Doing this, and then getting him to a Dr to find out WHY he is so low, has saved us from having to use his emergency injection or taking him to the Emergency Department for urgent medical intervention so far.

That is not to say that one day we will get it wrong, or not be able to stop a crisis from getting to the emergency state and have to call an ambulance, but we are on the winning side at the moment.

It got me thinking what is it that tells an Addisonian (I am including SAI and PAI in this term for ease of typing) what are the first symptoms they have.  What is is for THEM that says, you need a high oral dose, or you need an injection or an ambulance.

Since Derek’s diagnosis in Oct 2012 we have learned a lot about AI.  The biggest thing we have learned is that NO TWO ADDISONIAN’S ARE THE SAME.  They all have different comorbidities, they all have different symptoms, they all have different knowledge levels, and most importantly they all have different support systems in place, from nothing, to fantastic.

All these things impact on how quickly things can go from good to bad to dead.

The final piece to this puzzle is the ability and knowledge of their endocrinologist.

  1. Have they been given the right advice on updosing and stress dosing, the right knowledge on when to use the emergency injection, have they even been prescribed the emergency injection (some don’t believe in giving it).
  2. Do they have confidence in the care they will receive when they call an ambulance or go to their Emergency Department.

These last two things can will make or break an Addisonian.

So this doesn’t tell us what an adrenal crisis actually is.  And this is the hard part.  I asked some of my Addisonian friends what their signs of crisis are.

Each person I asked gave a different answer.  The symptoms were very similar, but presented in a different order, different intensity, and different clusters.

Symptom #1 Symptom #2 Symptoms #3 Symptoms #4
· Feeling really tired    & listless and
generally blah
· Dizzy &
unbalanced
·  nausea
·  Hot and Sweaty
·  raging migraine
·  high BP
·  So tired just want
to sleep
·  seizures
·  Extremely fatigued,
·  lifeless legs
·  Dizziness
·  pain in abdomen,
·  low back and legs.
·  tachycardia
·  mostly high BP,
·  then it can plummet
·  Disorientated
·  Belief that rest will
fix us.
·  severe torso
spasms
· dizzy,
·  start to stagger,
·  ose balance,
·  barely lift feet, legs
feel like heavy jelly,
·  feel shaky,
·  nauseous/dry             reach.
·  Big D,
·  hard to talk, words
just don’t come out
right.
·  Back pain,
·  torso spasms.
·  Extreme fatigue
·  Abdominal pain
·  Gas/wind
·  headache
·  Speech goes
quiet
·  confusion
·  High BP
·  Light headed
·  Wants to sleep
·  Inability to speak
·  Nausea

 

Each one of these lists shows, a sudden paroxysmal intensification of symptoms in the course of a disease.

Yet the Addison’s Disease Self Help Group in the UK, and the National Institute of Diabetes and Digestive and Kidney Diseases have different definitions of a Crisis.

Symptom ADSHG NIDDK
Adrenal crisis Warning signs include:
·    severe nausea
·    headache
·    dizziness
·    extreme weakness
·    chills or fever
·    confusion.
Symptoms of adrenal crisis include
·    sudden, severe pain in the lower back,        abdomen, or legs
·    severe vomiting and diarrhoea
·    dehydration
·    low blood pressure
·    loss of consciousness

 

All the above experience the symptoms from the ADSHG, but they all also inject BEFORE they get to the severe vomiting, diarrhoea, and low blood pressure if they can.

These symptoms are those experienced with an infection.  A gastric bug is a whole different issue.

These 5 people know, from several years of experience, when they can take in more oral meds, vs when they need to inject.

Yet if they went to hospital, they would be told that they are not in crisis as they are not vomiting, their blood pressure is not low, and they are conscious.

If you break your leg, it’s obvious by Xray (mostly) that it’s broken.  If you have a heart attack, they can show it within minutes, stroke – signs and symptoms are clear, Hypo or Hyperglycaemic they test and they know what to do.  Arm sliced open and bleeding?  Dr’s, Nurses, and EMT’s know immediately to stem the flow of blood BEFORE shock sets in.

But when it comes to Adrenal Crisis there is no “test” they can do, many in the medical profession throughout the world don’t recognise it, don’t believe the patient (or their advocate) when they present in crisis, and unfortunately still don’t know how to treat it.

Many also won’t follow written instructions the patients carry, when you give them information.  We have seen people turned away being told “you are not in crisis”, but they clearly are.

Derek was at an after-hours Dr one day as we though he had a throat infection.  He couldn’t feel much pain as the infection was on the left side of his throat, which is numb from CAPS, and he can’t swallow on that side.  During the examination the Dr said “I don’t believe you need an emergency injection.”  My immediate response was “No, he is not in crisis.  IF we thought he was in crisis we wouldn’t be at After-Hours, we would be at Hospital.”

The Dr acknowledged we obviously knew what we were doing.

Another time we said to the Emergency Room Dr that Derek’s AI was under control, we were not there for that, we were there for another reason.  The Dr was happy with that and dealt with the issue we were there for.

One time that he was dropping fast into crisis, couldn’t keep her eyes open, couldn’t answer any more than yes/no answers, was in a lot of abdominal pain, was nauseous.  Yet the Dr had no idea, even when I pulled out all Derek’s medication and said I was giving him 20mg, the Dr’s question was “Do you really think he needs that much.”  And left his cubical Um, yes, he needs a lot more than that.

They believed us quite willingly when we said he was not in crisis, but when we knew he was heading that way, they didn’t believe us.  The 20mg didn’t do anything.  After finding an old letter a senior Dr from that ED had written, and giving it to a nurse, they finally gave him 100mg and admitted him.

So what is an Adrenal Crisis?

The image here shows THREE pathways to death from adrenal crisis.

One friend spent years having seizures during adrenal crisis.  Yet she was frequently told seizures were NOT part of the adrenal crisis pathway (Far Left Pathway, bottom symptom).

Others have been told, you can only be in crisis if you are vomiting (ONLY middle pathway mentions vomiting).

 

With the 3 pathways in adrenal crisis, and you can be suffering a mixture of symptoms from each.  You do not have to follow only one pathway.  Most medical books only talk about the middle pathway, and don’t look at the two outside ones.

Derek vomited a total of 4 times during his adrenal crisis and multi organ failure yet he was sick/near death for 3 weeks.  He did not vomit at all while in hospital.

If each Adrenal Insufficient patient presents differently, how are the medical world supposed to know what is wrong.

One size does not fit all.  And THAT is a serious problem, with no easy answer.  If someone seeks medical help for anything and they have Adrenal Crisis, they need that checked first.  The Dr need to ask the patient, do you think you need/have you taken emergency medication.

Most patients know if their oral steroids aren’t working.

Do you know YOUR signs?

Does your support person?

 

A Drug Seeking Nut Job?

This story is fictional, but is based on stories of people that I have talked to.

Are you a drug seeking nut job? Lifesaving Steriods ARE NOT recreational drugs!

Are you a drug seeking nut job?
Life saving Steriods ARE NOT recreational drugs!

Sally woke suddenly.  She could feel the headache.  She knew what it meant.  She had had these before.
She reached on her night stand for her drugs.  Taking 4 tablets, she put them in her mouth, took a mouth full of water and rolled over to try and go back to sleep.
She knew that getting this headache was going to mean a bad day ahead. 
Sally looked at her clock.  It was only 3am.  If she could sleep till 7 and then take more drugs she would be fine she hoped. 
She rolled over, praying the drugs would kick in soon.  Wishing the headache would go away, and hoping the rest would not come.  Deep down she knew it would, she knew she would spend the next two days fighting it off.  There was no way Sally was going to go to THAT place again.
In a town a thousand miles from Sally, Dave woke.  He knew that feeling. That urgency.  He also knew what he had to do.  He rolled over and looked at the clock.  It was 5.10 in the morning.  Dam, hopefully he could fix this.
He leant over to his bedside cabinet to get some tablets out of his bedside container.  He took a drink.  As he sipped his water he felt his wife stir beside him.  He didn’t want to wake her because he knew it would worry her.
After he had swallowed the tablets, he gently sat up in bed.  He didn’t have much time, but he knew, if he took it easy and didn’t try to rush this, he would make it.
He stood up and, leaning on the edge of the bed he walked to the end and around the foot of the bed.  Not much further.  He would make it. 
Oh crap, he had to move faster or disaster would strike.
He got to the bathroom and sat on the toilet.  The relief of making it was great.  There had been times when he hadn’t.
He sat, thinking about the last 2 minutes.  If the tablets stayed down for an hour, just an hour, then he knew he would be ok. 
Then it hit.  That all too familiar feeling of nausea.  Time was not on his side.
Back in Sally’s bedroom she lay quiet.  Then it struck.  She looked at the clock and did a mental calculation.  3.30.  Bugger, it was only half an hour.  Not long enough.  And with that though she leaned over the side of the bed and threw up.
Deep down she knew what she had to do, but she didn’t think it was that bad.  She grabbed her phone, there should be someone in the world awake.  “If I can just talk to them” she thought, they would tell her there was nothing really wrong, and she could just stay quiet for the day.
She opened her phone, swiped her pattern, and hit the facebook icon.
“I think I need help.  Is anyone there?”
“yes, what’s wrong” came the typed response.
“I woke up with a headache half an hour ago.  I took 20mg, but I have just thrown them up.”
“Do you have an emergency injection?”  Sally was focusing hard on what the person talking to her was saying but she was having trouble reading the words properly.  She couldn’t work out who was talking, and it didn’t matter.  She was just grateful someone was there to answer her.
“No, they won’t give me one.”
“How long ago did you take the 20?”
“Abot hald an hour.”  Sally was having trouble typing.
With that Sally dropped the phone and sped to the bathroom.  She just managed to get her head in the bowl of the toilet before she threw up again.
Dave was sitting on the toilet of his ensuite wondering if he was going to need to throw up, or if he could get back to bed.
He stood up.  The room moved around him as he fell against the wall.  This was going to be a good one.
He got a bowl from the bathroom cabinet where Jane, his wife had insisted they keep one, and took it back to bed.
So far so good, the vomiting wasn’t starting, and there wasn’t the urgency of the toilet needs.
He half lay, half sat up in bed.
“Are you ok?” Jane rolled over to face him.
“Yes, I don’t feel great, but I will be ok.”  He lied.
“Have you taken any more HC?”
“Yes, I just took 10mg.”
“Well make sure you still take your waking dose in half an hour.”  And with that Jane rolled over.  She knew Dave would be OK as long as he had taken extra meds.  He hadn’t thrown up, so there was no need to panic.
She also knew she would not bet any more sleep tonight as she would be listening for all the signs.
“Sally, how are you?”  Another group member had joined the conversation.
“I’ve just thrown up again.”
“You need to go to ER.”  The new group member said it.  Sara didn’t want to read it.
“I can’t.  I know what will happen.  They will leave me waiting for hours, and will ignore me.  If I bed for steroids they will say I am drug seeking.  They always do.”
“Sally, do you have someone who can advocate for you?”
“No, I will have to get a cab and go alone.  But I can’t go.  They won’t treat me.  An idiot Dr wrote into my records that I had Munchausen’s!”
“Shit. No wonder you are scared to go.  Do you have any evidence on you that you can take, to prove you don’t have it, but that you have Addison’s?”
“I had doctor who knew my issues who wrote a letter I keep in the file !…He stated not only do I not have Munchausen’s, I have all the positive test results proving my diagnoses! I cannot tell you how many times I’ve had to deal with poorly trained er drs and nurses who simply thought the was in my head, or that I was anxious!”  Sally was remembering the letter she had got written 3 months before.  Would it help?
“Please take that, get a cab, or call an ambulance, and get to hospital.  You are going into crisis.”
 Dave came back to bed,  He had just had a second trip to the toilet, this time he had gone at both ends at once.  It was 6am and he felt very dizzy, new he would continue to throw up.
“Can you take me to hospital.  I need fluids, and to find out why I am so sick.”
Jane was already dressed.  “Where’s your bag, I need to inject you before we go”.
She got out the solu cortef and began drawing up the meds.  “Don’t worry about getting dressed, just put a dressing gown on.”
“Sit here while I get everything ready.  Do you think you will be ok with the injection? “
“Yes, just get me to hospital.”
With that Dave lay down and closed his eyes.  Jane took the injection and jabbed his leg, slowly injecting the steroids, praying it would keep him ok till he got to hospital.
Sally picked up the phone to call a cab but realised she just didn’t have the energy.  She needed to go to the bathroom again.
It seemed to be a long way this time.  The apartment was small, but she could hardly move.  Leaning against the wall she slowly made her way.
All of a sudden the walls began spinning, the floor started moving out from under her feet and she couldn’t stand.
It all seemed to be happening to someone else.  The pain was intense, it was like a vice grip was around her chest.  She started having trouble breathing.
“Dear God, please let Judith stop in on her way to work, and find me.”  All Sally could think was that Judith, her sister, was due to call in in an hour, to drop off some paperwork.
Sally lay there, wishing she had had the courage to go to ER, but knowing that there would have been no point, as they never believed her anyway.  She slowly felt herself going to sleep on the cold bathroom floor.
Sally’s life slowly slipped from her body.  It would later be found that she had had a heart attack due to extremely high levels of potassium, and dangerously low sodium.  Unfortunately, this was a very text book adrenal crisis, however, the Dr’s would fail Sally again, as the wrote the cause of death on her death certificate as “Myocardial Infarction”.   There would be no mention of the cause being an Adrenal Crisis.
Dave and Jane arrived at the emergency room.  Jane went to check Dave in and struck a nurse who clearly had no idea what an Adrenal Crisis was.    She knew what was coming.  She knew that this nurse thought she was being over dramatic.
“Please calm down ma’am, he’s not dying” was the stock standard response the Triage nurse gave her when she tried explaining the crisis.
This didn’t surprise Jane as she had heard it all before, the last one was  “modern medicine is just failing you. I’m sorry but go home and both of you get some rest “.
She knew what she had to do, and did it.  Right in the middle of ER she threw a fit.  She demanded a Dr look at him immediately, or the nurse had to sign the letter she was holding, stating she was refusing to treat her husbands adrenal crisis as a medical emergency.
She had used this letter once before, and just like that time, it had the desired effect.
Dave was taken to a treatment area, given IV fluids, and asked if he needed more steroids.
“He will need at least two bags of fluids, and another 100mg solu cortef in about 4 hours.”  Great, I will chart it came the response from the Dr.
He had never seen an adrenal crisis, but he had been told by the nurse that this woman was serious, was very knowledgeable about her husbands condition, and was not going to take no for an answer.
He had met people like this before.  People with a life threatening chronic illness.  They knew more than the Dr’s about their conditions, and they knew what treatment they needed.  He loved patients like this because he didn’t have to guess, and get it wrong.
Jane was happy.  “Finally, a Dr that listens to his patients, and gets chronic illness.”  She said this to Dave after the Dr left the room.
Dave left the hospital 8 hours later, having had anti nausea meds, 300mg Solu Cortef, and 2 bags of fluids.  He also had a script for antibiotics for the infection that was brewing (according to his blood tests).  They didn’t know where the infection was, but the Dr didn’t want to take chances.
The Dr had seen someone die once during his training because his supervisor hadn’t listened to the chronically ill patient, had disbelieved what was required, and provided a course of treatment that was wrong.  That was never going to happen again on his watch.
Both times he was in crisis and I pretty much had to throw a fit to get him treated.
________________

The people in this short story are not real.  But the stories of their treatment are.  Also the fact you can have a heart attack or stroke because of an adrenal crisis are is real.

There are also stories of people being refused steroids because they are drug seeking, but offered barbiturate pain killers, so they will hurry up and leave the ED.  They are then told they are depressed, anxious, or just nuts, if they refuse the pain medication and ask for life saving steroids instead.

For many, telling a Dr you need steroids makes you a drug seeker.  It is all to common.

Many people, mostly women, before diagnosis, are told they are neurotic, psychotic, depressed, suffering anxiety and in one case I have heard of, been sectioned.

Adrenal Insufficiency can alter the thoughts, and mental capacity of the sufferer.  They don’t always make sense, they don’t always understand what is being said.  Dr’s in ED’s don’t have time to think, they only have time to act on what they see.  And they see a drug seeking nut job, not someone who is critically ill.

­Once these labels are on your medical file, it is extremely hard to take it off.  If you live in a small town and you get the same ambulance officers each time, you will find their treatment the same.  And if you have family that also believe this, it makes it harder to get the right treatment.

There are many people who will not go to hospital when in adrenal crisis because they are so tired of being labled, and left.

I don’t have an answer for anyone.  It is a change that needs to come from the Medical side, not the patients side.

Bruno Allolio, is Professor of Medicine at the University of Würzburg comments:

“As most physicians very rarely encounter an adrenal crisis, they frequently fail to act adequately. There are numerous reports from our patients and others that physicians ignored emergency cards or failed to give parenteral hydrocortisone despite the patient presenting the emergency kit. Thus, I occasionally have given my patients a written text to be signed by any such future emergency physician. It states that the patient has communicated the presence of impending crisis, has shown the emergency card, and the emergency kit. By signature, the physician would thus attest that this evidence was presented, thereby documenting malpractice, if refusing to administer glucocorticoids. I reasoned that asking for the signature would greatly facilitate hydrocortisone administration.

As a consequence of these frequently encountered problems, the essential principle of crisis prevention can be stated as follows:

The well-informed patient (or his/her relative) guides the poorly informed health-care professional!“
If you are a Dr and reading my blog, think about how many patients have you had where you have decided the symptom they have must be anxiety or depression, because they are not presenting in the normal way.

If you have a patient present with a “pseudo seizure” how often do you decide that it means a seizure caused by a mental problem, rather than “caused by something other than an electrical misfiring of the brain, but NOT a mental issue?”

Pseudo seizures have been suffered by a number of AI patients who, because of them, are treated as if they are faking their symptoms.  They are not, there simply isn’t any medical research into why these seizures happen.

Chronically Ill patients should never be afraid to go to hospital (where they should feel safe) because of seriously poor treatment by the medical profession.

According to www.ncbi.nlm.nih.gov

Which drugs do people seek?

Benzodiazepines and opioids are the two most common classes associated with drug-seeking behaviour. Opioids commonly misused in Australia include oxycodone, fentanyl, codeine and morphine.

Psychotropic drugs producing stimulant effects, euphoria, sedation or hallucinatory effects are sometimes sought. These include the newer antipsychotics quetiapine and olanzapine, and stimulants such as dexamphetamine and methylphenidate.2 Anabolic steroids are also increasingly misused.

Anabolic steroids are NOT the steroids needed in adrenal crisis, however, as soon as you say steroids, it is assumed this is what you are asking for, and therefore, you must be drug seeking.

International Travel with a Chronic Illness – Part 2

Australian Triip – Day 1-3

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

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

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

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

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

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

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

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

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

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

We were ready for our trip.

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

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

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

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

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

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

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

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

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

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

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

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

Fast Track to a Holiday

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“I don’t know.   Who?”

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

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

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

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

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

Let the Games Begin

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

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

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

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

des-place

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

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

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

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

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

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

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

Read about “The Domino Effect” here.

the Domino Effect

The Domino Effect

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

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

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

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

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

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

The Dr came out to reception “Derek?”

We got up and followed her into her consulting rooms.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Medical Incompetence is International

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

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

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

“So what is this number?”

“I have no idea.”

“Date of birth.  Is it ######”

“No.”

“Phone Number:  Is it ########”

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

“Dale ####”.

“That’s not Dereks form.”

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

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

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

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

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

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

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

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

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

jubblyelainejo

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

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

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

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

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

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

 

 

 

 

 

 

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

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

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

After saying a gre

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

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

The Domino Effect

How do you get 7 Adrenal Insufficiency Patients
in the same room at once?

Some may find the video included here upsetting.  I make no apology.  Deb herself wants awareness of this.

One of the main parts of Derek and my trip to Australia was to meet Des Rolph and Wendy Lau.  Wendy had come over for a second time from Hong Kong as she is struggling with her health, and the hospital she attends in Hong Kong, The Princess Margaret Hospital, is very slowly killing her with dangerous treatment, 3rd world conditions, and a serious lack of knowledge. (Read about her experiences here).

des-place

Hey, Hey, the Gangs all here. Michelle, Des and Wendy,  Jo & Derek

As we were going to be staying at Des’ house on the Sunshine Coast, they decided it was a good time to have a get together.  Derek had never met anyone else with Adrenal Insufficiency.  This was the perfect time to fix that.

There were going to be 7 people with Adrenal Insufficiency in the same room at the same time, and it wasn’t for a conference, it was for a get together and a lunch.   It was also to be the inaugural meeting of the Adrenal Insufficiency Australia & New Zealand Association (AIANZA).

It was all very exciting.  It was a lunch meeting.   There were crowns, and gifts for all.

giftsforall

All the lovely gifts provided for the Adrenal Insufficiency Sufferers.

Derek and I had arrived on the Saturday morning, having flown into Brisbane, and driven straight up.

On the Sunday morning we had something to do so after breakfast we went out for a short time. (explained in my second trip post).

When we got home we found all preparations well advanced.  Michelle was cooking and preparing food, Des was doing a lovely job of putting makeup on Wendy, and Derek and I just had to get ready.

I barely had time to start getting ready, and let the girls know the result of our excursion when the next guest arrived.

It was Anne and her husband Keith.  Anne has only been diagnosed for coming up a year.  She has Primary Adrenal Insufficiency, but is well controlled.  She has learned quickly, to up dose, to stress dose and to listen to her body.  However, Anne does not have an emergency injection kit as she is one of the many (too many) patients who have been told “you live close enough to a hospital, and ambulances have solu-cortef, so you don’t need it”.  To date Anne has never needed her kit, but she is about to travel outside Australia on holiday, and one of the aims of the day was to explain to Anne the importance of getting an emergency kit.

Last to arrive was Deb Salmon Brown.  Deb has had Addison’s for 8 years, but it has not been well controlled, in the main, because of poor endocrinologist, and (we now believe) because of poor absorption of her oral hydrocortisone.

Deb has a history of bad treatment by medical professionals which means she puts off going to the Dr, and will treat herself at home.  This is quite common amongst those with Adrenal Insufficiency as it is a little known, and even less understood disease, even amongst endocrinologist (those that are supposed to know all about it).

I am going to use two terms here from now on:

Pre-Crisis: When you can feel your body crashing, you have early signs of crisis which will include fatigue to a point where you have to sit or lay down and maybe nausea, weakness, brain fog, sometimes slurred speech, back pain, leg and hip pain and the biggy for many, HIGH BLOOD PRESSURE.

Crisis: Depending on the person concerned, you will have some, or all of the normal signs and symptoms of a “True Adrenal Crisis”, which will include unbalanced sodium and potassium, an unconscious appearance (although some can still hear you in this state), and the clear signs and symptoms of hypovolemic shock.  This state includes a dangerous drop in BP which can, and does cause other problems such as stroke, heart attack etc.

It is my belief (and other are in agreement) that everyone should be treated as a medical emergency at the Pre-Crisis stage.  This blog post will show you why.

Back to our story.

Debs looked ok to me when she arrived because I didn’t know her.  Des tells me she was feeling dizzy and sweating, but it was a hot day and she had just driven.

She was happy to meet others who “got it”.  She had also driven herself up from her place to Des’ home.  This was something Deb, Des, Michelle, and Ann (our last guest to be introduced) can do easily.  Derek can not drive.

And so it begins

There were 6 AI Patients Sitting in a room
6 AI patients sitting in a room
But if 1 AI patient should accidentally swoon
There are 5 AI patients laying in a room.

The Domino’s are all in a line.

Deb is sitting on the couch, Des is talking to her.  The rest of us are getting things ready for the day. Some of what happens next is how I witnessed it, some is taken from accounts from Des, some is taken directly from video captured.

My recollection of events is, as we are all chatting, Des and Deb went and sat on the couch and I heard Deb say she wasn’t feeling well.  She appeared to be becoming upset.  I heard her say she felt sick.

Des’ recollection:

When she arrived she was already shaky and sweating. Within just a few minutes she told me that she was starting to feel unwell and then she collapsed. I asked her if she wanted to come and lie down on my bed but she couldn’t move and fell into the sofa. It all happened very quickly.

Before I knew what was happening Deb had collapsed onto the couch and was shaking uncontrollably.  Des was calling for an emergency injection and we all kicked into action.

I looked around but didn’t know which bag was Debs.

Wendy was acting as well.  She was grabbing her solu-cortef and saline solution.  Wendy was also shaking.

I took the solu-cortef off Wendy and popped the lid on the vial.  As I did that, Wendy opened the Saline bottle.  I then found a syringe and needle being handed to be.

I put the needle on the end of the syringe and knew I had to draw up the saline solution, but I had two problems.  When practicing with the solu-cortef at home, it was an act o vile so it was all pre-measured in the container and I didn’t have to draw up anything, I simply mixed it and drew all the solution.

This was different.  I asked how much fluid I needed and was told 20mls.  Great, except I didn’t have my glasses on.

I grabbed the nearest pair I could find.  I don’t know who’s they were, but they worked.  I could see clearly where I had to draw the fluid up to.  I then had to insert through the top of the solu-cortef, inject the saline, mix the powder until clear, re draw up the now mixed liquid, change the needle (it was blunt and bent at this point) and then inject a stranger with medication that was going to help her.

I went to the couch and, standing behind it, I injected Deb in the arm.

Deb’s recollection of this part of the day was:

I arrived feeling fatigued and also with “nervous but excited” stress. Hugged everyone, said hello, handed out gifts then sat down with cup of tea.
Derek launched into his medical history which was a bit overwhelming for me and I started to feel generally unwell. Hot & clammy, nauseous, pain in tummy and a bit shaky. Started feeling very light headed.
Des walked past, I grabbed her arm, looked at her and said I’m going to pass out, then I did!! 5 secs max.

 

We then put a O2 monitor on her hand, found a BP cuff.  We couldn’t get an oxygen level from Debs finger so I made a comment that they looked so nice they were possibly fake, and therefore blocking the signal (they looked beautiful, well manicured and painted).

We tried her toe with that monitor, then Derek suggested we try his.  This one worked.  Her O2 was fine, we then took her BP and it was quite high, around 176/102.

Slowly, after what seemed like an age, Deb began to come around.  I looked around the room and Wendy, Des and Michelle were all shaking but they were also busy doing what needed to be done, taking care of their own and each others needs, while also taking care of Deb.   Derek was now just sitting watching.  I can’t remember, but I think Ann was helping out.

I turned to Wendy and asked her to hold her hands out in front of her.  They were shaking badly.  Des told her to do a subcutaneous injection.  Des then did her own bolus due to the stress in the room.

I told Derek to up dose.  I looked at Michelle and handed her the tablets.

Everyone was stress dosing.  Everyone could feel the tension and stress in the room.

Once Debs had come round she told us where she had an emergency letter, and where her emergency injection kit was. We began to relax a little, and settle Debs down when it began again.  She also informed me that she heard my comment about her lovely nails, and they were real.  This confirmed that, like most, Debs hearing is the last thing to go when collapsing.

“She’s going again”.  I heard the call from someone.  I turned to see Deb collapsed on the couch again.

Wendy said Deb had wanted one of these attacks filmed, so Derek, while sitting in his chair, got his phone out and began to record the video.  Debs as asked that this be made public to show what an adrenal pre-crisis can look like as her’s are not text-book.

Knowing that Deb was aware during the first attack, I asked her if she was capable of indicating to me if she wanted another injection.  She managed to grunt confirmation.

Des found her phone headed off to call an ambulance.

As the second episode began, Wendy asked Derek, was feeling calm, could he film the collapse this time.  He was tired from doing things during the first attack to support me and what I needed.

Deb had wanted these episodes filmed because she was not believed by the medical profession and she was desperate for answers.

She has since given permission for these videos to be made public to try to help people.

I moved away to draw up a second injection.  This time it was a quick process as we had Deb’s acto vile.  While I was drawing up the injection Ann moved over to the couch to be with Deb.

Everyone was again doing what needed to be done.  There was no panic in the room, just calm decisions as to who was going to do what.

Des tried to call Simon (Deb’s husband) and Chris (Des’ husband) who  were playing golf together while Michelle stayed on the phone with the ambulance service.

Anne and I stayed with Deb then once the violent shaking stopped and Debs started coming round again I went outside to wait for the ambulance.

It took 15 minutes for the ambulance to arrive and as I was standing in the street I could hear from the house that Deb was again going into a violent shaking episode.  This time they decided not to give her an injection as 200 should have been enough.

Deb was clearly distressed by now because she knew that the treatment she would get from the ambulance service and the hospital was going to be substandard.

Her recollection of this part of the event:

I was aware what was happening most of the time, aware I was going down hill fast but really couldn’t respond. Required enormous effort to grunt to you I needed more HC. I knew I did and was terrified I wouldn’t get it.
When I continued to pass out and seize when ambos were there I knew I would need a calmative to stop them and just quiet my system down because it was so hyper sensitive. So was glad when Simon arrived and filled them in.
I have now written on my Ambo Directive that Midazolam needs to be given after HC if seizures don’t settle.
The overwhelming emotion the whole time is FEAR. Fear that I won’t get enough HC, fear that ambos won’t know what to do, fear of going to hospital, fear of how I’m going to be treated.
Afterwards, it leaves me TOTALLY exhausted!! All that physical energy chewing up cortisol leaves me feeling like I’ve run a marathon or two!!

Debs had more attacks in the 15 minutes it took for the ambulance to arrive.

By the time the ambulance had arrived Deb was having another attack, there was an air of “something” in the room.  The ambulance was carrying 2 paramedics.  Just as they were getting out of the ambulance a car pulled up.  Another Paramedic (an advanced paramedic) arrived with another person.

I looked at the 4th person.  He had a Life Flight uniform on, and the word Doctor on his back but he was just riding along, and not on duty.

We all stood back as Des explained Deb’s history, and what had happened.  You could hear the fatigue in her voice.   Wendy was also starting to show signs of heading down herself.

Michelle sat in a corner on a chair.  She was clearly suffering.  Des, Wendy and Michelle were all shaking.  Derek was standing slightly back with Ann and Keith.

As I reached for Michelle’s HC bottle, which she had asked for, I looked at him.  “Are you OK?”  “I have a headache” he was looking at me, but he was talking slightly slower than normal.  You could see he was heading down hill.   I told him to take 20mg of HC and sit down.  I know Des and Wendy had been up-dosing and I had already given Michelle some of her HC.

Once I got Derek to take his 20 I looked at Michelle.  “Do you want some more as well?”

“Yes please”.  She was talking clearly but a little softer, slower.  She knew what she needed.   I handed her the tablet bottle and went to get another drink.

By this time Des had also noticed that Michelle had started going down hill and had given her an electrolyte drink to go with the first high dose of HC tablets.  Michelle sat there shaking so much she could hardly drink.  Des  started getting a subcutaneous injection ready.  As I turned to Michelle I heard the call.  “Michelle’s gone”.

In less than two minutes she had gone from talking, feeling unwell and needing tablets to needing something stronger.   She couldn’t speak, couldn’t answer questions, couldn’t move. Her eyes were closed.  She was in Pre-Crisis.  If we didn’t act fast she would be in a full blown crisis, otherwise presenting as hypovolemic shock.

I moved back to Michelle and called to the paramedics “We have another one down.”

“Just do what you would normally do.” Came the response from the Advanced Paramedic.

“We normally inject then call an ambulance” I said as I watched Des reach for Michelle’s emergency kit.

I looked up to see if Des was capable of giving Michelle her injection.  Des began to open the box the act o vile comes in.  Des’ hands were shaking so much she couldn’t open the box.  I moved towards her and reached for the solu-cortef and I took it off her.  She then began to open the needle and syringe packages.  Again, too much shaking.

I took everything off her, opened the solu-cortef, drew up the injection and went to Michelle.  She was now completely out of it.

As all this was happening I heard the Advanced Paramedic calling for a second ambulance. One of the two paramedics working on Deb then turned his attention to Des.  He did her blood pressure, which was very high, even for her.   He then put leads on Michelle to check her other readings, including a heart trace.

Simon had arrived and this point.  The paramedics had got Deb stable enough to take her to hospital.  Simon was going to go with Deb because Des needed to go with Michelle.

Neither of these crisis went according to the book.  They were both suffering from HIGH BP, neither vomited until AFTER the injection.  Deb was wheeled to the ambulance in a chair.

I looked around the room.  Everyone had been updosing for the lunch, and then taking a lot extra now.

Michelle had gone down hill to full pre-crisis, and was about to be ambulanced to hospital.  Derek laid himself down on the lounger that was off to the side to try to get rid of the really bad headache he had suddenly developed.  Des had been upping her dose through her adrenal pump, and injected subcutaneously.  Wendy was subcutaneously taking extra steroid (she was already on a high dose through her pump) and Ann was preparing lunch but had also taken extra steroids.  The Domino’s were very procariously balanced and more could tumble at any minute.

I turned to the senior paramedic and said “Next meeting, we will book a bus so they can all go at once.”

His response was “We don’t normally do a bus, but let us know in advance and we will see what we can do.”  followed by a laugh.  He knew this was a rare event, but one that could easily happen again.

We still did not have the seventh Adrenal Insufficient patient in the room.

As the first team was preparing to leave the second ambulance crew arrived.  3 paramedics came in.  They had a quick hand off from the first team and the first team, along with Deb and Simon, left for the hospital.

They moved Michelle to the couch and suddenly she became ill, saying she needed to vomit, which she promptly did.

michelle

Michelle being stabalised before being taken off in the ambulance.

At this point everyone was on very high doses of steroid, and struggling.  I looked around, wondering who was going to be next.

Des was going to the hospital with Michelle so I went outside with her and the paramedics, to get Michelle in the ambulance.

As we were talking to the senior paramedic I asked which hospital Michelle would go to.

“I was just wondering that.  I was trying to decide if we should divide and conquer, or keep them together for support.”

“Keep them together so we can keep an eye on Deb.” I responded.  “They all need support.”

“That’s what I was thinking” he said.  He then got on the phone to see which hospital Deb was being taken to.

“Your friend is going to Nambour Hospital.  Noosa refused to take her.  But we have to take Michelle to Noosa.  The Dr at Noosa is great, they will take care of her.”

Divide and conquer, or high your mistakes.  I saw the ambulance off, with Des and Michelle and went back inside.

Wendy was laying down, Derek was laying down, Anne was in the kitchen preparing lunch.

Derek had just taken his BP.   It was the highest I had ever seen it at 170/106.  He didn’t have the shaking the others had, but I put that down to the fact he hadn’t had an adrenaline rush first as his medulla is also destroyed.  That didn’t stop his body going into a stress response, it simply meant it happened quietly, hidden, and slowly.  He had time to take oral HC to reduce the effects.

Each of the 6 Addisonian’s were suffering in their own way.

Then the 7th arrived.  Renee, her fiancée and two of their children arrived just after the ambulances had left.  I invited them in to Des’ home and made sure they all knew each other.  We were now down to 4 Addisonian’s in the room.

Wendy was in touch with the two patients taken off to hospital so over the next couple of hours we had reports come in from both Deb and Michelle about their treatment.

The treatment received were exact opposites of each other.

Deb’s Experience at
Nambour General Hospital
Michelle’s Experience at
Noosa Hospital
Debbie arrived in ED at Nambour
She was attended by a nurse.
They checked her history.
She waited for several hours.
She was discharged.
No bloods.
No exam.
No extra fluids.
NOTHING!
Discharge within 3 hours.
Handed over by Paramedics with the information “You have two very experienced patients here, listen to them.”
Dr asked what they needed.
Extra Solu-cortef.
Another bag of fluids
CBC’s, electrolytes and several other bloods.
Full examination.
A cute Dr (always an added bonus).
Observation for several hours to ensure she was stable before finally being released.

Anne produced lunch just after Renee and her family arrived so they stayed for lunch as we had a “debrief” of the mornings events.  The were not able to stay long as the had somewhere else to be.  Renee and family were leaving just as Deb and Simon arrived back from the Hospital.

Things of Note from the Day of the Inaugural Crisis Meeting

  1. Once Deb went down, the stress in the house went up.
  2. ALL the Adrenal Insufficiency patients in the house suffered HIGH BP.
  3. Everyone had up-dosed/stress dosed before the event, but because of the stress of witnessing a pre-crisis, it was not enough.
  4. Everyone stress dosed trying to prevent a pre-crisis.
  5. Treatment received by those in pre-crisis was dependant on several things.
    1. Previous history with the hospital you go to.
    2. Attitude of the Dr’s treating you.
    3. Knowledge of your condition.
    4. Having a strong, knowledgable advocate.
  6. You can go down quickly so everyone needs an emergency injection kit.

How did this end:

Firstly, we never did get 7 Adrenal Insufficiency patients in the same room, at the same time.

A week after the meeting, having video of the crisis Deb had, Des contacted her General Practitioner and organised an appointment for Deb.  Deb is currently in hospital receiving the treatment she has been desperate to get for the last 8 years.

Michelle is off having a weekend with her cake decorating ladies.

Des is very tired, but keeping busy helping others while managing her own conditions.  (Something she has only been able to do since getting an adrenal pump).

Wendy is visiting Deb in hospital, and trying to relax while waiting to return again to the substandard care she receives in Hong Kong (while hoping to be able to move to a new hospital).

Derek and I are home now, and Derek is showing signs of the trip being a little too much for him.  He is still up-dosing.

Ann was tired for a day or two, but has come back well.  We are still waiting to hear if she has managed to get an emergency injection kit.

Why did we not hesitate to inject?

Some may think we were too quick to inject 100mg (200mg in Deb’s case) of hydrocortisone.  That Deb was not in a full crisis (vomiting uncontrollably, diarreha, critically low blood pressure, or a coma.)

Here is a very brief description of what can happen if you don’t or can’t inject immediately you realise you are in Pre-Crisis.

Brenda Berry:  My daughter, Katie was diagnosed at 19, 6 years ago after many trips to the ER dismissed her symptoms. After all, she looked healthy and “tan” all while vomiting. It took a violent adrenal failure and near death to FINALLY be diagnosed. The first four years and 7 endocrinologists resulted in 45+ hospital stays due to crises. Every endocrinologist had her on too low of dosing, wrong timing and all dismissed the need for an emergency injection kit. She was told not to be dramatic, she didn’t live in a 3rd world country and lived near ERs. She finally met an RN in an ER one night who also was an Addison’s patient. She told Katie about her dosing to mimic the circadian rhythm and dosing up to bedtime, with hydrocortisone, florinef and prednisone being the bedtime dose. No mention of an injection kit. It really wasn’t on her mind as it had been dismissed so often. Katie tried this and it seemed to be a life changer.
Her periods were her only real crisis triggers that occasionally still sent her to the ER. She was in the process of meeting with specialists to try to stop her periods. Sadly, before that could happen on 1/4/2016 her period came late in the evening and triggered a crisis with vomiting. She tried to manage on her own with hydration and anti nausea meds.
It’s thought that she must have had several strokes rendering her unable to ask for help and by 6:39 am we heard a crash in her room. She’d collapsed in her bathroom from cardiac arrest. She died. 35 minutes later she was revived in a trauma ER. After a month in a coma and a month in PVS she is now in her 10th month in a recovery sub acute center with permanent anoxic brain damage. She can not speak, still has a trach, is incontinent, has some comprehension but with child like judgement for her own safety. She has limited use of her hands, can barely write a few misspelled words. She was brilliant, studying to become a Neuro Ultrasound Specialist. She is 25. How will we, her aging parents care for her?
If she’d had the emergency injection and we were trained how to administer it she may have saved her own life let alone the EMTs could have tried as well. It’s not even carried on board ambulances yet they have overdose reversals, bee sting, peanut allergy and a multitude of treatments. Her life will now forever be painfully difficult and only a mockery of what really living should be.

If you think someone, or yourself, is heading into an Adrenal Crisis, even if your BP is HIGH, inject.  When someone has severe pain, or a major asthma attack, 400mg is the minimum dose given.  It will not cause harm if it is needed.  It will cause euphoria if not needed.

Steroids are not evil if needed, they save lives.

If you go to hospital in Australia or New Zealand, you are triaged.  A True Adrenal Crisis should be a  Cat 1, a pre-crisis should always be a Cat 2 (but it is not currently recognised).

Most who are still conscious when they arrive at hospital are triaged at a minimum level of 3.  We have now witnessed how quickly you can go from feeling unwell and thinking you need help, to being in a life threatening state.  Left more than 10 minutes waiting and they could well be doing CPR in the waiting room.

The Australasian Triage Scale
Triage Category Description Maximum Clinically Appropriate Triage Time
1 Immediately life-threatening, Immediate simultaneous triage and treatment
2 Imminently life-threatening, or important time-critical 10 minutes
3 Potentially life-threatening, potential adverse outcomes from delay > 30 min, or severe discomfort or distress 30 minutes
4 Potentially serious, or potential adverse outcomes from delay > 60 min, or significant complexity or severity, or discomfort or distress 60 minutes
5 Less urgent, or dealing with administrative issues only 120 minutes