When Different Became Normal?

4 years and 9 months ago I took my husband to hospital for surgery to remove cancer.

I knew, as we walked Derek to the hospital ward for admission that things would change.  He was having his prostate out, there were implications, including not knowing if this would put his cancer in remission, or if it was just step one of a long journey.

We had no idea at that time, that things would go so horribly wrong, and that he would forever by living life on the edge of the precipice, waiting for the slightest thing to push him over the edge.

We spent the first 18 months after surgery going from medical appointment to medical appointment.  It wasn’t unusual to be told “wow, and he is alive” like the Dr’s were patting each other on the back for doing such a great job, or shocked that anyone can live through what he suffered (very few do).

Then the appointments they were making started to dry up.  So we began pushing.  Things were still not right.  There were still things that had not been acknowledge, investigated, diagnosed.

After 3 years we felt we knew mostly how the CAPS affected him.  Knowing what was wrong, what we could fix (which wasn’t a lot) and what we had to learn to live with.

We kept using the term “our new normal” when asked about how we coped with everything.  According to the many medical books out there, most people with Adrenal Insufficiency can just take their medication 2-3 times a day and have a normal life.

Except that this isn’t the case for most.

At the 3 year mark we started reading, we started downloading “stuff”, we started learning everything we could about Derek’s medical conditions.  Neither of us has read so many medical studies.  Or chased so many references to find the original source data for all the presumptions.

While learning, life carried on.  We added meds (at our insistence, not the Dr’s), we changed Dereks dosing schedule as we learned that HC didn’t last long

The we realised it.

We are coming up 3 years since Derek’s last Crisis.  We have managed chest infections, urinary tract infections, colds, throat infections, injuries (mostly minor), and frights.  All without emergency medical intervention.

We had woken up one day and we weren’t working on getting used to our “new normal”, life was again just “normal”.

When did that happen?  When did Derek having Primary Adrenal Insufficiency, Dysphagia, constant brain fog, and a frequent need to “up dose” become just NORMAL?

I had to race home earlier this year as Derek was unwell, but I didn’t panic, I didn’t get a ride with anyone, I didn’t even feel an urgent need to go and get a taxi home, I just took the bus and train, then routinely sorted out his medical appointment and treatment.

I wake every morning and wonder “is this they day I find him unresponsive”, is he going to roll over and take his morning cortisol like normal.

For 4 years I would leave home each day worried about what would happen if I got that call.  When I got it, I didn’t panic, I just told Derek what to do, and headed home.

I am never really happy in the morning until I know that he has rolled over and taken his meds.  But quite often I sleep through him doing it.  Whether or not he is awake by the time I am out of the shower is still on my mind, for a fleeting moment, then things turn to normal daily routine.

I get up, I get ready for work, I head out the door, wishing Derek a good day, and work all day.

There was a time when I had to call or txt Derek 2-3 times a day to see how he was, listening intently to his voice to see if I can get any clues on whether or not he is sick.

Now I only call when I need to speak to him about something.  I will still txt him most days, especially if I notice that he seems a little tired the night before.  But it’s not with dread of what the response will be, it’s with a genuine “how are you” as you would ask anyone who was tired.

I don’t know when it happened, but our New Normal, is now just Normal.

The misquote in the medical text which originally said “you can live a normal life span” became, for many Dr’s “You can live a normal life.”   It is a bit like the misquote from Spock, who never actually said “It’s life Jim, but not as we know it”.  It sounds great, but is an urban myth based on some small portion of words.

However, there is some truth in it for anyone who is chronically ill.  As the mother of young children, running around dropping them at different activities, sitting up until they were asleep at night, having them with me in my bed when they were sick was all very normal for the situation, but if you didn’t have children, then it wasn’t normal, it was different, it was hard work, it was tiring.

So too with the chronically ill.  For the outsider, it isn’t normal to feel tired all the time, it isn’t normal to take multiple doses of multiple medications just to function, it isn’t normal to finger prick every day before and after meals.  But for those that do it, at some point, it does become normal.

And that is where we find ourselves.  We are out the other end of the tunnel, and that big light heading towards us wasn’t a freight train on our track, it was on the adjacent track.  It shook our world when it went flying past, but it didn’t stop us in our tracks, it just caused us to take a little detour in our life.

Derek still has to take hydrocortisone, fludrocortisone, DHEA, warfarin, vitamin D, BP meds, and anything else that he needs to function, but that’s normal.

We are lucky.  Our normal is actually OK.  We’ve got this.

How did we get here?  We got educated.  We studied his conditions, and we took control of them and we lived.  We continued to do things daily.  Some days it is a struggle, but we do it, one foot in front of the other, one dose of medication after the other.  Along the way we learned what “normal” meant for Derek, in his blood tests, his BP, his fatigue levels, even his body temperature.  Knowing his “normal” and accepting it, means we can work with it.

Part of accepting the new normal was accepting what you can’t change.  After working around it for a while, it will become normal.  It’s like taking a different road when going to work.  If you take it often enough, it becomes your normal routine.

There is a prayer that many groups use about acceptance.

 

Even if you are not a person who believes in prayer, the sentiment is the same.  Acceptance of what is, courage to learn how to change what is needed to change, and the understanding that there is a difference.

 

 

 

There are days when Derek isn’t so well, but that’s ok.  We know what to do, and we do it.  The good days outweigh the bad.

Normal, in this new form, is not great, but it is good.  It is doable.  And in the words of a good friend, “He is clearly alive”

I asked Derek his take on this NORMAL

“The new normal is doing less than before, but it is something.  We do what we can, and enjoy it. Failure to accept the situation would lead to depression, and I’m not going there

It’s not what Jo signed up for. But it’s what she has also accepted.  We have all had to accept it, including the kids.  It could never be normal until we all accepted it.”

Thank you to all those who have helped us to get to this point, there are too many to mention here.

 

Doctor Shopping

According to Wikipedia “Dr Shopping” is done by patients trying to get prescriptions for pain killers or the like, from multiple Dr’s.  Dr’s believe this is also the only reason.

But it’s also a term used patients when they are dissatisfied with the care their current PCP/GP is giving them and they want either a Single Second Opinion, or you want a complete change of Dr, and they try several before they settle on one.

I recently heard about a Seinfeld episode (I didn’t watch it myself) where someone had been labeled “a difficult patient” and then “fired” by their Dr and tried to steal their medical records to change the “difficult patient” label because it was being seen by every Dr they went to.

When you Dr Shop for a better standard of care, what it is assumed is that you are looking for drugs, because, well, what else could it be?  Heaven forbid you might actually just want to get your life back on track, and have a better Quality of Life.

And once something negative is put on your medical file, anyone that reads it, will believe it, because it was written by a Dr, or Nurse, and they know you better then you do.  After all, they have seen you for at least 10 minutes.

Many patients with chronic illness have this problem.  One I heard of recently had the term “malingerer” put on their file, even though during that particular ER visit, they were admitted to hospital seriously ill for several days in adrenal crisis.

The process to have that single word removed from their file was going to be long and arduous.  And it was not guaranteed it would be removed.

These days people are realising that we all have a right to a certain standard of care, and to get that you sometimes have to shop for the right Dr for you.

Have YOU ever gone Dr shopping?

We have.  Our Dr, who we liked, retired and we had to find someone who could look after Derek’s complex situation.  We wanted someone who was willing to acknowledge what they didn’t know, and be willing to learn what they needed to, to help Derek live the most “normal” life he could.

We needed someone who would order tests if we asked, who would acknowledge tests that were not within Derek’s “normal” range, and who would suggest options, referrals, medications, to help, not hinder him.

That was hard.  Our Dr had gone on a 3 month sabbatical so we used the Locum, but found her to be a very basic, “if it’s not a cold, I don’t want to know” type Dr.  We then learned, because Derek needed to see a Dr, that ours was not coming back but had decided to retire.  We were offered the opportunity to stick with the temporary Dr in his practice or go to another Dr in the practice.  Neither of these was an option as we knew both and had found them lacking in both People skills, and willingness to work with the patient.  They would rather talk AT you than WITH you.  There was no way I would entrust Derek to their care.

We had also learned not to trust Doctors completely so finding one I was willing to trust was going to be hard.

I started thinking about this recently because of a news article I read about a new Dr’s practice opening up in a town which was suffering an extreme shortage of Dr’s.  The problem was, the Head Dr in the town said patients should NOT Dr shop.  She insisted you should stick with the Dr you had good or bad, and learn to work with them.  But there was no mention of the Dr learning to work with the patient.

When you have a chronic illness it is more important than ever that you have a Dr you trust, but also a Dr that knows the correct way to treat you.

In the social media groups, you are not supposed to Criticize doctors.  The reason for that became obvious to someone one day when their specialist told them he no longer wanted to treat them because they had heard what this particular patient had said in a closed group, about how she felt his care was.  It was also originally not allowed to recommend or “rate” your Dr.  Because of issues around recommending Medical Practitioners and litigation in some countries, it is also good practice to avoid support groups advising one Dr over another.

Now however, there a several “Recommended” lists for people to find the right specialist.  This works to a point, but you have to be able to get in to them.  You also still need a General Practitioner or Primary Care Practitioner.

This is where Dr shopping IS a good idea.  And this is what Derek and I proceeded to do.

A couple of years previous the local Medical Centre had been taken over, and renovated.  We were hearing good things about the new owner.

Since we were looking for a new GP, and the Medical Centre was, within walking distance for when Derek was feeling well, it was decided that we would check out the Doctors there.  Only I didn’t want just any Doctor.  I wanted one I could click with.

I had already been Dr shopping when looking for a family Dr years ago, when I found the one that is now retiring.  I had been to a number of Drs after we moved town, but hadn’t yet met one I “clicked” with, until that particular Dr.

This time I was doing it deliberately.  So I went in with a list of questions, and informed her immediately that I was there to see if I felt she was the right Dr for us.  Her books were closed, she was the 2nd in charge in the practice of 10 Doctors and it would be hard to get on to her books.

Some of the questions were:
1.  Are you willing to allow me full access to all test results?
2.  Are you willing to have patient led care?
3.  Are you happy being interviewed by a patient?

Derek is lucky.  The Doctor was very happy we were interviewing her.  And once we explained Derek’s medical conditions, and history, she understood that we were being careful about who we chose.

Once you find your Dr

Whoever you decide on, once you start to work together it needs to be a partnership.  It can’t be one sided, from either side.

A friend of mine has written a document for working with your Dr which is well worth a read.

Talking to your Doctor

by Des Rolph

When going to appointments be prepared. Take your medical history with you. If it is extensive, type it up making dot points, not long paragraphs. It is easier for them to read. Keeping your notes concise and to the point is key, no rambling on.

  1. Tell them that you would like to work with them in treating your problem and that you need to fully understand reasons behind treatment and what the expected outcomes should be.
  2. Ask if they have any documentation/information around their proposed treatment and your condition, or can they point you to websites that explain the condition.
  3. Initially go in with a list of symptoms and general questions rather than with your own thoughts on diagnosis. You can always do a bit of steering if they aren’t connecting with you, but things get missed if you try to lead too early. If you are not sure about anything, ask questions.
  4. Have a list of questions! Do not throw them together at the last minute, but jot them down in the weeks leading up to the appointment. Take two copies, one for the doctor, one for you to make notes. I have found some doctors write on your notes and hand them back to you.
  5. It is helpful to take someone with you to the appointment, so that they can take notes so you don’t miss anything. For some reason, having someone with you who can validate your symptoms can have a positive impact. It might be useful to have an extra copy of your list of questions for them as well.
  6. Keep a symptom diary. Jot down BP on waking and going to bed at minimum. It is helpful to have a glucose metre, and take note of your blood sugars before meals. Jot down any symptoms you experience and record your cortisone dose if you have updosed for the day. If you have pain, indicate out of 10 what level it was.
  7. Medication list – also break it down by time of day and dosages for each
  8. If you have multiple doctors and/or multiple conditions, be sure to note who prescribes each medication and/or what condition it is for.
  9. Include in your medication list, any supplements, over the counter medications and as-needed tablets, solutions, powders or remedies.

You have many things to weigh up, and make decisions about. If you have multiple issues, often one treatment can inversely affect something else, and we have to decide which is the most at risk.

Remember that they are working for you, and that the ideal relationship between you and your doctor should be open, honest, and equal. They should respect that you need to understand their decisions and why they are making them. Without understanding treatment, we can become anxious and not feel confident.

 

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 Crisis Averted – Mapping a UTI

One of the things Derek does is keep a track of his medication.  What he takes and the time he take sit.  Each time he takes a medication he records it.  If ever we need to go back and see a pattern, we can.  It also helps him to know whether he has taken his meds or not as he won’t record them until he has taken them.

If he skips a normal dose because he is taking more, he indicates that as well.  Because of that, we are able to see what happened when he got a UTI recently.

Last year he was a little unstable, his BP was playing up, his heart rate was dropping steadily, having gone from a normal 65-75 BPM resting to 52BPM resting.  He records it on his fitbit so although not perfect, if there is a trend, it can be seen.  There was clearly a trend.  It was a steady downhill slope.

It had got so bad that we were canceling events we were supposed to go to, he stayed home while I did all the “Christmas” things.  Derek had to miss my brothers Birthday, we were glad we didn’t have any big things planned.

In January, because he was becoming worse we went to the Dr and talked about this trend.  She decided to put a stop to it by changing his BP meds.

With that change came stability.

We had been invited to a nieces wedding but I had tentatively accepted for me and not Derek as we didn’t think Derek was stable enough to travel.

Once the BP meds were changed, we decided that he could travel and so accepted the invitation formally, and then organised leave.  We planned to drive up, stay for a couple of nights, then drive home again.

Derek keeps his HC at the lowest dose possible for him to function and work, and keep his weight stable.  Some days he will “top up” for one reason or another.  For example, we had a driver do something crazy in front of us when I was driving one day and it caused his normal “reaction” of a cortisol crash which requires a stress dose.

He topped up the next day as well (for what reason we can’t remember).

He went a few days without having to take any extra.  Then he updosed again.  It wasn’t stress dosing, just feeling off, so updosing.  In total by 10mg a day, going from 22.5 to 32.5 a day.

Then one Saturday he had to take more.  We presumed it was because of the heat and the fact he had worked outside.  This sort of made sense, but the fact was, he hardly did anything and had to keep sitting down.

Sunday he felt like he had run a marathon on the Saturday and he could only rest.  He had no energy to do anything else, so he took a small updose.  It was only 2.5 extra, but it was enough as long as he didn’t do anything

On the Monday he didn’t updose.  By Monday night he felt off again.  This time he decided not to updose.  He worked from his home office, but not for long, and not well.

Monday night he felt worse and he had a little wind.  Nothing specific. The wind was not where it was last time he had a crisis, so he didn’t believe it was the same thing.  He got out of bed and went for a walk, having taken omeprezole but it didn’t seem to help.  He settled down for the night, but it was a very restless night, with not a lot of sound sleep for either of us.

Tuesday morning he woke up and decided he would not go to work in the office that day but rather, would work from home.  He had definite discomfort in his stomach.  He had a lot more wind, and he felt rather unwell, with fatigue, discomfort, hard getting out of bed, his brain wasn’t as sharp as normal.  It was a day to updose.

No Crisis Today Thank You

Our day went like this:

  • 0545  – 10mg HC Derek woke to take his first dose of the day.  Earlier than normal.
    0655  – I left for work
    0710  – I called from the train.  His wind was worse so I told him to take more HC.
    0715  – 10mg HC.  His wind was worse so he took the extra.
    0805– I arrive at work.  I txt my daughter to check on her father.  He is complaining he is still unwell.
    0830– I get a call from my daughter to say the discomfort he felt had turned to pain.
    0840 – I instruct Tammy to make her dad take another dose as he was getting worse.
    0850– 20mg HC.  Tammy leaves for work having confirmed Derek had taken extra. I am on the train home.
    0950– I arrive home from work.

Dip Stick Diagnosis

 

By now Derek had taken 40mg HC and looked as if he had skipped his morning dose.  I had to decide did I call an ambulance, take him to hospital or try and get him an appointment at the Dr.   I phoned the Dr and asked for an urgent appointment.  If I hadn’t been able to get one, we were heading to hospital.

  • 1030 – 5mg HC while sitting in Dr’s surgery waiting to see the Dr.
    1030 – Dr confirmed UTI from very clear dipstick.
    1045 – Got blood tests to confirm UTI.
    1230 – 20mg HC.  The 20mg from 8.50 was wearing of, the 5 from 10.30 had no effect.
    1530 – 5mg HC – Normal dosing.
    1800 – 2.5mg HC – Normal dosing.
    1830 – 5mg HC – extra dosing
    2130 – 5mg HC. – Night cover.  He went straight to sleep as if he had no extra cortisol.

We had managed to keep him out of hospital so far, but he was only just functioning.

That night we went to bed but I didn’t go to sleep quickly.  Before I could settle I set an alarm to wake up and get him to take a middle of the night dose.  We decided that he would take 5mg at 3am.  I did not want to find an unresponsive husband in the morning.

Professor Hindmarsh from the Great Ormand Street Children’s Hospital had reported on a study a couple of years ago.  He had recommended the theory of Circadian dosing, and early morning dosing when ill.  The theory (a very sound one given the number of people who go into crisis around 4am) is that you are at your lowest between midnight and your first morning dose, so you should make sure you have enough to cover you if ill.  Who were we to go against this theory?  Better safe than sorry,.

Day 2

For dosing on Day 2 Derek decided to try something slightly different.  He was on antibiotics so the instructions according to the UK Addison’s Disease Support Group guidelines you should Double your normal daily dose when you have a temperature of more than 37.5° Celsius (99.5° Fahrenheit) or more than +1° Celsius above normal. Treble your normal daily dose if your temperature rises to more than 39° Celsius.

According to these rules Derek should not require double dosing, or anywhere near the doses he had taken.  The decision we had to make was, do we listen to this, or do we do what we felt was needed.

I knew him, I could see how he was.  We would do what was needed.  His temperature was not a full degree above his normal (35.9), but he was clearly unwell and there was clearly a UTI to fight.

Here’s where things were changed up.  We know, from all the reading we had done and the random cortisol test he had a few months ago, that it doesn’t matter how much HC he took, his body will only use what it needs, the Cortisol Binding Globulin would then grab what it could, and the rest would be excreted.  So taking 20mg as a double dose would not necessarily keep Derek going.  Especially when half- life is still only 90 minutes.

To double dose, he would be going very high at hour 2, then a big drop at hour 4, and then have to fight to get back up.

Instead, he decided to do double his dose by taking double the NUMBER of doses.

So he did this:

  • 0300 – 5mg HC
    0630 – 10mg HC – Normal morning dose
    0830 – 10mg HC – “double Dosing”
    1030 – 20mg HC as he felt himself crashing badly even though he was in bed.
    1245 – 10mg HC
    1500 – 5mg HC
    1800 – 5mg HC

This made a total of 65mg for the day.  This amounted to just below triple dose for the day but it is what he needed just to sit around doing nothing.

Thursday was going to be a lot harder as we were driving (me driving, him resting) 500km to a family wedding.

Dosing was going to be double the number of doses, rather than the strict double each dose amount.  Again, we wanted to keep his Cortisol levels up, not do big highs and lows.

We were also aware that when travelling, Derek would updose as it made him so tired.  This meant his dosing had to be extra for travel and extra for the infection.

  • 0300 – 2.5mg,
    0620 – 20 mg
    0800 – 5mg Heading out the door for our trip

As I was driving over the bridge out of town I turned to look at Derek.  He looked very unwell.

“Are you absolutely sure you want to do this.  It’s not too late to say we can’t go.  I will turn around now and take you home to bed.”

“No.”  The answer wasn’t completely convincing.  “We will go.  We have to go, it’s your neice.” So we continued, very slowly up country.

  • 1030 – 10mg  (we stopped for morning tea)
    1230 – 5mg (stopped for a leg stretch and cold drink)
    1500 – 10mg (driving, but over the worst of the road)
    1730 – 2.5 mg (we had arrived and he was laying on the couch sleeping)
    2130 – 5mg to keep him going over night.  I woke him for that dose.

This made a total of 60mg on Day 3

Continuing to reduce

Over the next 8 days he decreased his dose each day.  He took what he needed, depending on how he felt.  His dose went

Friday was the Wedding day.  We went to the mall for him to have a hair cut.  This required us to get a wheel chair as he had very little energy, and not enough to walk around looking for somewhere to have his hair cut.  With everything going on he was still needing to updose.

So Friday was 57.5mg.  Saturday we had a lunch to go to, but he could just sit, doing nothing.  40mg was the sweet mark.

Sunday we were driving home.  He was still on Antibiotics, but was feeling a bit better so he stuck to  30mg.  He was glad to be home, and exhausted.  We had Monday off as we were originally planning on driving home that day.

Instead, we were able to just relax.  He managed on 32.5mg.

Tuesday we were both back at work.  Derek was going to work from home, I had to go into the office.  He was almost down to his normal daily dose, but not quite, at 27.5

Wednesday he woke feeling like he was almost normal, so could reduce his dose.  At least, that’s what he thought while in bed.  Once up, that changed.  For the next 3 days he took an extra 5mg 2 hours after his first morning dose.  It seemed to work.

By Friday he was at 25mg, only 2.5 mg above normal.

Then Saturday hit.  We don’t know what went wrong, or if it was related at all to everything else but while sitting having a morning coffee Derek got a sudden stomach pain.  It went from not well to Do I need to inject, very rapidly.  He was in pain, he was nauseous, his BP jumped up from his normal 125/75 (which is has been since new BP meds) to 157/90.

When I realised he wasn’t going to immediately throw up, I got him to take 20mg HC.  He sat for an hour and his BP began to drop, his pain moved to discomfort, and he was able to relax.

The day isn’t finished yet so we don’t know what will happen with his dosing.

Stress Dosing Graphed.

Blue = Normal Monthly dosing : Red = Buildup and UTI

This is what “Stress dosing” looks like when Derek got his UTI.  To show what stress dosing looks like, we have overlaid in RED, the UTI going back 31 days from today.  The BLUE broken line is a normal 31 day period.  It shows the occasional top up dose for various reasons, but a reasonably straight line of consistent dosing.

Derek’s normal “top up” will be for any reason from feeling “off” to going out somewhere or working in the garden.  It is a bump of 2.5 to 5mg as a  one off dose.

I was heading home on the Tuesday expecting to call an ambulance.  Instead, we managed things at home, with the help of a Dr.

If we hadn’t got to the Dr urgently, he probably would have been in hospital instead of at a Wedding on the Friday.

What we noticed on seeing the overlay is that as the UTI was coming on, he was updosing more frequently, but we didn’t know why.  He would feel “off” so he would take an extra 2.5 to 5 mg, but we didn’t realise that he was doing that with more frequency until the big one hit.

He is still not well.  He will probably still be suffering for another week.  Hopefully he will be back to his normal 22.5 soon, but it won’t be until he is safe on that level again.

Only time will tell how he goes.  We have more antibiotics in case the UTI comes back.  We are hoping it won’t.

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What is YOUR Lifesaver

When someone with a peanut allergy, or any other allergy that can cause a severe allergic reaction they suffer an Anaphylaxis, which needs to be treated right urgently. If you have an anaphylactic reaction, you need an epinephrine (adrenaline) shot as soon as possible, and someone should call 911 for emergency medical help. Left untreated, it can be deadly.

If you are a Surfer, as long as you are sensible enough to be surfing at a patrolled beach and you get into trouble someone will realise it,  it will probably be a Surf Life Saver and they will come to your rescue.

Diabetics may experience a life-threatening emergency from too much or too little insulin in their bodies.  Too much insulin can cause a low sugar level (Hypoglycemia), which can lead to insulin shock.

Although not on the market yet, there is a Glycagon pen in stage 3 trials (soon to go to Clinical Trial.

This G-Pen will make all the difference to someone who suffers hypoglycemia.

This is not a pipe dream, but an almost reality.

According to the developer “Our current focus is on the development of a highly stable, ready-to-inject glucagon solution as an alternative to the existing glucagon emergency kits.”

IN 2013 a Charitable Trust gave this company a nearly $1 million grant to develop its liquid glucagon, which followed a $1.14 million grant from the National Institutes of Health.

the money for development is out there.  But not, it appears, currently for an Orphan disease.

When you have Adrenal Insufficiency, you don’t have any of these options that we can find, either already existing, or in the near pipeline.

Current "Emergency Kit"The options you have, depending on how good your Dr is, are:

  1. Get hold of an ambulance, hope they know what to do, that they carry solu-cortef and then get you to hospital.
  2. Get taken to hospital by a family member and hope the hospital know what to do, so they can inject you with solu-cortef. (Many hospital’s don’t, and won’t listen to the patient or advocate.)
  3. Have an “emergency kit” at home, and have someone available that knows how to deal with all the paraphernalia and are able to inject you.
  4. Do you have it handy?  It takes a large container to carry your kit, it won’t just fit in a purse like an auto injector will.

There is NO option for an instant injectable device for Addisonians.    There are 3 reasons for this.

  1. It is not profitable for companies to make it.
  2. Addison’s is an Orphan Disease (fewer than 200,000 in US).
  3. The drug used is not an Orphan Drug (it can be used for other diseases as well).

What exists is a Solu-Cortef Actovile.  This is a small bottle which has the liquid and the powder that is required to create the emergency medication.  When mixed, it is only usable for approx 48-72 hours.

There is available, a dual cartridge syringe, which holds liquid in one cylinder, and power in the other, and you mix the two together with swift actions.

Not only does this technology exist, but it exists WITHIN THE SAME COMPANY that makes the Solu-Cortef.

The Fix Exists.

Pfizer Make Solu-Cortef.  Pfizer also make Caverject.  Caverject now comes in a syringe that you mix as you need it (previously it came the same way as Solu-Cortef.

Now it comes in a dial up system. Twist the top and it mixes the powder and solution,  Twist again to dial up your dose, then inject.  Easy even if you are shaking and about to collapse.  No focus needed.  you can’t overdose, you just dial to max and go.

Currently you have to open the bottle, push the stopper down to mix the powder and solution, take a needle, attach it to the syringe, inject the needle into rubber stopper of the syringe, draw up the fluid, remove the syringe from the glass bottle, and now two choices.  Either change to a new sharp needle, or use the now blunt needle (which may also be longer than you need) and inject that into the nearest large muscle group you can reach (normally the thigh).  It takes longer to do, than it does to read this paragraph.  And all the time, you are becoming more and more sick, loosing focus, loosing your eyesight, or you have someone else there that is now in a panic as their loved one sinks further into crisis, risking death.

The ONLY reason Pfizer don’t to the solu-cortef the same way is they don’t see a profit in saving the life of an Addisonian, because there are less than 200,000 sufferers from both Primary AND Secondary Adrenal Insufficiency in the US.

mylifesaver

Will Your Life Saver Save YOUR Life?

Posted in Uncategorized | 1 Reply

You only live 15 minutes from a Hospital

So you don’t need an emergency injection kit.

Have you ever heard that from your endocrinologist when asking if you can have an emergency injection kit?

We have. Thankfully we weren’t asking for one as Derek had already been given one.
It was our first visit to Derek’s Endo after his diagnosis. We had talked about dosing, stress dosing, and the emergency injection.

He said that we only lived 15 minutes from the hospital so we would never need to use the injection kit and if he had been treating Derek originally, he wouldn’t have bothered giving him one.

We asked “what about if we travel away, we do a lot of traveling up country.”
“You are never that far from a hospital. You won’t need it.”

I wasn’t happy with that answer, and was glad that Derek already had his.

We live in a country where we have earthquakes. They aren’t always big ones, but they happen, and you never know when.

We also live in a valley that had been channeled out by a river and earthquakes, over thousands of years. In the 1880’s there was a massive earthquake that changed the lay of the land dramatically. The valley base shifted, the river shifted and for quite some time, access was blocked.

Now there are two roads in and out. One is over the river from our home. It is a dual carriage way (2 lanes sound, 2 lanes north). The second road is on our side of the river. It is a single lane north, and a single lane south. This too has hills on one side and the river on the other. It also has several spots that are prone to impassable flooding in bad weather.

We live just above the narrowest point in the Valley. There is the Lower Valley which is wide, flat and has the sea at its base. The Upper Valley cuts in between two hills, opens up enough for an average NZ sized town of 40,000 people and is cut off at the top by Large Hills.

Derek works at the bottom of the Valley. The River winds its way down, crossing the middle of the town, and enters the harbour on the opposite side of the Lower Valley to which the main road sits.

It also means that Derek must cross the river to go to work. This means the Hospital, which he is only 15 minutes from even when working, is on the other side of the river to his work.

We had one in 2013 (just after Derek was diagnosed) which caused havoc with damage to buildings, public transport ground to a halt, roadways were shut down due to congestion and slips. We had another one in 2016 which caused problems again. I was shut out of my office for a week, Derek’s building was closed for a similar time, public transport stopped for 2 days. Everyone was asked not to leave home unless they had to. The second one was at night, so most people were at home. There is the very real potential for an even bigger earthquake as we live on a 2 fault lines.

Earthquakes aside, we live in a changeable weather system. We can wake up to a beautiful fine morning, and be in torrential rain with flooding in the afternoon.

One day I went to work in the city. It was wet, but not horrible. Derek was also at work. The weather turned very nasty very quickly. There were reports of flash flooding up and down the Valley. Public Transport had been cancelled, or seriously delayed. The roads were flooding. After a couple of hours I decided (with my boss’ agreement) that I should go home.

I phoned Derek and told him I was coming to pick him up, and we would get home together. I got to the main road to the valley and had to stop. Traffic going up the valley was going 5km an hour. There was deep surface flooding. We had to drive on the raised edge of the road as one lane was too deep to drive in, and the other was submerged, but just drivable. It was still raining. Slips were appearing on the main route to the Valley and everyone was beginning to need to go home.

As I drove along I called Derek again and told him to wait for me inside as, although I was on the road (5 minutes from his work) it was going to take me at least 30 minutes to get there. He had cancelled his Driving service and they were grateful as their Drivers were having trouble picking up the few clients that hadn’t cancelled.

It took me over an hour, and 3 diversions before I finally arrived. I had driven through water deep enough to have ground me to a halt, only to find the roads all being closed behind me. We were again diverted after I picked him up. If he had been in need of medical help it wouldn’t have happened quickly as most of the roads to the hospital were closed.

That 15 minute drive from his work, to the hospital on that day, would have become a 45 minute drive.  We got home just as the two r ads from the Lower to the Upper Valley were closed due to flooding, and major slips.  Thankfully Derek was well that day, because if he had had a problem once home, that 15 minute drive would have been almost impossible, even if there was an ambulance available.

Flooding, for us, is a major issue. But so is traffic. What is a 20 minute drive in the middle of the day, can be a 40 minute drive at peak hour, assuming no accidents or incidents blocking the roads. And we live in a small area.

I remember hearing on a group one night of a woman and her husband. The wife was very unwell and felt she was going into Adrenal Crisis. They didn’t have an emergency injection because they “lived close enough to a hospital”. Except there was a snow storm.

When they left home the roads were passable. By the time they were 5km down the road, they were not. They were panicking because they didn’t know what to do. Did they try and go forward, did they try and go back?

Then there is Katie’s story. I have mentioned her a number of times. Katie was found collapsed in her bathroom, unresponsive. She didn’t have an emergency kit because “she lived close to a hospital”. She did. But she also lived in a large city. By the time the ambulance (who did not carry solu-cortef) arrived her heart had stopped. They had to get her urgently that 10 minute drive to hospital.

Except that 10 minute drive is 10 minutes when there is no traffic. Because it was early morning, it was peak hour traffic, which meant traffic was a lot slower.

Related image

Wellington Free Ambulance Call Centre

Treatment Timings

Here are three possible scenarios:

Derek wakes up at 5.30 am. He is nauseous, has a headache, feels shaky. He takes his normal morning dose early. After 45 minutes it’s clear that is not going to work. He is feeling worse, so he takes another 20mg HC.

10 minutes after that he goes to the bathroom to throw up. He crawls back into bed and takes another 20mg HC. Drinking the water and swallowing the pills doesn’t do it for him, he heads to the bathroom again.

SCENARIO 1

We have an emergency injection. I inject, I wait 10 minutes until it has kicked in, I get a bowl, bundle him in the car and we drive the 15 minutes to hospital. It’s a Monday morning, work traffic has begun, but not to heavy yet.

We arrive at ED, explain to the nurse what has happened, she reads his Medic Alert bracelet, sees and reads the flag on against his name in the medical records and takes him straight back.

We are asked when he had his emergency shot. I explain 30 minutes ago. The Dr comes in, talks for a few minutes, orders bloods, and a bag of fluids. There is no urgency as he has had his shot. An hour after he throws up the second time, he is safely on a bed in the emergency department, having fluids pumped through an IV as they wait for blood work, to find out why he went into crisis.

SCENARIO 2

We don’t have an emergency injection. He is still able to talk, and walk so we take him to hospital. It’s only a 15 minute drive, traffic starting to hit peak flows 7.00am.

We arrive at the emergency department and sign in. We wait 10 minutes, because it is change over so nobody is around.

We finally get to speak to a triage nurse. She takes brief notes, asking about pain, how much vomiting, had he eaten anything that could be causing this. I ask what level he is triaged at. She says a level 3 “unwell male” and tells us to take a seat back in the waiting area. She offers him panadole and a bowl.

I ask what is going to happen if he goes into a full crisis in the waiting room. “I will keep an eye on him”.

As we sit there Derek becomes groggy and lays down. He closes his eyes and will only answer yes/no questions.

45 minutes later he is finally taken out the back. His BP is checked. It’s high. The Junior Dr comes in and examines him. We explain again about his adrenal insufficiency. It seems to go over her head.

She orders bloods and a chest xray and leaves convinced his pain is from gall bladder issues because that is more familiar to her.

The nurse comes in to get bloods. Derek can now barely talk. He is beyond being sick. I tell the nurse he is heading into an adrenal crisis, go look it up.

Over an hour after we arrive at the hospital he finally gets the solu-cortef he needs.

SCENARIO 3

We DON’T have an emergency injection because we only live 15 minutes from the nearest hospital. I call for an ambulance. I go through the 20 question pathway for an emergency call. I explain 3 times that Derek is Steroid Dependant and that he can’t keep his steroids down. He does not have enough steroid on board to keep him well. I am reassured that he will be OK. They are going to dispatch an ambulance as soon as one is available. Just answer the questions. I ask what category he has been given. Level 3, unwell male. I explain another time (it’s taken 4-5 minutes of going through their automated triage by now) to explain that this is a life threatening emergency. I finally manage to explain to the dispatcher what is wrong. She assures me she has dispatched an ambulance.

20 minutes later an ambulance turns up. The closest one, although 15 minutes from the hospital, was 15 minutes THE OTHER SIDE of the hospital, so, even under lights and sirens, it took 25 minutes to get to us. Thankfully it had been dispatched during the conversation with the Dispatch Operator.

Paramedics come in and begin to assess him. Derek is now very drowsy, he has stopped throwing up. He cannot stand, he can only respond to yes/no questions. His BP has gone high (yes, we all know that’s what it does first).

Because his BP is high, they are not worried. It can’t be and adrenal crisis, oh, and they don’t carry solu-cortef.

He is bundled into the ambulance and is headed to the local hospital ED. Except that now, because of the delays, it is 7.10 am and peak traffic flows are running.

The ambulance staff still don’t understand the gravity of the situation and instead of seeking permission for lights and sirens, the just drive, one paramedic in the front driving, one in the back attending Derek. The drive, in peak traffic, takes 20 minutes.

Only one of these scenarios has a good outcome, with no serious issues. And that was the one with the solu-cortef. Anything else would have had Derek at a high risk of damage due to a crisis. And Scenario 2 actually happened. He had pneumonia.

Without an emergency injection kit, those 15 minutes have turned into major delays in treatment.

Where are you during your Crisis?

The statement “you only live 15 minutes from the hospital” is all well and good. But what about your friends, parents, the Restaurant, the sports field where your kids are playing? They may not only be more than 15 minutes away, but may be in another town.

You can go into crisis anywhere, it’s not only at home.

According to an article entitled Adrenal crisis in treated Addison’s disease: a predictable but under-managed event by Katherine White and Wiebke Arlt1, up to one-third of all emergencies occur away from home.

More than two-thirds of all adrenal emergencies occurred at home, as reported in both our 2003 and 2006 surveys. Around 11% were overseas or else in Figure 1 Factors leading to unplanned emergency hydrocortisone injection in the 767 respondents to the International Addison’s Survey 2003 (UK, Canada, New Zealand, Australia). EUROPEAN JOURNAL OF ENDOCRINOLOGY (2010) 162 Adrenal crisis in treated Addison’s disease 117 http://www.eje-online.org transit on an aircraft or boat, 7% were at the house of a friend or relative, 5% were at a hotel, 4% were in the countryside or playing sport, 2% were driving in their car, with 3% at work or out shopping. This geographic diversity highlights the need for Addison’s patients to carry an emergency injection kit with them whenever they are away from home, and preferably to keep a spare set of injection materials in their car.

What can you do?

In my and Derek’s research, we came across a Document on Timelines in the Management of Adrenal Crisis – Targets, Limits and Reality. It makes for very interesting reading. In their investigations, the researchers (and this was Germany) found that “initiation of GC administration was delayed in 46% of patients.”

In contrast, the time from arrival of the physician or from arrival of the patient in the hospital until the actual administration of glucocorticoids was beyond the accepted time limits in over 40% of the patients indicating a clear need to improve current patient care. The reasons for this delay are not fully clear. It is the experience of many patients (22% in our sample) that their emergency card is occasionally neglected, indicating that many physicians are not familiar with the life-threatening character of AC. It may also indicate that current national emergency cards are not very impressive and do not alert the reader to the necessity of rapid action. Accordingly, there have been recent efforts to improve the efficacy of the emergency card by a new design,[18] which now is already internationally available. However, whether this improves the card–injection time is still uncertain.

First you have to get to hospital, then you have to get seen by a Triage Nurse (even when arriving by ambulance), then you have to be assigned an urgency level. Depending on how many other emergencies have arrived (and I have been at our local hospital when 3 ambulances have pulled up, all patients being status 1 or 2) before you are treated.

When your Endo next tells you “You live close enough to a hospital to not require an emergency injection kit”. Answer by saying “No I don’t”.

Ask him how far he lives from the hospital, and how long it takes him, in a car, in peak traffic, to get there. How long does it take him when it is snowing outside, or there is a major weather storm, or if you, like us, live in an earthquake prone area (or hurricane, or tornado etc), how long does it take then to get to hospital?

Does he change his timing for getting to work because he/she want’s to avoid the traffic. Does that mean you can change the timing of your Adrenal Crisis, to fit with traffic flows and weather patterns?

What about a power cut? Modern phones don’t run if there is no power. You can’t call an ambulance without a phone, and if you do drive in, you are stopped at every turn because the traffic lights aren’t working.

And an even more basic reason that 10 minutes doesn’t wash? What about an accident? Either your’s or someone else’s, and you are stuck in a traffic cue 20 cars deep, with no way to turn around or change direction.

An Adrenal Crisis can drop you fast and can kill you if not taken seriously, or given the correct treatment. Demand your right to a safe life by being issued a kit.
Unless you live in Utopia or the entrance foyer of the Hospital, you are never “Just 10 minutes away”. You are your life away.
And if you did live in Utopia, wouldn’t have AI.

Further Reading

If all else fails show him the document on this link “EXTENSIVE EXPERTISE IN ENDOCRINOLOGY by Prof Bruno Allolio, which opens with the line :
Adrenal crisis is a life-threatening emergency contributing to the excess mortality of patients with adrenal insufficiency.

 

And goes on to say:

Every patient should carry an emergency card and should be provided with an emergency kit for parenteral hydrocortisone self-administration.

During this discussion you should remain quietly spoken. Keep control. If you don’t get an answer to a question the first time (and they will avoid your questions) repeat it. “Sorry, I have explained my very real reasons for asking for an emergency kit. Can you please give me your legitimate ground for not giving me one”

And repeat it. Every time he turns you down, repeat the question. Become a broken record.

If he still refuses (and you haven’t been physically evicted from the office) request he signs a document that states something along the lines of:
My patient has asked for an emergency kit, showing me valid documentation that states she/he should have one. By signature, I am stating that I refuse to give the emergency kit, thus attesting that this evidence was presented, thereby documenting malpractice, if refusing to prescribing the emergency injection glucocorticoids and the patient suffers because of this.

When handing it over, inform the Dr that once signed, this document will be going to whoever the relevant Medical Boards are.

Good luck getting your Solu-Cortef. It is vital for your safety. You have a right to have it prescribed.