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.
Wellington Free Ambulance Call Centre
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.
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.
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.
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, 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.
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.