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).
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.
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.
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 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
|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 extra fluids.
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.
Another bag of fluids
CBC’s, electrolytes and several other bloods.
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
- Once Deb went down, the stress in the house went up.
- ALL the Adrenal Insufficiency patients in the house suffered HIGH BP.
- Everyone had up-dosed/stress dosed before the event, but because of the stress of witnessing a pre-crisis, it was not enough.
- Everyone stress dosed trying to prevent a pre-crisis.
- Treatment received by those in pre-crisis was dependant on several things.
- Previous history with the hospital you go to.
- Attitude of the Dr’s treating you.
- Knowledge of your condition.
- Having a strong, knowledgable advocate.
- 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
||Maximum Clinically Appropriate Triage Time
||Immediate simultaneous triage and treatment
||Imminently life-threatening, or important time-critical
||Potentially life-threatening, potential adverse outcomes from delay > 30 min, or severe discomfort or distress
||Potentially serious, or potential adverse outcomes from delay > 60 min, or significant complexity or severity, or discomfort or distress
||Less urgent, or dealing with administrative issues only