I have had enough. I am tired, I am sick of this illness. I want OUT!
Please understand, I am not tired of my husband, I love him dearly, and wouldn’t want to be without him. Therefore I must accept this intruder into our lives, that will never leave, even when we take the welcome mat out from under his feet.
It is the Illness I am sick of. I am tired of it, I HATE it. But I am told I don’t have a right to say these things because I am not the one with it.
Actually, Yes I Am!
When I got married, I promised to love Derek, and to stay by his side in sickness and in health. And I will. But we are a partnership. When we married we put everything in OUR name. This includes this illness.
I claim it as much as Derek does, because I also live with it. Derek suffers bodily from it, but I suffer mentally from it. WE OWN IT EQUALLY.
Why am I saying this now?
Let me explain
One Friday morning Derek “crashed” about 11.00 am at work. He suddenly felt like he needed his meds. He didn’t take them, he decided to wait till his alarm went off. After all, it was only 30 minutes away.
At 11.30 it went off, but he was in the middle of something, so he doesn’t know if he took them.
30 minutes later he noticed his phone was flashing because he hadn’t recorded his meds. He said he couldn’t remember taking them, and felt “off”. The normal policy is, if you can’t remember taking your meds then take them again because even if you did take them, you probably need more. And too much won’t kill you, but not enough will.
He came home from work tired that night, but not sick. Just like had had a bad day. It got to 7.00 and I felt like I desperately needed to go to sleep. Because Derek wasn’t feeling great, we both went to bed. We also both fell asleep almost immediately.
Derek woke up Saturday with a bit of wind under his rib cage. Other than that, he felt tired, but not sick. He didn’t feel like he needed to take extra meds. We relaxed for the morning as I still wasn’t feeling great.
By the afternoon he still had the wind so we went for a walk. He considered taking extra meds, but decided that apart from this irritating wind which was causing a bit of breathlessness, he felt ok.
Sunday morning we woke and I asked him how he slept. Not good he said. He couldn’t lay on his right side, it was too painful. We decided then that we should possibly go to A&E, as now he was starting to feel more unwell (not sick, just unwell). It didn’t appear serious, it was just pain, so we felt we could take our time.
Derek went to have a shower, while I did a few things around the house. I went check how he was just as he was finishing his shower and saw him pull up in serious pain. He had reached up, and got a very sharp pain under the ribs moving up over the shoulder.
We phoned a Medical Help Line to see if we were worrying over nothing. I spoke to the nurse as by this time Derek was not feeling well at all.
The nurse asked if we had an emergency ambulance alarm. I could sense she was about to say she would call him an ambulance. We didn’t feel he was that sick so told her that we could just take him to Hospital. We actively live as close to the hospital, as the nearest Ambulance station, so it was quicker for us to drive.
We still didn’t think that Derek was that sick. He seemed a little low because of the pain, but didn’t think there was a need for extra Hydrocortisone.
We arrived at A&E at 9.49 am. We went straight to triage and spoke to the nurse. We explained what Derek’s symptoms were, and explained that with Addison’s he could very quickly go down hill. We didn’t give Derek extra meds at this point because we didn’t want to mask his symptoms, and we felt that as soon as they spoke to him in a cubical, they would give him emergency cover.
A&E have a system (quoted from their website):
- Triage 1: life-threatening e.g. heart attack. Treatment is immediate.
- Triage 2: emergency e.g. chest pain, shoulder dislocation etc. We aim to treat these patients within 10 minutes.
- Triage 3: urgent e.g. bad injuries, appendicitis etc. We aim to treat these patients within 30 minutes.
- Triage 4: semi-urgent e.g. fractures etc. We aim to treat these patients within 60 minutes.
- Triage 5: non-urgent e.g. minor strains or sprains which could be treated by a GP/primary healthcare organisation. We aim to treat these patients within two hours.
I will say here that what they say on their website and what is truth are completely different. When you get their they tell you they are required to make sure all people are “Treated and Streated” within 6 hours. In fact, it can take up to 3 hours just to get to see someone other than the triage nurse.
Derek presented with a life threatening medical condition, and unexplained chest pain. He was classed as Triage 3.
I let the nurse know I was not happy with this, as although he was awake, semi alert and talking, he had Addison’s and was unwell. I pointed out twice that this could turn into a crisis without notice, and was she happy having me inject him with emergency medication in front of everyone because they weren’t treating him with the correct urgency.
It didn’t make a difference. By the time we left the triage area, Derek had worsened.
After 10 minutes sitting in the waiting room Derek started going down hill. He could not keep his eyes open, he was starting to feel nauseous, he had a really bad headache, he had become sensitive to light and noise, he felt weak and was starting to lose focus of what was happening around him. Basically a number of the “signs and symptoms of an adrenal crisis”.
The Triage Nurse could see him going down hill, she even came over and asked if he wanted it slightly darker where we were sitting. He was sitting there propped up against the wall, with his legs on my knees and his eyes closed. He didn’t speak to her because of how he felt.
After what seemed a very long time (almost an hour I think) we finally got taken out the back and he had to try and repeat his symptoms. By now I was having to do most of the talking as Derek continued to go down hill.
The Dr came in a few minutes later. It was now 11.00. 1hr 10 minutes since presenting at Triage.
Derek was going down fast and still no offer or suggestion of emergency meds. I turned to Derek and said I thought he needed HC early as he could no longer focus, didn’t acknowledge properly what was going on, basically, he was crashing and was now in crisis.
I deliberately pulled his medical box out in front of the Dr and asked Derek did he want 20mg instead of the normal 5 he was due. He couldn’t decide (confusion starting to kick in). He told me later that all he could do was say yes, because anything else was too hard. I made a drama of it to see what the Dr would do. She simply said “if you feel he needs that much, then give it to him”.
What? He needs a dam site more than that.
The Dr ordered blood work and an xray, then left. I started talking to the nurse about Adrenal Insufficiency. She admitted she had never seen anyone with it before.
Looking at Derek I could see he was now seriously in crisis and it was getting worse by the minute. I pulled out my magic bullet. I had a letter, signed by one of the senior Emergency Dr’s at this exact hospital, stating what was required.
The letter was given to us for use outside our own Health Area. It stated what He, as an ED Doctor, would want to know in the case of an emergency.
This was now an emergency.
I gave the letter to the nurse. She stopped what she was doing (about to draw bloods). She read the letter, recognised the signature and said she would be right back, she was giving the letter to the Dr.
She came back in less than 5 minutes with 200mg HC IV. YAY. But I shouldn’t have had to give them the letter.
The nurse then drew the bloods, Derek went for his Xray, and they did a heart trace. They also finally did his BP.
The nurse had also been given instructions to do a lay down, stand up BP to note any change.
The Xray came back clear, the heart trace came back clear, the bloods came back “normal”. I asked the Dr what the bloods actually were, she said “they were normal”. No, I wanted to know what the levels of sodium and potassium were. She said “normal”. I asked for a copy of the bloods because I knew what was normal for Derek, and what was normal for him, with Addison’s was different to that of healthy people.
She then told me his Creatinine was fine. I asked what it was because I wanted to compare it to previous Creatinine levels.
Well you could have blown me away with what she then told me. She had compared it to what it was in February 2013, and because it was similar to that, even though it was too high, she was happy because it wasn’t worse!
Feb 2013? Seriously? I asked her the number. She finally told me it was 115. This makes an eGFR (clearance in the kidneys) of 61.
I tried to tell her that that number was way off, but she wouldn’t listen to me.
In the last 18 months, his Createnine was 103-105, which gave him an eGFR of 67-69. To suddenly be down at 61 meant his kidneys were not working properly. It is most commonly caused by dehydration!
Good Practice with an Addisonian Crisis is to hydrate. Addison’s causes dehydration due to salt wasting, especially when sick. It doesn’t matter how much water you drink, in fact drinking copious quantities of water can make you more dehydrated. He was meant to be getting fluids, but he was never given any.
She still wouldn’t listen to me. They couldn’t find a reason for him going into crisis, but were surprised at how good he looked 20 minutes after the 200 HC. When I say good, he was able to open his eyes and speak again. He still felt like crap.
They kept him in hospital over night to observe him, but were not giving him any more high dose meds. Nor did they give him fluids. He was to take 10mg HC at 5 pm, and hoped that would keep him going over night.
Day 2 at hospital and I arrived in time to meet with the Dr’s. I found several things of interest in this meeting:
- There WAS something on the chest. It was pneumonia (which is what we thought).
- He was dehydrated, even though he was drinking water. It was agreed that he SHOULD have been given fluids when he arrived at ED along with the 200mg HC IV Stat.
- We mentioned that last time Derek was in hospital the Dr who was training the students another day told them that the main cause of AI was TB. This Dr’s response was very immediate, and was a very curse “in 3rd world countries perhaps”. I told him that it was a Dr at that hospital that said it, he turned round and told the students in no uncertain terms that that information was incorrect.
Two of the students were told they should come back to talk to Derek because he is probably the rarest patient they will ever come across in their medical career.
You see from this that it is a shared illness. When Derek suffers, I suffer. We are in this together.
So yes, I should be allowed to say, I Hate this Disease, I hate what it is doing to US, I hate what it has robbed from US.
We will both live to fight another day. I am now more determined than ever to get awareness of this illness out there. to make sure others don’t have to go through this in our country. Processes need to be put in place to make sure those with Chronic Illness get the appropriate help they need it, without having to “shout the roof down”. We all need to be able to trust in our health system, that they will know what to do when we rock up to A & E.