An article from the August 1998 Newsletter.
Three weeks ago I had my first Addison Crisis. I have had Addison's Disease for 6 years now and believe I may have had a minor crises before the disease was diagnosed, but nothing like I experienced early Monday morning three weeks ago. Peter and I had been out to the movies late Sunday afternoon and I had talked to my friend about the new ABC show 'Sea Change' and the movie on that night 'Dead Man Walking'. After watching the movie and having read in bed for about an hour I started getting these creepy feelings in my stomach, thought nothing of it but about 12.30 am I had a terrible attack of diarrhoea and about an hour after that I started to vomit and couldn't stop.
Going through my mind at this stage was the fact that I had been told and had read in our newsletters that this kind of problem meant a visit to the hospital. I thought I would be OK and I kept checking the clock thinking, will I have got this far soon it will be morning and then we can call the Doctor . and then head off to the hospital!!! By 4 o'clock I knew I was in trouble, I was shivering so badly and was feeling very cold despite having the electric blanket on, a heater in the bathroom, dressing gown and warm winter pj's. After ringing my local General Practitioner , who didn't mind being woken up at 4am, we rang an ambulance. When the paramedics arrived I found out that they were not able to give me the adrenalin that I needed (which by the way I didn't have because what I had had, recently expired and I had only just thrown it out!).
As you can imagine my blood pressure was pretty much non existent, I was badly dehydrated and they needed to stop me from vomiting. Getting a line into my hand was difficult so another ambulance was called. I was feeling really terrible and just wanted to get to hospital as soon as possible. There was no way I could walk, so they had to carry me - drip and oxygen - up our very steep driveway, they couldn't get a bed down. All the way in the ambulance to Royal North Shore Hospital [a major teaching hospital in Sydney, Australia] I could hear them talking about Gosford - I thought surely they aren't going to take me there - I would never have made it! I got the last bed in Emergency, they were quite reluctant for me to have it, can you imagine that!!! (Emergency was then closed 'till 12 noon that day - unbelievable!).
I am not sure how long it was before they got the medication into me, it wasn't straight away, but it's amazing how much better a little fluid and not vomiting am more can make you feel. It takes a little gentle persuading before the Doctors believe you have Addison's and actually do something. Although, luckily for me, they had had another Addison's patient two days previously. The Interns have not heard of it so asked me lots of questions. After receiving a large dose of steroids, I began to feel better within a couple of hours. One of the Doctors tried to tell me that my 'crisis' hadn't been brought on by a gastric infection, that for some reason I had either forgotten to take my medication or something else had happened. She wasn't sure which and that this had been the consequence! I told her that I have had minor bouts of diarrhoea before because I have either been very 'low' or had had a cold and had not taken more medication, so I knew this was completely different. Anyway, bacteria was found in the urine and stool which confirmed that I was right.
I found the nursing staff in Emergency were very dedicated to their job, working under quite stressful conditions, but I can't say the same for the Doctors. One in particular, decided she needed to have blood gases, which means getting blood from an artery. After her fourth attempt - in the same arm - and after hitting a nerve which sent me through the roof, I said that was enough. At this stage my blood pressure was still very low and it would have been very difficult to find an artery. She knew that, or if she didn't she should have.. My arm is still swollen and sore. Maureen told me later that it's a good idea to tell them to wail 'till your blood pressure improves before taking blood gases (Do they need to take blood gases, and what's the reason for doing so?). I spent most of Monday in casualty and the word went around that they had an Addison's patient 'in-house so, every hour I would get a Doctor or two asking me if I could answer some of their questions. it got very tiring after a awhile. (I was the second Addison's patient at Royal North Shore within two days. Is this disease becoming. more common. and how can we let these people know about our group?) . About 4 o'clock in the afternoon I was moved up to a ward, managed to nibble on some food and that evening they took the drip out and I was able to go to sleep - if that is possible in a hospital! My sugar levels were checked on a regular basis, plus blood pressure. and by the morning I was feeling a whole lot better.
After seeing my endocrinologist he said I could go home, I thought I was fine but was feeling very teary. When I eventually got home after waiting for a cab for three quarters of an hour I walked in the door and immediately burst into tears. I struggled with these feelings and a very sore shoulder before ringing Maureen, knowing she has been through this many times before. How reassuring it was to talk to her and to know that what I was feeling was 'normal' after having had an Addison's Crisis.
I have been surprised just how much it drained out of me and it has taken a good two weeks to feel I have my energy levels somewhat back to normal. I have gone back to work three days per week. but have had to pace myself. I have felt quite depressed and have lost a lot of my confidence in terms of managing my disease. I had prided myself on not having had a Crisis before and I expect some of you are saying I was very lucky. Still, I can't believe just how quickly it all happened. but obviously it was something I needed to go through and now Peter and I know how important it is to get to a hospital in that situation.
For me, there are a few important issues I think need to be followed/answered:
l. Always have adrenalin and syringes so that you can inject needed medication as soon as possible. This does not mean you shouldn't go to the hospital - you do need to stop the vomiting - but it certainly stops you from reaching the critical stage like I did. (I would like to be shown how to use this equipment as I am not sure I would be able to do it myself if I had to, perhaps husbands etc. need to know how to do it too).
2. Nobody looks at your medical bracelet, maybe be they would have if my husband hadn't been there and I wasn't able to communicate - this surprised me because I thought they would automatically do so.
3. Paramedics won't readily give you the adrenalin dose you know you need. Why not?
4. Don't let Interns try to take blood gases from you so early after your arrival, I believe I may have nerve damage to my left arm. It is still swollen and Maureen tells me that the same procedure has led to permanent damage to her thumb.
5. The Interns are not sure what levels of medication to give you, and I had to monitor that in the hospital. They told me that after I went home the next day I was to continue on the same levels of medication I was on before coming to the hospital. I decided not to do as they said and continued at double my normal dose for another three days, slowly reducing it from there. I en glad I did, I just can't imagine how I would have gotten better especially as when I went to my local General Practitioner on the Friday, a week later, my blood pressure was 80/60!! And I know that for a few days after that my blood pressure was still low - my head was floating in the clouds.
(People just don't understand how you can stand up with low blood pressure, but you get used to it don't you!)
