|"Get Well" flowers|
It was a Mayday call on a Monday May Day morning that brought about the ambulance ride, through peak hour traffic, to a major city hospital.
The ambulance officers were absolutely lovely–calm, kind and professional–as they always are when taking me with them.
There was no argument this time. There was something about their observations that they didn't like the look of, so they packed me up and off we went on that chilly, autumn morning.
Connective tissue disease (MCTD) / Lupus (SLE) causes lots of aches and pains.
I've experienced all sorts over the years, including chest pains.
The first ones caught me when I was as young as 12 years of age. The pains are usually momentary but even so, they can literally 'take my breath away'. Explanations for previous episodes include pleurisy and scarring on the lungs presumably from severe childhood asthma.
These days, I like to think I am well-practised in identifying the types and causes of the pains. They are usually benign and my typical response is to stop and wait until they disappear–they always do; except on this Monday morning.
Monday's pain took me by surprise and had a different quality in comparison to past sensations. It was quite disconcerting when it worsened with activity and persisted despite rest. Soon it began to spread so the ambulance was called.
When living with chronic illness, it is important to know how to manage it and when to get help. I've had arrhythmias and heart flutters in the past so my standing orders are to call the ambulance whenever I get chest pain. (In practice, I don't always call the ambulance–if I rang them every time there was a bit of pain, I'd never get away from the hospital–so far, so good; please don't tell my GP!)
Of course, an ambulance call is never undertaken lightly. With MCTD and SLE, my doctor's main concern is a complication called pericarditis (inflammation of the membrane around the heart). Lupus can cause a number of complications which can damage and weaken the heart.
|In the emergency department it's all okay|
because I'm still wearing my hairpin crochet cowl
to keep my neck and shoulders toasty warm.
Thank you to Catherine R.
for giving me the courage to share pictures
even when I'm not at my best–this is the reality of chronic illness.
on Monday, 1 May, the electrocardiograph (ECG/EKG) readout was inconclusive, suspicious and in need of further investigation.
Luckily, I was all rugged up from doing the 'school run' early that morning and I am glad I had my woollens with me because the hospital gowns are not warm at all! I refused to remove my cowl.
|Emergency department procedure no. 1:|
insert IV cannula now while veins are still good.
Convenient and time-saving in an emergency.
This little cannula gadget is a great little invention for administering intravenous fluids and medication etc. It can also be used to take blood samples. You can even 'piggy back' an extra port (like a double adapter) which allows the drip contents to go into one and an injection of medication into the other but all going into the same vein at once (only one puncture).
I was thinking to myself how convenient it is nowadays to have one needle for all of those jobs instead of receiving multiple jabs in multiple places like it used to be when I was a child.
|The view from the scarf |
as I get plugged into the heart monitor.
(Emergency department procedure no. 2.)
Cannulas can be a higher risk for infection and I think that's why the nurses like to minimise the use of it. It is important to replace the cannula every three days to prevent infection. (That's my understanding of it anyway. Any nurses out there are welcome to correct me if I am wrong.)
Meanwhile, my vital signs were being measured as I was being hooked up to a different heart monitor. This involved the application of new electrodes, informally called 'sticky dots'–essentially square stickers with a conductive sticky gel on one side to stick to the skin and, on the other side, a metal knob to which a lead can be clipped in order to send the signal to the heart monitor machine. Boy! Are those dots sticky!
The previous 'dots' from the ambulance needed to come off to make way for the new ones. Like removal of band-aids / sticking plasters I highly recommend the 'quick-rip' method! 1-2-3-rip! Phew!
The next three days were spent hooked up to a heart monitor and undergoing various tests including more complicated ECGs where more leads were added, not just to my torso but to my arms and legs too! Along with that came more ripping off of existing sticky dots because they were in the way of the precise positioning of the complicated ones.
I can't imagine how bad this would be for hairy-chested men to have so many sticky dots on and off all the time. Ouch! I wonder whether the nurses bother to shave the area before applying the dots.
When I said those babies were sticky, I wasn't joking. In the past, I've rarely had troubles removing them. The stickiness left behind is similar to the glue residue of a band aid that's been on for a while. Usually it dissolves easily and falls off as soon as you apply warm water and a bit of soap; no problem; but these heart monitor stickies were nasty. They took days to wash off. I almost gave my skin welts from the friction of rubbing the spots so hard with the face washer (and that was two days later)! It is two weeks since the sticky dots were removed and the square marks can still be seen on my skin!
I soon became well-acquainted with my constant companion, the spaghetti tangle of leads, which I soon learned to keep organised but it was annoying at night. I had a habit of turning over in my sleep and unconsciously disconnecting one or more of the leads, at which point an alarm would go off. Bye, bye, sleep!
|For the duration of my stay, these leads |
attached the electrodes (sticky dots) on my body to the heart monitor.
I soon became proficient at plugging them in and out
and knowing which wire to put where!
The most annoying thing at first was needing nurse assistance to disconnect me and reconnect me whenever I needed to leave the bed for the bathroom or when the alarm sounded. I was getting very frustrated with it all so I soon learned how to do it myself. If one lead came undone, I worked out how to clip it back on but two or more had me a bit flummoxed until one of the nurses taught me a little story to remember which colour lead goes to which dot:
White on the right (on the patient's right hand side)
Green grass on the ground (below the white)
Smoke (black) is found above fire (red)
Leaving the brown one to go in the middle.
My drawing is an approximation of the sticky dot positions. If I needed to stick the actual dots onto someone precisely, I would have no idea about how to do that to make sure it is in the right place but at least I no longer needed someone else to help me fix a loose lead. (I'm a very independent patient!)
Some people don't seem to mind being in hospital. They talk about it like a holiday break using the mindset of "no housework, breakfast in bed etc." but that is definitely not me!
Give me my own bed anytime. Fortunately, my family were able to bring in some essential comforts from home.
Thank goodness for small comforts from home!
These are the essential things that make time in hospital bearable:
- boomerang pillow to support myself sitting up and for sleep. It was particularly useful one noisy night because it meant I had two pillows–one to rest my head upon and one to cover my ears!
- transistor radio with earplug–the level volume of radio transmissions is good for screening ambient noises and the newsy programs keep me in touch with the happenings of the outside world
- mobile phone for keeping in touch with friends and family and for using the library's eBook and audioBook service. One can 'borrow' books remotely using a phone app without having to worry about fines for overdue returns because the app automatically 'returns' the file when the borrowing period has expired.
- my own food. It astounds me that after decades and decades, hospitals in this country still cannot cater for special diets. For three whole days I was served meals that I couldn't eat even though the staff knew I could not tolerate those foods! Luckily I had some home cooked leftovers in the freezer etc. which my family brought in for me.
For those of you who like to indulge in coffee and tea, scroll down quickly and look away NOW unless you want to be horrified by the next picture!
|Caffeine was not allowed. |
This sign was placed next to my bed.
Chocolate was also banned.
Lupus and MCTD come under the arthritic umbrella. A common adage with arthritis is "use it or lose it". Maintaining mobility is important to prevent joints from stiffening, and to maintain strength and fitness. The combination of inactivity and an uncomfortable bed left my body desperate for some decent physiotherapy.
The other rule was no caffeine because it messes with the heart readings and test results. That meant no tea, coffee, milo, chocolate etc.
The big bedside sign was annoying because the aftenoon tea trolley would come around offering everyone a cuppa with a snack such as biscuits, cake or fruit. The tea trolley people would see my sign and stroll right by, not realising that I could still eat an afternoon tea snack despite not being able to have their drinks.
I don't eat biscuits and cake but after getting useless meal trays, I was hungry and desperate for something healthy like a banana or apple. (Ironically, hospital food is not healthy.) I had to be alert to catch the trolley before I missed it. On the first afternoon, that particular trolley lady argued with me because she was convinced that she was not allowed to give me anything because of the 'no tea' sign. She reluctantly let me take a banana, mumbling,"I shouldn't be doing this."
|Oops! Jodie died …of boredom!|
So there you go…stealing from the tea trolley…cheap thrills for bored little me.
"Why were you bored,
I hear you ask,
"Did you not have any crochet
Oh yes! I had been working on a broomstick crochet cowl but it was finished as far as I could go on the first day so I had to wait until my family could bring in something else to crochet.
When I get bored, I get mischievous, hence the flatlining on the monitor! Don't you love the question mark?
|There's a 'stripe thing going on'|
–stripes in the scarf and stripes created by the coloured leads.
Perhaps this picture will inspire a stripey project or colour scheme.
Besides all the spaghettis and sticky dots, I went for a ride down to the nuclear medicine department for scans and that is where the IV cannula was used to inject radioactive material into my system to see what shows up on the PET scanner. Positron Emission Tomography. That's one I've never had before. Sorry I couldn't take photos there.
I'm always impressed by the capabilities of technology these days; these machines that can see inside us without having to open us up. There once was a time when the only way people knew how to find out what was happening inside was to open someone up. I'm grateful I don't live in those times.
It made me think about the amazing tech I have already seen and it truly is fascinating, albeit a bit of a worry to have experienced so much of it firsthand as a patient. Like Pat Benatar's notches on her lipstick case*, I tried to remember how many different scans or procedures I've had and, honestly, I lost count and forgot so I continued to lay still and tried to work out what I would put notches on, instead of a lipstick case, for all those encounters with imaging technology.
I was also grateful that the PET scanner was not as uncomfortable as the CT scanner or the MRI machine. (Computerised Tomography and Magnetic Resonance Imaging)
|This time Jodie's really gone … |
… home, that is!
By the end of three days, I had made friends with the other people in my ward bay and it was funny to be referred to as "our young lady"by the other patients.
I wouldn't say I was that young anymore but I didn't mind the sound of that word after my body has been feeling so old lately.
I suppose it was the cardiac ward, and most of the people with heart problems were much, much older than me, as one would expect.
When all the test results came back, I was allowed to go home. Hooray!
No sign of a heart attack, no major heart damage done, no immediate emergency so I was free to go.
Although the cardiologist could tell me what I didn't have wrong with me, he could not tell me the cause of the original pain so it looks like I will be back on the rheumatology roundabout again.
You would think that after taking so much blood, the hospital doctors would also be doing rheumatology studies with it (which I thought the emergency doctor had mentioned), but no, they only took cardiology tests. It is frustrating when doctors put patients into little boxes and can't or won't look outside that box. Someone at the hospital described specialists as "knowing more and more about less and less" as their specialties become more narrowly focussed and increasingly specialised.
Nevertheless! There's nothing so urgent than to get disconnected and unplugged, cannulas removed etc. and bag packed as when the doctors say you can be discharged from hospital.
Here's the happy ending to this chapter …
|A pretty posy from a dear friend |
greeted me on my arrival home from hospital.
* "Hit Me With Your Best Shot" hit song from the 80s by Pat Benatar
P.S. I worked out another acronym for MCTD after this experience and, on 3 May, added it to the comments in the blog post about the New MCTD Resource Page (5 October 2014).
Links & References
Life in the Fast Lane, web site, Australia / New Zealand:
- Burns, Edward, "The ST Segment", updated 17 April 2017: https://lifeinthefastlane.com/ecg-library/st-segment/
- Nickson, Chris, "Pericarditis", updated 2 April 2017: https://lifeinthefastlane.com/ecg-library/basics/pericarditis/
Lockshin, Michael, MD, "About Lupus: Caring for your Cardiovascular System", Lupus Research Alliance, formerly S.L.E. Lupus Foundation, 275 Madison Avenue, 10th floor, New York, USA, web page accessed 15 May 2017: http://www.lupusny.org/about-lupus/fight-lupus-body-and-mind/caring-your-cardiovascular-system
Lupey Loops blog, Australia:
- "Broomstick Rainbow Finished for You", 10 June 2017: http://lupeyloops.blogspot.com.au/2017/06/broomstick-rainbow-finished-for-you.html
- "Lost Without Lists", 2 September 2015: http://lupeyloops.blogspot.com.au/2015/09/lost-without-lists.html
- "Packing for Hospital", 7 December 2014: http://lupeyloops.blogspot.com.au/2014/12/packing-for-hospital.html
- "New MCTD Resource Page", 5 October 2014: http://lupeyloops.blogspot.com.au/2014/10/new-mctd-resource-page.html
National Resource Centre on Lupus, "How Lupus Affects the Heart and Circulation", Lupus Foundation of America, USA, medically reviewed 11 August 2013, accessed 15 May 2017: http://www.resources.lupus.org/entry/heart-and-circulation
Richardson, Catherine, Finding My Miracle: tackling chronic illness with joy and humour, one day at a time, blog, Canada, 2014–2017: https://findingmymiracle.com/