Well, it was bound to happen at some point. INFECTION WATCH: CODE AMBER!
As those of you with a compromised immune system know, the biggest threat to my health right now is picking up an infection while my immune system is low. I have had the flu shot, and am being treated for TB (just in case – seriously, my doctors are super thorough), and take a special antibiotic for a specific type of pneumonia I am at risk for (again, just in case) so my team of awesome doctors has most things covered. My immune system is compromised due to the medications I take to treat dermatomyositis.
However, I GOT ON A PLANE recently! I know, bad idea. But, needs must. Life doesn’t stop just because of disease. I probably should have worn my patient-zero mask and done more hand-sanitizing, but future Lizzy will be wiser and less care-free.
With a compromised immune system, an infection can get out of control fast so I need to be responsible and stay on top of these things.
I don’t feel so good
I went to brunch with my ladies on Saturday and was a shaky mess. I really felt out of it. My head felt like cotton wool, and I could barely keep my shaking hands from spilling my drinks. I thought I was just tired, so I went home that night and rested up.
I ended up sleeping for over 16 hours which, even for me, is a record! The odd thing about getting an infection whilst on steroids is you might not get a temperature, so how are you meant to even know you are ill enough to bother a doctor?! Well, it helps to have nurse friends! I mentioned to said-nurse-friend that my heart rate had rocketed to the 120s and at one point was even sitting at about 140 – apparently this isn’t good and she advised I get my butt to ED.
ED was actually not as much of a pain as it is often advertised
Into an Uber I hop, and arrive just as a patient is running out of ED screaming “I just want a cigarette”. Code Grey sounds on the tannoy, and suddenly a team of about 16 doctors, nurses and security come to retrieve her. Great, I think. This is going to be fun.
They get me into triage, and the lovely triage nurse marks me up as urgent (thank you lovely triage nurse). While I am waiting in chairs, there is a child screaming and being non-parented. I understand you are in the ED, you are probably unwell. But the Mum is there with the Dad and it is the Mum who is ill (they were in front of me in triage).
I last about five minutes tolerating this small screaming demon before shouting at them to SHUT UP! “Look, there are sick people, someone over there is sleeping, keep your kid quiet please” << ok, not my finest moment, but even my sunny demeanor has its limits. The Mum and Dad look #affronted and the Dad makes this big speech about “someone clearly thinks this is a private room so we are going outside” and makes a big show of going outside with smol-demon. Good riddance. It isn’t a “private” room, but neither is it a playground. Why do parents assume their kids can run riot everywhere and no one will say anything? Note: I am turning into my mother.
Luckily, a few mins later, I’m brought into the ED cubicles. I’m made to wear a patient-zero mask in case I have flu. They do this magic swab test that will tell them in less than an hour whether I have flu – how clever is that? They also take some blood and decide *not* to cannulate me (yay), although it does take the nurse two attempts and a lot of prodding to get a vein (I am a notoriously difficult stick for some reason). Again, everything was marked as urgent so I could (hopefully) get out as soon as possible.
The doctor sees me almost straight away and lets me know that the plan is to check for any infection, but if there is nothing showing in my blood work or swab, I can go home. I also get a chest x-ray done, and there is much debating whether to give me a pregnancy test and whether to do the chest x-ray. I convince them that there is zero chance I am pregnant, so they eventually agree to the chest x-ray. They then leave me with two blankets, my patient-zero mask, and some OJ, and let me sleep while the results come through.
So, I sleep. I wait. I’m feeling pretty crappy, so they give me some panadol, which helps. Eventually, the test results come back: good news! No chest infection, no flu, and no signs of infection in my blood work. Diagnosis: I have a cold and am a bit run down. Home, bed rest, fluids, panadol. I feel like a bit of a hypochondriac coming in, and say so to the doctor, but they tell me it was the right thing to do. With a compromised immune system, an infection can get out of control fast so I need to be responsible and stay on top of these things.
It seems silly going into ED for what turned out to be just a cold, but such is my life now. You never know if it is going to be a cold, or something worse.
Once given the all-clear on serious infections, I make my way home – my bed is calling me!
ED – knowing when to go
DISCLAIMER: I am simply a “doctor” of books and not an ACTUAL DOCTOR so take none of this as medical advice – just tips from a fellow spoonie
So, my immune-compromised friends – when do you know when to go? Here are some tips:
- Know your own body: get a sense of when you are feeling worse than your normal condition warrants. How mentally with-it are you? Do you have more aches and pains than usual? If you are feeling worse than your normal base-line, something might be going on…
- Check your temp once a day: know what “normal” is for you, even while you are on steroids. If your temp goes above normal whilst on steroids, or shows an upward incline, this could be a sign of something going on…
- Get a cheap heart rate monitor and, again, know what normal is for you. Mine sits at around 100 while I am on steroids. Don’t over-monitor yourself, but keep an eye out as a higher than normal heart rate could be a sign of your body struggling with something.
These are all things you can do to monitor the acute signs of infection. Of course, you should also be monitoring your weight regularly, particularly if you are having trouble eating, or are at risk of cancer. A rapid drop can be a sign of something more chronic happening and you should probably go see your GP.
Bed-rest and recovery
Since Sunday’s trip to the ED, I have done nothing but sleep. Clearly my body is in need of rest. I have been drinking a ton of fluids and just taking it easy. I have an air-tasker coming this week to clean for me because I am learning that I don’t have to do everything. The plan this week is to do pretty much nothing and drink lots of fluids. EXCITING!
It may only be a cold, and for many non-chronically-ill people, it wouldn’t stop them from doing much, but for my already weakened body, even though it isn’t a serious infection that would necessitate more drugs or a stay in the hospital, it has knocked me FLAT OUT. I seriously have no energy, on top of already not really having any energy. I haven’t slept this much in years. But, this is why I am off work. If I get an infection or even a cold like this, I can rest. I have no excuse but to stay home, sit on the sofa, read Twitter, and watch Netflix.
Given how rubbish I feel with just a cold, I am slightly terrified of what a more serious infection will feel like, but that is a problem for future Lizzy. For now, bring on Season Three of ‘The Crown’.