No, Really. Stay Home.



A few weeks ago, I wrote a post about the theory about why it’s important to stay home when you’resick. Today, I’ll be sharing the real life story of what happens when someone who has RA and is on an immunosuppressant gets “just a cold.” 

Two weeks ago, I picked up a cold. It’s been going around in the agency that provides my attendant care and the staff had not been wearing masks. It was an annoying cold to them, but not something that flattened them sufficiently to stay away from work. My experience was very different.

It started slow for a few days, then arrived in full force, settling into both head and chest. I got a cough suppressant, but didn’t want to use it – I was coughing up gunk and knew it wouldn’t be a good idea to suppress that.

During the day, the incessant cough prevented me from doing much of anything. And it wasn’t just a regular cough. It was coughing fits, paroxysms of coughing that several times a day slammed my throat shut, making attempts at breathing more like a whistle. After two days of relentless coughing, every muscle in my back, shoulders and neck were screaming, my fibromyalgia in full flare. As were my elbows — moving my hands to my face to blow my nose four times an hour pushed both RA-damaged elbows to the limits of their mobility.

Friday, I went to see one of the partners in my doctor’s practice. He said my lungs were okay, then told me to keep up with the cough syrup and add my rescue inhaler. They did nothing.

Saturday morning, I got up after another night of not sleeping and by now, my voice was going, too. I could feel crud accumulating in my lungs, unmoving, sticky and clogging up my breathing. My brilliant sister told me about cough syrup with codeine and I limped off to a walk-in clinic. A young doctor, to whom I will forever be grateful, also prescribed a steroid inhaler, which would help break up the cough. Given how many times a day I was experiencing the pinhole breathing/whistling extravaganza, this seemed like an excellent idea.

Saturday night, I took a hit of the steroid inhaler. And spent the next half an hour sitting on the edge of my bed and coughing up gunk from my left lung, gradually clearing the area in the upper lobe that had been clogged. Then I took the dose of the new cough syrup and shortly thereafter told David “I am floating.” And then I finally slept.

Codeine is da bomb.

The next two days continued in the same vein. My nose was stuffed, which made me breathe through my mouth. This made my throat dry — I have gone through more lozenges than I thought existed — which exacerbated the coughing. Coughing made my nose stuffy, requiring three Kleenex to clear.

Yes, this is all very gross, but there’s a point to this story.

I continued using the steroid inhaler twice a day. Still, whatever had cleared after the morning dose, would accumulate again and I usually spent 3-4 hours every night trying to clear my lungs without much luck. Feeling your lungs fill up with a sticky mucus that is next-to-impossible to clear is pretty scary. I coughed and coughed and coughed, sounding like a car that won’t start. The laryngitis was in full swing and when I did try to talk, it made me cough more.

I knew that the steroid inhaler was the only thing keeping a bad case of pneumonia at bay and just barely at that.

I saw my own doctor a week ago and somehow, magically, still didn’t have pneumonia. She told me to use the steroid inhaler three or four times a day. This is when things started getting better, the more frequent use of the inhaler keeping the gunk in my lungs from solidifying. Well, I’ve continued to sound as if I’m sick, coughing, blowing my nose and my voice is, in the words of my dear friend Ken, “(hilariously) awful.” I’m still using the steroid inhaler, still taking the brilliant cough syrup and still have gunk in my lungs, but I’m on the mend. It’ll probably take another couple of weeks before I’m all the way to healthy again. 

This experience has also meant skipping two or three doses of Humira. I’m keeping my fingers crossed that there’s enough of it in my system that my RA won’t rear its ugly head again.
Having RA means that when I got sick, it hits me harder and stays around for longer. Being immunosuppressed triples that impact. This time, it was the quick thinking of a young doctor that kept me from getting dangerously ill from “just a cold.”

If you know someone who lives with an autoimmune disease and is immunosuppressed, please help keep them healthy. Stay away when you’re sick. And if you have an autoimmune disease, are immunosuppressed and the people around you don’t understand why you ask them to stay away when they’re sick, use this post to tell them why they should. 
   

Comments

Eileen said…
"He said my lungs were okay,"

Were they really though? When my husband goes to the GP with a chest infection they hear not a lot - and last year he ended up with pneumonia and it took well over 6 months for the fluid to clear (he does have pretty dodgy lungs it has to be said).
A week or so ago my granddaughter, who has severe brittle asthma was wheezy and they decided she did also have pneumonia. She'd already been asked to be one of the subjects for the Membership exams for the Coll of Paediatricians. Monday she turned up and 8 doctors filed in one at a time and listened. Not one of them heard ANYTHING. 7 of the 8 failed the respiratory medicine module.
These weren't baby student doctors. They have been fully qualified and working in the hospital for a few years at least. They need this component to work in general practice. Last year their colleagues, maybe them, came close to killing her by neglect - horrendous blood gas results were dismissed as "normal" and a nurse emailed the consultant because the juniors were being useless and she was so worried.
An illness caught from someone else who needn't have had contact with her - or Lene or anyone else who is ill - and it can be fatal for someone with a dodgy immune system whose doctors don't catch it in time. If only there were a vaccine for colds - but of course the anti-MMR and everything else people don't quite get the herd immunity bit do they?
Hope you are better soon Lene!
Caroline said…
My husband gets the sniffles and I get a double ear infection.... Life with RA is such a joy....
AlisonH said…
With lupus, I get a cold and then a cardiac cough sets in because a valve in the heart is under attack, my joints hurt, my blood pressure can fall way low, my thyroid goes bonkers, my GI tract stops processing food... I got up at church Sunday and moved away from someone who should have known better. I didn't take it personally; if they don't live with it they really can't know.
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Annette said…
I'm glad you're getting better at last. and I hope that the lack of Humira does not catch up with you. I've been off of it for the last two shots and hope for the best too.
It's a shock just how much sicker you can get with immune suppression. I'm having surgery on Tuesday and my husband has a bad sore throat so here's hoping I don't catch it. The surgeon would be so piseed off.
Grace said…
I got a bit run down last year, stopped eating and was curled up in bed with a fever and chills for a few weeks. I woke up one day with a sore ankle and saw a physio a couple of days later. I had seen a GP and they said I was fine. The physio took me to the emergency room himself as I had a major infection in my ankle and leg, and was already in renal failure. They never figured out how the infection got in, but I was in the hospital for a week and on antibiotics for three months. That also means I was off methotrexate for three months so my arthritis came back in full force. Nobody knows how I got sick, and I nearly died from having a suppressed immune system.
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So frustrating. 
I have turned into a germaphobe. Someone coughs or sneezes and I have a quiet moment of panic. Please don't get me sick, runs through me head. It may be just a cold, but for the immunosuppressed it can quickly become something much. much more.
Great to hear someone else understands. We are all in the RA boat together!
http://elephantintherheum.blogspot.com/2014/05/emergency-preparedness.html