Disease is never a pretty thing. It becomes easier to deal with when one knows the end game, i.e. either death or a cure or a disability. But, when the outcome is uncertain – just being sick, long term antibiotic treatment, possible loss of a limb – all just play in your mind. And, if one has a vivid imagination, then all sorts of possibilities run through your conscious and sub-conscious at odd times during the day, but mostly when one is trying to go to sleep.
The story begins in December 2018 when I had a sack of fluid on my right elbow drained. Antibiotics were prescribed to prevent infection and I was told not to worry.
Only the sack returned in late May 2019, bigger and if you are the bug, better. A sample was taken for a culture to look for common bacteria. None was found. This time I went to an elbow specialist who drained it again, prescribed antibiotics and said come back in a month. In early July 2019, the sack returned, again larger and this time it was drained and a steroid injected to reduce the inflammation. More antibiotics and was told that if it returns, surgery may be required.
A month and a half later, the sack hadn’t returned but the skin where the sack had been started cracking and a pale yellow fluid, not blood was leaking out. Back to the elbow specialist who said you’re having a bursectomy tomorrow, we’ll remove any other diseased tissue and take a culture.
When opened my elbow, the bursar sack was infected but also the muscles, tendons connecting my hand at the end of the ulna bone just below my elbow were infected along with the periosteum – the hard outer shell of the ulna bone. He cut away the diseased tissue and bone and sewed it closed leaving four drains in my arm to allow fluid to come. Starting week three, the drains were slowly pulled out and by week six, they were all out.
Two weeks after the surgery, the first piece of bad news. The bacteria was identified as a member of the mycobacterium avium complex. Translation, it is one of those rare, hard to kill bacteria transmitted through bird feces.
You get infected if you are working in soil into which a bird carrying the bacteria poops and you get a fleck of dirt in a cut, your eye or mouth. You’re now infected with this slow growing, but potential deadly bug. We have a garden and flower beds so we’re pretty sure this is how I was infected.
The next steps were waiting for (a) the drains to close so antibiotics that could attack the bug could be prescribed; and (b) for the results of the susceptibility test. Then my infectious disease doctor could prescribe the perfect drugs to kill it which takes eight to 12 months.
More bad news. This family of slow-growing bacteria are incredibly antibiotic resistant and often develops immunity to antibiotics. Over the course of treatment, we may have to switch drugs once or maybe twice.
Three weeks after starting on the combination of three antibiotics, I had an allergic reaction to one. It was the one the susceptibility tests showed to be the most effective. It took two weeks of steroids and antihistamines to get my system back to “normal” so I could return to taking a different combination antibiotics in the beginning of November 2019.
Between my system fighting the bacteria and the mild side effects of the antibiotics, I run out of energy quickly. Somedays the area under the scar is red and swollen, some days it is not. Naps are a daily event and I’m lucky if I can make it to nine-thirty at night before going to bed.
Finally, I’ve started walking and am up to five miles. On days I walk, a nap is not an option. Next step is adding a light workout in a gym.
Next steps now are blood tests every month and another MRI/X-ray in late December to see if the damaged bone and muscle continue to heal. In late January, they’ll run tests to see if the bug has developed immunity. If it has, we go to plan B which is a different combination of antibiotics.
Until then, it is a matter of taking drugs, trying to rebuild my strength and stamina. That’s the easy part. The hard is dealing with a vivid imagination that runs with the worst case scenarios explained by both the surgeon and my infectious disease doctor. I will beat this, but it will take awhile.