Snappy title. Not a murder mystery. Consider it a medical mystery. One you may find important in your life.
Meet “Katie.” She looks fine when you meet her. Underneath that big smile and wise-cracking exterior beats a heart with too many nerve centers so it can beat a syncopated rhythm or start going lickety-split in, well, a heartbeat. And then there’s the problem with the valves. She needs a valve job sometime in the near future. Because of these problems she has other problems – like excruciating headaches. But there is no label saying, “I’m fragile” anywhere to be seen.
When you shake her hand you might think she’s being ladylike, but the reality is that her weak grip is a manifestation of the peripheral neuropathy that’s slowly eating away at her arms, legs, hands, and feet. She can exercise morning, noon and night, but will never gain muscle mass. She will however, be sore and exhausted. If you watch her hands you may see her fingers tremble. She’s not nervous, that’s the neuropathy.
She watches her kids play, but rarely joins them. She can’t run. She can break an ankle by tripping over a tree root or stepping down off a curb the wrong way. In fact, she broke an ankle the first time when she was in grade school. The last time it was so bad she had three surgeries to fix it. It is still not fixed. But you probably don’t notice it because she walks without complaint, although slowly. She always wears pretty flip-flops – because her feet don’t fit in shoes because of the deformation that still needs to be surgically fixed. But you are unlikely to be staring at her feet while you ae paying attention to her laugh and smile.
Katie is sick – a lot. She’ll be out and around with a massive migraine to take her kids to sports and you won’t know. But we do. That’s the problem. To the family, Katie being sick is normal. To Katie being sick is normal. Life revolves around heart palpitations, headaches, surgeries. walkers, crutches, visits to the doctor, blood draws, CT scans, MRIs, X-rays, and visits to the hospital.
If someone else had seen Katie turning bright red all over they might have thought it was something other than having the heating pad on too high. There were signs – a hard time breathing. (Was it the asthma? Get an inhaler. Is that better?) Hot and sweaty and red – but it went away – and then came back. (Cold? Flu? Actually, neither.) Take a good look, because a tidal wave of misery can be coming.
Finally, Katie, who is sick of doctors and hospitals, went to the hospital. Thank God she did. There a miracle happened. An ER doctor didn’t brush her off as a chronically ill complainer. He had a hunch why she was sick. He had her transferred to a state of the art medical center where they realized that Katie was close to death.
No one has answers for how Katie got both bacteria and fungus in her blood. Was it from one of her surgeries? There have been several recently. Was it from the cellulitis she got from a flu shot? The cellulitus from the foot surgery? From the Port? (the port had to be removed). After a CT scan found the tumor in her upper spine and she started losing body function there was a surgery to remove it, but it couldn’t be removed. So they took out spinal bone instead to stop spinal cord compression.
They might never have gotten that far if Katie died from the effects of the infections in her blood. The list of complications from that is long and scary. The surgical risks were scary too. Life for Katie is a roller coaster high point to a screaming low after another.That’s why people who are used to seeing someone with chronic illness can miss things. And those missed things can be fatal.
The lesson I learned was that if a symptom in anyone else would concern me – the next stop is the hospital where they can draw blood, do MRIs on the spot, CT scans, and x-rays. Over the years it became too easy to see all problems as a chronic illness problem rather than a life-endangering acute crisis issue. See your primary care for routine medical care.
A lot of my readers have chronic illness. It is easy to feel like that super-low you’ve been facing for a few days is just another crappy day. Then again, it might be something like Katie is facing. Want to take the chance?
I told Katie that the next time I see something that would scare me in anyone else I am taking her to the hospital – period.
I’m HoH – almost deaf – but I can see. I knew she was sick and I knew the symptoms were out of the norm.
I want you to look at yourself in the mirror – especially if you have chronic illness – and ask yourself if this is different from what is usually going on. Then look at your loved ones with health problems and resolve that if they were anyone else and you had the power to get them medical care – that you do whatever is necessary to get them that care.
Katie’s saga continues. We’re fortunate it does, although it is a painful continuation.
Take care of yourselves. Don’t brush off pain in the chest and difficulty breathing even if you think it is the “same-old, same-old” whatever it is that gives you grief. If you start having strange symptoms like turning red all over and dripping sweat for no reason at all – get medical care, for goodness sake!
Be well. Stay well.