There are two Hells of having cystic fibrosis.
There’s the first one, which includes all of the torture that comes from having the disease – the coughing up of blood, collapsed lungs, hospitalizations, sinuses filled with polyps, breathing treatments, and anything else directly related to the disease. It’s a long list and longer than I want to capture here.
And then there is a second hell, which is one created from the pain and suffering from ailments caused by being in the churn of the medical system and/or medical devices. Or, indirectly caused by CF. For example: Blood clots. That’s a good one. Cystic fibrosis didn’t cause my newest clot, a medical device I needed to fight CF did. Welcome to Hell 2.0.
And what about the gut buster known as C-diff? It’s a beauty caused by taking too many antibiotics and/or being in the hospital. How many times have I come home from the hospital feeling all shiny and new only to have C-Diff spoil my party? Still in Hell 2.0.
There are other side effects of being caught up in the medical grinder. Burned kidneys from the tobra, different strains of bacteria, nurses that slide into bed with you at night while you’re sleeping. You name it, anything goes in Hell 2.0.
And what about medical bills? Don’t they deserve a hell of their own? Nothing like phone calls to insurance companies and hospital billing departments. Ah, the empathy and understanding of a customer service rep when a claim has been miscoded or rejected. Collection agencies? Devil’s spawn. This is Hell 3.0.
We’re fighting on more than one front here. How many Hells do I have so far?
I have one more. There’s the hell when my wife comes in and lets me know she has an early meeting in two weeks and asks if I can bring our daughter to camp.
Then the asterisk leaves her gentle mouth – “if you’re around.” Not as in “if you’re alive” but rather “if you’re not in the hospital with a blood thinner enema running 24/7.” Ouch, that hurts. Planning two weeks ahead can be impossible in . . . Hell 4.0.
That’s it. End of rant. No fancy ending. Just the simple feeling I’ll never be able to communicate the complexity of this disease to anyone, even my close friends. But I’m grateful there are people out there who get it and donate their time and money to the fight. They’ll be going to nice cushy cloud palaces in the sky when they pass. Me? I’ll be frying in Real Hell where I have to do three treatments a day and stick blood thinner shots in my stomach and . . . hold it. Bloody hell, that sounds like what I have to do now. NO, I’m already there. Where’s the elevator outta this place?
[p.s. I do know things can always be worse. I’m just venting some steam, letting it out. It’s all good. This too shall pass.]