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.
Fox thought these shots were called "Love a Fox" and stole them from me. Had to break it to him that they were generic "Lovenox." Silly Fox.
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.]
The Unknown Cystic 
Love this rant because, ugh, I can relate 100%. It sucks having to live life in weekly segments, or segments between clinic appts, not knowing if a hospitalization looms around the corner. I find that CF completely takes over the calendar of events of life, dictating what you can and can’t do. 😦 Throw in the surprises along the way, and the calendar is full of crappy unplanned appts, medical procedures, tests, new problems, blah, blah blah, and the list is never ending.
If you find that elevator out of bloody hell, please share, I’ll jump onboard. I have a feeling the it will fill up fast. 🙂
Jodi,
People outside CF will never understand what it’s like to be plucked out of your life every few months for horrific hospital stays. And it’s so hard to plan ahead. How many people have wonder if they’ll be able to attend a concert or sporting event a couple months down the road because they may be in the hospital. Very frustrating.
You can absolutely jump in the elevator out. It’s a big elevator.
Thanks for the comment and visit,
UC
Hey Bro,
I’m sorry you are in Hell 4.0. What we need a a Groupon voucher for one week off from CF B.S. and a complimentary pudding…or McGriddle in your case.
All joking aside, I’m sending you tons of positive energy, M’boy. I also apologize for my lack of comments lately. I’ve been out of the loop myself the past few months.
Peaceful things.
Joshster,
I hope you’re hanging in there. I read your out of the loop post. Thanks for the good vibes. Much appreciated. Speaking of McGriddles, I got a shitty McGriddle today and couldn’t eat it. I have it in the bag right now and am bringing it back to them tomorrow for a free one. Am I crazy? Yes. And pissed. No one fucks with my morning McGriddle. No one.
That’s it. You’re the only one who understands and why I can share my McGriddle hell story with you.
UC
You explained CF hell so perfectly!!! As much as I love this post, hell truly is… well it’s just hell. Thinking of you. I’m not so far away, so i’ll send some celestial vibes in your direction 🙂 Our ports will be beeping and glowing!!!
Stina,
Thank you for the good vibes and comment. The real hell will be a vacation in a warm destination for me when I get there.
F’ing port. This clot suckkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkks.
Hope they fix your sinuses soon. Not sure why they’re letting you suffer so much. Get in there and clear the damn things out, doctors. Feel better.
UC
You said it, buster! CF is not for sissies. It makes growing old look easy. I’m sorry you’re in a bad spot but you’ve been there before and bounced back. Hey, I even ate a McGriddle today in your honor! I’d never heard of them until I met you. 🙂
MAL,
I’m glad I was the one who convinced you to eat a McGriddle and get one step closer to hardening of the arteries. Only special people like me can eat McGriddles and withstand the onslaught of fatty deposits in their arteries. Be careful. Your’e playing with fire.
UC
sometimes I think it’s amazing we’re not all engaging in substance abuse to cope with CF. oh wait, I may do that with bacon…
Dr. Nanos,
I guess it depends on your definition of substance abuse. I’m pretty loaded up on meds, but I know what you’re talking about. I do wonder sometimes if I should eat mary jane brownies. It never hurts to laugh and that would do it – big time. bacon mary jane brownies would be okay too.
UC
Bacon brownies… Possibly genius! I might have to give some “clean” ones a go. But maybe have a frosty brew with them.