Category Archives: cystic fibrosis

One of the biggest decisions of my life

Posted on by
16

I’m stressing. I have to decide whether to change jobs. My answer is due Tuesday.

I’ve been with the same company for 15 years. It’s a large global company and one of the most recognized brands in the world. And it’s been great to me. I’ve worked out of my house and the pay and benefits have been fantastic. With cystic fibrosis, it has been the perfect job.

In return, I’ve worked hard for the company. It’s been beneficial for both of us.

But . . .

After 15 years in the same position, and because the headquarters is located on the east coast, and I’m on the west, the work has become tedious. And the process to innovate is painful. Creativity grinds to a halt. That’s the downside. It’s also not much of a challenge.

A few months ago, one of the smaller companies we hire to help us with large projects, approached me to work for them. As I was working on a major event at the time, and didn’t want to leave and hurt my current team, I postponed the conversation.

Well the project ended and they made me a formal offer this week. I have until Tuesday to decide. The pay is better and I get a nice signing bonus. And I can work out of my home. And the work is exciting and envelope-pushing. And they want me for my creativity, which appeals to me a great deal.

Yes, I have a tiny bit of ego in my head, I guess.

If it weren’t for cystic fibrosis, I’d jump ship right now. Take the risk. But the overall benefits are not as good as I have now. I still need to check out the health care in detail this weekend, but I do know the prescriptions will cost twice as much. And I have a possible pension I’m giving up by leaving now.

Will I really live to see that pension? Can I grind out the years it would take to get to retirement?

I’ll stop there. I like change. I hate big decisions.

To be continued . . .

Pure luckiness

Posted on by
2

Recently, while backing up in a parking lot, my foot hit the brake and the accelerator at the same time. My SUV lurched backwards quickly before I could step on just the brake. Luckily, no one was walking in back of me and I turned the steering wheel enough to miss the cars in the row behind. I was more worried about hitting people.

Luck. 

I wish my luck tranferred to Vegas and the Lotto. © Maksym Yemelyanov - Fotolia.com

I wish my luck tranferred to Vegas and the Lotto.
© Maksym Yemelyanov – Fotolia.com

It’s an uncomfortable feeling to look back on that event even though no one was hurt. The mental nausea of the moment overpowers, forcing me to think about something else.

What if there had been people there? How would my life have changed because of that mistake?

Sometimes near-misses from my past gang up on me, and I am forced to remember how lucky I am to be here, alive.

A heaping mug of gratefulness I gulp from.

I have a wonderful, brave and caring wife. A fantastic and intelligent daughter. A house. Two dogs. A job that allows me to work from home, knock on wood. A stocked refrigerator. Friends in person and online.

Clearly, I am living proof that life isn’t fair if I got this much.

Oh, there’s the cystic fibrosis. Yeah, that’s been, well, not good. No doubt. But I inherited a variation of it that’s allowed to me have everything and more in life. I have no right to complain about CF* – or anything else.

That’s it. Clearly today, I’m feeling pretty lucky and grateful to the Universe that bestowed it on me.

I know all of my good fortune could change from this point forward. However, looking back on my life, there’s no arguing that I’ve been a very lucky man.

****************************************************************************

*I reserve the right to complain during hospital stays.

One year of using a treadmill desk

Posted on by
12
I rotate through shoes each day. So far, they've lasted a long time. Walk, walk, walk.

I rotate through shoes each day. So far, they’ve lasted a long time. Walk, walk, walk.

Here’s the fact I like most about the past 12 months of walking 50 to 70 miles a week while working: One hospitalization.

Yep. In years past, that number would be two or three hospital stays in a 12-month period. And the only reason for the last visit in November was because I caught the virus from hell.

Luck? Perhaps. But isn’t luck something we make ourselves?

There’s no doubt my conditioning is much better. I don’t get tired when we’re out and I walk a long distance. I can stand while others with normal health sit. I can stand all day now.

(Knock on wood to all of this, as life has a way of punishing me when I write good things here. I’ll risk it.)

So, in the last 12+ months, I estimate I’ve walked across the country – 2,500 miles or more. I average 10 to 14 miles a day, and 50 to 60 a week. Sometimes more than 70. My record for one day is 18 miles.

Total steps in the last year: I’m in the millions. I wish that total was in dollars.

I do my treatments while I walk. I eat M&Ms Minis while I walk. I eat and spill yogurt while I walk. I’m writing this post while I’m walking. And so far I’ve done all of these without wiping out, though I’ve had close calls.

The one downside created by the miles is planter fasciitis. The reality: my feet hurt. It’s hard to walk barefooted now. But it’s been worth the benefits to my lungs and the endurance I’ve gained in my legs.

I’ve lost about 10 pounds, a lot of it around my gut. And I’ve done it without eating less.

I’m grateful I read the New Yorker article a year ago and learned about walking on a treadmill while working. It had never occurred to me that there was an alternative to sitting all day at a computer. Lucky me, I say. Lucky me.

 

I fly again, and live to blog about it

Posted on by
7

I can’t remember how long it’s been since I was on an airplane. 3 or 4 years? Last week, I left the state for the first time since we drove to Las Vegas. And it went smoothly. Too smoothly, as if the air-travel gods were luring me back to the sky.

It did help that I took an Ativan before leaving for the airport. But security was a breeze, though I did receive the usual X-ray rescan of my compressor and cold pack for my Cayston. Snowpiercer and the sequel to 300 kept my mind occupied on the flight, and I touched down in New Jersey ahead of schedule. Too smooth.

The rented O2 concentrator was at the hotel when I arrived. Smooth.

This is the O2 Concentrator to own. It's quiet as a fan and doesn't weigh as much as bulkier units. I'm looking into swapping my noisy home unit for one of these.

This is the O2 Concentrator to own. It’s quiet as a fan and doesn’t weigh as much as bulkier units. I’m looking into swapping my noisy home unit for one of these.

After a brutal week of intense 12-hour days of work launching our training event, and an episode of A fib one stressful morning, I flew home. Okay, so the A fib wasn’t very fun, but I know how to deal with it now. I told everyone I was car sick and waited for the double Ativan dose to kick in.

With the exception of some blood on the day following my return, I’ve been okay, knock on wood. I wonder if the blood had anything to do with my falling asleep on the plane and possibly destatting? Question for my doctor.

Though I didn’t cough up blood on the flight, or at my destination, I have no interest in getting on a plane anytime soon. I still hate the whole process of flying. And I only flew this time because it was summer. Flying in the winter? No thanks.

But at least this time I made it back without any stories of hospitals. That, my friends, is cause for celebration.

 

 

Giving it all to my job right now

Posted on by
Reply

I’m leading part of a large training event at work right now and its sucking up all of my creative energy to complete it. And I’m working long days and putting in hours on weekends to finish all of the deliverables on time. Luckily, I’m working with a good team.

I traveled by car last week and was so tired on day 2 of the training session, I looked right at someone I’ve known for 12 years and couldn’t remember his name. Just blanked. Name gone. Later, I had to Google, “fatigue and memory loss.” Yep, it can happen.

My memory improved with a good night of sleep. But why I was so tired was something most of my co-workers didn’t understand. What they didn’t know was when I go back to the hotel, I have 90 minutes of treatments to complete before sleeping. Then I get to wake up early in the morning to knock out another 90 minutes. So, working long hours and having CF is a bad mix on the road and equals limited sleep.

And I have more travel coming soon – on a plane.

I don’t remember the last time I was on a plane. It must have been at least three or four years ago. I’m going to give it a try again for this project that has consumed much of my time these days. I’m not looking forward to flying, and a small nugget of fear in my head grows larger as the day approaches. I will self-medicate for the flight.

One worry I have is that I now use O2 at night. I need to find a place that rents O2 generators in the other city. My center couldn’t help. So, I’m going to call the CF center where I’m going to ask if they can help.

That’s it for now. I miss blogging. But there are bills to pay and a 12-year old to send to college. No rest for the weary.

Hernia Surgery – Part Two

Posted on by
4

I was rabid when they wheeled me to a non CF-Floor. Tasmanian Devil, I was.

The “normal-people” floor meant I’d be forced to explain my meds and condition to a nursing staff lacking in CF experience, which is a pain worse than surgery. It’s one thing to be a mutant, another to have to explain it to others.

And being admitted late on a Friday night? God, no, not the back-up staff.

Having not anticipated the overnight stay, I was missing my med list and usual survival pack of enzymes, nebulizers, and other meds it takes the hospital a couple of days to get me.

The Universe spoke: “Let’s see how you do when I drop you into the middle of Hell with just an iPad mini, five bucks in your pocket, and a catheter in your bladder. Have fun.”

Survival mode entered. Not because I thought the hospital would kill me overnight, but because of what it might give me in the short time I was there. Or, what I like to call a medical “parting gift,” like C Diff or a blood clot. Or a new exotic bacteria. Or a virus. MERS anyone?

My mind swirled with the possibilities of what an open, oozing wound would earn me this time. Flesh-eating bacteria? Staph? MRSA?

Nurse, can you get me some scuba gear, a wet suit, and a spear gun, please?

Early that morning, they removed the catheter and gave me a window of six hours to urinate. If I didn’t, my pal Foley was going back in. Hell no.

I started drinking bottle after bottle of water, one after another, filling up. If another catheter was in my future, I was going to make sure that when they tapped me it was a Yellowstone geyser, not a trickle.

Luckily, the floodgate opened within the first hour and opened and opened and opened again, making me regret drinking so much.

Then it took another 5 hours to discharge me because once the hospital has me in its clutches, it doesn’t want to let me go. I’m one of its favorite patients.

*      *      *

It’s been two weeks since the surgery. I went back to work on the Monday after the surgery and learned why some people get a week off, which I declined. It was a grind of a week and each afternoon ended in a face-down nap.

I think I tore the outer incision a bit because it’s been oozing and I have to place gauze over it daily. Fingers crossed that it doesn’t become an infection.

I’ve been very happy since the surgery. And it’s not because of the giant supply of painkillers they gifted me – I’ve taken two. No, it’s something else.

It’s shockingly clear image of the man across from me who had cancer and a blood pressure so low I can’t believe he was living. And the person next to me who had cancer. And the woman in the waiting room whose husband had cancer.

I’ve been really happy just to be alive since then. Every day is a gift. Sometimes the Universe reminds me of that in the strangest of ways. But the signs are always there.

 

 

Hernia surgery – part one

Posted on by
2
The least exciting picture I've ever placed on my blog. Cork in a swollen tummy.

The least exciting picture I’ve ever placed on my blog. I call it, Cork in a blowhole. (I forget why the doctor in training wrote something on my stomach before the surgery. It’s not like I have a left and right belly button.)

Hernia surgery rule I didn’t know: you must be able to pee before they’ll let you go home.

Surprise.

So, for about four hours or so – time was a blur – I walked the floor of post-op, now completely void of other patients, and visited bathroom after bathroom, where I’d turn on the hot and cold water in the sink, then flush the toilet over and over, and hope to wake my bladder from its medicine-induced slumber.

At one point, while looking down at my left hospital-sock covered feet, a large puddle of water approached. The sink had overflowed and filled the bathroom. Oops. I blame the painkiller shot they gave me after surgery.

Hanging over me was the threat of a catheter insertion and overnight stay in the hospital.

Thus, with the clock ticking and the staff filtering out for their weekends away from patients with cancer and other surgery-required aliments, which made me once again realize how thin the thread of life and good health is, I drank bottles of water and juice boxes and talked to my bladder as if it were God, begging it to come through in the clutch and save me from having a rubber hose inserted in my penis.

Luckily, I had a heroic nurse who stayed after hours to give me a fighting chance. But despite that good luck, there was the opposite, like the fear tactics a less sympathetic nurse thought would help, like telling me how thick the rubber hose of the catheter was, and the giant poster in the bathroom stating how catheters are one of the leading causes of hospital infections.

In the end, I could not pee.

Urine fail.

Commercial Break: [Announcer Voiceover] “Say “hello” to Foley, the rubber snake plumbing pal you’ll wish you never met. He’ll enter what you always thought was a one-way pipe. You’re going to wish you were still asleep on the operating table because no amount of lube is going to help you ignore Foley’s presence in your most sensitive of body parts. You’ll scream like a baby every inch of the way.”

Yes, put down “Foley insertion” on my list of least favorite medical procedures – and the one that made me cry out loud.

But, best of all, thanks to my buddy Foley, I earned a night in the hospital, my favorite place in the entire world.

Thanks, Foley.

(Foley: You’re welcome, Jackass.)

To be continued.

 

Pre-op appointment

Posted on by
3

When I go to Hell, I’ll spend my days filling out medical forms. That’s right. One after another, all day long.

Please list your meds. (But I have a list with me.)

Have you fallen in the last 90 days? (Does being drunk count?)

Please list all past hospitalizations and dates. (Are you kidding me? I’m at the hospital where all of them occurred. Look them up. What do people here use these computers for? Solitaire?)

I’m a bad patient. It’s how fast and how little I can write on these forms to complete them in record time that matters.

I feel like I should get a pass by writing, “CYSTIC FIBROSIS,” across each page, which would result in the nurse saying, “oh, you have CF. Well then, you don’t have to fill out any of this crap. See you the morning of the surgery.”

So, next week the hole in my stomach will be gone. I asked my wife if she wanted to stick her finger in it before it’s gone, but she declined. Chicken.

The night before the surgery, I have to take a shower and then use special cleaning wipes to wipe down my entire body and kill the harmful pathogens. I hope they work on me. They should have given me extra ones.

I watched some youtube videos of hernia surgeries. Yuk. I’ll be asleep – thankfully.

I hope I don’t wake up with a window in my gut like a cow. That would be bad.

Until next time.

 

Work, work, work, work, work and other stuff.

Posted on by
2

I’m “first-drafting” this post just to get back in the habit of posting. I feel like I have to create a masterpiece each time with photos and it’s keeping me from blogging. It’s like going to the gym again – set the goal low and start over. 

This is my “going back to the gym” post to get in shape. 

Update time. 

My broken ribs are feeling better. No pain. 

The shingles have slithered back into their hiding place. Pain gone. 

I’m scheduled for hernia surgery in May, yay. Never was any pain. 

Work. Still painful. 

Of all the stuff I’m stressing about, work is number one on the list. It’s time to move on and having cystic fibrosis is definitely limiting my choices – choices I would have if I didn’t have CF, or if they’d found a damn cure by now. Oh,well, whining won’t help. My situation could be a million times worse. But it doesn’t give me magic powers against stress. 

Had a stomach virus this weekend. So did our dog, who barfed on our new rug, which was cheap because we have dogs that barf on rugs.

Why pay a lot of money for something a canine is going ruin one day. We have five rugs in the house and Cali managed to nail three of them, one of which is now in the trash, which tells you how bad it was. 

I’ve been watching too much TV at night. 

I did finish several projects on my never-ending list of projects. Happy about that. 

That’s life in Los Angeles, the Valley. It’s pretty good and I lived to see another day. No complaints. 

Oh, one more thing. I’m hoarding pain pills. Amazing how many the doctors prescribe, and I should get more after the hernia surgery. They’re fun to take and make my stress disappear, though it’s a really bad path to take and I don’t suggest anyone do this, especially since everything I say is a lie. I joked with my friend Larry that he’ll be reading a rehab post soon. Hmm, might happen. Anyone taking bets?

Until next time. 

The hits keep coming

Posted on by
10

Today’s my first day off of painkillers in over a week. Oh, how I miss them. Hello, aches and pains. Life is better on painkillers (kidding), though I have to say it is (kidding, I think). Okay, some frankness: I probably could have justified a painkiller or two today. It’s not as if the coughing didn’t hurt – it did.  I just felt I was enjoying life a bit too much in an altered state. So, I stayed normal for the day. Boring.

I was too lazy to shoot my own stash of these. Is it my imagination or do these pills look like breath mints? I tell you, the breath mint companies would sell a lot more of their product if their mints made you feel like these puppies make you feel.

I was too lazy to shoot a picture of my own stash of these. Is it my imagination or do these pills look like breath mints? I tell you, the breath mint companies would sell a lot more of their product if their mints made you feel like these puppies make you feel.

BTW, I have two hernias. One I’ve known about for a long time. It’s a large bulge in the middle of my upper abs and rises like an Alien is ready to rip through my gut when I do a sit up. It’s kind of gross but the doctors in the hospital have said if it doesn’t bother me then let it be. Easy for them to say. They don’t have a creature living inside their stomach.

However, now I notice a bulge from my navel when I cough. So, it’s off to the hernia surgeon next week.

Hmm, broken ribs, a couple of hernias? Winner, winner, chicken dinner – in the hospital. 

It seems to me that one day . . . possibly . . . maybe . . . it could happen . . . I might cough so hard that the upper half of me just explodes. Boom. Bang. Explosion cough.

One minute I had a midsection, the giant cough happened, then my office walls were covered in blood, mucous, and organs, with a few ribs sticking through the drywall. Watch as my head rolls off my treadmill and is buried in the backyard by one of my Labradors.

And there’s more.

I took another hit recently when I found out the drug study I was supposed to be in got cancelled. Four months of waiting down the “CF sucks” toilet. Flush.

It took my breath away when I found out, and my daughter and wife cried. I think they felt worse than I did. I guess it’s why I never mentioned it on this blog. I kind of expect good things to fall through sometimes and I thought it would be bad luck to talk about it. It didn’t matter in the end.

That’s it for tonight. It’s broken ribs, shingles and hernias week at my house and we’re all celebrating, though clearly I have been celebrating more than anyone else thanks to my pal Norco 5/325. Yeah, baby.

Life is still good.