Tag Archives: cystic fibrosis

The marshmallow thief and other snippets from life

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I was standing in the living room this week when Cali ran out of the kitchen with a large bag of marshmallows in her mouth. My wife had left a cabinet open and opportunity presented itself. I felt like a shortstop fielding a 37-pound ground ball. I saved the run from scoring.

The innocent face of the thief

It turns out she’s quite the puppy thief, this one. Anything she can put in her mouth goes in her mouth. But there’s some mischief mixed in.

My daughter was on the floor drawing and Cali ran into the kitchen, grabbed the bag of markers and ran out, which irritated my daughter, who didn’t see the humor in it. Especially after the 5th time Cali tried it.

Cali has become quite the fun pup, and our “Socialize California” mission is paying off. (Does that make us Socialists?) She’s much more confident now and sounds and barking dogs don’t phase her as much. She’s doing great in puppy classes. We feel proud of the work we’ve done with her. Now we just have to cure her of her thieving ways.

****

Cali got sick this week. Diarrhea sick. I got sick at the same time – my own stomach issues. Coincidence? After a chicken and rice diet (Cali), and Pop Tarts and Popsicles (me), I got better but Cali didn’t. So it was to the vet for a sample from her back end, which the vet staff gave us some hell about, as they wondered why were testing her if she was not showing any other signs of illness, and she had had the stool test a month ago.

Ah, summer

Because we’ve owned dogs our entire lives and something is not right, okay? Shut up and take our money.

The vet’s office called the next day to tell us the test was negative. What?

We were happy it was, but confused. So, I called the vet just to see what else it might be. When he called me back, he said the second test was positive for giardia. Vindication for us, antibiotics for Cali.

****

I had a clinic appointment this week. My PFTs were up, but not back to the pre “flu from hell” levels. I felt happy and sad. Happy they’re better, but sad I may not get back that lung function. I also need sinus surgery. We’ll plan it the next time I go into the hospital. It’s like having your car repaired – making a trip in just to fix the door handle is a pain. I’ll wait until I’m due for a major service to repair everything.

****

Work has been nuts lately. So, I’ve felt like reading more than writing. I just finished Freedom, by Jonathan Franzen, which took me a while to get into but was excellent in the end. But I like Franzen’s other book The Corrections better. I have three or four unread books on my Kindle left to go this summer, though “summer” may be too kind of a word to describe this season, as it’s been warmer in Alaska than here in L.A. I’m writing this while wearing a parka and using icicles and flavoring to make homemade Popsicles.

Stay warm.

Cali throws us a bone

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Friday night, with our daughter at her first slumber party, my wife and I  sat on opposite ends of the kitchen floor and discussed the skittish pup. We were tired from a stressful workweek and at wit’s end with Cali California. Though we’d once trained a headstrong dog, and built up the confidence of our late fearful, unpredictable chow mix, and considered ourselves knowledgeable about training dogs, Cali had us stumped.

We questioned our ability to train and pick pups, as we didn’t see the skittish tendencies when we chose her. And we wondered if we kept working hard with her, and put the time in, would she improve – could she improve?

Despite both of us staying home the entire week, we’d made no progress, and, one might observe, gone backwards. And we sat there defeated, disheartened by the 32-pound sleeping pup.

Cali is more relaxed now and less spooked if you approach her

How are we going to fix her? Us?

Rule #1: Never blame the dog.

Cystic fibrosis and hospitalizations entered the conversation, of course. What if this happens? What if that happens? How can we get through these situations with this pup?

How did the dream go south from a week ago? What did we do wrong?

And then Saturday came. And with it a transformation. Using treats, we got Cali around the block twice. And after spending an hour in the backyard with her, she calmed down and didn’t bolt at the sound of a car door shutting or a distant bark.

I hung out with her at night on the patio.

Calm, everyone’s calm, Cali. You can be calm, too. It’s all good. We’re just hanging. You’re safe. 

Then Cali gained some confidence playing with our other dog. And her tail wagged more. And she blossomed into a happier, playful member of our pack. And our stress melted a bit.

We have a trainer coming tonight to give us some tips about shy dogs. We are not taking any chances with Cali. We don’t want to make any training mistakes and have her regress or keep her fearful ways. The progress she made was the thin sliver of sunshine we needed to regain hope that better days are ahead, and the black dog we thought we’d discovered at the breeder was the one sleeping on our kitchen floor.

Now we just have to be patient and let Cali come to us.

Puppy kisses are fleeting

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Each hospitalization forces me to ramp up the fun and happy moments when I’m not in captivity. The clock is ticking. And I’m doing my best to fill our days with activities and concerts and you name it. If it sounds fun, we do it. I cracked open the piggy bank and put the cash collecting almost zero interest to good use.

And our most recent purchase was our best. We are now proud owners of a black lab puppy named California, or Cali for short. Or Cali California for long.

Play, play

We wanted to adopt a mutt, but we needed a dog this time we knew would be predictable, fit in well, and make life easy on my wife when I’m in the hospital. And I’ve wanted another black lab for a long time. So, I put away the guilt of not adopting, and the jealousy of not having cool, hip dogs like Dr. Nanos and Jessica’s, and found a local Labrador breeder.

As I mentioned in the previous post, my wife and I wanted an older dog to fit in immediately with limited work. My daughter wanted a puppy. So the universe guided us to a 15-week-old black lab – older with a larger bladder and less nipping. And she is perfect for us. A little on the shy side, but mellow, curious, well-socialized, and subservient to our yellow lab.

We feel so lucky to own two Labrador retrievers; a dream fulfilled.

The arrival of the pup this weekend gave us many laughs and “ah” moments and reminded me why I put up with daily treatments, IVs, hemoptysis and the hellish moments and stress of CF to gain another day.

Because when that day is like the one we had when we brought the puppy home, and the puppy kisses we got, and the smiles on our faces, and the fun of buying pet supplies and dreaming about the future of the new dog, and the sheer joy of living in a moment where nothing stressful exists, well, it makes the experience of cystic fibrosis bearable.

I thank the universe for dogs.

Letter To God, 042411

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Bubble in the sky, 2011

Dear God,

I don’t believe in you. But I believe in the right for others to believe in you. But I don’t. Believe in you.

My wife and daughter do, however, believe in you. So, for their sake, I’m hoping I’m wrong and you do exist. I want happiness for them more than anything else I can think of. So, shoot a lighting bolt down from an empty sky and turn me to dust. And for them – protect, embrace, hug.

When I realized what this disease was about, and the lives and suffering it has caused, I knew I could not believe in a god that created cystic fibrosis.

I must have done something wrong in a previous life. I understand.

I am lucky. I understand.

I have everything I need. I understand.

I am so close to the perfect life. I understand the asterisk.

What I don’t understand is how you could design a disease that harms children. That takes them away from their parents. That makes them suffer so much. You are no god of mine.

You owe us a cure, or a remedy. A lifespan “increaser.” A stress and exacerbation reducer. And you owe it to us now. I have a feeling I won’t be on the list for it after this blog post, but I can live with your decision, or maybe I won’t. But if you give it to everyone else, good.

I suggest you send a spark to a scientist or doctor or mother or father or brother or sister, or anyone who will take that spark and put in a pill or nebulizer and make magic happen. Magic, magic, magic – it’s the least you can do.

If I read another blog post where an innocent baby, child or young adult has spent a night in the hospital because of this disease, I’m going to transform into a Phoenix and scorch the heavens until they are clean of anyone at your dinner table who thought CF was a good idea. It wasn’t. It’s not. Take it back.

It’s your turn to make it right for those still here. It’s too late to help the others. You’ll have to answer to them in person one day. And I hope you have a good excuse. You’re going to need it.

Please protect those who fight this disease, and the ones who love them. They demonstrate true courage and bravery every minute of every day, and never make the papers with “Hero” next to their names. They should. I hope you have a good reward for them in the end.

I expect mine will be a pile of coal, a shovel, and a furnace.

UC

I am Jenga Man

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This is me years ago. I have a six pack and a block missing upstairs.

After 15 days of the greatest fun I could ever imagine, I’m home from my vacation in the hospital. I have the deepest Tobra tan ever on my kidneys. Too bad they don’t show.

I’m surprised I survived this jaunt. I am, really. When my multi-resistant bacteria fire up, they do a number on me. And my bonus of premature appendix surgery, puppet hands, two blood clots and medium-well-done kidneys made the stay memorable.

And then there’s the prize I won behind door number 3: a big piece of plastic implanted in my chest and jugular.

Is it too late to trade it in for the cash? Why do they bother to color it? Am I supposed to feel better about it because I know it’s purple? Why can’t I have one in Home Depot orange?

I can’t say I’m in great shape today, or that we knocked the bugs down like we’ve done in the past. I feel discombobulated and am still coughing up more than I normally do after two weeks of go-go juice. I’m doing my best to stay optimistic but I wouldn’t be surprised if I make a return visit soon.

Work today ≠ Fun.

This is me now. Hey, somebody give me a hand here. I am missing blocks thanks to my crazy pal, CF.

Back in the day, hospitalizations were mellow events. The Doctor popped in for five minutes to make sure I was alive, and eventually kicked me loose to finish IVs on my own. We didn’t take blood or worry about my kidney function. I lifted weights and went about life.

When I needed to remove my PICC, I tied it to my dog’s tail, took a deep breath, and tossed a ball. Out with the line; back with the ball. Thanks, Nurse Chocolate Labrador. She was wired to assist.

Now hospitalizations are advanced Mensa-level problems straight from an episode of Star Trek. At some point, even Capt. Kirk would give up on me – too complex to solve.

The day the hospital doctor discharged me, he said he told his team that as long as he started his day with me, it was a good day.

Is that because I’m such a joy at 9 in morning – doubtful – or because I am so screwed up, he felt better about his day ahead and life? I didn’t ask. I was happy he released me.

Thank you for all of the comments and best wishes. As always, they made a difference, and I read each one twice – because I’m dimwitted and must.

Stay simple to solve.

The view from the floor

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Days like this make me miss shag carpet

I spent quality time on the floor with my Thumper yesterday, trying to beat my lungs into submission. At least it spared me from searching more “flu or cold” web sites. I’m voting flu, which doesn’t make sense, as I got my flu shot. It must wear off by March because this has happened before.

Either March hates me, or, flu shots don’t work for me.

It’s an odd virus too. I felt well enough to work in the morning and early afternoon. When I had finished, I felt like the elephant minding his own business when a tranquilizer dart zipped out of nowhere and tapped my ass. Timber, down I went for the afternoon. Nausea joined the party last night, limiting dinner to chicken soup and Tylenol.

Worst of all, my wife has it now. She’s still in the bedroom knocked out. I feel terrible I gave it to her.

I did get a burst of energy at midnight and wrote a different blog post, which I didn’t post. Not sure if I will. I always worry when they come too easily.

Battle royale, day six, begins.

DEFCON 2

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Hipstamatic makes everything look cool, even a sign at a hospital

The virus, flu, whatever it is, took a big swipe at me last night. I rarely get fevers, but it was 101.6 on the radio dial, not that there are radio dials anymore.

Why does bad stuff always happen in the dark of night?

The fever came with chills and an elevated heart rate, SOB, and pulseox of 90, 91. Tylenol knocked down the chills, but not the temperature, and I got as close as you can get to going to the ER. The temperature settled down when I cooled off, letting me sleep for three or four hours. I woke up in a wet sweat. And nauseous, which is sometimes a sign of a collapsed lung for me.

I emailed the doctor and he ordered an x-ray. Three hours of my day burned going to, at, from the hospital. No pneumonia, no pneumothorax, no hospital stay – yet. Then home for a weekday nap, something I take every 5 years. Work got cancelled, too, which made me uncomfortable and behind on my projects.

It hurts to cough, which amazes me, as I cough all the time. Virus-aftermath coughing is different, more painful.

The question now is . . . will I move to DEFCON 1 and go to the hospital, or will I escape? I cannot think of any examples of escaping this strong of a virus in a long time. But who knows, maybe I’ll get lucky. I’m on oral cipro, Cayston, and inhaled Tobra. This trio of heavyweights better keep me out of jail, or I’ll be pissed.

My head cold goes south; I stay West

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Everything was going fine this morning preparing to leave for my trip until I coughed a dry cough – red alert. It was a clear sign my cold had crossed the imaginary barrier of my throat and entered my chest – chest cold, red alert.

The monkey tossed a wrench. But was I reading the sign correctly?

I don't know why, but this photo seems appropriate. (Creative Commons: soldiersmediacenter)

I went through my routine. And when the driver knocked, I hugged my wife and left. And the first thing I did when I got in the car was take a Xanax. But it was too late. Each suppressed dry cough was like someone shaking me to wake up.

The closer we got to the airport, the greater the thought of “turn around” became. Turn around. Turn around. Go home. Do not go, turn around. TURN AROUND. BAD THINGS WILL HAPPEN.

At least a dozen scenarios played through my head of what might happen – what I would do when I got to New Jersey and this chest cold turned worse. What would it be like to be in the cold weather, a hotel room, sick? What would it be like to have a dry hacking cough on the plane and have people stare? What would it be like to go through security and have to open my bag of CF paraphernalia and explain it?

How would I get home? How would I get home?

Too overwhelming, go home.

As we exited the freeway, I felt warm.  And as we got closer, hotter. When we were about a mile away, I knew I couldn’t get on the plane. My face was flush, my heart beating in an uneven drum beat – hard beats, ready to release blood into my lungs.

When the driver pulled up to Terminal 1, I told him I was having a panic attack and couldn’t get on the plane. I asked him if he could drive me home or send another car to pick me up. He was very nice and said he could drive me home. But he suggested we wait five minutes, take a deep breath and see if I changed my mind. I called my wife and told her I couldn’t get on the plane. I had made my decision. No sense waiting five minutes.

The driver took me home. I handed him an extra 40 bucks. And in the dark of morning, I wheeled my suitcase into the house.

Now had I written this post this morning, the title would have been: This blog post written by the world’s biggest idiot. I felt that way for making the decision not to get on the plane. Wimp, wuss, were a few of the words I used. However, the cold worsened throughout the day. I’ve had a dry cough and been out of it, tired, groggy from the stress and the virus.

But, for once, I made a correct decision. An uncomfortable decision, but the right decision. It didn’t feel like it at the time, but it does now. I’m fighting a chest cold, which may put me in the hospital. I have no doubt had I gone, I would have been in deep s**t with this thing.

So, the part of me that felt like a complete wuss at the airport for not getting on the plane, now feels good because I made the difficult decision not to go and to ensure I was in the best position to fight the cold and, with luck, stay out of the hospital. That is yet to be determined. It’s 50/50 at best right now.

Here’s my last thought tonight: I hate cystic fibrosis. It can kiss my ass.

Packing Day

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I miss the days when packing for a trip took 45 minutes, not all day, and didn’t feel like defusing a bomb, hoping not to leave anything critical behind. I did exactly that in Hawaii a few years ago when I showed up without eFlow nebs. I felt ill when I realized they were sitting on the counter back home. And our trip budget took a hit with overnight plane delivery on a Sunday. (Yes, chocolate-covered macadamia nuts can sustain you for a week, but you’ll never eat them again.)

Count 'em out, ride 'em in, Ride 'em in, count 'em out, Count 'em out, ride 'em in, Rawhide!

There are a lot of meds and devices to keep track of, and it’s taking all afternoon to round them up and triple check them.

We’re officially on East Coast Time now in my house. Dinner will be at 4:30 PDT today. Bed by nine or ten, not midnight. Transportation will be here at 4:45 a.m. I have to wake up at 3:30 a.m PDT and do meds.

I started cipro today. No streaks, but I’m not taking any chances. I decided to fire the gun at the enemy first and not wait for it to surprise me – yes, I could be President one day with that preemptive skill.

Theme of the day: Travel light. I bought a new, smaller suitcase at Target, and I removed all ballast from my backpack: coins; old receipts; individually packaged hospital meds I never took; and limited clothing.

Part of my green initiative is wearing the same clothes for a longer period of time before changing and washing them. I wear the same T-shirt, shorts and underwear all week. Remember, I can go three weeks in the hospital without showering. So, wearing the same clothes for seven days . . . piece of cake. The world can thank me in a few years for all the detergent I saved from the ocean, and the energy to run the washing machine and dryer. Just don’t sit next to me on day six.

I fly to AZ first. I chose the close layover so if something bad happens on the plane, I can drive home or go to a hospital there. I’m comfortable with Phoenix and know my way around. It’s also not far if my wife has to travel to see me.

With luck, my next post will be from a hotel in NJ, which is what we once code named the hospital when my daughter was young. “Daddy’s in New Jersey for a week.” Now, it’s where I’m really going, though given the choice today, I might choose the local hospital. At least I don’t need to board a plane to get there.

No one lives forever

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Par-a-noia strikes deep
into your life it will creep
it starts when you’re always afraid
step out of line the man come and take you away
– Buffalo Springfield

I look better in black and white

I have a plane reservation for Monday. I don’t remember how long it’s been since I’ve flown. A year? Over a year?

Travel with cystic fibrosis hasn’t always been kind to me – hemoptysis over the Atlantic Ocean, German hospital; collapsed lung over Texas, chest tube and chest tube redux; and half-a-dozen or so travel episodes of coughing up blood, even in Hawaii – how screwed up is that?

And recently, I’ve had two embolizations and unpredictable moments of bleeding, sometimes due to exertion.

So, the thought of getting on a plane Monday scares me. It’s fear, pure, simple.

It bothers me to realize I’m afraid of something – deeply afraid.

Bad things happen when I travel.

If my lung bleeds on the plane, how much will it bleed? Will I be able to walk off the plane? Or, will I be carted through the airport to a waiting ambulance, my shirt Rorschach-red, people staring?

My crows fly wild, agitated, noisy.

The icing on the cake of indecision is the head cold I’ve been fighting with nasel irrigation, tea, vitamin D and M&Ms. The decision may not be mine to make after all. The cold may force me to stay home in what I like to call a “career-limiting move,” as if I had a career. But I have job, with health insurance. I’d like to keep it.

There is also the voice inside I like to call the “Train-wreck Watcher.” It gives me courage to go, to get on the plane, and see what madness might play out – to witness a possible derailment: a hospital in NJ; coughing up blood in front of my co-workers; or dealing with breath-taking stress and feeling trapped.

Train-wreck Watcher says: Is there anything the disease can throw at you that you cannot manage?

I don’t know. Is there? Roll the dice, sissy boy. No one lives forever.