Category Archives: cystic fibrosis

The two Hells of cystic fibrosis

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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.]

Eating wet dynamite while the universe shoots me in the groin

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Gunshot #1: I’ll be saying goodbye to a tooth soon. It’s fractured and needs to come out. Gunshot #2: I have big clot in my neck from my four-month old port. Thank you, universe, for the double tap to my groin. It hurts so good.

A month ago I started having pain in one of my back teeth. I grind a lot and have been too busy to get a fancy nightguard to prevent it. I ate through the last one. Along with the pain, I noticed a lump on the gum that would fill up with blood and pop and repeat the process.

The first dentist called it a fistula, which made me think of Dr. Nanos’s research cows that still cause me nightmares. The third dentist, a periodontist, told me I fractured the tooth and it needed to come out. Oh, and better yet, I have very dense bone and the tooth is quite attached to its current location. No rusty pliers and go-go juice will pull this one out. Bring in the power grinder and drill.

Yet, that wasn’t the best surprise of the week. Tuesday during my treatments I felt pain in the right side of my neck and trap. I had been to the chiropractor the day before and thought the neck adjustment must have injured something. But in the back of my mind I thought that it felt like clot pain.

Wednesday, the pain was still there on and off. When it started throbbing on Thursday, I went to the mirror and looked at my neck and there was a large golf ball bulge behind my collar bone. When I pressed on it, a pulse of fluid shot up my neck.

What hellish medical practical joke is this, Universe?

This is the Urgent Care television. Why do they even have it on the wall? I felt like ripping it down.

The doctor at urgent care took one look at the bulge and told me to go to the emergency room because they had a scanner for clots.

Off to the ER, my favorite place in the entire world. What a joy. And the visit didn’t disappoint.

I was lucky enough to draw the doctor who watched too much of the TV show E.R. and longed for the drama of patients with fence posts through their heads and fifty gunshot wounds to the torso – not patients with bulging necks.

“Urgent Care sent you here?” she asked, letting me know my case wasn’t worthy of a visit and that she’d never seen a clot in the vein that was swollen. Clearly, I was a douche bag to her at that point and an interruption to her day of more interesting patients who needed their heads sewn back on.

She called for the scanner, reluctantly. The scanner scanned me and found nothing, which brought about relief on my part. No clot. Doctor Thrill Seeker hated me even more and couldn’t explain (didn’t care) why I had pain and a pulsating lump in my neck. Go away, uninteresting patient. Come back when a gang banger has put a cap in your ass and your blood is spraying like a Yosemite geyser. Then I’ll be interested in helping you.

Ah, the joys of the random ER doc. Wonderful and delightful. But luckily, I have a good CF doc who agreed to take a look at it the next day at the hospital, even though there was no clinic.

After he looked at it, he ordered another scan. The result: a clot at the point the port enters my vein. The ER didn’t scan low enough by a fraction of an inch. I couldn’t believe it. Instant depression in a cup. This meant more Lovenox shots, of which I’ve done over a 1,000 for past clots. And being prone to coughing up blood, the shots are the equivalent to me eating wet dynamite. It’s not if my lungs are going explode like a dragon spitting fire, it’s when and where. 

So, that’s where I’m at right now. 5 Lovenex shots down. Who knows how many to go. The banging sound you hear right now is my head hitting the wall.

Or, is it the sound of irony since I got my port to avoid the clots the PICCs gave me?

Stay clot-free.

Meet Mr. Discomfort

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Mark down yesterday as the first time my daughter said “I hate you” to me. But both and wife and I were glad she did. True. And I kind of earned it. I’ll explain.

First, my wife is the better parent, as if that needs explaining to anyone reading this blog. She’s up on the parent mags and is loving and caring. I stumble through life and wing it, happy to wake up each morning, which is an instant win in my mind.

And then there is our talented and smart 9 year-old daughter going through a transitional stage and testing the borders of the soon to be teenage years. And though we think our daughter is special, as all parents do of their children, I worry that she lives too comfortable of an existence.

My wife and I are not rich. We both work. Our house is less than 1,900 sq ft, which gives me house envy here in Los Angeles. And as an only child, our daughter gets all of our attention and lives a good life. And though her hardship and defining moment may come at anytime when my lungs fail or I get hit by a moon rock, she leans toward not wanting to break out of her comfort zone, and is a little on the shy side, especially with adults.

That’s where I come in. I’m Mr. Discomfort and my picture should be on a bottle with a really long legal disclaimer, a number for the local poison-control hotline, and the warning: “May cause irritation.” 

It’s my job to shake things up when life stagnates.

I get bothered when my daughter holds her feelings in and doesn’t participate in discussions. So, rather than have the silent young lady at the table sitting it out while life goes by, I push and prod until we have a mild conflict going that leads to emotion and the flexing and testing of communication skills. And most importantly in the end: growth.

So, when the young firecracker’s fuse ran out and she asked us if it was okay to speak exactly what was on her mind, we gave her the green light. We had plenty of burn cream in the kitchen.

And when she said “I really, really hate you right now” I was okay with that. It was a breakthrough of her not holding in her emotions and expressing herself. And more importantly, it resulted in her gaining the confidence to take singing and karate lessons, which is what the conversation was about in the first place – her not trying new things in life and ending up sad about it later as an adult.

When opportunities present themselves, we said, take advantage. Or, the moment may be lost and you’ll regret it.

To my daughter’s credit, she got it. And soon she’ll be kicking the daylights out of a karate bag and singing Lady Gaga songs.

The most touching moment came later that night outside when she asked me if I loved her. Yes, I do love you, I said.

Even though I said I hated you?

Yes, I said. Always. No matter what.

And the night was magical and mile 9 of the marathon continued with me skirting the fine line of “near-disaster” parenting, proving once again, even numskulls get lucky once in awhile.

Work and more work

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Work was a bear this week, eating me alive. I left late Sunday night and drove east to the lovely but highly polluted city of Ontario. Then I spent most of the week there getting up at 6 a.m to do treatments and work from the hotel. Then to the office by 8, on my feet all day and back to the hotel around 10 each night. A couple hours of treatments and to sleep at midnight.

The resting place for our black mutt

Before I left for the trip to the capital of polluting big rigs, we buried our black mutt on Father’s day. We sprinkled his ashes in the ground a few feet from our chocolate lab and planted a new plant on top of him. My daughter cried a lot. She loves dogs at age 9 more than I think I did as a kid, though we were not allowed to have them in the house, which made our relationship with them different. She’s grown up with a yellow lab for a pillow.

Knock on wood that I haven’t been spending much of my time at doctors lately. I have spent a lot of time at the vet with the dogs. It seems like I’m there with one of them each week. Yesterday, it was Luna. I welcomed the break from work, as I was moving slowly and not very productive early in the day. Luna has some “upset stomach/vomit on the rug” thing. Test results back today. Then, another trip this week or next to have Cali spayed.

The universe is happy when I’m speaking to someone with “Dr.” in their title, I guess. The only good part about the vet is not having to fill out 5 pages of medical paperwork and questions. The vet doesn’t care about who the parents of my dog are and what ailments her grandparents had. With real medical paperwork, I take the express train and line through those annoying questions.

Though I felt pretty good this week, it had its share of feel-bad moments. First was eating too much pizza for lunch on Tuesday and watching my digestion go south for the week, which is always a joy at group meetings and exceptional fun when standing in front of 50 people presenting.

Then my feet and lower legs swelled up thanks to the heat and Wednesday’s triple BBQ-meat lunch. I ate what could best be described as a small mountain of salty tri-tip, pork and chicken on Wednesday. I don’t know if it triggered a gout flare up, but I have to email the doctor and figure out what’s going on. By the end of each day, I was pretty creaky.

If I have any wish for my daughter today, it’s that she doesn’t work for a large corporation when she’s older – unless it makes her happy beyond belief to do so. And maybe I’m projecting my own wishes onto her, but there is something wrong with working for one. I can’t put my finger on it today with my tired brain, but I will in a future post. I just hope she does something really fun and is her own boss. Knowing her, she’ll be kind of bossy no matter what. Her poor future husband has no idea. 🙂

Stay rested.

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.

Work: The enemy of blogging

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I traveled locally on business this week. Most days were over 12 hours of work, with one topping 15. Today, I’m feeling groggy and if I didn’t know a Red Bull would send me to the ER thinking I’m having a heart attack, I’d try one. A little “pick me up” to make it through the day.

Puppy life in black and white

And my sincere thanks to Cali California for waking me up at 5:30 this morning. Adios, REM sleep.

Usually, I can knock out a blog post on the road, but not this week. I’d get back to the hotel, do my treatments and watch TV, something I don’t do during the week unless it’s sports. But I find it enjoyable when I’m tired and sitting in a hotel room. Maybe it’s the florescent lighting? It’s the best time to watch all the wacky crap I’d never watch at home. When did MTV become a soft-core porn channel?

I missed the puppy while I was gone, and my wife and daughter. A friend of my mine used to tell me that if he traveled and missed his girlfriend at the time, he knew he liked her. If not, it was time to break up. After 25 years with my wife, I still miss her when I travel. That has to be a good sign.

Later today, I’ll be at a puppy training class with my daughter. I’m the legal guardian so she can attend the class. This should be interesting. The trainer we used told us they’re “treat crazy.” I’m not. I’ve never really had to use treats to get my dogs to do things, except complicated tricks. But this is a new world with our shy puppy. I’m sure she’ll be the size of a hog by the end of the classes. Maybe we can teach her to “oink.” Will I get kicked out for suggesting this? Or for being “treat adverse”? Probably.

What time is too early to start eating M&Ms? Can I suck the caffeine-like chemical from them to wake up? It’s almost time for my treat – my McGriddle and hot chocolate. That will help my mood. Thank you, McDonald’s for inventing the perfect breakfast treat for humans. I’d sit and beg for one, but luckily I have the cash.

Stay healthy and awake.

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.

Why CF clinics aren’t located in high-rise buildings

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It’s a good thing they don’t put CF clinics in high-rises. 10 floors or above today and I would have base-jumped. Me talking to myself on the way down: I have a feeling I forgot an essential piece of equipment. 

photo by goldduck, creative commons

Take a deep breath, now blow, blow, blow, keep blowing, blow

The news pushing me out the window: my PFTs did not recover from the last bout of the flu and IVs. I tried to fight the virus for too long before admitting myself to the Hospital California (“you can check out anytime, but you can never leave”) and damage may have been done.

“Oh, the horror . . . the horror.” (It always makes me feel better to think of pudgy, bald Marlon Brando at times like this.)

Will jumping from clinic’s third floor kill me? Can someone sharpen a dozen spears and place them in my landing spot? Will Martin Sheen shoot me at the end of the film?

Would it be like Groundhog Day if I kept leaping from the hospital room each day, only to be brought back to heal? Will Bill Murray play me in the sequel? Too old.

We probably should have gone longer with the IVs. But then again, I would have had kidneys the size of beach balls when I left, and the joy and bragging rights of going a week without peeing. Watch me drink this five-gallon bottle of water. Gulp, gulp. Gone. Nothing coming out. Magic. Let’s see David f’ing Copperfield top that?

My most excellent doctor believes my sinuses may be contributing to my low numbers and reinfection. So, I started Cipro today and have an appointment with a new ENT next week. I’ll play along with my doctor and hope he’s right. He usually is. However, this time I doubt it.

My decline was a combo of the flu biting me in the ass, going under for my Bluetooth chest port, and the amount of fluid they filled me with Willy Wonka style, which makes me think how much the hospital is like the Willy Wonka factory. Fall in the chocolate river and you’re hosed. Eat the blueberry candy and you’re a balloon. Kiss a nurse and . . . magic gumdrops fall from the sky? That sounds okay. Hold it. Where am I going with this? I got distracted by the image of the nurse with the rump-rounding shoes again. Happens six times a day.

I’d just like to say “thank you” in advance for honoring me with the “most motivational CF blog post” award for this one. It’s an honor and I’ll make sure I’m holding the trophy in my hand when I jump out of the clinic window.

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.