Tag Archives: cystic fibrosis

Something I would give to my worst enemy – c diff

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I don’t believe in the saying, “I wouldn’t give that to my worst enemy.” Not me. I’d give everything bad I could think of to my worse enemy. And other than passing on my cystic fibrosis, c diff would be second on my list.

This is the devil picture on Wikipedia? That's the best they can do? Hmm. Oh, well, I'm wishing c diff on the devil, though I have my suspicions he invented it.

Holy f**k, this bacteria is not pleasant. I had to start week three of the Vanco. And just when I think I have the upper hand on it, bang, boom, bang, there goes my stomach again.

Where is my worst enemy to give this to?

I’ve had some days with this sucker when I wished a meteor would fall from the sky, pulverize me and the c diff. Pile of dust and dead bacteria. Kind of like the movie where the hero grabs the enemy and jumps off a rooftop, taking both of their lives, to save the world. Not sure what that movie was called, but you know the genre, I hope. Hero dies to save the world. I just want to kill the c diff for the good of the world (and me).

I’m doing everything right. Taking the vanco on time, eating probiotics, getting sleep, making little c diff voodoo dolls to throw in the bonfire each night in an ancient c diff-be-gone ritual. Then I apply war paint to my face and chest and dance through the neighborhood in a kilt. My neighbors close their shades and turn off their lights. No one home, go away.  

Bacteria have it out for me. Story of my life. Story of your life?

In other random news, my wife is losing hair and is stressed about it. I think it’s from living with me and am surprised it didn’t happen sooner, like a week after she met me.

In reality, it’s probably her job. She stresses too much about it and is 10 times the worker I am. However, we don’t live in a big house or drive exotic cars, and we don’t have a boat or coke habits, and we don’t because we don’t want to stress about these things.

But she stresses like we do have these worries and that’s not right. And if she’s going to stress that much, we may as well move up to a larger house. I’ve always wanted a Porsche. And god knows I can throw a rock in any direction in this city and hit a coke dealer. Oops, sorry, meth dealer. I don’t live in Beverly Hills.

So, tonight I played the following TED video for her. It’s really about happiness, not work, and appreciating what you do have. Hopefully, it will help her fight the deterioration of aging and have a positive mindset. Or not.

I don’t like seeing her go through this, but I’ve been living it for many years and depend a great deal on Super Glue to hold my stuff together. Works like magic.

We all go through it don’t we? If we live long enough. But how we go through it is what matters most, isn’t it? No sense being unhappy about the inevitable. As my ex-friend Fox would say, Party like it’s your last.

(The TED clip is below. It’s funny. Please check it out. It may make you happier. Or maybe it won’t. Will. Won’t. Will. Won’t. Oh, hell, give it a shot. What do you have to lose?)

Hospital stays are like snowflakes

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The master escape artist

I escaped.

Once again.

Yes, once again, I lived to tell about my journey to the Hospital California. And I wonder if it’s how Houdini felt when he escaped his self-made devices. Until he didn’t.

One day, I won’t, but I’m hoping that day is a long time coming.

But I do feel like I know what it’s like to hang upside down in a straight jacket and chains staring down at the ground and swelling crowd, which in my world is filled with doctors and nurses.

They look up at me, an oddity, dangling, and wish for a single link to snap, to give into the weight, and bring me down to earth. Splat. Now this is something they’ve seen in a medical textbook. Page 898, not unlike an egg hitting the floor.

Once again the experience was unique and unlike any other hospital stay. They’re never the same. New nurses, doctors, personalities, dosages, drugs, tests, sounds, smells – mistakes. Every day a new challenge. Every day a new result. You never leave the same person.

This time, like many others, I left feeling worse than when I went in thanks to C diff. I didn’t escape unscathed. My stomach is wrecked.

Obviously, the antibiotics harm the good bacteria in my gut, but I counter it with probiotics, which have worked in the past. This time the fridge was set to “high” before I noticed. I didn’t know a small fridge could get Alaska cold. So, I’m wondering if the freezing temperature ruined my stock of probiotics. Or if I didn’t take enough. I don’t know. But I do know I’m in for two weeks of vanco, a blowtorch of a drug.

I’ll be dropping pounds in the coming weeks.

You want to know the fastest way to loose weight? It’s not Jenny f**king Craig. It’s c diff. It strips the weight off fast. And you can eat all you want. Doesn’t matter. Shove it all in. Go to a buffet, run behind the counter and protective glass and stick your face in each tray. Eat like a horse. Go mad. Scream out, “I can eat anything I want and you assholes can’t stop me.”  The scale won’t care. It’s magic and never goes up.

I do wonder, and I had this thought in the hospital, too, if it’s not best at some point not do everything right. Not to eat right. Not to do treatments. Not to exercise. But rather, to adopt the Rock Star lifestyle of excess. I wonder. It sounds appealing at times, but not realistic for a long life span.

And as mine may come to an end soon – let’s hope not – I feel more pressure than ever to create something memorable to leave behind. To do something different with the time I have. I’m not sure what it is. Just something satisfying. A good use of my time. Because, god knows, I’m misused what I’ve had over the years.

The pressure of creative success never goes away. It’s a ghost that haunts.

January Malaise

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My least favorite month is January – vacation and holidays are over, back to work, cold weather, short days. And the thought of all the things I want to accomplish in the upcoming year but won’t.

Last week, I saw these autumn leaves hanging on and couldn't resist taking a picture. I was rooting for them to make it to spring, but the winds this weekend were too much for them. Hello, bare trees. Looking forward to April.

Being sick since last week hasn’t helped my January outlook, though I can’t blame the weather here this time. It’s been spring-like with 70 and 80-degree days. But it hasn’t helped enough. I’m in the “first-month-of-the-year” funk.

Tomorrow I repeat the PFT and find out if my parole is over and it’s time to go to jail. I have no idea which way the test will go. I’m a shitty judge of my lung function.

How many times have I gone in for the test thinking I’m going to ace it and my numbers will be “through the roof” high only to be disappointed (chump). So, I have no opinion tonight of my performance tomorrow. The numbers will be what the numbers will be. I have done everything I can at this point. It is in Tim Tebow’s hands right now (he’s a god to me after Sunday’s game).

The thought of going in the hospital makes me cringe. It must be easier when the decision is made for you or clear cut, e.g., you’re injured in a car accident and taken to the hospital in an ambulance. But having to check yourself in for two weeks when you’re still functioning, walking, talking, etc. Well, not so easy to do when your brain is telling you, “bad things happen there. Stay away.”

There is nothing good about the place: the process, the routine, the doctors, the tests, the food, the germs, the mistakes, the juggling of work, and the being away from home. There’s not a lot to like about any of it.

Wouldn’t it be nice if there were some cool benefit to going in. Daily massages. Nurse . . . er . . . playtime. [sound of train coming to a crashing stop] That’s it. That’s all I can think of. What else could a hospital possibly offer to make it worth going there voluntarily?

An Apple Store with a 50 percent off sale?

I’m at a loss to think of anything else. Oh, yeah, the feeling better part. There is that.

So, we’ll see. Tomorrow is one more day of January over. That’s something to look forward to, isn’t it? How is that for positive thinking?

Today’s butt-kicking brought to you by the name I shall not speak

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There’s nothing like a bad Pulmonary Function Test (PFT) to ruin your day. Or your life. And, as I have internet friends going through hell right now with their results and breathing, I’ll leave my crying for another post.

I fell out of my chair when I saw this t-shirt on zazzle.com. I would change "obstructive" and "restrictive" to more adult terms.

But there’s nothing like the feeling when you blow hard and your lungs sound like a they’re a poorly carbureted 67 Camaro. The moment you see the results on the computer screen, your hope, with its eggshell-thick covering, gets crushed.

A surprise punch to the gut. Vertigo-a-gogo. Or what it must feel like when you’re inside an elevator and it breaks away and falls to the bottom floor.

My wife and I went to a New Year’s Eve party. Well, there were only six adults and three kids, but it was fun and I’m defining it as a party. Usually we stay home. So this was pretty darn exciting. Until I saw one of women sniffing with a runny nose, and not looking so good. I knew we were screwed. I washed the top layer of skin off my hands, but my wife was hosed, as women like to hug when they meet.

[Public Service Message: Don’t go to parties when you’re sick. It’s worse than re-gifting a “Seen on TV” present.]

But Monday we felt great as we cleared out the Christmas decorations and I took down the lights. In fact, we had tons of energy – a crazy high level of energy like you get just before a cold but never recognize. Oh, yeah, that one.

Tuesday came and so did the virus.

I maxed out the vitamin C, zinc, Thai food soup, sinus rinse. I didn’t feel too bad, and don’t as of writing this, other than the pounding headache. But at today’s clinic appointment, I failed my PFT, down over 20%. I was on Cipro over the holiday, so now I’m on it longer and have to repeat the PFT next week. Most likely, my eight-month vacation from jail is about to end.

Oh, there was one more punch today. The clot in my neck is still there. The groundhog saw its shadow: two more months of Lovenox shots in the gut.

Here’s one more blow to make it a triple cocktail: I was selected to represent my department at the CES show next week in Vegas. I’ve always wanted to go. Goodbye, dream.

You know what? It’s all good. I’m sending good vibes to those worse off and fighting hard tonight.

As for me, in the immortal words of the Black Knight when his arm was cut off, “Tis but a scratch.”

The Black Knight brought to you by Monty Python

Derailed by autumn bleeding

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I’ve felt off this week, not 100%. The weather flipped from hot to cold in one day and with it my equilibrium. Today the autumn bleeding arrived.

The good news is the bleeding isn’t bad – yet. But it’s there and I’m now I’m on cipro. And I get to skip a Lovenox shot tonight.

Creative Commons: Lucretious

The bad news is that I took 5 mg of vitamin K when I meant to take 1 mg and the clot in my neck bubbled. I need to get another scan this week. After two months of shots, a little vitamin K shouldn’t rock my clot. My gut tells me the port-line is out of position and won’t let the clot go away. It needs a doctor’s attention, me thinks.

I did force myself to go out in public tonight, but it is an odd feeling to be in a crowd when you have hemoptysis. It’s surreal, like I’m watching life through a movie lens instead of my own eyes. I feel jealously when I see other fathers and their families and think how nice it would be not to be thinking about my lungs and the hospital. I’m sure they have their worries too.

An extra punch to the gut came when my supervisor told me he was changing positions Monday. I had a good relationship with him and he knew my situation. Now I get to explain it to someone else. It would be nice not to have conversations like the one I’m going to have. It’s embarrassing.

That’s it for tonight. Post a day 2011 checked off but not with the post I had planned.

Autumn stumps me

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I’m not sure why autumn doesn’t like me. It’s been a trend for many years for it to kick my ass up and down and back again.

This is not Los Angeles in Autumn, which is palm trees and cement. (SXC license)

All three of my embolizations have been in the fall, including one in Germany thanks to hemoptysis over the Atlantic Ocean. I’ve mentioned this before, but I never get tired of telling it just because I survived to live another day.

Even without bleeding in the fall, it’s the season when I’ve experienced the most hospitalizations. I don’t really understand it and my feeble brain has never been able to decode it. I go into the hospital during autumn and usually stay out until I catch the Flu in March.

This year, I’m doing my best to load up on broccoli, wasabi, vitamin C, which I got out of the habit of using in high doses, and vitamin D. I would start taking curcumin root, but with the Lovenox shots, I read it might increase the chance of bleeding, though I may risk it.

I feel like an ex-con who doesn’t want to go back to prison. The thought of it makes me ill.

I should start a pool with donations going to the CF Foundation and have my friends bet on the day I go in. Just by writing this, I have tempted the CF gods to punish me.

My insider advice to any pool players: take tomorrow, Friday. The CF gods are a vindictive and angry bunch.

How I spent (and didn’t spend) my summer vacation

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I didn’t spend summer in the hospital. [Fox applauds, then passes out.]

I feel like I won the lottery by not going in, though the pattern for me has long been one without summer hospital stays. With falling leaves, colds and other viruses on the way, you can bet that I’ll soon be returning to hell.

Ebony and Ivory, living in perfect harmony on the beach

I didn’t spend June, July or August coughing up blood, though summer hasn’t officially ended.

And if you’re a betting man or woman, I’d bet on the blood thanks to the blood thinning shots I’m stabbing into my McGriddle-fattened six-pack twice a day. And I’ve just tempted fate by mentioning it on the blog, which means I’ll probably be in the hospital coughing up blood within the next two or three days.

I did spend June working on what the Donald would call a “super-big, important, super-large” project at work. It was a success and once again I proved it’s better to be lucky than good, and assembling a talented team always makes one look better than they truly are. Go Team Unknown.

We did spend the summer with a new puppy – a goofy, mischievous, shower-squeegee stealing, whining, scared of her own shadow, mystery of a black lab that I wanted to give away, but was outvoted by my wife and daughter, who are both attached to the black shadow-thief. (That’s all I can write about the dog, otherwise my friend @onlyz tunes out at this point and starts to read the back of the vegan muffin package.)

I didn’t spend this summer blogging or watching TV, but I did spend it reading. I read over 8,000 pages and enjoyed every minute, staying up late and making the most of when time takes its mandated-by-law break.

Malibu coastline on a nice summer day.

I did spend the hot months milking every bit of fun I could. I filled every weekend with an activity and dragged my wife and daughter to all kinds of places. From the American Idol concert, to the beach, the circus, a dog agility trial and canyon roads we’d never driven. We didn’t take a summer trip this year thanks to the blood-thinner shots, but we still had a great time and spoiled ourselves by eating dinner at restaurants more often.

The end of a great concert at Theatricum in Topanga. Check out a play here if you're in Los Angeles.

Monday, Labor Day, we ended the “holiday to holiday” summer with the annual benefit concert at Theatricum in Topanga. What an amazing afternoon filled with talented singers singing Burt Bacharach songs. A great way to finish my favorite season of the year watching some of Los Angeles’s most talented musicians, like Inara George and Sara Melson, play music for two hours.

So, I’m happy with the job I did having fun this summer. I cannot guarantee I’ll see another one. I hope I do, but it’s not written in stone that I will.

Now it’s time to focus on autumn and the Denver Broncos winning and me staying out of hell and not catching colds or the flu or coughing up blood. I’m optimistic, but know sometimes there is nothing I can do but ride out ill-timed surprises.

Here’s to a healthy fall and winter to all.

Caught in the medical riptide

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I’m back in heaving ocean waters again. A sea full of medical tests and ailments. And it’s going to be awhile before I can escape its grasp and swim to shore.

It started with the blood clot in my neck and the twice-a-day “shots  from hell” to the gut. Now I have two hematomas on my fat-covered six-pack – large bruises with nodules of what I guess is hardening blood in the middle. Kind of like chocolate candies with almond centers, not that I’ll ever eat those again now.

There are a million rocks under that whipped cream

Then last week on a vacation day, the ocean attacked me by throwing a large stone at my foot. A trail of cuts runs up my right foot to a large bruise near my ankle bone.

I was standing in a field of rocks with my daughter searching for cool looking specimens to take home when a foamy wave shot up the beach, rolled a nice big rock and beaned my foot. It hurt, but I was fine until I went bowling Sunday.

That’s right, bowling.

Who’s bright idea was that? Oh, yeah, mine.

So, we went, Sunday, bowling. And on the second ball I rolled, I pulled a muscle in my ass and back. Embarrassment does come with an injury like that, but I can brag that I played through the pain and bowled three games without being able to bend over to roll the ball. I just sort of had to throw it down the alley to manage the pain. (Grunt, toss, thud, sound of pins falling.)

Clearly, I was not in bowling shape

But we still had fun, with my daughter providing the highlight by leaning over the fan on the ball return and putting the gate down as my ball was heading down the lane. CLANK. Then, as we were figuring out what black magic prevented me from picking up the spare, my ball rolled all the way back and I picked it up as if nothing happened. Good times.

Until I took my shoe off.

Something about the bowling shoe irritated the bruise and caused a golf ball sized hematoma on my ankle, confirmed by the ortho Dr. yesterday.

By bedtime, my foot looks like it belongs to someone you’d see on Jerry Springer who hasn’t left the house for five years because he enjoyed home delivery of ten large Domino’s pizzas each day and crushed his scale north of a 1,000 lbs.

But that wasn’t the best part of the appointment with the ortho. I received a bonus gift during my visit, which is so often the case with visits to the doctor. I choose door 3, but they surprised me with door 2. He told me there is calcification in the artery? Wasn’t clear on that, but he said he normally only sees it in much older patients and I need to see my heart doctor about it.

In CF years, I’m 132. Does that count?

Now I have to get a stress echo or cardiac cath, the latter makes me sweat and want to throw up. Not big on caths of any kind, especially on a blood thinner.

Caption says it all

Oh, and I have the tooth that needs to be pulled asap because the gum is bubbling again, but which I keep putting off because I need to get an oral surgeon to do it thanks to the blood thinner.

Despite all of this, I’m doing my best to power through it, have the best summer possible, and keep swimming with the pain and riptide until the tide turns and I can swim to shore. This is about endurance and mental toughness right now – both of which I often lack.

Or I’ve reached the point in the movie where the lead character has lost it and is waving his gun at the monster in the fog and screaming, “come on, if you’re going to kill me, do it. DO IT. What are you waiting for? Come and get me.”

The next sound you hear will be me firing my remaining shots into the fog.

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.]