The blood monster returns

Friday morning I woke up with quite a surprise – a mouthful of blood, which was quite a shock considering the two recent embolizations I had. I am not able to articulate how I felt. I can only say that in that moment was everything I hate about this disease. It was the punch to the gut, hope ripped away, plans destroyed, a hospitalization with more tests, more risks, and a life interrupted. All at once.

I knew then I should have called the doctor to be admitted, but I asked for his permission to start cirpo. Granted. The blood came that day. Over 120 cc. There were times I worried that it wouldn’t clot. But I held out, as I’m not the brightest light in the pack.

Saturday morning was better with less blood. I was hopeful. Then it broke open again and again, coming out my nose at times from the force. Paged the doctor on call. Time to go in. I let my wife drive, which tells you how serious it was. When I arrived in the lobby and checked in with Admitting, it broke open again and I received a Fast Pass to my room. A towel full of blood is the price of a quick admit.

So, here I sit in the hospital on a Monday night, separated from my pack, thankful I am alive, but hating cystic fibrosis more than ever. I am in complete disbelief that the blood returned so quickly. This isn’t happening. When do I wake up from this nightmare?

There is good news – the blood is dissipating. But is that good news for the long term? How long after I get out before it happens again? Will my streak of never being in the hospital over the Christmas holiday be broken? We’ll see. First, I have to get out of here alive. I don’t assume anything anymore with this demon of a disease. I can only hope and be thankful for any days at home I have left with my wife and daughter.

Homage To War of the Worlds

Yesterday, I held my own Twitter experiment, sort an homage to Orson Welles and his War of the Worlds radio broadcast. I tweeted all day as if I were outside Walmart, then Target, waiting in line for Black Friday deals. I was not there. I hope I never wait in line to do that – never say never. Twittering was my way of counteracting the forces of Black Friday.

RIP, Creative Genius

I am tired of hearing about Black Friday (BF). If the Charlie Brown special were made today, half of the show would be about Charlie and his friends waiting outside a store to buy BF deals. Not only that, BF deals started Wednesday this year and some stores opened on Thanksgiving night (Toys R Us). This year the amount of coverage got under my skin.

I’m not here to give a lecture. My house is full of gadgets. But I feel manipulated by these BF ads and companies and the compulsion to buy. Not only that, it feels like our economy is held hostage to the peaks and valleys of how much or how little we buy. Worse, and this is where I agree with, our happiness is tried to our consumerism.

So, I tweeted all day and had a really good time doing it. I laughed at my own tweets and tried to give hints regarding whether I standing outside of Target – free crock pots. I really don’t know what you cook in one, but my tweets were a crock so it seemed like the perfect product to give away.

Thanks for the tweeted replies. Some knew I was making it up; some came close to wanting to call me a loser for standing in line, which may be true about being a loser, but I wasn’t a loser standing outside of Target with a coupon for a free crock pot. However, if they did give away free crock pots, I probably would stand in line for one. I’m sure it’s the best way to cook squirrel. God knows grilling it doesn’t help kill its gaminess.

Why doesn’t CF make us stress resistant to life’s troubles?

Cystic fibrosis stress is difficult to describe to others outside of the disease’s reach. But it’s not that nuance of stress bothering me tonight, though when I think of going back to the hospital one day I feel like an ex-con who says he’ll never go to prison again. They’ll never take me alive. Now that feels stressful.

Where's the hospital bed in this ICU picture?

Tonight, the part of CF irritating me revolves around being stress resistant to non-CF related stress. At one point in my life, in my 20s, I had that power. I didn’t care what happened and somehow survived my own consistent stupid acts of defiance.

I want that feeling back.

Cystic fibrosis should come with superpowers when it comes to fighting work and life stress in general. But it doesn’t. I worry about too many things and I feel I shouldn’t. CF should protect me from the bullshit. Perhaps, it helps reduce stress a bit. After the last two embolizations, I don’t sweat the small stuff at work as much because I don’t know how long I’ll be able to work. I’m in extra time now. I don’t get too bent over trivial matters.

That’s not to say I’m not a perfectionist. I care about the work. I just try not to worry about what might go wrong or when something does. There is always a solution. Unfortunately, not everyone has spent a portion of their lives in the hospital. My co-workers stress over details that will never make an impact in life, or they’re afraid to take risks. Fear overwhelms them at times.

Why can’t I ignore all of these stressors when I know today might be my last? Well, bills have to be paid; daily life must be lived. I need health insurance. My life is not the romantic vision of dying with the mantra of  “you’ve got two months to live so go crazy and take care of your bucket list.” It’s a constant internal back and forth of living for today and planning for tomorrow. Blow all your dough today and you’ll be poor tomorrow.

Life would be much easier if when we were born, we knew exactly how much time we had. I’d like to know when I have 60 days left to go. Watch the partying of all time begin – I wouldn’t worry about a thing. Not one thing. That is until day 61 rolled around and I woke up flat broke, addicted to coke and sleeping in my wrecked Porsche 911 stuck in two feet of Pacific Ocean surf and sand. Worst of all, I’d still have CF.

Life is all about the correct timing of one’s recklessness, isn’t it?

Angry Birds, Californication, used cars and work

[Please excuse typos. I’m tired from doing all of the things in this post.]

I’ve been living in the CF netherworld of not feeling great, but not feeling bad enough to go in for IVs. It’s like riding a mediocre wave for as long as you can before you fall into the water. I’m on colistin, so it’s not surprising that I only feel “okay.” When I go back on Cayston in December, which was planned that way, I’ll feel better. This is the time of year where I do my best to stay out of the hospital but know I’m one bad cold away from an infection. I wash my hands a lot, give people knuckles instead of a handshake, and touch door handles with my shirt sleeve. Oh, and I don’t kiss supermodels because who knows where they’ve been. I ain’t taking no chances this time of year, crazy tall lady who wants to break up my marriage.

Speaking of my obviously better half, my wife got me hooked on Angry Birds, which may not make her my better half right now. I’ve been resisting games on the iPad because they’re productivity killers (have you seen many blog posts lately?) She downloaded the game on her iPhone. I followed. Holy f**k. This game is like crack cocaine – not that I’d know what crack cocaine is like, but my supermodel friends tell me about it all the time. Angry Turds, as we call it sometimes to great laughter from my daughter, mirrors crack in two ways. First, you think you’re only going to play one or two scenes or puzzles or whatever they call them. Nope. You play 10 puzzles. It’s hard to stop. Second, you lie to yourself that if you start you can stop in five or ten minutes. “I can handle it. I can play at 11:45 p.m. and be done at midnight. Liar, liar. Argh. I feel like a junkie.

When I haven’t been playing the birds game, I’ve been watching the third season of Californication. I watched the first two seasons in the hospital and got hooked. (Lots of talk tonight about addictions. Nothing like my OCD maxed out.) Great show. California is a cool place to live if you’re a stud book writer. Or you live by the beach. Otherwise, it’s full of foreclosures and polluted air.

The process of buying a used car bites. Plain and simple. It’s not fun. It takes a ton of time to find the right car because unlike the stupid commercial that showed 40 red Mustangs pulling up to a driveway with one staying – the perfect car – it’s quite the opposite of having fun. It’s “let’s drive to faraway places to look at cars that don’t match the description in the ad.” Occasionally, it’s cool to see new parts of L.A. I drove to an area north of Sunset Blvd the other day. Old-school L.A. with narrow streets and no parking and big houses wedged together that cost millions of dollars. Very nice. I can only imagine the weekends in that area. A couple of Brits I know would party hard and wake up in a pool the next morning.

Work, work, work. What can I say. It’s work. I’ve been getting rush projects one after another, including the large one I had to keep moving while I was in the hospital and technically not allowed to work. But they didn’t mind me working because the work had to get done. Even not working the last week in the hole didn’t kill my deadlines. So there work gods, I got one over on you. Or did I? Who got hosed here? Nothing like pushing off all of your scheduled projects for ones that are “hot” and “urgent.” Madness, I say. Madness.

That’s it. That’s the update. Time to go play Angry Birds before I go to sleep. I can handle it. I’ll only play one puzzle. Just one. Yeah, that’s right. When’s the intervention?

Life in the wild

During my last clinic appointment, I told my doctor that being in the hospital is like being in the wild surrounded by lions and hyenas and other critters intent on making me their dinner. That’s not to say the people who work there have the intention to hurt me – or eat me – they don’t. However, mistakes happen and stuff goes wrong. Some people are better at their jobs than others. The hospital can be a dangerous environment and one that requires my constant vigilance while I’m locked up there.

This appeared in yesterday’s Los Angeles Times:

USC University Hospital was fined $50,000 after pharmacists and staff gave a female patient with cystic fibrosis an overdose of medication in February, causing kidney failure and seizures. The hospital has since retrained nurses to verify prescription orders, created a new pilot program to ensure medications are administered correctly and started randomly auditing medication orders, according to a plan of correction submitted to the state. It was the first time the hospital had been fined.

My best wishes to the CFer. I’m not sure of the outcome at this time, but I hope for the best.

When I was in the hospital recently, they upped my dose of an IV antibiotic I received four times a day. However, the pharmacy kept the 30-minute timeline to infuse it on the label of the IV. Luckily, the nurses caught the mistake, as it should have read 60 minutes for infusion time. They often frowned and raised their eyebrows each time they saw it, letting me know it wasn’t a good thing. I asked them to tell the pharmacy and it took a day to get the label corrected. So, I had to watch over each dose to make sure it was infused over 60 minutes. I’m happy the nurses caught it and told me.

Back to my analogy of the wilderness. I’ve had other incidents, like a nurse telling me at 5 in the morning that they gave me the wrong antibiotic or being given a double dose during a shift change. These are just a few of the events that have happened to me at hospitals. I feel I’ve made a few saves of others by asking questions and staying alert (when I’m not knocked out from being sick).

Here are some of the actions I take during  hospital stays (please note that this is not advice. It demonstrates how crazy I am, nothing more.):

1) I use the high-strength Super Sani-clothes to clean all surfaces I might touch during the stay. That’s right. When I arrive in the room, I put on a pair of rubber gloves and clean the tray table, the phone, the remote, the the bed rails, door handles, etc. Some of the nurses who know me bring me the pads when I arrive. It’s cleaning time.

2) I check all IV medicines they give me  and when they give them to me. I look at the labels and ask questions, and pay attention to the routine. At night, I confirm the schedule with the nurse before going to bed.  There have been numerous times over the years, I’ve called the nurses to give me IVs to stay on schedule. During the last visit, one argued with me over the correct time of the dose. It turned out I had the time right.

3) I try to be proactive. For example, in isolation, I do my best to make sure everyone follows the rules about masks and gloves. I stop people from entering my room, which isn’t always easy and can lead to a hospital employee with “tude,” which I can match. Most of the time, it’s temp nurses and RTs who don’t know the rules and try to sound like they know what they’re talking about when they don’t. Processes can be difficult to train to a staff. Temps don’t always get every memo.

4) I wear gloves in the bathroom (except when washing my hands). C-diff is a killer. Literally. And if it doesn’t kill you, it can make you wish it would. I’ve had it five or six times. I’m doing my best to avoid it. I also take probiotics during the stay and after. My last stay was my best yet for digestion and bowel health thanks to the probiotics. And not contracting C-diff was my reward despite being on three IV antibiotics. I also stopped the Nexium and Zithromax to reduce the risk of C-Diff.

5) Before they remodeled and put a pulse-ox in each room, I used to watch as the nurse cleaned it with a Sani-cloth, not alcohol, and then I washed my hands after using it. Even with one in the room now, I clean it myself.

6) If something falls on the floor, it’s dead to me and goes in the trash. Are there exceptions? Sure. If I dropped my iPad, I’d clean it. Sometimes, my charging cords hit the floor and I have to glove-up and use a Sani-Cloth to clean them. But anything else, it’s outta there.

7) I bring my own Pari Sprint nebs. I hate the cheap-o nebs with the long accordion attachment. I wonder what the particle size is. It doesn’t seem as good as the Pari.

I know I’m nuts. I have other quirks while I’m stuck in a hospital. And after the last hospital stay, I dread having to go back. I’ve knocked out a lot of days there but it’s getting old having to go in three or four times a year. It was easier when I was young and didn’t care as much about living. Now with more to lose, it takes more effort to stay healthy. That’s okay, I’m lucky I have the chance to do it. At least I don’t take that for granted anymore.

Knock, knock. Who’s there?

It’s easy to explain the horrors of hospital stays to friends. Most have had some experience with them and have a respectful fear of their many needles and tests and food fit for no one. But I have a harder time explaining the daily grind of treatments, boiling nebs, dealing with insurance and holding the door closed on the dark and hopeless thoughts banging away, trying to get in. If CF were only having to deal with hospitalizations, I’d feel like a king. How nice would that be not having to deal with the everyday routine of the disease. Even the constant drone of the compressor and neb hiss eats at me. Three times a day. It’s confining and the same, like wearing wearing a plaid three-piece suit everyday. I long for new drugs and inhalers just to break up the routine.

Here’s a rough sketch of the daily inhaled gears turning:

Morning: Wake up. Inhale Xopenex, two hypertonic salines and inhaled antibiotic.

Afternoon: Inhale Xopenex and two hypertonic salines (and inhaled antibiotic if a Cayston month).

Evening: Xopenex, two hypertonic salines. Pulmozyme. Inhaled antibiotic.

Now repeat this 365 days a year, add mustard, onions and jump out the window.

That’s the skeleton of my day of breathing treatments, which also includes Vest time and a myriad of other drugs at set times. It would be even worse if I was forced to eat hospital food every day – the same meal for breakfast, lunch and dinner. (McGriddles for breakfast don’t count, @Seanset. They’re special) Something tells me there’s an Edgar Allan Poe story here about daily CF treatments causing madness. For madness doesn’t feel far away at times.

Knock, knock, who’s there? CF you. “CF you” who? CF you go crazy from doing inhaled treatments three times a day.

I’m not sure there’s a way to describe the daily grind to others. They’d need to experience it for themselves to understand and appreciate it. I’d like to see how long non-CFers could go, how many days in a row they could fire up the compressor, stick a neb in their mouth and inhale for an hour at a time, three times a day, seven days a week. I can only imagine they’d crack after three or four days and beg to stop and return to their normal, treatment-free lives, especially during the late-night treatments when sleep sounds good but must be resisted. (I have miles to go before I sleep. I must fight the urge to crash and skip a treatment. I’m being tested. Must fight on. Must fight on. One more treatment. And another. And three tomorrow. AAAAAARRRRRRRRRRRRGGGGGGGGGGGGHHHHHHHHHHH!)

Knock, knock. Who’s there? One day. “One day” who? One day I’m going to drag cystic fibrosis behind my VW van from L.A. to New York. That’s who.

Yesterday’s Clinic Visit

I am so lucky.

Lucky, lucky, lucky. I’m not sure how I’ve lived this long. Better people haven’t.

My clinic appointment went pretty well. It’s funny now my blood pressure goes up during the visit, especially if they take it before I do my PFTs, which make me nervous as I can’t tell which way they’re going to go. They end in happiness or dejection. No in-between for me.

When I was in the hospital for my two embolizations and 20 straight days of partying, my PFTs when down to level unseen since another doctor ruled the clinic years ago. In the span of my hospital stay, I lost over 20% of my lung function. The good news is – and why I am lucky – most of my lung function returned. I worked my ass off trying to get it back over the past weeks, even succumbing to twice a day pulmozyme, a drug has may cause me to bleed and one which my doctor and I discussed for 10 minutes. (Does twice a day make a difference? He says it’s only a 1 to 2% gain twice a day and wants me to take it once a day.) But I was desperate to use any tool in the tool box to get my numbers up. I’ve been doing my treatments three times a day, as always, with more vest time.  Flutter, of course. And I used the big gun of Cayston the minute I got out of the hospital.

Lucky me.

I also had a great visit because the doctor is top notch – outstanding from a medical standpoint – and human, caring and understanding.  It wasn’t a busy day and he listened to me vent about the last hospital stay and we came up with ways that future stays for all CFers can be improved – measured cups for hemoptysis volumes to reduce guessing; faster decisions to embolize. I’ve never met a doctor with a better understanding of what it’s like to stay in the hospital. He’s awesome. Bromance in the air? Kidding.

I’ve avoided a oral glucose test for the past three years. I’ve never had the time to go to the lab for two hours, or I haven’t wanted to take the time to do it. They’ve written me a dozen Rx’s for the test and it’s kind of a joke when I ask them for a new one each time. Tired of that game, they made me do the test at clinic and skip my morning McGriddle, which made me McMad. Not sure how I did, but I know I’ll find out soon. Scary waiting for results for that test, which is why I’ve avoided it.

I hate questionnaires – especially CF-related questionnaires. I’m at the point in my life that if I don’t like a question, I don’t answer it. When they asked me about sexual intercourse and my family history, I said “next, please.” Let’s concentrate on the questions that have some chance of making me well, people. I don’t give a sh** about zoo experiment statistics that you discuss over lunch and have no bearing on my health. Some of what I go through is none of your business. And the less I talk about certain members of my family, the happier I am.

The social worker visit? Hi. Nothing to say. Bye. Don’t take it personally. (They are my dark thoughts. I don’t need to share them with the world. Does a blog count?)

Here’s a mini-story about irony. The clinic visit, which was my “annual” visit even though feel like I live there, went fast. Usually they go slow and I’m there three hours. I could have been out  in 90 minutes if not for the glucose test. ARGH. And I promised to complete a six-minute walking test for a study they were doing, which also included a questionnaire. And I completed that questionnaire while the nurse was asking me questions from another questionnaire. Two birds, baby. I’m the zen master of multitasking questions. Ask away. I won’t answer, but you can ask.

I completed the six-minute walking test, back and forth in the waiting area. 9 complete laps and some extra feet for good measure. A month ago in the hospital my results were not good and I “desatted.” Not this time because I am full of luck to the point it’s falling out of my pants. And I’ll feel that way until the next time I cough up blood on a Saturday afternoon or have to be admitted. But until then, it’s all gravy, baby. Gravy.

The disease formally known as . . .

Lawyers often say that you should only ask a question you know the answer to. I’ve decided to ignore that advice with the following: What if we renamed cystic fibrosis and called it something else?

What if we used a symbol instead? We all know how that worked out.

This is a question answered by other questions. Can you change the name of a disease? Would you want to change a name of a disease? Would lighting strike for doing such a thing? Is it a crazy idea to contemplate? Where did the idea come from?

I can answer the last question. I hate having cystic fibrosis. I hated the name growing up. I still hate the name. That’s where it came from.

I’m tired of having cystic fibrosis. I’ve been embarrassed to speak the name all of my life. It doesn’t roll off of my tongue. It feels foreign, alien, like it has nothing to do with what I have and explains nothing that I go through. Sometimes it elicits a blank stare when spoken to others. So, this idea of a name change must spring forth from my unconscious and conscious minds and their desire to shed cystic fibrosis from their lexicon. Would it feel like a victory if I no longer had “cystic fibrosis,” but a disease of another name?

I have no idea what we would change “cystic fibrosis” to. I only wonder if we could and what would happen if we did. Web sites would have to change, as would stationary, history books, medical texts and the minds of E.R. doctors who know nothing about cystic fibrosis and who would be even more confused by a new disease. It would be easier to move the Empire State Building three blocks than change the name cystic fibrosis. At least it feels that way. And it probably is as pointless as moving the ESB three blocks. A lot of effort and what’s the reward or payoff.? Is there a reward other than saying you did the impossible? We moved that building, damn it. It can be done. Now let’s move it back to where it was.

I know it’s a silly question. It’s an impossible feat. But something inside me says “what if?” What if I no longer had “cystic fibrosis”? Even if it’s in name only there would be something really nice about that. I’d never again have to tell anyone that I have it. The words “cystic fibrosis” would never again leave my lips. Of course, I’d have to tell people I have a disease and that would require a name. And, as a I mentioned, I have no suggestions for what that name would be. I only wish George Carlin were still alive and I could ask him. I know he’d have a great name. And I know you’d never be able to say it out loud in public or on television because it would be X-rated and censored. But that would make me love it even more. Every time I coughed and people stared at me, I’d just say, “It’s okay, I have f**king *$#*&%# *&#$#** and there’s no way in hell you can catch it, Jerk-off.”

Perhaps, I should contact Prince for advice. He’s been there, done that. But even he knows that sometimes a name is difficult to escape no matter how hard you wish it away.