Tag Archives: cystic fibrosis

Angry Birds, Californication, used cars and work

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[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

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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.

http://latimesblogs.latimes.com/lanow/2010/11/state-fines-12-hospitals-for-serious-errors-eight-are-in-southern-california.html

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?

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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

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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 . . .

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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.

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Reflections on the ICU and Second Embolization

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(I’m continuing the story where I left off a few days ago)

After the doctors performed the first embolization on Friday, I started coughing up blood on Saturday, which was quite a surprise and a mental defeat. In my mind, it labeled the first embolization a failure, as I shouldn’t have bled again. And I must say the second bleed did seem to stump the docs, who thought they had plugged the leak. My most excellent CF doc explained it as a plumbing problem where pipes of different sizes meet and don’t line up correctly and leaks continue. I didn’t understand his more medical explanation but I had full confidence he did. One of the crazy weekend docs thought it might be from damage to my right lung, my bad lung (I have a good and bad lung), and told me I might need  part of my bad lung removed, which didn’t make me feel so optimistic about my future. Luckily, he was wrong and a stupid MF for thinking out loud in front of me, hence the reason he’s on weekend duty and not scaring the shit out of  patients during the week.

Now if I were completely out of it and in the hospital, the ICU would be the place I would want to hang out. The big glass windows and non-stop, obsessive care sounds pretty good when you’re in an unstable state and hanging on to life. However, when I was moved to the ICU for the bleeding, I was coherent and able to move around. That soon changed when they tethered me to the IV pump on the right side of my bed and the 24-hour heart monitor, oxygen and pulseox on the left side. Frankenstein bound.

As I like to hunker down in my hospital room with the door closed during my normal hospitalizations, this fishbowl of a room where I was the star attraction became my nightmare. When I discovered it had no private bathroom and came with a juice bottle for urine and camping toilet that folded out from under the sink, my bowels puckered up and went on strike. The privacy was one step up from a prison cell. And despite the curtains with partial coverage of the room, I hadn’t reached the point of no shame where I would feel comfortable when a nurse discovered me with my boxers around my ankles, iPad in hand and my rear placed firmly on the toilet seat. I may not take a shower in the hospital, and I may resemble a homeless man with my greasy hair standing straight up, but I’m not at the point where I feel comfortable having a conversation with someone while I’m taking care of business.

And to top it off, the first nurse, who had some a-hole laziness in her, handed me a green box of tissues to use when I asked her where the toilet paper was. These cheap hospital tissues are small and see-through and as absorbent as rock. A much kinder nurse gave me toilet paper when the situation became unavoidable. I made it a point to let the first nurse know about the kindness of the other and to give her a look of “I should strangle you with my oxygen hose right now, but I need it to breathe.”

Thanks to other emgergency IR cases, I didn’t get in for my second embolization until Monday afternoon. At this point, all airway clearance was stopped and they put me on steroids for the jaw pain. Adios morphine dreams, hello steroid hallucinations. Yep, hallucinations. Real ones. Good ones. Like the time I was sitting in bed and the wall moved forward at me real fast, back and forth. Or the time I lay there half dazed driving through worlds painted by famous artists. My favorite was the night I had imaginary friends in my room and woke to find they had abandoned me. What a lonely, sad feeling that was.

Monday afternoon rolled around and my lungs felt congested from no airway clearance. I said goodbye to my wife at the waiting room for a second time, deja vu, and heard the same potential complications speech from the doctor. With no bronc this time, I never reached full unconsciousness. I hung in the misty middle earth of reality and feeling drunk on Colt 45‘s. I do remember them cutting into my groin. I almost said something like “should I be feeling you pinching my private area?” but didn’t care thanks to the fifth beer in my veins. And of course the doctor asked me to perform the same task of a holding a deep breath, though I did have to clarify if he wanted me to start inhaling on 1 or 3. Let’s be clear here, Doc, I’m in an altered state and you’re killing my buzz with these reindeer games and their complicated rules. Is it 1 or 3 when I start breathing? Clarity is the key to happiness.

Three hours later, with Monday Night Football playing in the back room of the IR OR, the team seemed more interested in the game than me lying there on my back with a hole in my groin. Luckily, one doctor stayed behind to seal the leak, though I did think for a moment it would be fitting that I, a lifelong football fan, might die because of MNF. Doctor to my wife: “We’re sorry, we got so caught up in the Bears driving for the score, we forgot to close the hole in his groin and he bled out. But he did lay 100 bucks on them to win the game. Here are the winnings, which I’ll apply to my fee.”

During the three hours, the doctors did a lot of looking around. The area where they performed the first embolization looked much better than on Friday, which was good news. They also found another area that didn’t look normal, probably wasn’t bleeding, but fixed it anyway to help me avoid an episode in the future and help themselves feel better about it not being an unnecessary embolization. It’s hard to say if the second round of bleeding would have gone away on its own without the second procedure. It may have. We’ll never know. The plumbing may have worked itself out.  I was just happy to be done with surgeries that start in my groin.

And can I tell you that the next day when they wheeled me out of ICU and back to the CF floor, my mini-fridge of probiotics on a cart next to me, it was the first time in my history of hospitalizations when I broke down and cried. My CF doctor came to see me and I had nothing left. The energy I used to make it through the two embolizations, and four days in the ICU and three hours of sleep a night (the ICU is never quiet or dark), left me drained by that point and I was very happy to see him. It was the point in a spy movie when the spy, captured and tortured, finally reaches his pain threshold and breaks. That was what it was for me. It was the first hospitalization that broke me. I’m not proud of the moment but I am proud it took me dozens of trips there for it to happen. And I hope I never experience it again, though I have a gut feeling I will. At least I’ll be better prepared when it does thanks to the scar tissue from this visit.

And now for today’s grift

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"Diamond teeth make me feel pretty, oh, so pretty."

 

My wife went to the dentist today – an honest dentist who shares a lot of interesting stories. One was about an elderly patient who brought in his more elderly mother for an exam. The woman was a few weeks out of bypass surgery and didn’t look like she was doing well and might not have much time left. They had gone to another dentist who recommended $35,000 worth of dental work. (It must have been same the diamond package Kayne West recently added to his lower teeth.)

Fortunately, my wife’s dentist did the minimum needed to make her comfortable and saved her enough money to buy a new Cadillac, if that’s what she wanted to do with the leftover money. Whereas the other dentist wanted to buy a new Cadillac for himself or perhaps the Ukrainian mistress he keeps in an apartment in Van Nuys. That’s how I see a person like that who tries to hose an elderly woman in the last stages of her life – he probably cheats on his wife too.

My wife’s dentist shared other stories about the methods dentists and doctors use to bill for money patients don’t owe per the contract of their insurance – if patients pay the bill great, if not and they complain, it’s wiped away like it should have been in the first place. That one really gets under my skin because we get those bills trying to trick us into paying what we don’t owe. It’s unethical.  Yet, it happens. And I wonder who allows it to happen. It’s not some computer that thinks up a great idea to rip people off. Computers aren’t assembled evil and ready to program devious billing practices. It’s a human who thinks this stuff up and somehow finds a way to live with him or herself, along with the pile of money made from the deception.

All of this makes me wonder how ethical we are as a society. Every day I read stories about people skirting the edge of what’s legal and a gray area of almost being illegal, but justified as a billing error or clerical mistake or medical recommendation. This isn’t a robbery of a 7/11 or someone embezzling a million dollars. It’s not an obvious crime that shows up on a grainy video on the 11:00 p.m news. This is a different kind of robbery. It’s not glamorous. It’s not easy to detect. And yet, it feels like it’s happening more often and some justify its financial “cleverness” and ignore it unless by some miracle of detective work it’s exposed.

It’s modern-day grifting and the victim is our bank accounts and faith in others. One’s not so easy to recover.

CFRI news

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I received an email with the link for the latest issue of of CFRI news. I love the title of the cover article: “Crystal Ball Looks Positive For People Living with CF.” I hope so. It feels like we are so close to a major breakthrough, as if there’s a drug out there on the horizon that will change our lives. We just have to use every advantage we have until it arrives. With so many smart, crafty people working on ways to outfox this disease, there is reason to be hopeful. Something has to break soon. And when it does this disease will fall like a house of cards in the wind – a wind created by hope, love, science and the thousands who blew with all their might.

Thanks CFRI for making me feel more hopeful today about tomorrow.

(Please visit cfri.org for more information)

 

I've always enjoyed this news source and thank them for their hard work.

 

Highlights from my recent hospitalization: The 1st embolization

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I’m reminiscing about some of my recent adventures in the hole. Here’s the day of the first embolization.

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After six days of coughing up blood in the hospital and playing the “how much blood did I really cough up?” guessing game with the doctors, I won a trip to the IR room for a bronchoscopy and embolization. When I had an embolization in Germany eight years ago, it took the doctors 12 hours to bronc me and 24 hours to embolize me. It was simple and in a foreign language with fewer doctors making the decision. During my recent hospital stay, a lot of doctors were involved in the decision which I can only guess made it easier to delay an actual decision. I knew by day two when the IVs weren’t working their magic that I needed an embolization. But I didn’t have the courage to force the process and expose myself to a procedure where paralysis is a possible complication. But I knew the lung wouldn’t heal without intervention.

By the time I reached the IR room on day six, I still felt in control of my emotions and alert to hospital dangers. My wife was there and I held back the tears when I left her at the waiting room and they wheeled my bed another 100 feet down the hallway, parking me outside the IR while they prepared the room. I signed releases and heard about the risk of paralysis again, thinking that there were benefits to having my first embolization spoken in German. There are no risks when you don’t understand the language and your only goal is to get on a plane and return home. It was annoying when they read the potential complications in English. What choice did I have at that point? Hearing the risks made me wonder how I was going to buy a gun if I ended up paralyzed. How would I pull the trigger? Is that something I could teach my yellow lab to do?

The bronc took five minutes – bleeding from the right lung – and the embolization took almost five hours. They woke me up when they needed me to hold my breath, which seemed like a lot to ask in my drunken state of mind – a sort of breathing sobriety test on my back. Near the end of the procedure, the right side of my jaw started hurting. When I had a chest tube inserted a few years ago, I had referred pain in my back. So I thought the jaw pain was just that, referred pain from the embolization procedure. I didn’t mention it at the time.

The pain got worse when they wheeled me back to my room. They gave me Vicodin, which helped for a little while. That was about when the hospital power went out, including the back up generator at some point. I was in the condition when one shouldn’t operate heavy machinery so it all seemed surreal. The lights went out and the room heated up without the AC. I had to stay flat on my back with my right leg straight to let the insertion point in my groin heal.

Los Angeles roasted that day in the heat when the power grid went out. It happens here in the summer, though I’m surprised it happened at the hospital. It was quite an emergency. One of my friends joked that had I been in the IR at the time, they would have been up my groin without a paddle. Nice. I’m happy I missed out on that experience.

I need to choose my words carefully at this point of the story. Fact: The pain in my jaw went to 10 out of 10. Fact: It took 90 minutes to get pain medicine and only happened at that point because I had to use my loud voice, which shook the windows of the hospital. (Remember, this was Friday afternoon/evening in a hospital when everyone is trying to split for the weekend; charts come first.) A doctor arrived within 15 minutes and there was concern the jaw pain was related to a possible heart attack (thankfully not, the tests showed). They gave me morphine for the pain. And there was concern some of the embolization material broke off and cut off the blood supply to the jaw nerve. I had to smile and make funny faces and demonstrate my facial nerves worked. (Yes, they made me take the bag off my head to do this.)

My wife came back to the hospital and spent the night on the fold-out bed made of rock. I love her for that. It helped having her there. And she was there in the morning when I coughed up blood again (what a terrible surprise that was) and when they moved me to the ICU, a hell of its own I’d never experienced before and hope never to experience again.

To be continued.

What does the future hold?

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On Friday afternoon I led a conference call with some members of the department. They were upset because the senior management of the department is bringing in consultants to do the job they’re doing. So, naturally they feel threatened and discombobulated about the tactic and they worry about their jobs. I had to listen to 30 minutes of them imagining every possible negative scenario that might happen. Then after the maple tree of discontent and fear had been tapped dry and its sticky syrup rubbed to a nice protective lather, I asked: Is there anything positive that might come from this situation?

Silence on the phone. More silence. I refused to break it.

“Well, maybe,” one of the fearful said. “Perhaps management will get a better idea of the scope of our jobs.” Bingo. There is a possible positive outcome. And more of them came up in the conversation and the negative outcomes fell by the wayside. I’m not sure which will come true for the team when we bring in hired guns. I do know from experience it will never be as bad as some of them predicted. The sky won’t fall and lightning won’t kill them.

And I wonder how I’ve modeled this negative outlook over the years and now with cystic fibrosis. The belief that one can predict the future must come with the disease. And I’ve made the mistake that I can prognosticate all of CF’s negative outcomes. When I was young I predicted that no one would ever love me and I would never get married, and a child was impossible. Yes, one mother of a girlfriend didn’t want her daughter dating me because I had CF and no future. Yet somehow I met someone else who was brave, a fighter, and believed in a future with positive outcomes.

I also predicted I would never make it to 30. Wrong again.

I have a long list of predictions I’ve blown over the years.

So, today I wonder: What does the future hold for me now? My answer: I have no clue, and I’m not going to spend my precious time worrying about it today. I’d probably guess wrong anyway. History shows I have that talent.