Tag Archives: fighting cf

In the Cement Mixer

Posted on by
9

[adult language and anger warning]

It feels like someone, I mean CF, threw me in the back of an empty cement mixer and turned up the rotation speed to high. Then, as if that wasn’t enough, someone, I still mean CF, threw rocks in the mixer with me. The noise alone hurts my ears and the rocks cause bruising and welts. Then, as if that isn’t enough to cause pain, someone, you know who I mean, adds broken glass to the mixer. The glass cuts my skin and I start bleeding.

Life with CF - some days

Meanwhile, the cement mixer keeps turning and turning and the rocks keep banging against me and the sides of the barrel. The glass keeps cutting.

Then someone pours salt into the mixer, which makes my cuts from the glass burn.

All in all, this is what CF has felt like lately. First, the bleeding two months ago, two embolizations and 20 days in solitary. Fuck you, CF. Then more bleeding the day after Thanksgiving to show me who is really in charge – it’s not the doctors who perform embolizations – and eight more days in the hospital. Fuck you, CF. The hospital kicked me around too. A blown IV puffed up my left hand and I now have a two-inch vein made of rock. During the PICC line procedure my heart went nuts and a doctor actually had to come to the room. When someone was drawing blood, they hit a nerve and now I have nerve pain in my forearm. Then, one day out of the hospital I caught a virus and my white cell count shot up and set back my progress with the IVs. That’s the nutshell version.

Do I need to repeat tonight’s mantra? I think I do – Fuck you, CF, fuck you, because I’m still the luckiest guy in the world.

A Tale of Two Hands

Posted on by
10

To the untrained eye, my hands in the following photograph may not seem very different – each has an IV in it. However, to me, this picture represents the two types of experiences one can have in the hospital: excellent and crappy. And so much of that experience comes down to the people who work there and their talent and skill – or lack of one or both.

Which would you prefer?

Let’s start with the image on the left, which is my right hand. This is an example of a beautiful IV insertion with its stat lock and white tape and lack of excess tape. Everything is positioned perfectly. All in all, an excellent job.

The image on the right, my left hand, has no stat lock and looks like something I might do if I had the mind to insert my own IV, which I think I could do if the world was coming to an end and my life depended on it. I wouldn’t like it, but I could do it, though I might need the help of someone’s finger to stop the bleeding when I pulled the needle out. Look at the massive amount of tape used to keep the line in place because the thin white tape and stat lock weren’t used. I lost a lot of hair when we removed it.

Now here’s a question for you: Which site went bad and caused my hand to swell up and turn red? Easy answer isn’t it? I’ve been elevating my left hand for the past week to get the swelling down. The vein is rock hard above and below the insertion site. And it hurts. My medical diagnosis is Puffer Fish Hand.

This distinction between medical excellence and crumminess doesn’t stop at IV sites. It happens daily in the hospital with tests, procedures, and doctors. And for someone who stays in a hospital once in their lifetime, then the IV site on the right might not make much difference in the long run. However, I’ve stayed at the hospital four times this year and spent almost a month and a half there. The difference in the two types of care does matter because I’m exposed to more of these swings in quality the longer I’m there. They add up. And many result in more than a fat, tender hand.

Worst of all, not every difference in care can be photographed. The ones that can’t be seen scare me the most.

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

Posted on by
5

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?

Life in the wild

Posted on by
14

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?

Posted on by
12

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

Posted on by
23

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 . . .

Posted on by
5

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.

******************************************************************************************************

Reflections on the ICU and Second Embolization

Posted on by
13

(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.

Highlights from my recent hospitalization: The 1st embolization

Posted on by
6

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

***********************************************************************************************

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?

Posted on by
4

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.