Monthly Archives: October 2010

Playing nice in the sandbox – being Swiss at work

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[adult language]

I miss the days when I used to travel light. When I threw clothes in a bag and drove away without six pounds of meds and compressors and nebulizers and CF-related paraphernalia. Luckily, this week’s business travel didn’t include an airplane flight where TSA agents’ main objective is to embarrass me by having me remove everything from my bags. I hate airplanes and air travel for so many reasons now. But again, I only had to drive this week. For that I’m thankful.

I had three days of meetings, many of which I had to lead. If I had a favorite moment it was the opening when we went around the room and introduced ourselves, stating our position, years of service and other standard information, ending with a question: “What’s your favorite vacation spot?” Lot’s of possible answers to that one. Islands and Disney were the most popular. I would have liked to answer “the hospital” because that’s where I spend most of my time outside of work. However, this would have raised eyebrows and revealed my secret identity, which is now known in HR but not to others.

I dream of winning the lottery because I’d live in a large house with a big yard, donate to CF research, and not worry about money and health insurance.  I also dream of winning so I could stay at my job for a few weeks and say what I want to say. That’s right, I wouldn’t quit right away after winning. I would stay. But I wouldn’t want to hurt anyone with my words. That wouldn’t be sporting. Rather, I would like to quit playing the dance of being Switzerland, of using the most neutral of phrases and replies. I’d like to be blunt and not worry about making people feel like their idea was the best I’d ever heard. I’d like to hit a buzzer and say “average idea, you can do better.” Or tell my bosses that micro-managing sucks and we have a proofreader for catching typos. Management’s job is to avoid icebergs in our path, not visit the engine room to fix a spark plug.

I’d tell the guy who sits back in our meetings and looks for things to criticize to shut the fuck up. I’d tell him I don’t want to hear anything negative and to keep his pie hole shut for the duration of the meeting. End of story. If he wants to say something positive, great, speak up. However, if he wants to point out that under the harshest of deadlines and editing materials while I was in the hospital, that I could have used a different event on our timeline, well, he can kiss my ass. Because in the scope of life, it makes no difference. And perhaps that’s what irks me more than ever as my life nears its conclusion – so much of the time we spend at work is spent on trivial discussions. It’s not that the work doesn’t matter, it does. People matter. It’s how our time is spent that both fascinates and irritates me. In our quest to play nice in the sandbox, it takes longer to get to where we need to go.

And that goes to my lottery fantasy – saying what we want to say, not being mean to be mean, but stating it as we see it. Not being afraid to debate, or of healthy conflict without the constant fear of losing one’s job.

I’d also like to tell those who think that they deserve special recognition every time they do their job or work an extra 15 minutes at the end of the day that they are really doing just what they get paid to do. No one hired them to be average. Imagine interviewing for a job and stating that you’re going to do average work and want recognition every time you do great work. You’re paid to do a great job, asshole. Do it without the need for constant recognition that you’re doing your job well. The coolest cats, men and women, are the ones who do a great job and keep quiet about it. They don’ t need daily accolades. They have their own internal scoring system.

I think of my daughter and hope that she will work hard in life and find a career that makes her happy. I hope it’s one where she feels free to say what she wants to say. And I hope that opportunity exists by the time she grows up. I’m not sure it will.

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.

Letter to my daughter, 10/14/10

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Dearest,

If God had come to me a year before you were born and asked me to design the exact daughter I wanted – that your mother and I wanted – I would have worked on your design day and night. Every waking hour spent thinking of every detail, your hair color, your eyes, the way you speak, your voice, your personality, and anything I could think of that would make you perfect. Would you know how to play every musical instrument, speak every language? Would you be tall, short, medium height? There would be details of details to consider.

And I can tell you this. Had I spent that year dreaming up the ideal daughter, the daughter your mother and I are so lucky to have, I would have missed the mark completely compared to the perfection of the daughter we received. Even if I had spent a lifetime in a cave working every moment of the day, I would never have come close to the marvelous person you are. I would have failed and been so happy that I did. (I’m happy I was not given the task to begin with.)

You are perfectly imperfect and a once in a lifetime combination of spirit and intelligence and Tabasco sauce. And you are brave. You have handled my hospital stays with courage and grace. I know you will continue to do so no matter what happens, and that you understand your search for happiness and love and humor trumps anything bad life might deliver. Tell life what you want it to be – command it like it’s your Labrador. Be patient, kind, and give clear instructions. It will retrieve everything you need when you need it. Trust me. It will.

I love you.

The Cost of Battle

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If I can compare the 20 days in the hospital to anything, it would be 20 days in enemy territory getting shot at and dodging explosions. In the movies, when the lead actor escapes the battlefield there is a moment of personal inventory. What’s bleeding? What’s broken? It’s just good to be alive. That’s the point. To survive no matter what. In the movies everything heals over time.

I’ve been taking inventory the last few days.

Hearing – more lost thanks to the 20 days of tobra. I can’t hear some high pitch sounds in our house like the alarm. The sound is gone to me. My ears play Jingle Bells 24/7. I left for battle and the explosions took their toll. When I returned, some of my hearing stayed at the hospital. Hasta la vista, high pitched sounds.

Lung function down over 20 percent according to the PFT in the hospital. Will it come back? Let’s hope.

O2 levels normal. That’s good news. So far so good.

Low grade fevers and chills. Still hanging on me. 5:00 p.m. rolls around and it’s time for a nap and baby bottle for me. I’m gone. The CF center seems content to let me suffer through them each day. It’s probably my anger talking. I’m still irritated about some of the decisions or delayed decisions of the stay. The CF team is solid though. I know they care. They just have a lot of patients to deal with.

Over 10 pounds shredded thanks to sitting on my ass doing endless IVs and a lack of an appetite for the same bland food every day. The endless fluids they gave me in the hospital masked the weight loss. At least I’m not peeing 20 times a day anymore.

No blood. That’s a good thing. It hasn’t returned yet. If it does, I can’t decide if I’ll go back in the hospital or just hunt down the people who couldn’t get it right after two embolizations. I’ll throw them on a table and cut into their groin and see how much they like it and educate them on the importance of getting it correct the first time.

Aches and pains. I could use a little time on a medieval torture rack being stretched right now. Or tie me between two horses and pull my limbs until my back pops and I get back the two inches in height I probably lost in the hospital. Tell me again why they don’t offer massage therapy in the hospital? I can get all the morphine I want while I’m there, but a little quality time face down with a certified member of the massage community digging her knuckles into my backside is verboten.  That makes no sense.

All in all, I got my ass beat. And that makes me angry because it’s embarrassing to get beat up. Worst of all, CF didn’t do all of the beating. The doctors helped and I did my part with mistakes I made. Hindsight again. I wonder if I can have it removed? Life would be easier if I weren’t tortured by my errors. I should have seen the landmines, been more aggressive about getting the embolization done quickly instead of waiting six days. There were plenty of other errors I made. Where did my courage go while I was there?

Not feeling so hot

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Though it’s good that I’m out of the hospital, the bad news is that I don’t feel well. During the hospitalization, I suffered from chills, low-grade fevers and sweats that would leave me soaked like I’d stood in a downpour for 20 minutes. In the afternoons, early evenings I would crash hard, which explains the lack of blog posts during the stay as it’s hard to write when you’re curled up in a ball hoping a bolt of lightning will strike you and end your misery. No such luck.

All of this mystified the doctors and they never really came up with an explanation. When I went off the Tylenol a few days before they kicked me loose, they looked at that as a positive sign. So did I. But they never really asked me how I was feeling when they surprised me Friday and sent me home. They made an executive decision that 20 days of IVs was enough. They must have entered it into their mental program and processed it – Send him home, he should feel better by now. I guess I should, but I don’t.

I brought the low-grade fevers, chills and body temperature swings home with me. What a bonus. Now the question is whether I have to go back to the hospital or not. I lived with them over the weekend hoping they would magically go away. Finally, I emailed my doctor this morning and he replied with a few questions about my stomach, which is fine. Then I didn’t hear back. He must be hoping this will pass, go away without explanation, which is what they all must have been thinking while I was in the hospital. Well, it didn’t go away tonight. And tomorrow I go back to work and I feel tired and 50 percent. It’s going to take everything I can muster to get through the day.

This is the first hospitalization where I feel the decision-making system during my stay failed me. It took them six days to embolize me. I wish I had had the courage to force the decision sooner. I didn’t. But I knew I needed to be embolized from day one. They kept throwing the possible dangers of the procedure at me. Yet, my lungs decayed by not doing treatments. I may never get that lung function back. It’s one thing to be hosed by cystic fibrosis; it’s another to be hosed by the medical process. The latter makes me angrier.

I’ll be tortured about this visit for the rest of my life.

Home at last

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After 20 days in the hospital, I returned home Friday night. But not in great shape. You’d think after that period of time in the hole and amount of IV antibiotics, I’d be walking in, refreshed, strong and ready to get back to life as normal. Instead, it felt like I’d run some kind of endurance race or Ironman and barely had the strength to cross the finish line or threshold of my front door. I fell over the line exhausted and disoriented.

Three weeks ago, cystic fibrosis picked me up in its monster hands like I was a rag doll and tossed me hard to the ground. I didn’t see it coming. And after 20 days of sitting in a room the size of some walk-in closets, my body and muscle mass have deteriorated and my mind feels twisted and tired. The physical bruises of blood draws, the PICC area and embolizations will heal over time, but the rebuilding of everything else will take longer. But still I feel lucky. I survived. And that has to be enough for now.

Thank you for all of the comments and well wishes. They made a difference each day. A big difference. My apologies for not replying yet. As the stay lengthened, it turned into both a physical and psychological battle that sapped my energy. Most of the time I escaped into episodes of Dexter and Californication, movies or reading, when I had the energy. Anything that took my mind off of cystic fibrosis and the situation helped and became my mental Band-aid. Now it’s one day at a time as I come back to life.

Despite everything that happened, I still stand by my claim: I am the luckiest guy in the world. CF hasn’t beaten that mantra out of me yet. It’s my F.U. to the disease. CF can choke on it.