Category Archives: Health care

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.

Dark Thoughts Slither Back

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Two weeks ago today I sat at my computer. With my airway clearance completed and a stomach full of McGriddle, I had the entire weekend ahead of me. Would we spend it at the beach? Any local events? What to do. Then I coughed and it was blood. Not a lot, but a surprise. I wasn’t exercising or doing anything that might create that result. But there it was in all of its glory. And I knew the weekend was gone and I needed to bother my doctor for some cipro on a weekend.

Today, I sit at the computer, an iPad, and my location is a hospital room. Day 14 of this unbelievable odyssey continues. And though I’ve done a good job up to now holding back certain thoughts I’ve fought with for 30 plus years, I feel like giving up, ending it. It’s all so overwhelming – the past two weeks and the future. I’m not sure how I am going to do it, balance everything, work, life and possibly oxygen for the first time. The O2 feels like the least of my worries. Just trying to keep my life as I know it presents the most fear. Do I have the energy to live it?

I used up all of my fighting-stress reserves the past two weeks. I have nothing left. I feel like a piece of safety glass fully cracked and splintered. One tap to it with a hammer is all it will take to shatter the glass into a thousand pieces, never to be put back together again.

Hospital Update

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(Written on my iPad in my hospital bed; please excuse typos)

Day 12 of the endurance test continues. After 9 days of fountain-worthy bleeds, one bronchoscopy, two separate embolizations, morphine dreams, four days in a hell called ICU, and steroid hallucinations, the demon known as Hemoptysis has withdrawn. No traces today. Just unfriendly memories. But I’m not out of the woods yet. The 11 days of vacation from airway clearway may have felt nice, but did a number on my lungs. The bacteria have fled to their bunkers and it’s taking the big bombs and hypertonic saline to loosen their hold.

Afternoons are still tough. I do a header into bed like a drunk Olympic diver who hit his head on the edge of the board – I get zero points for my bellyflop entry. I’m still on O2, which is thanks to the lack of airway clearance, inflammation and the party juice they gave me during eight hours of procedures. I’m proud it took them a ton of drug to knock me out. I remember cracking bad jokes right before the bronch and hearing someone say “how much have you given him?” Then I heard about the amount before the second procedure because they were surprised how much it took to shut me up (my wife asked for some to go). We’re not talking about Michael Jackson status here, but the King of Pop and I could have partied together, IVs in tow to see who who could stay awake the longest. Unfortunately, my lungs are still paying the price for my endurance and there’s no “hair of the dog” cure sitting around ready to be mixed.

Embolization hangovers are the worst.

I’m making light of a serious situation again. I hate when I do that. Shit, I’m alive. And I can tell you that this experience made me realize I got everything I wanted in life. I have two California girls who love me and who I’m going to hug like stuffed animals when I get out of here. That’s more than enough to get me through life. More than enough. I am the luckiest guy in the world. Believe it. I do.

Yesterday, all my troubles seemed not so far away

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(typed on my iPad. Please excuse typos)

It’s embolization time. Game time. Operation “Find and plug the leak.” The medical version of Where’s Waldo?

Last night, when I sat down to write my blog post, “pop” went my lung. 60 cc of the stuff vampires dig. Fresh from the source. Hot, red and tasty – if you’re dead with fangs. Another fifteen cc and I would have been send to the ICU. Fortunately, I didn’t cross that line. I’ve been able to enjoy the day in my room working. But I’m tired because I had to maximize the folding bed to its most upright position, which is the same as sleeping against the wall with your ass on the floor. Comfortable it is not.

Medicine is funny. I always thought it was science. I’m not so sure anymore. I don’t think it’s progressed much father from the days of witch doctors. There are just more potions to choose from and the witch doctors don’t fight to the death when they disagree. Still, perhaps, one day the phrase “get a second opinion” will change to “get a fourth opinion.”

Do doctors agree on anything?

I’m not sure, as there has been much debate about whether to embolize me or not. First, one doctor told me that I needed to cross the magic mark of 200 cc of blood to make the cut and get the magic lung glue. Then, today another opinion arrived and the 200 cc barrier disappeared. “It’s a judgement call,” he told me. Oh, how the story changes from day to day.

The attending, who I like a lot, opened the door today and told me from the hallway that tomorrow was my lucky day – I’d won an embolization and a bronc as a topper, the icing on my lung-shaped cake. OH, YEAH, baby. Jackpot. Mama needs some new shoes. Let it ride on red while I load up on Jack and Cokes and fill my pockets with coins from the slot machine. Hold it, this machine pays off in enzymes. Oh, it’s the Wheel of Fortune – the CF Life version. Damn, I played the wrong one.

All week I was told IR probably wouldn’t notice my case because of that 200 cc minimum. The funny part is that they always had to guess at how much I coughed up. Is this science? Really? If 200 cc is such an important number, why don’t they give me a measured cup to cough the blood into? The doctors acted like carnival employees guessing someone’s weight. I asked for a couple of measured cups last night so I could get a precise measurement and stop the lottery guessing game. And my plan worked. Almost.

The doctor came in this morning and looked at the 60 cc in a cup and said, “what is that about 75 cc?” “No, 60,” I said. “Let’s just call it 75,” he said. “I want you to get an embolization.” I sat there staring with my mouth wide open. Science? I have a precise measurement in front of me and it’s circumvented by the doctor. I give up. There must be some advantage to making up your own measurements.

So, tomorrow’s the big day. Several months ago, my CF doctor told me the possible complications of an embolization. I can’t repeat them here because I’ll need to wear diapers if I do. I liked the one I had in Germany much better, as the instructions and complications were spoken in German. I just nodded and said, “sounds great, can I have the lung glue now, Herr Doctor?”

Oh, and though my idea to cough up blood into a measured cup worked, I need a bigger opening. Some of the blood missed, hitting my tennis shoes and floor. How much would you say missed the cup? What would you guess? My expert opinion on guessing blood on the floor? I’d say about 15 cc. 🙂

(to be continued, I hope)

Embolization watch and the TV show Dexter

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(Please excuse typos. Written on my iPad while I have a raging headache from non-stop IVs.)

Well, I can’t say that days two and three in the hole have been a real joy. With the exception of coughing up blood, I felt better before I came in on Sunday. Now I feel crappy from sitting in this room all day trying not to bleed, wondering what guy has to do to get a little glue in his lung.

Last night I came about as close as you can to moving to the ICU and then an embolization. I stood up to walk across the room and felt the pop in my lung and the blood followed. Luckily, one of the nurses had the vision to leave a pink kidney shaped basin in my room, but not all of the blood made it there. Some of it landed on my UCLA shirt that I wear to mess with the Trojan fans here, and my sheets have dried blood on them today. If you took a CSI light to the room I’m sure it’s in places I can’t see. It’s amazing where blood goes when it splatters. It’s not like coughing up Gatorade.

Speaking of blood, I’ve been watching Dexter episodes. Great show. I’m up to season three. What hits me about the show is how much I relate to Dexter himself. I’m not talking about the serial killer part so don’t call the police, though I would love to take out bad guys, but not by chopping them up. A sniper’s rifle would do. Rather, I relate to Dexter keeping a secret from those he works with and his life with blood.

Yesterday, to avoid the RTs who burst in and yell “ready for your treatment,” I spent 30 minutes in the bathroom on a conference call with the heads of the department I work in. Then there are other times I’m on the phone and someone will come in and I have to do a dance of signaling the person to keep quiet while I get off the phone. I am doing my best to keep the CF secret. But it’s getting harder to do so. I feel like I live in this hospital.

And I can tell you my single greatest source of stress in maintaining a job while I do this dance of having CF and working. Is that similar to Dexter maintaining his “normal life” while leading the life of a killer? It would be much easier if I could kick back and read and watch videos all day. But I don’t want to give up the job.

Still, it’s so embarrassing to tell my boss that once again I’m in the hospital. And working in the hospital is getting harder when I don’t feel as well. There were times today I stared at the screen for a half hour fighting to stay awake. It was easier to be in the hospital when I was younger because I had the power of youth on my side.

So, like Dexter, I hide my big secret and do my best not to get discovered. I know it’s only a matter of time before I can’t do it anymore – when I run out of tricks. When that day comes I know I’ll feel a great sense of relief but sadness, too. And I hope that one day I don’t live my life in fear of blood. If only Dexter could be a serial killer of bacteria – Cystic fibrosis would be history.

The potato that bleeds

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(Written on my iPad. Please excuse typos)

Ah, the joys of hemoptysis. It started yesterday and the doctor agreed with my suggestion of cipro to nip it in the bud. Unfortunately, the hemoptysis didn’t go along with the program and woke me up at six this morning to let me know it was hungry and needed to be let out. It’s been so many years that I’ve lived with it that I believe it to be a demon or something evil inside me. What’s fascinating is that its season seems to be Autumn. Last week I wondered if it would return once more this time of year and it didn’t disappoint me.

So I’ve spent the day here in jail. They put me on three IV antibiotics which is a first for me and makes me wonder what they haven’t told me yet. It’s Sunday so their only job is to keep me alive until the weekday team gets here on Monday. I’m hoping they succeed in doing that. I’d like to see Monday.

I’ve spent the day playing the role of a potato quite well watching videos and not doing much else – other than bleeding every time I get up from the chair. I have lacked motivation to work or read or do much of anything.

I had to reject the first nurse who tried to put in an IV today. It’s strange how after hundreds of IVs I can tell if the person is going to succeed or not. I knew she wouldn’t by the way she was looking at my arm like it was the first time she’d ever seen one, asking me where I thought she should place it – a sure sign of trouble to come. Then she went for the hand and missed, of course. I love when they miss and have to go through the motion of moving the needle around, in and out, side to side, hoping to hit a vein as if they were spearing a tiny sausage that rolls every time the toothpick touches it. I had to ask for another nurse, which is always a bit uncomfortable. I asked nicely. The second nurse came in and placed it without issues. There is a god.

When my daughter woke up before my wife this morning, I had to tell her I’d won another free trip to the hospital of my choice. She cried. I didn’t, which surprised me. When these CF situations happen, I go into business mode. I can’t take time out for emotions. I have to get ready. It’s never an easy decision to put yourself in the hospital. Emotion only clouds the analysis of the situation. But the conversation with my daughter has stuck with me all day. Block it out. Block it out.

Ah, the joys of cystic fibrosis.

Firing doctors

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I wish I could fire my stomach doctor like Donald Trump does rejects on The Apprentice. “You’re fired,” I’d yell, my hair combed over in a giant wave of spun gold, imperious to all but the fiercest of hurricane winds. “You’re fired for not practicing medicine the way I want you to.  When I ask for the good stuff, I want the same medicine celebrities get with fake ID’s and by using five or six different doctors. That’s right. I want the stuff that makes my troubles fall away and the paparazzi feel like a minor annoyance, a piece of yellow tail stuck between my gapped front teeth.”

Unfortunately, I’ve reached the point where my stomach doctor sees the world his way and not mine. Time to toss him. Time to move on. Not to the point that I’d visit him in his office and say exactly what I think, which would go something like this: “how hard would it be for you to order a **&@$& H. pylori test? I’m the one who has to do all the work one morning collecting the sample – the one I eventually have to drive over to the lab where the tech behind the counter will open the bag and gag, then walk it with outstretched hands to the poor tech in back who drew the short straw of work assignments that day. Yes, people in the waiting area, I’m the only one not here for a blood test. And I’ll leave in shame as everyone stares at me like I just delivered a strain of bacteria only found on a planet in our solar system that will go unnamed.”

“You, crappy doctor, only have to lift the pen, and fill in a circle on a lab test like you did your questionable MCAT, as there were rumors you paid the smart kid in your class to take it. That’s all you have to do, then tell your nurse to give me the paraphernalia I need to make this act happen the next day. But no. You can’t do it as you don’t see the need. Well, good sir, I’ve had it with you. I’m not asking for a 10K test here. Or, is it because I might be correct? That might make you feel bad or inferior, as I only have a medical degree from the College of the Internet signed by a man in a country that used to be part of the USSR. I feel it reflects my skills in self diagnosis quite well. Yes I do. Jealousy on your part, no doubt, because I made a correct call.”

Then I’d fire him. And when he started looking at me like “big deal, crazy hypochondriac,” I’d throw him out the window to watch him land on his new Porsche. Perhaps, the soft-top would have been a better choice after all, Doc, I’d yell.

Now if only the Donald threw contestants out of the window after he fired them. That’s a show I’d watch, but only if the Donald fired himself first.

Reflections on my recent tussle with C diff

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This is what hell looks like for your gut

After 34 days of stomach aches and diarrhea, and heartburn that ate away at my esophagus like an alien ready to rip from my chest and scamper across the room, I can say that C diff no longer holds the upper hand. It causes me great fear to write this because C diff is devious and has in the past come back within a few weeks. That was before I knew about probiotics and the dangers of acid-reducing drugs. So, I continue to avoid Nexium while I suck down billions of probiotics.

The past month has been an interesting story in how doctors approach treatments differently. My regular superhero CF doc saw me first and came up with the  C diff diagnosis (with my help) and prescribed the vanco. I consulted with my stomach doctor during the ordeal. At 14 days, it was clear the vanco hadn’t wiped out the C diff. My CF doctor ordered another six days of vanco. My stomach doctor suggested another 14 and told me he’d call in an Rx for it, if needed. This is always the danger of having two doctors involved. It’s pretty much guaranteed the two will follow different playbooks.

I'm hoping to win a new car and Kenmore refrigerator

With cystic fibrosis, I’m no stranger to this dilemma of different paths. I’ve put myself in the situation may times. Years, ago one pulmonary doctor wanted to treat me with inhaled TOBI and one IV drug. My CF doctor wanted to treat me with two IV antibiotics. I had to choose between the two. And it caused me much anxiety making the decision. This is one of the most painful challenges there is – the fear of making the wrong medical choice. It’s same as the final segment of Let’s Make a Deal when you have to pick between doors 1, 2 or 3. One door hides a big win, while the wrong door sends you home with a goat. (The third door hides about the same value of prize you risked, leaving you neither rich nor poor with your new washer and dryer.) Little did I know when I was a child watching the show at my grandmother’s house that it was really a metaphor for life. Or at the very least, the hard medical choices we have to make.

Luckily, or with educated luck, I chose the correct door in this C diff situation and trusted my CF doctor. He was correct. Had I gone with my stomach doctor’s choice of another 14 days, he would have been correct, too. But hopefully, by not doing an extra 8 days of antibiotics, vanco will still be effective for future C diff bouts.

My last thought on this adventure was that during the weeks of eating soup and drinking Gatorade and avoiding anything spicy or cutting that might upset my digestive balance more than it already was, there was one solid food I could eat which didn’t bother me at all. Yep, one food I could count on. And though I had to go without it for a short period of time while the C diff was hot, it was the only solid food I could count on not to rock the boat.

Long live the McGriddle.

Fox designs a line of hospital shirts

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You can't keep a good fox down.

Fox here. I’m back. And better than ever. I spent the summer in Monaco with some of my Hollywood friends. I’d love to write about my adventures, but I don’t remember a lot of what happened. I do remember waking up face down on the water bed most afternoons, sometimes wearing the dress of the woman next to me. Crazy fox fun.

The entire summer wasn’t a complete inebriated waste of time. I came up with an cool idea for Unknown – a line of hospital t-shirts. Here’s what I’ve come up with so far. What do you think? A different one for each day he’s in the hospital next time?

Party like it’s your last.

Fox out.

Random Thoughts on a Bad Day

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Oh, man. Three good days in a row got spoiled big time today. Must have been the citrus sorbet last night. Who knows? Something inside me goes south in a hurry and in a big way. And it can only be bad things and internal damage to my digestive tract and/or colon. It’s one of those times when I really don’t want to know the answer but I want to get well. Getting old when you’re sick can be a drag.

* * *

I'd like a shot of HFCS straight up, Bartender. Hold the sugar.

I was thinking about high-fructose corn syrup tonight. Who believed this substance was a good idea? Someone who one day thought “sugar isn’t sweet enough – what if I created something sweeter than sugar and harder to digest?” Yeah, genius, that’s just great. Improve upon nature. Go ahead and try.

I can eat sugar, but HFCS makes me feel bad. I’m not sure why, but it does. And it raises my glucose levels higher than sugar. Still, I want to invent Super HFCS. This would be even sweeter than regular HFCS. It would be so sweet that just the smell of it would raise your blood sugar 50 points. And a spoonful would make you pass out. And if you forgot to brush your teeth at night after eating it, you’d wake up with holes in your teeth. Yeah, that’s right, I’m going to make Super HFCS. And believe it or not, people will buy it because people love sweet stuff.

***

Another random thought for the day: Doctors will let you suffer if they think you’re getting better. Any sign of improvement gives them an excuse to do nothing. Here’s how a conversation might go:

Patient: Doctor, I’m feeling bad. Today, I was rolled up into a little ball because of the stomach pain. I cried out for lightning to strike me and put me out of my misery. Help.

Doctor: But you had three good days prior to that, right?

Patient: Yeah?

Doctor: Well, then you’re improving. Today’s just a minor setback. Overall, you’re improving.

Patient: But at one point my stomach ripped open and I had to push all of my guts back in. I’m not sure I put them back in the correct places.

Doctor: I’m sure you put the puzzle back together just fine. You’re trending in the right direction. Call me in two weeks.

Patient: Two weeks?

Doctor: Yep. You’re getting better. Talk to you then.

Patient: [throws the phone to the ground and jumps on it until it’s pulverized into plastic dust]

If you want your doctor to help you, never mention you’ve shown improvement of any kind. Otherwise, you’ll be left to suffer and die.

Stay well.