Tag Archives: cystic fibrosis

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.

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.

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.

If I had courage

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If I had courage, I would . . .

Everything you need to make your point in a meeting.

wear a toolbelt everywhere and with all types of clothing. Like a three-piece suit at a business meeting or a swimsuit at the beach. Though I would have to take it off to swim, as my first try would be my last when the tools dragged me to the bottom of the ocean. That might be the only kink in the plan. However, the toolbelt would be helpful with a business suit. Especially when the smart ass at the meeting says, “hey, Joe Toolbelt, what gives?” One whack of my rubber-gripped hardened-steel hammer to his head would answer that question. “Yeah, that’s what gives, part of your skull, Jerky. Hope you enjoy your stay at the hospital. Now would the rest of you like to hear my idea for increasing revenue or would you like a screwdriver in your ear?”

get a tribal tatoo that covers one of my arms. I want to be a member of the tribe with tribal tattoos, though I’m not sure who exactly is in that tribe. Is it really a tribe? A secret tribe? It looks like a pretty diverse group of people with this type of tattoo. I can’t pinpoint one type. But I know if I got a tattoo to match theirs, then they would regret getting their tattoos because I’d be a member of their tribe and it wouldn’t be a cool tribe if I was a member. No squares allowed. Especially freaks wearing toolbelts all the time. Nope, these secret tribe members would have to go to the plastic surgeon and have their tribal tattoos removed and get new tattoos on their arms. Then they’d start a new tribe. That’s okay. All I wanted was the tattoo, not membership in their stupid club.

Ladies, this one is for you. Not in a million years did I ever imagine putting a photo like this on my site. Consider this your birthday present.

wear g-string underwear in the hospital and pretend I was a male exotic dancer. In fact, when anyone asked what I do for a living, that’s what I’d tell them. “Yep, not earning any tips in here while I’m on IVs, am I, Doc?” Then I would make it sound authentic by adding, “The ladies at the nursing home will be missing their love dancer this week. Hey, doc, you think I could do a gig here, in the hospital? Cheer up some patients?” While in my room, I’d play AC/DC and all sorts of dance music and ask the doctors and nurses to tell me if they liked one dance move over another. “Do you like it when I shake my hips first or kick my leg out and pretend I’m a karate guy?” I know this strategy would get me released to do home IV’s sooner rather than later. Nothing scares medical folk more than dealing with a guy in a leopard g wearing a toolbelt and sporting a tribal tattoo on his arm.

write a novel. Yep, I would sit down and finally give it shot and get it out of my system. Or finish one I started. I would overcome the fear that it would suck and would be a complete waste of my time. I don’t think I have enough courage for that. Not in a million years. Can I paste a bunch of blog posts together and call it a novel? Maybe not. Oh, well, let that be a lesson to you. Or not. In fact, there’s not really a lesson in there at all. Not if I have to call it out to you. It has to spring forth organically. This post is a lesson in what not to do. Do you have any idea what I’m talking about? Good. Neither do I, which is exactly why I shouldn’t write a novel. No one would get past the nonsensical first page. Or the picture of me in a g-string on the cover. I can’t get past the stupid male dancer photo I added. It’s creeping me out. What was I talking about?

Stay well.