Tag Archives: cystic fibrosis

Chicken Broth, Gatorade and Jello

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See the two pieces of chicken? That's about what you get.

How much chicken does Campbell’s put in a can of chicken noodle soup? Well, in mine they put three tiny pieces.

I’ve been sick all day with a low-grade fever, stomach discomfort with no appetite, and the feeling I was going to burst into flames like a vampire in the sun. Luckily, I had a clinic appointment scheduled so I got to see the doctor. However, my plans for an oral glucose test, bone scan, and 3-hour azithromax study went to hell. My visit transformed from a yearly exam to a sick appointment. Argh.

The doctor thinks I have a virus or C-Diff. I have to suck down Tylenol to knock down the fever and drink and eat clear liquids, hence the chicken noodle soup broth, Gatorade and Jello. If I’m not feeling better by tomorrow, then I go on Vanco for C-diff. And if the Vanco does’t work, it will be the hospital for me.

I knew it was too good to be true on Monday when I wrote that post. Punished for hubris.

Stay well.

I should have known better

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When I was writing last night’s post, I had this gut feeling that if I wrote about good health, CF would rear back and crush me with a blow to the head. And it did. I woke up sweating, which has been happening on and off for over a month, but hadn’t reached the level it did this morning. My stomach was upset but nothing major as far as pain goes. And, I had a bad reaction to yesterday’s allergy shot. I felt like crap and started to panic.

Hello, Xanax. I took it but it didn’t help with feeling hot and sweating, but did take some of the edge off the anxiety.

I took two allergy tabs. I ate breakfast. Then I started to feel a little better. I forced myself to lift weights this afternoon and felt like I had really good air. In fact, after working out I felt good. Then I ate some carrots and cherries, and 20, 25 minutes later the same cycle started again.

Then during my afternoon treatment, I had some thick blood streaks, which I hope were tied to the workout. Or to the sweating? Do I have an infection after all, somewhere the Cayston didn’t reach? I don’t have a fever, but am hot, sweaty and clammy.

Or is it a reaction to the allergy shot? Is it my stomach? Hormones?

I am amazed that yesterday was so different. I was happy that I’d escaped the hospital, but now I feel like I should check in. I just knew this would happen. I was punished for pride about doing something right.

It’s days like this when I feel like giving up.

Today’s score: Unknown 1, CF 0

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The anger train continues to roll after Saturday’s journey down memory lane of my major medical blunders. And, as that steam engine doesn’t want to return to the station, I thought I’d try to reverse its course with a positive story.

During my last hospitalization five months ago, my CF team told me that I had to quit Cayston because my bacteria were showing intermediate resistance to it. Argh. Cayston? NOOOOOO. The study drug made a giant, positive difference in my life over the past few years. But the team told me to stop it, so I did. They also informed me that I needed two clean samples without any resistance to the drug before restarting it.

I could have sat back and let those tests come naturally in the course of exacerbations, but I didn’t. I requested new samples when I had opportunities, like the  hospitalization for my heart troubles when I argued with the hospital doc who didn’t see the need to collect one, as I wasn’t in for an exacerbation, and another appointment when I wasn’t due for a sputum sample.

I pressed for the tests and with luck got the results I wanted sooner rather than later, which allowed me to restart Cayston.

Now here’s why it paid off for me.

A month ago, I was showing classic signs of an exacerbation with increased coughing and mucus. So,  I restarted Cayston. It was touch and go for the first 10 days with some streaking and not feeling well, but I  turned the corner. And after four weeks, my lung pollution is almost where it is after a hospitalization. Amazing luck. Cayston worked almost as well as IVs and saved me from a trip to hell.

And though this is a simple example, it demonstrates that proactive steps can keep CF at bay – sometimes. Had I sat back and accepted my circumstances and not suggested medical tests when chances presented themselves, I wouldn’t be writing this post – I’d be in the hospital. That’s not to say that CF won’t put me in the hospital tomorrow or next week. As we all know, it can. Still, it’s nice once in a while to escape its clutches by making the right decisions.

Though a small victory in a long war, it still feels good – fleeting – but good.

Breaking up is hard to do

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Last night at the LA Open tennis tournament, guess who sat down in the seat directly in front of me? If your first instinct was to say ex-girlfriend, I wish. Yes, it was an ex – my ex-CF doctor, which opened a flood gate of memories and emotions, most of them bad. What are the odds of this meeting happening? And it being the seat in front of me?

Here’s the backstory.

I’ve made a lot of mistakes managing my CF care as an adult. The greatest was leaving the care of Doctor Tennis at the wrong time. He used to be on the CF Foundation’s accredited center lists, but, for reasons unknown to me, abandoned that path and has since had a private practice as a pulmonary specialist. I stayed with him until I had major hemoptysis on a flight to Germany. I got pissed at him over that and switched to an official CF center, thinking they would take better care of me. Big mistake.

The CF Center I switched to at the time wasn’t, well, very aggressive in treating CF. For example, they used a peak flow for PFTs. Under their care I lost a load of lung function because they were too flexible with my care and I could push them to allow me to use orals when IVs were needed. Whereas, Dr. Tennis did PFTs every time I visited his office, which gave him a better picture of my lung function. He forced me to do IV’s when needed.

Then my CF Center improved and brought in a great team and I bounced back and forth between them and Dr. Tennis, until a hospitalization made me cut ties with him.

At the hospital Dr. Tennis practices at you need his care and an infectious disease doctor’s care when you’re in for IVs. They’re not really a team, but come together when needed. Unfortunately, I realized that the infectious care doctor, who I knew from visits to her office, really didn’t have a good handle on current CF IV treatments. I questioned her decisions. I thought I was doing it in a way that was pleasant – in a we’re partners in this and I know a lot about CF, too kind of way. However, she was immune to my infectious charm and wit, and broke up with me on day two of IVs.

The day before she came into my room and delivered that blow to the psyche, I had spoken to my wife about breaking up with her after the IVs. But she beat me to the punch. And, as it came on the second day of IVs when I was still mentally fragile, it bothered me (and my wife).

Both Dr. Tennis and another doctor said to me “it’s not you, it’s her,” or something close to that. It was good to know that I wasn’t the evil, crazy patient she made me out to be. Crazy? Well, perhaps, but she doesn’t have CF now does she?

So last night, it was comfortable talking to Dr. Tennis; it was okay. It’s probably been four years. His office never contacted me to see how I was doing like my current center did after three months. (I have a great CF Center now.) However, two interesting things did come up. He asked me if I’d like to participate in a trial of inhaled Cipro he’s starting. Yes. Why isn’t my center doing that? He told me his office would call to arrange it. I’ll believe it when the phone rings.

Then, when leaving the tournament, he mentioned the doctor that broke up with me and a piece of news about her. Oh, great. Thanks for that dart to the forehead. It’s not that I wish bad things for that doctor. I don’t. However, like a short fling with someone who broke up with you, you don’t really want to hear she has a new boyfriend either.

Past memories can be great, or they can bite. With CF it’s hard enough keeping bad memories boxed up without someone cracking them open for you. Next year, I think I’ll watch the tennis tournament on TV, or skip it completely.

Stay well.

Saturday Funhouse: Four inventions I need now

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[Adult language]

I need four, count them, four inventions to make my life with CF easier and more fun.

Spit away

1. Bug-zapper dentist spittoon. This invention would be a combo device to cough phlegm into that would kill it dead. It’s similar to the cuspidor suction attachment at the dentist’s office with the sno-cone paper cup – the one that makes a suction sound of whoosh, there goes the blood from your gums and blue mouthwash, drool puss.

I need one major modification made to it.

Die PA, die!

I need the suction device attached to a bug zapper with sound effects. When I spit mucus into it, I want that lung deposit to burn in a small inferno like a fly at a fourth of July BBQ hitting the bug zapper. And I want sound effects when the bacteria bite the dust. How about two-dozen different screaming sounds to choose from every time the green goo burns to death. AYYYYEEEEEEEEE, it will scream out in its last second of scum life. BACTERIA BE GONE!

That will teach you to live in my lungs, motherfuckers.

Step right up, partner and down a dose of Xopenex

2. The hanging neb holder. Remember the 70’s craze of hanging plants from the ceiling in macramé holders? You may be too young if you don’t. Trust me, it happened. Well, I am tired of holding my nebs in my mouth like a cigar. I want a neb holder that hangs from the ceiling, which will free up my hands for a beer and stick of Big Ralph’s Glazed Buffalo Jerky. I’ll attach my neb, then mosey on up and start my treatment while it hangs in the air. Look ma, no hands.

A bungy cord design may work best, as I’ll be able to move around without fear of my teeth ripping out should I make a sudden wrong move, such as passing out drunk with indigestion.

Hulk must regulate the situation now!

3. I want to look like the Hulk in my Vest. It’s impossible to look cool wearing the Vest, with its two hose attachments protruding like cow teats. Here’s my idea to fix that. Have you ever seen those swimsuits for kids that have the life preserver built into the suit?  They look like muscles. That’s the look I want for my vest.  I want to be able to walk outside and not look like an astronaut that needs to be hooked up to his oxygen tank before shuttle lift-off.

When my neighbor sees me he’ll say: “Hey, UC, you been lifting the heavy iron lately? You’re looking buff, my man.”

I’ll reply: “That’s right puny neighbor dude. I have been lifting cars. And if you park that shitty van in front of my house again, I’ll regulate your ass and your van from here to the moon.”

Boring. Add flames and you'll have fun and an act.

4. And now the act you’ve all been waiting for. I want a flutter that plays music. I spend enough time blowing into the damn thing that it should give me more than just clear lungs – it should give me a career path in entertainment. I want to be able to play every song in the Rolling Stones catalog on it.

Can you imagine me performing on America’s Got Talent?

“And what will you be playing for us tonight, bag-over-your-head-guy?” the judges will ask.

I’ll play Gimme Shelter on the mysterious instrument no one has ever seen.

HOLY COW, what an amazing device and sound, the audience will think. He’s spent hours perfecting his technique. Look at how red his face gets.

The performance will go great until, you guessed it, the flutter makes me start coughing up my lung pollution. Then audience members will turn away in horror and I’ll get three X’s and the hook. The last words from the clean-up crew will be: “I can’t figure out how to get this crap off the stage. Someone bring me a blow torch.”

At the very least, could someone please invent a Flutter that is exciting to use, perhaps one that shoots flames? Please?

I could use it to perform at Venice Beach on weekends, right next to the guy who juggles chainsaws near the cheapo-sunglass stands.

I’ll be called Mr. Flutter Flames. And I’ll have no eyebrows.

Stay well.

Dust in the light

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Have you ever been sitting in a room and noticed the sun shining in at an unusual angle – an angle that makes you study your surroundings?

Summer light in the late afternoon with its brightness creates this odd effect. Dust particles float in shafts of light. I breathe that every day? you ask yourself. The room takes on a different look and feel. You notice design elements you forgot were there, such as the wood grain of the coffee table, or the texture of a chair’s fabric. You see details you normally don’t see which hide in plain sight the other days of the year.

I have those moments with CF.

When I was a child, I took powdered enzymes in applesauce. Then, at some point, I couldn’t do it anymore. I gagged on the applesauce and the terrible taste of the powder. They gave me solid pills when that happened. At some point I remember switching to Viokase, then Pancrease, and now Creon. Along the way I probably crossed the “300,000 pills taken” checkpoint, perhaps 350,000.

I often forget that most people don’t take pills with food. The other day I wondered if my wife had taken her pills before eating. Only one problem: she doesn’t have to take them because she doesn’t have CF. But for a moment I thought the norm for everyone was taking a handful of enzymes with meals.

Last night I was doing my inhaled treatments, which I do every single day without fail, and it hit me again that this is something most people do not have to do two or three times a day everyday. It’s routine for me. It’s white noise. But this was one of those brief moments when the sun shined in and I saw my situation in a different light. I noticed, became aware of, was reminded of the absurdity of the daily routine needed to stay out of the hospital.

So, I opened up a little box in my mind, placed the thought inside it, and shut the lid. Then I did two hypertonic salines, my Symbicort, my Spiriva, my heart medicine, and my Cayston, and headed to bed. I knew tomorrow I would repeat it. And again the next day. And the day after. And, with hope and luck, for many days after that.

And I thought: some days it’s best to ignore dust in the light.

25 years with Mrs. Unknown

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I laughed out loud when I started to write this post. I’m serious; I did, literally. Let me explain.

25 years in the best bankrupt state in the union

This August it will 25 years since I met my wife.

I laughed when I thought of that because I have no idea what she was thinking when she started dating me, let alone marrying me. I was/am/will always be a mental case. I can say with 100 percent certainty that I got the better end of the deal.

Her work ethic inspired me to go back to achieve the goal I couldn’t on my own – getting a college degree. I’ll always be in her debt for that one alone, not to mention the way she’s supported me over the years. I can’t imagine that I would have made it this far without her.

We’ve been married for how many years?  . . . do the math . . . wait for it . . . wait for it . . . thinking . . . thinking some more . . . I use words, not numbers . . . here it comes . . . 18 years. Yeah, 18 years, I think. Close enough. Wow, married that long? It’s a blink. I’ve never in all of these years asked her if she had doubts, or how she put the CF aside, or was she worried or afraid? Or, if I did, I’ve since blocked out the conversations. Best not to question another person’s temporary insanity.

I will share where I asked her to marry me, which is pretty corny, but I was an English major and probably deep in a book with lots of overt symbolism, plus I was young and . . . brighter than I am now. Hey, that doesn’t make sense.

I love Dairy Queen and my wife. I especially love taking my wife to Dairy Queen, when we can find one.

Anyway, I asked mi esposa to marry me at the top of the first hill on a rollercoaster at Magic Mountain. The Viper, I think. Just before the car went down the crazy-steep first drop, I asked. And it took the entire ride of screaming and holding on tight and the coaster returning to the station for her to say “yes.” Amazing that she did say “yes,” which may have just been a response to me asking “great ride, huh?” Again, I don’t question it. I don’t understand it, and I don’t question it.

I wonder what she would do if she had a time machine now, would she still say yes?  I know the answer, as my daughter pretty much means she won’t mess with anything that would affect that timeline. So, I’ve safe. Or, my past is. My future? Hard to say. I don’t take it for granted.

What kind of courage does it take to marry someone with CF? I’d guess a lot. And when that CF someone is self-absorbed and the equivalent of a day at a rainy beach with the wind blowing sand in your face, I’d say extraordinary courage is required.

A writer friend of mine, who has since passed, once told me it’s best not to analyze love. I’ve taken that advice to heart and never examined it with a microscope. Shakespeare pretty much covered the subject for all of eternity anyway.

So, 25 years have passed. I know they’re not all marriage years, but with CF, I’m counting them that way. I have to figure out something nice to get her. I know that 25 years with me has been gift enough, but a trinket might be in order. She doesn’t like to spend money and doesn’t like jewelry. I’m at a loss. Hmm, what could I buy for myself that I’d be able to say is really for her? I’ve done that many times over the years.

How can I repay her for the 25 years? I’ll have to think about it. It’s not an easy question to answer.

To be continued.

Visit to my GI doctor

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I went to see my gastro doctor today. I’m so used to going to clinic with a mask and gloves on it felt strange going “naked” to a non-CF doctor with patients in the waiting room not worried about bacteria. I still took precautions by taking my own pen to sign in with, and I used my shirt to open every door. Afterall, it is an office with patients who may have c-diff, which is something I hope I never get again.

The nurse made me wear a paper gown, which could have been 120-grit sandpaper. I should have written “Von’s” on it since it fell like a grocery bag.

When the doctor went to shake my hand, I put my elbow out and told him I might be coming down with a cold. Bad move on my part. Later in the exam, he thought that some of the chest pain might be from the cold. I had to backpedal a bit and tell him I wasn’t sure if I had the cold yet, and we should ignore it as a possible cause. I reminded him I was being cautious because I didn’t want to give it to him and have him give it to his patients WHEN HE SHAKES THEIR HANDS.

Doctors need to drop hand-shaking. Shaking hands comes in second on the list of ways to catch sh** you don’t want, right behind French kissing with open sores in your mouth.

Dr. Gastro wants to do an endoscopy and colonoscopy on me. Argh, argh, argh. Last time he put me under it took forever to regain my lung function. Something about the anesthesia gets to my breathing. More embarrassing last time was when I was just about to go nighty night, I started telling the anesthesiologist how good looking he was. True story. When I woke up he had written his phone number on my stomach.

I’m just kidding about the phone number part, but I wish I was making up the part about going on and on about his good looks. I’m not. It’s embarrassing to think about, but the guy did look like a frigging model.

Regarding the potential procedures, I told the doc that I’d have to speak to my CF doc and get back to him. I’m thinking that the next time I’m on IVs they can do the tests in the hospital. The IVs may help prevent me from losing my air for awhile. We’ll see. Regardless, I don’t want to do those tests, as the potential results scare me.

If only I had a coupe of fistulas on my body. Dr. Gastro could have opened them up and looked inside me, squeezed my intestines and rubbed my colon – all while I sat there and watched.

Oh, cows in Texas with holes in your body, will you ever leave my thoughts?

Stay well.

A Window to My Heart

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I woke up this morning sweating with pain in the center of my chest where my Xiphoid process is located, which is one of the coolest names for anything in the body, and a great name for rock band. I wondered: Is it my heart? My esophagus? Stomach? Where are you coming from, Pain? WHEREEEEEEEEEEEEEEE?

So, at 5:30 in the morning I sat there exceeding the maximum dosage for Tums, hoping it might be GERD from last night’s meal. Then I thought about cows.

I thought about cows because of the latest post by Dr. Nanos, which is a name I like a lot because it sounds very superhero or super villain-like, depending on whether Nanos uses her scientific mind for good or evil. Well, the good Dr. posted a picture of a scientific cow with a fistula in its side (these cows have windows, fistulas, in them so the scientists can look at the cow’s insides and open it up to stick their hands in).

Yuck, get out of my head image of the cow with the ship window in it. Too late.

I had a nightmare a few hours earlier, not about cows, but about someone breaking into the house. And usually I only have nightmares when I eat something that doesn’t agree with me. So, I hoped it was heartburn, not my heart. And I wished I had a fistula in my chest that I could use to look inside my body. (How creepy would that be?) However, I would like to see what’s going on in my stomach and be able to stick my hand in there like a box of gooey slime on Halloween.

The combination of anxiety adrenalin and thinking about cow ports killed any chance of going back to sleep. I sat there on the edge of the old couch I sleep on thinking about how I would approach my predicament during the day. Would I call my heart doctor? Or my stomach doctor? Then I noticed the triceps on my left arm looked gigantic and was tender. I must have had a reaction to yesterday’s allergy shot. Oh, just great, damn it. Now I have a trifecta of doctors to call.

At 9:00, I called my allergy doc, who was very nice and told me not to worry, as we’d bump the dose down next week. I made an appointment with my stomach doctor for tomorrow because my stomach bothered me all day. I called my heart doctor to talk to him, as he’s good at calming me down, but he’s out until August. Dr. Xanax filled in for him.

Tonight I’ve decided that I’m tired of having to go to where the medical equipment is. I want it to come to me. So, I’m going to plan a heist worthy of a movie and steal everything I need. This way when I wake up with pain, I can simply run an EKG or stick an endoscope down my throat to see what’s going on. I won’t have to stress about getting in to see a doctor or going to the ER. I’ll have everything I need. Hmm, I’ll probably need a doctor at home to help. I’ll kidnap one of those, too.

BTW, I’ll need a crew to help me break into the ER, which is open 24 hours a day. We’ll need to carry everything out in our clothing. Who wants to help out?  Any ideas how we’ll get the x-ray machine out?  Send in your resume if you’re interested. Do criminals have resumes? Probably not. An email and prison record will work.

Remember, when you read my future post about all of my new home medical equipment, you have no idea where it came from.

Stay silent, fellow perps.

Those fleeting moments of feeling well

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Today I read a very good post by Mandi at runsickboyrun.com.

http://runsickboyrun.blogspot.com/2010/07/you-feel-like-what.html

She does some nice detective work figuring out what’s it like to not feel well with CF. For me, she touches upon one of the hardest parts of having cystic fibrosis – just generally feeling under the weather a lot. It would be much easier if I felt great for three or four months after a tune-up. Then, bang, I start feeling bad and in I go for a tune-up. Now that I’m older, the stretches between I.V.s test me to a greater degree and are battles to see how long I can stay well and out of the hospital. And not cough up blood – my favorite CF event.

A few weeks ago, my coughing production quadrupled, which is the sign that I’m getting ready for another tune-up. I know the pattern well by now. It’s when I have days I lack energy, have strange chest pains and SOB, and feel like giving up. It’s made worse by the fact I have grind out work most days. But I hate going in the hospital more, though I sometimes think it would be nice to live there.

As I’ve gotten older, CF is complicated by other aging issues. I don’t know about anyone reading this and their experience, but when I don’t feel well the first place I look is CF – it gets blamed right away, villain that it is. However, it hasn’t been the cause of my health problems every time.

It’s a challenge to get my CF doctor, who is excellent at what he does, to look beyond CF. When I’m in the hospital or at clinic and it feels like I have more than an exacerbation, I have a hard time describing why I don’t feel well and the symptoms. This makes it harder for the doctors to comprehend. They think I’m crazy.

I’m embarrassed to say what illnesses I’ve thought I’ve had in the past. However, I have called a few right, one being a wheat intolerance. I thought it was CF causing the madness, but it was because of my diet and wheat. Once I reduced my wheat intake by 90 percent the symptoms started disappearing. I did rub in the fact at clinic that hell froze over and I was correct for once – lucky guess?

I haven’t been feeling well most days for awhile now, as usual, but I can’t blame wheat this time. It’s something else, and I can’t get it off of my mind.

Here’s how my thought process goes most days: Am I taking too much magnesium? Is it the chocolate? Testosterone? Is it my stomach or my heart? They said my heart was okay. Why did I get shoulder pains yesterday and some chest discomfort? What caused the bloating? Why am I getting shortness of breath lately? I’m back on Cayston. Is it not working? My peak flow is good. Pulseox down 1 percent. Is it a panic attack? I don’t feel anxious. How can I describe this to the doctor? Is it time to go to the gun store? Could I be eating something that affects my heart?

And it goes on and on like that for days, weeks, months.

Yes, I am insane.

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