Yesterday’s Clinic Visit

I am so lucky.

Lucky, lucky, lucky. I’m not sure how I’ve lived this long. Better people haven’t.

My clinic appointment went pretty well. It’s funny now my blood pressure goes up during the visit, especially if they take it before I do my PFTs, which make me nervous as I can’t tell which way they’re going to go. They end in happiness or dejection. No in-between for me.

When I was in the hospital for my two embolizations and 20 straight days of partying, my PFTs when down to level unseen since another doctor ruled the clinic years ago. In the span of my hospital stay, I lost over 20% of my lung function. The good news is – and why I am lucky – most of my lung function returned. I worked my ass off trying to get it back over the past weeks, even succumbing to twice a day pulmozyme, a drug has may cause me to bleed and one which my doctor and I discussed for 10 minutes. (Does twice a day make a difference? He says it’s only a 1 to 2% gain twice a day and wants me to take it once a day.) But I was desperate to use any tool in the tool box to get my numbers up. I’ve been doing my treatments three times a day, as always, with more vest time.  Flutter, of course. And I used the big gun of Cayston the minute I got out of the hospital.

Lucky me.

I also had a great visit because the doctor is top notch – outstanding from a medical standpoint – and human, caring and understanding.  It wasn’t a busy day and he listened to me vent about the last hospital stay and we came up with ways that future stays for all CFers can be improved – measured cups for hemoptysis volumes to reduce guessing; faster decisions to embolize. I’ve never met a doctor with a better understanding of what it’s like to stay in the hospital. He’s awesome. Bromance in the air? Kidding.

I’ve avoided a oral glucose test for the past three years. I’ve never had the time to go to the lab for two hours, or I haven’t wanted to take the time to do it. They’ve written me a dozen Rx’s for the test and it’s kind of a joke when I ask them for a new one each time. Tired of that game, they made me do the test at clinic and skip my morning McGriddle, which made me McMad. Not sure how I did, but I know I’ll find out soon. Scary waiting for results for that test, which is why I’ve avoided it.

I hate questionnaires – especially CF-related questionnaires. I’m at the point in my life that if I don’t like a question, I don’t answer it. When they asked me about sexual intercourse and my family history, I said “next, please.” Let’s concentrate on the questions that have some chance of making me well, people. I don’t give a sh** about zoo experiment statistics that you discuss over lunch and have no bearing on my health. Some of what I go through is none of your business. And the less I talk about certain members of my family, the happier I am.

The social worker visit? Hi. Nothing to say. Bye. Don’t take it personally. (They are my dark thoughts. I don’t need to share them with the world. Does a blog count?)

Here’s a mini-story about irony. The clinic visit, which was my “annual” visit even though feel like I live there, went fast. Usually they go slow and I’m there three hours. I could have been out  in 90 minutes if not for the glucose test. ARGH. And I promised to complete a six-minute walking test for a study they were doing, which also included a questionnaire. And I completed that questionnaire while the nurse was asking me questions from another questionnaire. Two birds, baby. I’m the zen master of multitasking questions. Ask away. I won’t answer, but you can ask.

I completed the six-minute walking test, back and forth in the waiting area. 9 complete laps and some extra feet for good measure. A month ago in the hospital my results were not good and I “desatted.” Not this time because I am full of luck to the point it’s falling out of my pants. And I’ll feel that way until the next time I cough up blood on a Saturday afternoon or have to be admitted. But until then, it’s all gravy, baby. Gravy.

And now for today’s grift

 

"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.

The Cost of Battle

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

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

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.

Firing doctors

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.

Fox designs a line of hospital shirts

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.

What I am thinking at this very moment

Do you feel lucky, punk?

[adult language]

I just want cystic fibrosis gone, exorcised from my body like an evil spirit, where it would hang in the air and I’d shoot it with the most powerful handgun in the world, the .44 magnum. So says Dirty Harry. And I believe him.

I don’t want to keep looking up medical information when I’m sick, thinking I have a medical degree and can diagnose myself on a web site. Don’t all diseases share most of the same symptoms? How many symptoms can there be?

I have everything – every disease known to man and womankind. The only question is which one is bothering me today. Fuck symptom finder. I have them all damn it.

Why can’t I take a probe like the one you stick in a turkey on Thanksgiving and jab it in my thigh and find out what’s wrong with me? And why do I know that if I gave the probe’s readout or report to two doctors, I would get two completely different diagnoses and they might both be wrong. Where’s the third doctor when you need him? On a golf course somewhere, no doubt, or on his yacht or private jet or on the moon, drinking lunar mohitos. Fuck them all. Scratch that. Fuck the ones who suck. Praise and worship the rest. They’re good people.

That’s what I’m thinking at this very moment.

Visit to my GI doctor

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

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.