The Villain Identified

My stomach went south this morning. I felt better yesterday, bad today.

I spoke to my most excellent CF doctor in the morning and he said in a cool way like he was picking a race horse to bet on: I’m leaning toward C-diff now. But I had an appointment with a stomach doctor later, so he wanted to know what that doctor said before placing his final bet.

My regular stomach doctor is on a beach somewhere sipping sweet tea with rum while reading Good Guts Gone Bad Quarterly. So, I got the 123-year-old doctor I can’t stand who should have retired back when Apollo 11 landed on the moon. He placed his hands lightly on my stomach and told me to let him know if it hurt. When I say “lightly,” I mean like he was running his hand over the hood of his Mercedes as not to scratch it, all gentle and kind and loving. I could have had the stomach ache from hell and his light touch wouldn’t have triggered anything.

So, he and I talked. I told my story and how my doc and I were betting on C-Diff. Dr. Gentle Hands told me we were wrong and it was a virus irritating my gut. He handed me a list of foods I should eat and some I should avoid. And an Rx for an anti-spasmodic, which I can’t take because it can dry out secretions.

But what about the fever? I asked. It came back today.

You usually don’t get a fever with C-Diff, he replied.

Hmm, that’s strange, I thought, because the last few times I’ve had C-Diff I got the bonus prize of a fever. Must have been a miracle of science. I’m special and honored to have received such a rare prize.

I didn’t say anything to the animatronic doctor. I know fevers and C-Diff often come as a package, which my CF doc confirmed on the phone later. But at that moment with the stomach doc I knew that I had wasted my time. Why kill any more by arguing.

When I got home, my CF doc and I decided to see how I felt Saturday morning, but I filled the Rx for the Vanco just in case. And it’s a good thing I did because tonight a fever and some nasty stomach gurgling arrived, as did watery you know what.

Hello, C-Diff, it was you all along, you crafty bastard.

Digging holes

Strange that the bottles on the web site don't match the ones I bought.

The morning started out rough with me feeling like the Human Torch. Tylenol acted as the bucket of water. I resisted filling the Vanco Rx, which was the right decision, so far. I’m feeling better tonight. I spoke to my stomach doctor on the phone today and he allowed me to move up to Ensure, telling me that four of these a day would provide me with the protein and nutrients I needed. (But not much eating satisfaction.) Unfortunately, they don’t come in an M&M’s flavor. So, I had to violate the liquid diet this afternoon and eat a handful, or two, or three of real M&M’s. Though I did chew them up until they became liquid-like.

*               *                 *

My gardener came by in the afternoon. I hired someone else to do some water-saving landscaping. He did a crappy job and I got hosed for over $1,100. I didn’t really complain to my gardener about it. I just mentioned it in a matter-of-fact kind of way. I may have to go to small claims court for the first time in my life and my gardener may get the job after all.

So, there I was mentioning the botched job the other guy did when my gardener told me that he had purchased over 100 acres of land way north of here where he and his family would one day create a farm with corn and cows. And he’d retire there. Watch his kids work the land. Milk the cows. Eat the corn.

That’s really cool, I thought. Really cool.

He needed water on the land to do all of this. Of course. Corn needs it to grow. Cows drink it to survive. Makes sense. So he hired a guy to drill a well, which was going to cost him around 50K. He gave him 10K to start, then inspected the progress which was going fine. He gave the driller another 24K. The work stopped and the lawyers came out and the driller declared bankruptcy. My gardener got a half-dug hole and lost his life savings.

I knew he worked hard for that money, in the dirt. It didn’t come easy.

He wanted me to know because, I think, he, like many of us, wanted to share a painful story. And because he wanted to give me some perspective on what losing real money is like. I didn’t lose my life savings. He did. I wasn’t complaining, but my story triggered his.

When he told me it was going to cost him 25K to fill the hole, well, what can you say at that point. Of course I said something stupid like, can’t you just fill it in with dirt? Wrong, you can’t. According to the government, a 50K hole has a proper way it has to be filled. That put an end to my talking about my $1,100 hit to the wallet.

The situation reminded me of the times over the years when I’ve listened to someone talk about their health issues – they had the flu and had to stay in bed for three days, or they had knee surgery and stayed overnight in the hospital. Of course I’m thinking if you only knew how many days I’ve racked up in the hospital, my friend, if you only knew. But I keep my mouth shut in those situations. And I wish I had today.

Chicken Broth, Gatorade and Jello

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

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

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.

Random Thoughts About Fear and Anger

Many years ago, I was driving in West L.A. on the 10 freeway heading west to Santa Monica. A driver in an SUV cut me off and it was all I could do to hit the brakes and move over slightly to avoid an accident. I laid on my horn and the driver who had caused the near miss, now directly in front of me, flipped me the bird.

There was something so unfair about the action of the other driver that it pushed my level of anger over the edge in a heartbeat. Bang, from happy to angry in less than a second. I flipped the bird back and followed the driver over the course of the next few miles, matching every lane change, until the person in the SUV didn’t respond and took an exit. I decided not to pursue it because it would’ve escalated in a bad way.

What would I hope to prove if I had a confrontation with the other driver? Did I have to prove I was right? How do you prove that to a person who blames you for their actions? The same person who was the catalyst for the situation and your reaction. How did we see the situation so differently?

In hindsight, I should have given the SUV a pass – just hits the brakes without adding the horn. Now when I get cut off, I hold back and don’t respond. I guess that’s a sign of maturity. But it feels like fear and does nothing to make the anger go away. The anger stays forever.


Breaking up is hard to do

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.