Breathing is hard work.

Believing is harder work.

I say that because breathing takes place from your autonomic system, believing does not.

I am currently hopped up on some inhalers. I will explain later.

I have been a bit frustrated. I have been conducting an experiment and it appears I cannot come up with a suitable argument to cut back on my inhaled antibiotics.

I really wanted to cut back on the one antibiotic Cayston, the one I have to do 3 times a day for 28 days on and 28 days off, rotating with Tobi where I just do twice a day. I think Tobi is a better drug, has been around a lot longer than Cayston, so I cannot ruminate or daydream about giving up that drug.

Cayston is also the one where I had copay assistance program debacle, so there is that. A thorn. And I am also not convinced the Cayston machine is giving me all my medicine. There is always a little bit of liquid left in the neb. I turn it on and it shuts itself back off, so I guess it’s done? I pick it up and it drips down my hand and wrist. It could be condensation – who knows? And it leaves this sticky pink residue on the connector after it heats up and then solidifies. I scrub the pink residue with alcohol and it doesn’t come off so I have to scrub it with hot water and soap which I am not sure if that is good for it.

You may sense a particular undertone or just tone in my language. I want it to go away. Truly.

The three time a day thing feels like I always have something to do, and it I think it is because I always have something to do. It is always remembering, and always keeping track when I did it last; when am I going to do it next, while making sure it is four hours a part.

Two times a day, I can handle it. One in the morning with my regular treatment and one at night again. Space in between to breathe. When it is more than two, I feel as if I am being nagged throughout the day. Don’t forget, be a good patient. Have to do this right.

Pause –

This last time around after I completed Tobi, I waited. I waited for 2 weeks before I started Cayston, just to see how I felt. Now – this isn’t optimal and I am completely aware of this, but I was experimenting.

I felt good for the two weeks. I wasn’t feeling congested or anything. In the past, I would only wait one full day, a 24 hour cycle – giving myself that 24 hour break, and then start back up again. I didn’t want the antibiotic to be filtered completely through my liver, allowing the bugs to try to build up again. Must hammer them down.

This time because of my new drug I literally felt great for the two weeks. Perhaps my experiment may have real data to support me giving up the drug?

At the two-week mark, my guilt settled in and I pulled out my machine and set it up. The next couple days I felt like it was breaking up something in there. I was a tiny bit congested. I thought I had an ear infection as my ear hurt to the touch. That resolved when I started up Cayston again.

So what does all this mean?

Here it is – I have contracted four different kinds of bacterium in my lungs over my lifetime. Two have been with me since my youth, probably since I was three or four, and the other two over the last ten years.

Tobi and Cayston pretty much take care of one of the biggest culprit, we shall call bacterium A, or bacteria – because there are more than just one bacterium creating such havoc.

Bacteria A. is one of the main reasons for lung scarring, lung infections, and volume loss. Prior to Tobi (Tobi or Tobramycin) that came out in 1998, bacteria A. had no real treatment options. The run-of-the-mill antibiotics couldn’t touch it. This marks the moment in time where CF kids started to think about becoming CF adults. Minnesota’s adult CF clinic opened right around 2000-2001.

Cayston came out in 2010. If you interchange these two drugs, 28 days on and 28 days off – the idea is to literally stamp out bacteria A. In the last few years, I barely culture this culprit because of these two drugs. That is a miracle in itself.

Note: resistance to antibiotics only can happen in oral and IV form as oral and IV pass through the liver. Tobi and Cayston are inhaled antibiotics and do not pass through the liver; therefore, I and others do not build a resistance to them.

One may ask, why would I want to even play with that?

Because my new drug is unbelievable. I do not cough, or very rarely. I am not cruddy. My cells are working better than they probably ever have. The antibiotics are there to kill the ongoing infections. If I don’t have it, why take the antibiotics unnecessarily? Well, it seems it is still there on a microscopic level. So, I cannot come up with a good argument to not take it.

Bacterium B., the other bacteria that has been with me since I was three or four. It can usually stay at a fairly manageable count without consistent treatment, but sometimes it gets out of hand.

Once the bacteria heavy-hitters like bacteria A. and B. arrive in CF, it may go away for a little while, but it usually comes back. They say it is usually always there.

Bacteria C and D that have developed over the last 10 years, they come and go, pay me a visit time-to-time. No telling.

When things get out of hand with bacteria A. I switch from the inhaled antibiotic Tobi, to the IV concentration of Tobi which is then Tobramycin.

When bacteria B. gets out of hand, I have one oral antibiotic left in my arsenal that assists with it. My sensitivities have increased over the years, as one can imagine.

I want to note – there are many drugs in the pipeline and the idea is to always do your treatments and exercise to get the bugs out or keep them low. And – try not to take antibiotics as much as you can, but when needed one has to take them. That oral antibiotic, I treat it with great kindness and gratitude. Respect the drugs.

When bacteria B. gets really out of hand, and the oral antibiotic can’t do it, I am put on Vancomycin. And at that point, bacteria B. has created quite the fortress and can stubborn as hell, so Vanco treatments go on and on and on and on. This last time I was on Vanco for 2 full months and they said I have to stop. It’s a lot on the body.

Sometimes if bacteria C gets out of hand, they may treat with an oral too. Bacteria D should be wiped out with Vanco as well, so a two for one with Vanco. You never want to build a resistance to the Vanco – it’s the go-to for so many things. Bad bug bites to sepsis infections.

When I have an exacerbation – they treat me for bacteria A. and B. And then sometimes C. They like to hit it out of the park and wipe it out.

In normal times or just every day, ever since I was a kid I have been taking a daily low dose antibiotic. Every day – like forever. They can’t allow the little infections to bloom. I will say, I miss a dose time-to-time but pretty much every day.

When I was in my early 20s, the one antibiotic that I had been on forever, the country, the factory that manufactured experienced a horrific earthquake. So – it took a bit to figure out why I couldn’t get it, and it wasn’t sourced anywhere else.

We switched, obviously. At that time, the pipeline worked in my advantage. New antibiotics to treat certain groups of bacteria were approved just in that last couple years.

That’s why the short-lived ear infection had me a little concerned because I am already taking a daily antibiotic to knock out the little ones. So, back on the forever-more inhaled antibiotics plan.

You may ask – how does my body do it? No clue.

How does any CF person do it or folks with many chronic conditions – no clue.

The only answer I have is science, strength, and working your butt off.

You may ask – how does my gut able to stand it? No clue.

Although, I can’t take a higher daily dose of my daily antibiotic. I become quite nauseous. And in regards to my gut, when I get IVs, it wipes out and takes a bit to come back. Although, this last time around, I was prescribed a really affective and effective probiotic. Super helpful.

Is it good to take all these antibiotics?

No, not really. It concerns me, but I can’t really do anything about it.

The main idea as always – back to treatments, and back to exercise. You have to keep the whole system moving so nothing stays there for too long and causes damage.

The closer you pay attention to the details, the unbelievable factor of what the body is able to do amplifies.

I have no idea about anything really. I want to note, antibioitcs and all the particularities is not novel to me. Every CF patient has antibiotics deliemmas and so do many folks with wide-range of condtions.

I have said, maybe not quite as apparently on here, but I have which I believe I have someone watching over me all my life. I like to use the words guardian angels. I think they are around me always. I try and listen as closely as I can, when I can.  

The reason I was doing my inhalers because I have a home spirometry; a little PFT machine. Actually my doc wants to send me one of their home ones.

They received a grant and have the availability to possibly get me one. I had an appointment last week and they really want to get my latest PFT data point. It has been a full year without a new PFT data point. What a wonderful break!

I have this plan when I do a PFT I take this inhaler x amount of time before I do the PFT, and then another inhaler so many minutes again before the PFT – trying to keep a controlled study.

When I started, I cannot believe I did it 3 or 4 times and didn’t put the nose clip on! Oh-my-god. So, I put the nose clip on, and it jumped a good fifteen percentage points.

I think my lungs may be doing better. The number was higher than before, but until I get the real machine, with the poignant moment-in-time stamp on it, I am extremely hesitant to expand more. Have to wait.  

Even so, it is good to open up the lungs and feel your breath.

Fact: Not sure if you know this or not, but men are more bellies breathers, and women tend to breathe from their chest. We can breathe better from our bellies. I was trying this as I was walking today, and I can actually breathe better.

Other things on the radar: I need to be doing more of my Airlife for life breathing machine that sits on my desk. It stares at me. It doesn’t glare or anything. It isn’t menacing. It just sits there and says, Hi, how you doing? Wanted to pick me up?

I also should be hitting harder on the treadmill. I just should. Stop being so damn lazy. I am not technically lazy as I am doing other exercises as well – but really just pick it up. Just put your shoes on. Move the neb machine over and go! Or just go without the neb. I mean for fuck sake.

As in my vest machine; it reports that I have done 2051 sessions with an average time of 24 minutes in around 2 years or so. That’s a lot of work. That is real time.

In order to comprehend and mentally grasp and carry on through all what I written above, I have to slow down my breathing, and try my best.

The best that I can. Feel it in the middle of your gut and proceed.

Jesus – it’s literally all about breathing isn’t it?

And then the whole believing thing. 

Much love. Stay positive. Stay the course. We can do this – That’s all I got today.