I have listened to John Butler Trio’s “Ocean” thousands of times. I saw them in concert last year and by the end, tears.

One of the most endearing books I have ever read is Hey World, Here I Am! by Jean Little.

I found it in my local library and decided I could not let go of it. There are many hidden treasures inside. One such –

Today

Today I will not live up to my potential.
Today I will not relate well to my peer group.
Today I will not contribute in class.
I will not volunteer one thing.
Today I will not strive to do better.
Today I will not achieve or adjust or grow enriched
or get involved.
Today I will not put up my hand even if the teacher is wrong
and I can prove it.

Today I might eat the eraser off my pencil.
I’ll look at clouds.
I’ll be late.
I don’t think I’ll wash.

I need a rest.

This is one of my friend’s, Lisa, favorite passages. Her mom was moved to hospice today. Tears come to my eyes. Hugs.

A couple other friends of mine are being challenged in their own ways. Hugs.

The heart feels only what it knows, and it is hard to leave open for what is unknown.

Sigh.

I ordered the official “Duelin’ Banjos” sheet music. I received it yesterday and I was tuning my banjo last night using my tuning app and plung! One of my strings broke. Sad. But ah-ha, prepared for such event I have new strings on hand.

So, I just want to say – just as a statement. I write and I do this stuff, as it helps me make sense of things. I wish I never knew the words cystic fibrosis. The initials CF or the term CFers, or CF fighters, or the continuation of anything having to do with CF.

I live in this casing, on this earth, at this moment in time with CF. I came into this world abruptly and I am always striving to find ways to live my best within and trying to push myself to have my best life out – while (during the time that) striving to find the best between two worlds.

I sometimes stare off into the clouds of all the things I would do without CF. I can’t stay there for too long – instead, I just push. Keep moving forward. I keep drawing and redrawing further out of this casing; then draw and redraw again.

I am doing well overall – My strength is building and stamina. I did a work-out on my Total Gym. I am able to go faster on my treadmill, and I have added back in my incline. My oxygen is right on par. I may have gained a couple pounds.

Pause.

Do you know much about vitamins? Vitamin K – oh it’s a good one. CFers always have to take vitamins and have special formulated vitamins because they, we, don’t know how much our bodies actually absorb from food.

I take vitamin K separately and have always since a kid to help clot blood and helps with your bone metabolism.

This is tricky when I am on a blood thinner for a blood clot.

While in the hospital when I developed the blood clot, I was taking vitamin K – as normal.

While starting the blood thinner – I was kept on vitamin K but they lowered the amount, to try and get a baseline.

After the second night while on the blood thinner my lungs went into a bronchospasm post my fourth treatment. It was always my fourth one, none of the others. It reeled a bit from there and hemoptysis.

I just kept repeated calm. Please calm down. It did. It settled. Modifications were done – and have been Okay since.

So – I had to have this next part explained to me a couple times.

Heparin treats immediately. Warfarin takes a while to build up in your system (measured by your INR). So, the heparin is treating therapeutically while the warfarin is building – and you are safe. The heparin was “bridging” me onto warfarin – I think. Or the warfarin was the bridge, not sure.

After I got my heparin number after about a week, I switched to the lovonox injections. The lovonox treats like the heparin, but can be used on an outpatient basis.

Calm. 

Note: there was this doc I saw for part of my stay. He suggested either heparin/lovonox/warfarin route, or this other mysterious medication that the FDA approved. He never brought me the study, which he said he was going to do.

I don’t know how long this drug has been out. Apparently, the stats are slightly better than the heparin route. He made this point that I should be just fine and it would save many needle sticks.

The catch – you take this medication and you are not monitored with blood tests through the entire course. Then, after a certain period of time, you just stop it.

If “an event” happens and I need a medication to reverse the effects of the drug – just in case I am bleeding, there is not an approved fast-acting medication at this moment.

I had to make a decision fairly quickly and to get a second opinion was a little difficult. I texted a couple friends that know things and through this contemplation – I followed my gut and went with the tried and true heparin route.

When he came back an hour later – I just said “I don’t know how long this drug has been out, and all the stats. Heparin has been around for a long time. I do not want to die at 42 because of a new drug.”

“I think I am misrepresenting the medication. I understand. We will start you on heparin.”

I think he thought I was giving him a hard time. I just wanted the facts. The next day he said, “I am moving on to another service. You won’t have to deal with me anymore.” I thanked him for all his help. I didn’t know what else I was supposed to do.

Quick, quick end to this very long blog.

I have had some ups and downs with this INR. My INR was taking forever to build, so we stopped vitamin K altogether about two weeks ago.

It was in a good range and then it jumped on Monday to a really high number – not a good range.

They expected that as vitamin K finally left my body – it would have affect on me but not quite that much.

We knocked the warfarin down and now my INR that came back yesterday was too low.

Thus, I am back on the lovonox injections and warfarin until the warfarin builds. We bridge again and start over – after many sticks like the doc said.

I am good. Nothing to be concerned about. I have all the tools at hand. The coagulation people are in touch with me all the time.

And if you followed that – Congratulations!!

Today I may eat the eraser off my pencil. 

Much love.

 – Mike Ciccotello

Ciccotello.com