It’s interesting when I think how far I have come and I believe I have a long stretch to go –

There are four I’s in that sentence. Sometimes you need to be I-focused when you are pulling that energy from way down deep.

I have been trying to figure out what exactly I want to share from MN and what I don’t. Some of it may be boring to read and some of it may not be. I do not know, but none of it is to me.

Mainly I haven’t shared because I am not doing exactly what my doc said or suggested in MN – as of yet.

First we did not repeat the PFTs. She didn’t think it was necessary. She was concerned with the 5%; however, she believed it may be more attributed to the time of day I did them, the issue I had with my inhaled antibiotic last month, and I may not be getting my medicine delivered to me optimally. She said, “It is 200cc of air, but anyone can fluctuate 200cc.” Really? That seems a lot.

She prescribed me an antibiotic which I took over 20-years ago and had a side-effect from that made me discontinue it. It may not to do that today, but it may. She also said sometimes patients have trouble sleeping with it so take it in the morning. That patients can be hypoglycemic, and she kept warning me about if I have any muscle or tendon pain to stop right away. Some patients have torn their Achilles.

When she said the bit about trouble sleeping, I distinctly remember I could not sleep and was wide awake still at 3am. This was besides the other issues I was having. The whole tendon thing is bothersome as well. My gut is strongly telling me not to take it, and that is why I am not as of yet. I look at the bottle and I go, “Eek.”

Why would she try to prescribe me this medication – because this bug is harmful. To be honest, unless I try this med and it goes well, I don’t have other oral options to treat it. I have inhaled and IV.

It hasn’t appeared in over 2-years because of the consistent inhaled antibiotics I have been doing. But I think I encountered a bump and a recurrence of the bug when last month I had hemoptysis from taking this new generic brand that my insurance company sent me because they felt like it.

My lungs were very sore, extremely tight, and I coughed a lot. My lungs could had been resisting the drug out-right. It is possible my doc said. I may not had been getting any medication in my lungs let alone just the extreme reaction was obviously non-therapeutic. I only tried the drug for 10-days, 10-days long enough. So that is that.

Then, my other drug, the other month to treat the bug, I don’t think the machine has been delivering me all my med because there has been liquid left in the neb cup. You turn it back on to finished it, but it turns off again all by itself. It is a bit high-tech so it has its own mind. The med is extremely potent, so you don’t repeat a dose.

So – my plan is to not take the oral antibiotic, continue with inhaled meds that work. I ordered a replacement part for the machine that seemed not to work.

I have been doing the treadmill daily and have added a couple other small things, that may not be small in time.

What I love about the MN CF clinic:
1. They make me laugh and I feel I am truly supported.
2. They answer every question I have.
3. They do not miss a beat!
4. Four people came and saw me. I missed the nutritionist because we went over the time frame.

Ann, my and THE respiratory tech. She’s a rock star.

Ann asked what I did for my treatments, vest, exercise, nebulizer equipment, air compressor (how old and what brand), medication order, how much and how long. I told her what I did, and afterwards she looked right at me and said – “Now tell me what you really do.”

You don’t mess with Ann.

I did not lie to Ann. I knew better. But, what we did then was break it down to the cc, time frame for each medication in the morning and night, and how to clean my neb cups faster and better than what they knew last year or two years ago. All this matters because if you do your therapies well it reduces the likelihood for bacteria to grow. Plus she ordered me a new compressor that she said I will love.

I saw my PT guy, Justin, and gave me more tips and techniques on strength and endurance. I am supposed to do 150-minutes of cardio a week which is doable for sure. He then emphasized working on shoulders, arms, and back for strength. We talked for 45 minutes. It was awesome.

The social worker came by and we had a lovely chat. She said this CF Center is trying to incorporate whole health living by adding a palliative care specialist to help minimize chronic symptoms. Do you believe that?! This may include acupuncture, massage, and other such things which I don’t know as of yet.

I asked everyone how the North America CF Conference went and everyone brought back interesting tid-bits that were quite interesting, especially Justin.

I spent close to two and half hours with everyone. This entire time was enlightening and we laughed quite a bit.

My doc would like a new culture in a month, she didn’t mention a PFT but I will do one for here. I have get chest x-ray and dexa. That’s fine. I am to let her know if anything changes and of course she prescribed the antibiotic I am not taking currently which I will tell her. She really wants the bug gone.

I feel really good and I feel really strong. My endurance is strong and high. I am happy to do the treadmill and have increased the strength exercises. My cough seems a bit better. My inhaled antibiotic is working well this month.

I am not going to say anything more at this point, except strong thoughts and strong handshakes.