This schedule is tight and a little tough. I am up late every night. I am ready to be done with IVs, but only if it is the right time.

I have an f/u appointment with Children’s again this week. They have been extremely thorough and kind. I emailed my doc in MN to give her update and for guidance and any recommendation at this point. That took a little time because I had to download some documents, attach, and all that jazz.

I am thankful so much for MN’s care. The difference between MN and Boston is still interesting to me.

Oh – before I go forward, the meaning of interest, inter and est, literally means being between. It could be tension or no tension, but definitely, a relationship where we are being between things and yet we are also finding ways in means of connection of those things.

So, in MN – 4 treatments a day. “That is what we do here.” Boston, even at my appointment last week, “2-3 treatments.” Boston is a little worried about the toxicity of the medication in my neb, yet MN says “as long as 4-hours apart, you are fine.”

Since my air compressor does not push out 6L or 7L, it is more like 5L of oxygen, 3cc with albuterol works perfect in my time frame. It has less toxicity, which MN said that was fine, and then fill with a little saline flush at the end.

The key with treatments is frequency not length of time. Frequency is actually the key with most things.

The home IV division, Coram, which is owned and operated by CVS, have not missed a beat. I have been quite impressed. Since CVS is national, they coordinated my drugs and nursing care from MN to Boston.

I am still doing four treatments and now I have added my treadmill daily. I will not waiver on this.

I also doing the Airlife for life spirometer. That is me saying that, not them but the gizmo is called Airlife. I am sure you have seen this at some point in time if you look it up. It is a tried and true way to expand your lungs and somehow reduce infections.

I was handed one of these when I was like five years old and they keep reappearing in my life. I just do it after each treatment and my number on it has doubled since discharge.

I am doing well on the treadmill. I have integrated my treadmill into my treatments. I am doing my neb on the treadmill for the first half and then I move over to my vest. I am breathing seamlessly on the treadmill, but I check my oxygen just to make sure.

I have been told many times during the last few weeks that my body is used to compensating, but when I am healing I should not compensate.

I am eating like I have never eaten before. I am famished about every two-three hours. I am eating three large meals if not four. I think I may have gained two pounds. I am starting to see a change when I wear my jeans which is promising.

For clarity – in one month I had lost nine pounds; four out and five in the hospital. I was 50kg at the time of discharge. I do not like that number.

The thing that is a little tricky is because I am eating so much, I have to leave adequate room between my treatments. I cook as well because I have missed doing so and want good food.

So it seems my treatments get pushed off a little although I get them done but it is later than I would like. Obviously, the IVs take time, but somehow I am doing my treatment at eleven or so aT night and then I have to eat again.

A little bit more sleep would be heavenly.

But – I feel great. I am going to be a rock star soon. When I am off the IVs I will start with weights and resistance training again. I do not like to fiddle-faddle doing that when I have a line in my arm.

I am trying the very best that I can. I am working extremely hard. I am doing some fun things here and there too, but I will not interrupt my treatments and drugs.

School begins – so happy. My class is already interesting.

Will it be enough?

I do not know.

I will be good to go on in my life, but will my lungs heal the way I hope.

I said in my email to my MN doc that this is the juncture where Boston, Mass General Hospital specifically, had failed me in the past. I do not know your protocols, and that I must advocate for myself and any guidance and recommendation would be fabulous.

Children’s maybe right on par – I am not sure, but guidance would be willfully accepted.

To note: Why do I always talk about MN? It isn’t just because of where I was born.

University of Minnesota CF patients live 10 years longer statistically than any other institution in the United States and have for like two decades if not more. This last year I have been hearing more and more, “We are following MN protocols.”

I, so happen, grew up thirty miles away from there and more than likely because of their care over the years I am writing on this computer today. Yes – I (and my parents) put the work in but they gave us the tools and the knowledge.

Note: Malcolm Gladwell writes about place and time in Outliers.

Something from the literature I am reading that I found interesting.

We could say that history “happens” in the very repetition of gestures, which is what gives bodies their dispositions or tendencies. We might note that the labor of such repetition disappears through labor: if we work at something, then it seems “effortless.” This paradox – with effort it becomes effortless – is precisely what makes history disappear in the moment of its enactment. The repetition of work is what makes the signs of work disappear. – Sara Ahmed, “Orientations Matter”

Thank you, thank you. When I got on that plane to come home, I cannot tell you the relief I felt.

Work cited:
Sara Ahmed in “Orientations Matter”
Elizabeth Grosz in Rhetoric, Through Everyday Things