I come across so many wonderful stories that I am compelled to write all about them, all of them, but I can’t. It is just too much.
What I can do is update my reading list on this blog; I think it would be an efficient way of doing so. It will be an evolutionary process of course, by adding things as I go. Again, there are so many wonderful stories, it is just hard to talk about all of them without having my mind go haywire.
Under the menu you can click on “Recommended readings” – I may be able to do a subtree of books vs. articles vs. topics. I am not sure. I may mention “check out this article” under the link at the end of the blog.
Also – if you could so kindly, which I don’t mention enough, follow me if you can. I appreciate your readership and community.
First I want to pause and say how grateful I am for my health, my job, the ability for me to receive care, and my medications. I am grateful for my home, my family and friends, my animals, and again my health. I say these things in my mind often, and I feel writing them gives weight.
So given that – and again I am always thankful for my medications; however, I really would love if I can cut back on them in the future.
It’s not just the medications and time – more specifically the nebulizer antibiotics. The air compressors and neb cups get at me. And sometimes my vest just sometimes stops working, and then it works again.
So first, air compressors – they may seem very trivial in the world, but it is just a tiny tick that gets at me. And it may not be the most riveting, but details are important.
First I have at least six air compressors. I buy them when they are on sale. I have two at home tabletop ones that weight around 3-4 pounds, maybe it is more. Under the specs it isn’t listed. I have two because I need back-up when one fails, as one recently did.
I have at least four travel ones. I might have five. I get the warranty, write the date I purchase them.
When I travel I always bring two travel ones with me (1 pound each), because when I am on the monthly rotation with Tobi (one of my inhaled antibiotics, taking 20-25 minutes) and then the routine neb takes 20-30 minutes, the smaller travel compressors recommended operational time is only 30 minutes.
At that 30 minute mark, they become quite hot to the touch. So, I switch to the other one to continue my nebs. Traveling with two is a good idea.
They also all have filters, and tubing and when in operation you have to replace them every 6 months. Another date to mark.
My neb cups: to adhere to infection control guidelines, I am supposed to use one daily. I can use it multiple times, without rinsing in between, but recommended to start a new cup the next day. I have at least a dozen in the rotation because I am not boiling them daily.
There are four different types that look exactly the same:
1. LC Sprint – fast, recommended for non-Cf patients.
2. LC Plus – longer, has a considerable lag time if you ask me, recommended for CF patients.
3. LC Sprint Vios PRO – again fast, recommended for non-CF patients, and are designed for my larger tabletop compressor.
4. LC Plus Vios PRO – longer admin duration recommended for CF patients and designed for my larger tabletop compressor.
I can use the first two options for travel, and the bottom two for my either travel or the tabletop version, or so I think.
The Vios PRO has to be used for the Vios PRO machine, PRO matches PRO. Because I can’t keep track of everything and the fact they look exactly the same – I just buy the Vios PRO and use it for both.
The medicine comes out of the travel one with the Vios PRO. I don’t know if that is what I am supposed to do, that is what I am doing.
To note: the Vios PRO is a newer machine, just in the last 1-2 years. I had to buy new neb cups for this machine alone, so I was told.
Second, I am supposed to use the LC Plus version because the medicine needs to get down to the bottom in my lungs and so the longer duration is better. The emphasis is by the rep on the phone who emphasized the need and importance of the LC plus.
It is so long I sometimes say and think, I can’t do this anymore.
I use the sprint now. I bypassed the rep with whom I spoke to on the phone and I use the sprint. The sprint is at least a third faster. I only have so many minutes of my life on this earth and staring at a neb cup really gets to you.
Let me tell you something, just to be clear, when I open a brand new nebulizer and use the exact same amount of medication: 4ccs of my mucomyst (N-acetylcysteine) and 1cc of albuterol and the time duration can vary between 15-25 minutes. And 4cc of Tobi can also vary between 15-25 minutes depending on the neb.
So – I have to leave more room, more time in the morning never truly knowing how much time it will take. I know they get used and no matter how many times you boil them, they get old; max duration of use is 6 months.
I set aside “my favorite” ones – knowing they take a reasonable amount of time, knowing I will not feel compelled to stare at them, take the lid off, and ask “How much more time? What the heck!”
I am compliant, but I am not compliant because I use the Sprint. I am not changing it. Anne my respiratory therapist, I can hear her. I’m not changing it.
Also – the little 3-minute med, the antibiotic Cayston, that I alternate with Tobi every other month, (January – Tobi, February – Cayston, March – Tobi).
I am compliant again, but I am not compliant. Cayston only takes 3-minutes to administer, 3-times a day, 4-hours apart. They say, if you don’t do the third dose, don’t even do it.
In the pre-COVID world, I used to bring the little machine to work at times to be compliant with the 4-hours apart rule. At this time, I am not bringing it to work with the possibility of COVID germs.
When I get home I do the second dose, and often times, I do not make it to the 4-hour mark. I do it again, being compliant, but only about 3 hours apart. That is the best I can do. I am tired; I need to go to bed.
And that machine is altogether a different system. Different machine, and neb cups. So, I have more neb cups. More things to clean, soak, and sterilize. I have to soak certain parts in soap with distilled water and the other parts sterilize either in the dishwasher or boil them.
There are just so many neb cups – two choices:
1. To have fewer neb cups in rotation, but boil more.
2. Have more neb cups in rotation as they sit in a clean large bowl, with the proper marking of dates, and less boil time.
The germs, the germs, the germs!
Growing up, I laugh, we had two air compressors, using one at a time, and had two neb cups and we would rinse them out with tap water, and let it dry behind or next to the kitchen faucet.
Tap water is a huge no-no. Anne says it is best to not rinse it at all then to rinse it with tap water. That could be a reason I have one of my bugs today – that never truly ever goes away. Who knows?
That’s the thing, you don’t want to get another bug that never truly goes away. Even after the last course of IV antibiotics this last fall, one of the bugs was still present, like during my course of IVs.
Unbelievable. Persistent little fuckers.
What is my point in all this – stay healthy. Stay the course as long and as much as you possibly can.
The entanglement of details is a labyrinth that takes a phenomenal amount of mental energy and reconfiguration to streamline time and efficiency.
Do the best that you can – always.
I am compliant,
but I am not compliant.
I am as compliant as much as I can be.
Much love on this warm summer day. Let’s enjoy – Please take of you and the ones you love.
Here is an interesting article – I am drawn to it because I think we just don’t take notice enough:
https://www.thesunmagazine.org/issues/529/a-test-of-our-compassion