It’s no secret that patients with breathing difficulties tend to have limited energy and mobility. My story is no different. When I discovered I needed infusions because I had a rare condition called alpha-1 antitrypsin deficiency (AATD), I was allowed to have mine at home.
I appreciated this option. There are many benefits to it and while everyone is different, I think there are several reasons having augmentation therapy at home for alpha-1 patients is advantageous.
The main reason I like this option is the small amount of energy expended. The issue of energy is relevant. When an alpha-1 patient attempts to engage in basic activities, such as grocery shopping or visiting the doctor’s office, and finds such activities difficult, preserving energy becomes a priority. Basic routines in an alpha-1’s life are far from routine or as easy as they are for healthy persons. When someone is sick enough to need infusions, every activity is taxing.
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Some call this the “Spoon Theory.” It’s a metaphor created by Christine Miserandino in her article, “The Spoon Theory.“
In this theory, Miserandion pictures the energy level of some people with chronic illness as a certain number of spoons. Say I have 5 spoons, and I get up, take a shower (1 spoon), drive to work (1 spoon), and use the remaining 3 spoons to finish the workday.
Since I have no spoons left when I get home, I warm up some leftovers for dinner and hit the couch because I have no energy for anything else. This is the spoon theory in action.
However, if I force myself to do something extra, say cook a meal for the next day, I cannot use the same amount of spoons for tomorrow that I used today. That may cost me 2 spoons as I start my next day.
So tomorrow comes and I only have 3 spoons, right? I get ready for work and then I hit a wall and have to leave work halfway through my shift because I know I will not be able to stay at work much longer before I have some kind of episode. Keep in mind I have to drive home, too (1 spoon).
There is some good in providing plenty of medicine and staff available for any adverse reactions. The company that produces the alpha-1 proteinase inhibitor that I use states allergic and serious reactions are very rare. I myself had almost no reaction at all, except for a mild headache and some IV-related pain. For me, this is a minimal response and doesn’t compare to the advantages of home-based care.
Anxiety, I must add, takes a considerable amount of energy to maintain. This anxiety is lessened by the comfort of one’s own home that a hospital or doctor’s office could not provide. This is a big reason I have appreciated my experience in my own home.
Besides the energy expended by going to a doctor’s office for 2-3 hours, home infusions are also very helpful in that they eliminate the need for extra drivers.
Before the infusions, I take Benadryl and 2 Tylenol pills to reduce the side effects of any allergic reactions. I need time for the Benadryl to wear off before driving because it makes me sleepy. I find that even waiting 4 hours after the initial dose of Benadryl is too short a time to risk driving in my semi-dazed state.
I joke with my nurse about how tired I feel after the Benadryl. I smile as I write this because she must find my behavior quite odd at times due to the “pre-meds” I take, as she calls them.
I have a great nurse who is very kind and knowledgeable. Her professionalism and skill in managing my infusions are top-notch. Watching her do what she does reminds me of watching an engineer piece together something very complicated that only he can see.
My goal is to self-infuse one day. While that seems daunting by the amount of work it takes and how tired the Benadryl makes me, I am sure that together, my team and I can figure it out.
So far, I responded very well to the first round of treatments. This has given me a great deal of relief that there is light at the end of the tunnel. And I am very excited about the possibilities of what the future holds and what life I have yet to live.
