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.
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.