There are many benefits of home infusions for alpha-1 antitrypsin deficiency (AATD) patients as well as their healthcare team. During the first few months I had them, I wrote that I liked them, but my reasons have changed. Now, I see them in a different light, as a matter of convenience.
I have 2 jobs I enjoy, a full-time one and a part-time one. This is difficult for anyone with a chronic illness. Basically, if I didn’t have flexible scheduling with the infusions (at the end of the week), things would be even harder.
Most people with AATD who are approved for this therapy have lots of damage in their lungs. Many didn’t know that their lung disease was influenced by a genetic issue for a long time. I got a diagnosis earlier than many, so I had more time to slow the disease progression.
Because we caught this early on, I had more of a chance to try a full-time job. At the time, I felt like I could try it. It’s not easy, but I can earn enough to pay bills due to the flexibility of my nurse.
Read about experimental therapies for AATD
Right now, my nurse lives close by, so it’s easier to change the schedule if needed. At first, I wondered if the nurse could work with me. Now I know my nurse can find workable times for both of us.
I also like the way the nurse teaches me about the whole thing. Because I want to self-infuse someday, I’m learning the terms for different tools in the process. So, it’s easier to imagine self-infusing, which Rare Disease Advisor medical writer Ryner Lai, MBBS, reported in a recent article.
I look forward to one day overseeing the process. I will know what to order and when to order, too. Surely, that will be a fun and important day.
I have come to know that side effects are few for me. I wouldn’t even call anything I have had a real “reaction” to the therapy at all. What a good thing to not have. Most of the time, side effects are few and far between. I stay well-hydrated and take medicine before each infusion. Also, I know what to expect during an infusion and how to stop the process if I need to.
Because I know that, I won’t worry that my nurse will be unavailable for me one day, out of the blue. I do like having someone around for now, since I am still learning “the ropes.” But if I could do it on my own, my life might be a little less hectic.
There are a lot of reasons home infusions are nice. For instance, I think driving home after taking an antihistamine is quite unsafe. It’s just how my body responds to the drug that creates that problem. I have often considered asking my doctor to remove antihistamines from the list of medicines I need. That would be up to him. I believe he prescribed it knowing I could develop an allergic reaction.
One big reason it would be unsafe is the effect it has on me. I normally act drunk after taking it. I lose some self-control, so I hope my body builds up a tolerance to it soon.
This is a reason I would rather be at home than go to a clinic for the infusion. Finding someone to drive me home every week would be hard, to say the least. If the person didn’t show up, it would mean getting an Uber or spending more time waiting for someone to pick me up.
I have also recently realized financial gain in having home infusions. The cost of the infusion center is not something Medicaid would likely cover in my state. I haven’t tried that option, so I don’t know all the ins and outs yet.
However, I do know that I made a good choice in having this treatment. There are many who wish they would have started this sooner. I count myself blessed.
Of course, I would avoid some exposure to COVID at the same time, too. That is a concern for many with AATD each time they go to a hospital or a doctor’s office. They know they’re at risk. Everyone is, but those who have this diagnosis know it quite well. Sure, the infusions would help me get through COVID, but I wouldn’t want to risk all that each week for the rest of my life.
I believe it’s safer to do an infusion in my own home. It may help with the great need for nurses in the healthcare field, too. After all, only one would be needed, and for a short time. For many, no nurse may be needed. So, I think it’s a great investment to have home care. It makes the load easier on everyone involved.