If you ask an alpha-1 antitrypsin deficiency (AATD) patient about recovering from an infusion, there’s no telling what their response will be. But my experience with having augmentation therapy at home for AATD has been, overall, pretty good.

A couple of times I have wondered how much I should rest postinfusion because I was a bit tired the next day. My nurse at the time told me to avoid anything emotionally stressful the following morning. I did that for the first 6 months of therapy.

I don’t regret it because it seemed like my body needed time to get used to having infusions. But now I can go to work the next day (my work is not physically demanding) and do just fine.

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However, I know several AATD patients who have multiple health issues besides lung and/or liver issues who have to nap the next day for a while. I think it’s definitely important to rest if it’s needed.

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I also have multiple health issues, but they are not overwhelming at this point. These other things do not affect me as much as they do others, and my body is currently enjoying a reprieve of symptoms from them.

I’ve figured out a routine that’s helpful to stick with. I find routines help my body stay on the right track physically and mentally. Maybe it’s just my personality, but it feels safer that way.

Here’s my routine: First, I make sure to have augmentation therapy at the end of the day, so I know I’m done with everything else and have plenty of time to rest afterward. I tried infusing in the morning and my blood pressure wasn’t good enough for the nurse to find a vein.

Another reason for scheduling infusions at the end of the day is because I take an antihistamine beforehand. My doctor prescribed banophen in case of an allergic reaction, just as a precaution. It makes me act a little drunk after a while. Since my driving has been proven to be adversely affected by that medicine, I have to remember to not schedule any driving after the infusion. I get back to driving after I have slept it off so that I don’t cause an accident.

I have never regretted that decision. I have taken it every day for long stretches and have never gotten used to its effects. But my body is relatively small, builds up medicine quickly, and can be very sensitive, so that also plays into it. I usually conk out on the couch for an hour after an infusion. If I am feeling energetic, I might watch a movie before heading to bed.

I also try to drink as much water as possible before going to bed. Because I get dehydrated easily, I drink a lot of water before and after the infusion. The infusing medication tends to absorb liquid once in the veins.

The banophen can also cause dehydration. So it makes sense that the next day I am usually thirstier than I typically am. I try not to work the day after therapy but in the event I have to, I don’t encounter many issues unless I am actually sick. I just try to make sure I am taking care of myself and take a break if I need to.

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This is not everyone’s story; some do a lot more than I do physically because that’s their life. On the other hand, some have to take the next day to recover, too. It’s highly individualized. I think it’s safe to be careful beginning the therapy, though.

I really don’t have any side effects from the infusion itself, although one time, when the medication went in too fast, I did get a headache. Thankfully, the headache was short-lived and I take Tylenol right before the infusion, as well. I’m happy that I am generally pain-free after an infusion because I know how awful headaches can be. Lately, my nurse tells me there is no reason to stay in bed the day after an infusion, so I let my body ease into waking up the next morning.