I never really thought I would need my own IV pole at 34 years old. I also never thought I would want a Portacath. I knew some alpha-1 antitrypsin deficiency (AATD) patients do have them and now I understand why.

There are a small but significant number of young people who have this diagnosis that also require augmentation therapy, a weekly intravenous infusion. This infusion, from what I’ve learned, is a blend of saline and alpha-1 antitrypsin (or A1A), the protein that protects my lungs from infection. I would rather have one place that can be easily accessed by whoever does the infusion than being stuck in the arm more than once a week.

I have naturally low blood pressure, which can be both a blessing and a curse. I do not have the same risks as someone with high blood pressure. But let me say this, when it comes to finding a vein with a needle, low blood pressure is definitely a curse.

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As a 34-year-old female, I am a hard stick. I hear that almost every time a needle is inserted into my arm or hand. It gets quite old, knowing that when I stretch out my arm to be stuck, there is an awfully strong chance a vein will blow and the nurse will sigh deeply and eventually grab that needle again.

Naturally, I don’t like getting stuck. I don’t mind a finger-stick, but the thought of someone digging around in my arm with a sharp object isn’t really my “happy place.” Did I mention augmentation therapy is meant to be ongoing, not stopping for anything but death?

Read more about AATD therapies.

I know about the risks of infection, blood clots, and even the amount of pain that might go into getting a portacath placed. I have thought about this and I really prefer to know I am going to get an infusion instead of having to risk not having this vital protection for one week.

I have learned that if my nurse doesn’t get the infusion done within three pokes, she can’t do it at all. I have also learned I can’t live the life I have if I don’t have infusions weekly. Do I want to have a daunting amount of fatigue and congestion and know that I am asking for further damage to my lungs?

My answer is, of course, a firm “no.” When thinking about how this affects me physiologically, can I really ignore the psychological aspect of this? There are so many issues around getting an IV placed, I have nearly fainted several times… so, again, my answer is “no.”

I have actually realized I need to be on anxiety medication to help me cope with it all. I also divert my eyes from the IV going in before an infusion. Still, I know I need to get a portacath. Regardless of how stressed or relaxed I am, it takes a lot to lead that needle to the right vein.

 I don’t have a port, but in talking to other young alpha-1 patients, I have decided to take action. I learned of those that have them, they really like their “ports,” and most didn’t have problems. So for now, I am doing all I can, such as getting a peripherally inserted central catheter (PICC) line inserted so that infusions may continue until something more permanent can be used.

On the flip side, I have learned a lot about the physical effects of stress. I am different than other people so naturally, I will have a different reaction to different situations. I feel like I am in a good place, I just need some extra help to make this treatment work.

I have medication now that helps me be calmer and less worried. It helps that I am excited about the infusion, too. I think part of it is realizing my responsibility in it all and part of it is realizing how much is outside of my control, too.

The nurse has a responsibility to oversee the entire process, and the more I do to help her do her job with less of my own stress getting in the way, the better. I want to be able to give back and not be constantly thinking about how to deal with this situation.

I am so glad I can find a positive attitude and a little help along the way. I look forward to this dream, like many others besides me in similar positions. It is no longer only a dream, but a necessity that is becoming a reality.