When someone is diagnosed with an immune deficiency, it can be very overwhelming. The worst part for me was hearing that I would have to do a new treatment for the rest of my life. It takes a while to learn how to self-administer plasma with a subcutaneous infusion, especially for someone like me who is not well-versed in anything medical. Learning that you have to stab yourself with needles, fill syringes, and set up a pump is really intimidating. There’s always this fear that something will go wrong.
Luckily, when someone learns how to do subcutaneous infusions, there is a nurse helping them along the way. I was so happy when I started to get the hang of it.
However, I will admit that once every two weeks, when it’s time to do my plasma treatment, I get anxious about the needles all over again. For so long I felt like I was being dramatic, and it gets to the point where I feel like I have to lie to myself and others about how I really feel. The truth is that this is scary, it sucks, and it can be very painful. I see those needles and I’m like… ugh, here we go again.
Nonetheless, I am here to share some things about my plasma treatments and to describe what it’s really like. Even though I don’t love it, it has gotten a lot better and I have figured out how to fit it into my life.
So, are plasma treatments painful? I would say yes, but not super painful. It’s definitely manageable and it’s different for everyone. Here are some reasons why I say this:
- Every time I do it, the sites get very red and irritable. I have to take an antihistamine every single time or it will just bother me. It kind of stings.
- While I do have to stab three needles into my stomach, they are actually very small. Not as thin as acupuncture needles, but still pretty small. So, it’s not horrible if inserted correctly.
- I absolutely hate taking them out. Something about it just freaks me out.
- I honestly hate needles and medical things in general. If this is you, you’re not alone. A lot of people are really queasy about this stuff.
- After the needles are in, you do get to just relax. I take it as an excuse to give myself a break from real life, especially a break from thinking of anything that may stress me out.
- You have to be in a really comfortable place (always my room) and be near someone who can help you if something goes wrong. I always have my boyfriend there. He helps me get set up and sits near me the whole time in case I need anything. He’s so sweet!
- I have an epi-pen if needed, but I’ve never had to use it.
The main things I suggest to remedy the hard parts are: antihistamines, drinking a lot of water, being comfortable and relaxed, putting away any negative distractions, having someone help you, and having a contact for if you need help from your provider!
Overall, plasma treatments are not fun but they’re not horrible. A lot of times I just have to block out the negative thoughts because they can really run wild. I just have to keep in mind that this is necessary for me to keep living my life and moving forward. I know that I may feel a bit of pain, discomfort, and uneasiness, but I know the next day is a new day. I know that I will get up, get ready, and show up to work. I know life will go on.
Never let yourself feel like you can’t be upset or angry about this! It’s not a choice. And it never goes away. People with PI are on a journey to make things work and feel better!