That B word…Birthday? Better? Blood?…It’s Blood. And P.S. Plasma, too

It’s my birthday this month. I’m turning 28.

I don’t really like my birthday. It’s like oh look time keeps passing and you’re still sick and your life still doesn’t look anything like you hoped it would and also you’re older so now it just stings more that you don’t have any of those things you want in life…but yay happy birthday.

One year older, still sick, and usually sicker than the year before.

But this year is a little different.

Don’t get me wrong, I’m still not stoked about the getting older thing. I’m trying to be more like my brother in this area. My brother is the most laidback person I know, which is either wonderfully refreshing or terribly exasperating, depending on my mood. He turned 30 this year and when you ask him how he felt about it he just shrugs. The other day I was telling him that I wasn’t feeling thrilled about turning 28 when he sagely asked me how I felt about turning 27, 7 months, and 3 days. I of course said I didn’t care about that and he then asked why 28 was any different.

Well, fine, big brother, be all annoyingly chill about everything why don’t you and I’ll just stay here and have this existential crisis on my own.

Okay but as I was saying this year is a little different. I’m still sick, but, I’m not sicker than last year. Not only that but I’m actually better than last year.

I am always so hesitant to use that B word because it’s like a starting pistol in the race of jumping to conclusions. You say “better” and people hear “all better.” They assume better-the-end-point as opposed to better-that-relative-place-that-is-anything-but-a-fixed-point. Illness and better are two concepts that are so congruent in our minds that it can be hard for people to wrap their heads around the idea of being better than before but also still being really sick.

But with that disclaimer in mind, yes, I am turning 28 better than I was when I turned 27. And for the first time in I-don’t-know-how-many years, I’m not just hopeful that I will be able to say the same thing when I turn 29, but I actually see it as a realistic possibility.

Although there are a lot of different elements at play here, I owe part of this improvement to one specific treatment, and so I actually owe it to all of the blood and plasma donors out there.

I know I haven’t shared many health specifics here in recent years, but we have figured out that I have an autoimmune disease, and for the last year, on and off, I have been receiving a treatment called intravenous immunoglobulin (IVIG), which is a blood plasma product made from pooling the antibodies of blood and plasma donors.

When you donate blood, your donation is separated into red blood cells, platelets, and plasma. Plasma is the liquid part of the blood that contains all the proteins, including antibodies. Some of that plasma is used directly for plasma transfusions, and some of it is manufactured into immune globulin products for IV or subcutaneous use. Plasma can actually be donated on its own and more frequently than whole blood donations can be made. If you live in the U.S. you can even be paid for your plasma.

e602afd2-49a7-458e-9e30-186e0c0fad35I don’t know exactly how IVIG works when it comes to autoimmune diseases, because medicine doesn’t even know, but it somehow stops my immune system from attacking cells in my body that it shouldn’t be attacking. It’s not a cure, rather an ongoing treatment, and not an easy one, at that. The side effects are sometimes as bad as, and at times even worse than the symptoms we’re treating. 

But as a result, for the first time in close to ten years, my overall quality of life is improving instead of worsening.

I am so grateful I don’t even know how to put it in words.

I am also terrified. Because there is a global IVIG shortage right now. Because demand is outpacing supply. Because every day I go online and see another person talking about how their treatment has been cancelled. Because I don’t know if one day that will be me. Because the last time we stopped my IVIG I lost all of the progress I had started to make. Because I don’t want to go back to where I started. Because even though my everything now is not at all what it used to be, I don’t know how I will get through losing everything. Again.

I hate that there’s nothing I can do about it. Because the only way to increase supply of IVIG is to increase blood and plasma donations.

And I can’t donate blood.

I always wanted to. I signed up to donate during my first semester at university, but that is the semester I got sick and never got better. That is when, unbeknownst to me for more than nine years, I developed the autoimmune disease I’m receiving IVIG for today.

And just as I hate that there’s nothing I can do about it, I also hate asking for help.

Yet here I am, asking, because I can’t donate blood or plasma.

But maybe you can.

Before you feel the need to justify to me why you can’t be a blood donor, please please please, you don’t need to! I’ve spent the last decade woefully saying, “I would if I could but I can’t!” every time I hear or see a commercial calling for blood donations, feeling the need to explain myself anytime anyone shares a post about it. I know there are so many reasons, including reasons beyond just strict ineligibility, that keep people from donating. You do not owe me an explanation.

However, if you’ve ever wanted to be a donor…have ever thought about being a donor…are a registered donor who has been meaning to make another donation…or are right now considering it for the first time, I encourage you to please take some action! Even if taking action means just starting by learning more on the Canadian Blood Services website. (I don’t know how it all works in any other country but I am confident that Google can help you!).

And if you already are a donor, please know how grateful I am to you. I am grateful to you every time I get to eat a little bit of something new, even if I feel sick afterward. I am grateful to you every time I get to delight in playing with my nephew, even if I am too tired to move for the rest of the day. I am grateful to you that when I turn 28 this month I will have something I actually want to celebrate.

I am still sick and I am still in pain, but in my spirit I feel more like myself than I’ve felt in a really long time, which is a kind of healing all on its own. And for that I am so grateful.

To past, present and future donors, all I can say is thank you.

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2 thoughts on “That B word…Birthday? Better? Blood?…It’s Blood. And P.S. Plasma, too

  1. Not sure how I managed to actually land here, I think I was looking at what is TPN… anyway, maybe I’ll just say “you are welcome”. Sometimes people say that our blood is wasted, but I’m glad it’s helping you. I haven’t donated in a while, but this blog is a reminder that I should again.

    I’m not sure if this will provide some hope, but people are working to help,
    https://www.scitecheuropa.eu/when-the-immune-system-attacks-the-body/89007/

    And have a happy birthday.

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