REPOST: My three-hour immunoglobulin drip sesh
REPOST: My three-hour immunoglobulin drip sesh
Globulin sounds like goblin, so that's what I'm calling it
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Goblins and ghosts
Baldy and I headed out of town this week for some much needed and long overdue time in the woods. So, to honor my limited spoons and in celebration of Halloween, I’m reposting an oldie but a goodie. So many of you subscribed after this was originally posted, so I hope you’ll have a few laughs reading about the absurd appointment I had the first time I tried IVIG (intravenous immunoglobulin, herein referred to as ‘goblins’).
Without spoiling anything, I can tell you I was only able to have two of these monthly treatments before I had to stop, for two reasons: 1) I was having insane hot flashes in the days/weeks after each infusion (which mostly subsided once they stopped; it’s almost as if the goblins threw me headlong into perimenopause), and 2) even with insurance coverage, we could not afford the co-pay. In fact, the only reason we could afford the two infusions I had was that I had hit my out-of-pocket max for the year. I did have to pay a few hundred bucks, but once January were to come, the co-pays would have been in the thousands. We just couldn’t have afforded it.
No links this week, but I may do an abbreviated Antidote post the following week if I’ve got anything timely to send.
Enjoy!
In sickness and in health,
Amy
Well, friends, I got through it. My first IVIG (intravenous immunoglobulin) session. (Here’s a great Health Rising blog piece on it too from 2018.)
It was a long day. I think I’ll share this tale in a timeline.
9:30 - wake up, start drinking water to try to avoid headache later on.
9:45 - UPS drops off a big box full of healthy donor immune cells (goblins), supplies, anaphylaxis emergency kit, a tripod, etc.
10:00 - do a live online meditation session with 254 other people around the world. The woman leading the session reminds me of a frumpy Jennifer Coolidge and looks like she’d rather be at The White Lotus (season 1, of course) than with all of us.
10:30 - drink my decaf, hang with some felines (since I know they’re going to spend the rest of the day hiding from the scary boy nurse).
11:00 - to make use of my nervous energy, I clean the kitchen counters (like, clean-behind-stuff clean) for the first time in months.
This completes the kitchen cleaning I started a few days ago, after finally learning 3.5 years into Long COVID to CLEAN THE DAMN KITCHEN IN PHASES. Hashtag pacing.
12:00 - make my first meal of the day (I do time-restricted eating and don’t start eating until noon each day). Burn the first gluten-free waffle (nerves). Burn the second one too, but it’s not charred like the first one, so I eat it.
12:30 - set up my woman cave for the infusion sesh. Clear off my computer desk, stash some snacks near the couch where I’ll sit, put books/mags within reach, stow away clutter.
1:00 - the nurse is supposed to arrive. I’m exhausted from being wired all morning. I do my frozen shoulder stretches on my kitchen table. A word to the wise: keep using your shoulders when you get sick, or they’ll form adhesions and become immobilized. Getting old is fun. See?
1:30 - no sign of nurse. I lay on couch to rest.
1:45 - nurse calls to tell me he’s on my road but cannot find my house. This used to happen more often when we moved here in 2019. Then Baldy nailed the number sign to the telephone pole at the end of our driveway and painted the numbers white and it basically stopped happening. This doesn’t bode well.
2:00 - let’s call my nurse Arnold, a friendly older gentleman who showed up at the door wearing a mask, as I requested over the phone to the intake nurse the day before. I show him back to the woman cave and he starts setting up. He tells me to sit down and relax so he can take my blood pressure. A few minutes later, as he’s unpacking the UPS box, he comes across the Tylenol and Benadryl that my doctor ordered to arrive with the goblins to fend off headaches and any kind of MCAS reaction (mast cell activation syndrome; allergic-type reactions to all sorts of things and very common among long haulers).
Arnold: “you were supposed to take this a half hour before infusion.”
Me: “nobody told me that. The pharmacist only instructed me to open the box once it came and leave the rest to you.”
He hands me the pills and grunts. I take them.
2:30 - Arnold and I have been chatting it up. I learn all about the arc of his career, his wife, his four adult children. He prepares the drip by pouring eight small glass bottles of goblins one by one into an IV bag. Once he’s done, he beckons me over to the table to put the IV line in my vein.
My Casper-like transparent skin is every phlebotomist’s dream.
However, I usually offer up my right arm, because over there, the skin is ghostly AND the veins are deliciously bulgy. But my left arm is no slouch, and he chooses it so that my dominant hand can be free throughout the drip for various time-killing tasks.
While he’s getting ready to puncture me, he decides it’s time for a little lecture from left field.
Arnold: “I need to tell you that you really have to answer your phone.” (apparently referring to the day before, when he called me and it went to voicemail).
Me: “My phone silences unknown numbers. Also, in your message, you said to call you back if I had any questions. I didn’t.”
Arnold: “But this is not good that you don’t answer. How will I get in touch with you?”
Me: “I will call you back. I just didn’t call yesterday because again, you said to call if I had any questions and I didn’t have any.”
I then found myself explaining to him that I spent 20 years of my career on call 24/7/365 doing crisis work, and I don’t like hearing the phone ring because: trauma trigger, so my ringer is always off. I call people back now.
Arnold: “so how can I get in touch with you for future appointments?”
Me: “Like I keep saying, I’ll call you back. Or you can text me.”
He made a face of disappointment (at least from what I could tell of his eyes and forehead above his mask), grunted, and we FINALLY MOVED THE FUCK ON.
2:40 - I roll up my left sleeve so he can take my blood pressure and puncture me. He sees my tattoos.
Arnold: “oh, my…you have a lot of these.” He looks over at my right arm and sees more. “Do they have any meaning?”
No, I just walked into the tattoo shop each time and said, “give me today’s special.”
What I really say is that some of them do, and I leave it at that, because you learn pretty early on in your tattoo-having tenure that the intonation people have when they ask you about your tattoos tells you all you need to know about whether they’re genuinely curious about the meanings or because they’d like to stockpile more ammunition in their judgment of you as an uncivilized, knuckle-scraping cretin.
He finally punctures me and it goes quite smoothly. Arnold told me earlier that in his country, he had been a kidney transplant doctor. Sticking a vein is child’s play for him. He tells me that when he got to the U.S. at age 55, he didn’t feel like doing another full residency in order to transfer his credentials here and practice as a doctor. His undergraduate degree was in nursing, so he just took his nursing exam and passed.
I return to my couch.
3:00 - the actual drip begins. He shows me the digital pump, encased in a long velcro pouch, so I can see that it’s working. He tells me any minute now, I should want to take a nap from the Benadryl. This does not happen. It feels like maybe this disappoints him too.
3:00-3:40 - the goblin pump beeps frequently. Arnold tells me this means it doesn’t like the vein we chose. He tells me to keep my arm as straight as possible. I’m left wondering how anyone lays down and sleeps during these infusions, as he said I’d be doing by now. Not that I plan to lay down with Nurse Judgy McJudgerson seated behind me. Images of Kathy Bates in Misery but as a twisted psychotherapist come to mind.
I take this picture above. It beeps. After a few minutes, I try taking a selfie. It beeps. Arnold laughs at me, then gently scolds me. “Keep it straight, okay?”
I reach over to get a snack. It beeps. I sit ramrod straight. It beeps. It’s a temperamental delivery system, that’s for sure. He says the needle is probably hitting the wall of the vein and we might need to change arms. When he unwraps the sticky gauzy stuff to have a look-see, he admires his handiwork: “it’s not even bulging, look at that.”
He flushes the line and comments that the flush didn’t go in easily. Still, he reattaches me. A minute later, it beeps.
3:45 - he finally admits defeat and we switch arms. Bulgy vein works much better; I can actually feel the goblins as they enter. Very few beeps and only when I move out of range.
He asks me how I feel and I say I really feel okay. He advises me to keep drinking water. Guzzle guzzle guzzle. More snacks.
4:00 - Baldy comes to check on me. He refills my electrolyte water and brings me a fork for my sliced strawberries. I remind him to eat the ones in the fridge that I sliced for him too. Love is grand.
4:00-5:00 - Arnold has all manner of forms to complete on me, since this is the first visit. He asks me several questions from forms I already completed the day before. I tell him I already did these. He says, “but they’re blank here.”
And this, dear reader, has happened to all of you at least once: you fill out some extensive paperwork prior to a medical appointment only to have them either make you fill it out again, or for them to walk in the exam room and ask you a battery of questions, all of which they could have had answered had they only taken 60 seconds to read what you spent 15 minutes filling out the day before.
I try to read a magazine in between his repeat questions, but it’s hard to concentrate. I try to play on my phone or read Substack, but no go. I get maybe 45 seconds of silence between each question I’ve already answered.
Then he moves on to the medications I’m on. To head this painful process off at the pass, I always go to medical appointments with a print-out of all of my many medications and supplements. I direct him to the print-out. He gasps. “All of this?”
Yes, yes sir. Did you think you were coming here to infuse goblins into the veins of a healthy person??
I still get no rest. He has to ask me about when I started each medication. This tests my memory, but I do okay. Arnold is impressed. “How do you remember all of that?” I say that each one is linked to something that happened, like a test result that I had or an event in my life that just happened to coincide with the need for a new medication, etc.
After about 20 minutes, he moves on to the supplements. “You know, it’s not good to take all of this stuff.” I tell him he doesn’t know the half of it. That’s the trimmed down version of all the things I used to take, all under the guidance of my functional medicine and infectious disease doctors (so mind your bees, Arnold).
When he’s all done, he says the absolute ZINGER of the day:
“You should change your name to CVS!”
This was me:
This time, Arnold made a funny while judging me, and I was so busy laughing, I couldn’t be offended.
5:00-6:00 - we’re humming along now, very few beeps. Arnold shows me the goblin bag and it is indeed flattening out. We chat a bit here and there. I read my magazine. I yawn some. He says, “you’re finally sleepy!” but the truth is, this is the same Long COVID and ME/CFS fatigue I get when I spend too much time socializing. Any interaction over an hour and a half gets really exhausting.
He looks around my woman cave, for what I’m not sure, until he speaks and then I become dreadfully sure.
Arnold: “so what are you, Christian, Muslim, Jewish?”
Me: “I’m nothing.”
Arnold (looks shocked): “you’re nothing? so you don’t pray?”
Me: “Nope.”
Arnold: “so if you don’t pray, who do you ask for help?”
Friends, at this point in any other life circumstance, my defenses would go up. I would summon my best language around why I have no need for dogma or an imaginary friend. I have read all the atheist books. I have been rock-solidly sure of my stance on this for the last 20 years. I have grown weary of explaining to people whose default position is “you must have some sort of religion, any kind (even though ours is always better than yours).
Because if you don’t, then what meaning can your life possibly have?” If you are a secular, non-religious person, you can never question someone who has religion in the same tones. Religion is sacred, untouchable, beyond questioning.
Except that it isn’t. Or, it shouldn’t be. It’s a life choice and if my particular choice in this category is socially acceptable to question and challenge, then the same should be true in reverse. But somehow, it isn’t. It’s considered offensive for me, a non-religious person, to ask Arnold, “so you ask an imaginary being for help? How does that work, exactly? And why would this being grant you your wishes over, say, a parent’s wish to heal their child’s cancer, or a villager’s wish that his missing relatives are found alive after a tsunami, or even controlling the outcome of a football game in the praying person’s favor?”
I digress. But you get the idea: this type of questioning is existentially exhausting to me. Just stop. I’m a nice person, you’re a nice person. Let’s respect each other’s choices or at the very least, not respect them but stay out of them, unless they are actively harming anyone (I could talk here about the emotional, physical, and sexual harms caused or enabled by some organized religion, but I’ve digressed enough).
So, I brought down my defenses because I was in hour four of fatiguing together-time and goblins entering my veins, and I simply said:
Me: “why would I do something I don’t believe in?”
Arnold kind of shrugged and then he said,
“please don’t be offended, I’m just trying to understand.”
(Why is it so difficult to understand the absence of a thing? A thing that was created by man millennia ago when there were not yet explanations for the seemingly other-worldly phenomena going on around people and civilizations? And, as Baldy pointed out later that evening, why would anyone need goblins infused into their veins if prayers were actually answered?).
“I’m not offended, I was just answering you.”
Dear Reader: I do not judge you for your beliefs or religiosity. I do understand that religion and/or believing in a deity may bring comfort, and that’s no small hill of beans. It is not how I choose to find comfort, and that’s my business. I have many friends and family who embrace religion; they don’t question me, I don’t question them, and we have plenty of laughs and plenty to talk about.
6:00 - things got awfully quiet after the Inquisition, which I was more than okay with by that point. I drank more water. I ate more snacks. He drank some water and ate his snacks.
He got up to check on the bag and said, “it’ll be any minute now.” While he was standing, he looked at the arrangement of family photos I have on my wall. He asked me about my family and I shared some stuff. He then looked at a picture of me and my (little) big sister, all dolled up after having our makeup professionally done at MAC in NYC, and he said,
“which one are you?”
Which one am I? He’d been looking at me for the last four hours. My sister and I only resemble each other if you squint. I am a tall, pale redhead with blue eyes and a German shnoz; my sister is a stunning petite brunette with hazel eyes and a button nose. Which one am I??
Here, see if you can find me:
I’m incredulous, but again, tired.
Me: “I’m the one on the left.”
Arnold: “that’s you?? You look….different.”
Me: “well, we had just had our makeup done and I’m not wearing any right now.”
Arnold: “no, it’s not the makeup…your face looks…fatter in this picture.”
I am stunned. At a loss for words. I’ve been sick for 3.5 years, ARNOLD. Do you think it’s possible that a gal might have dropped a few pounds in all that time while her immune system went haywire and her body was inflamed?
Also, WTAF?? Who comes into someone else’s house and SAYS this shit to them??
I don’t remember responding. I should have taken up prayer in that moment to see if I could speed up the emptying of the bag o’ goblins.
6:30 - BEEP. BEEP. BEEP. The goblins are all in!
I channeled Shangela, an absolute drag legend:
Arnold had already packed up all his gear in anticipation of making a hasty exit from Heathen House. He gingerly removed my needle and placed it in the sharps container. We said our goodbyes. He’ll be back again in a month.
You might be saying to yourself, “geez, Amy, this guy was A LOT. Why have him back?”
Good question. In a “was this just me??” state, I decided to seek the sage counsel of a longtime friend who not only shares Arnold’s cultural background, she has a close pulse on my horseshit. I laid out most of the perceived offenses to her and also shared his strengths. As per usual, she gave me an honest, insightful analysis of the situation, all while empathizing with some of the “good GRIEF” moments.
Ultimately, we agreed that he had been respectful of my COVID risk mitigation wishes, was a more than competent nurse (no bruises on either arm - that rarely happens after lab work, let alone a multi-hour infusion stick), and was pleasant enough for most of the four hours. And…
⚡THIS JUST IN⚡
Arnold called me as I was writing this (I didn’t pick up, because remember, I suck), but he left a kind message checking in to see if I had developed a headache. I only had a mild headache the night of the infusion and the next day, and I took some Aleve and it went away. No other side effects of which to speak.
But here’s the irony: I called him back (like I said I would) and HE DIDN’T PICK UP.
I was soooooo tempted to be a little shit and leave a message saying, “you really should pick up your phone when I call,” but I did the mature thing. I thanked him for his call and told him I was doing fine.
Typical Amy! Now the ideal situation for me, if I were ever to get those goblin transfusions (which I would never dream of doing after reading this account- other than the snack eating part) would be to have Amy be the day nurse!!! I wouldn't even try to convert her to Buddhism!
I adore your writing - you bring such a welcome light touch and warmth to our intense, difficult. experiences. A real treat among the many tricks we encounter!