An Intravenous Iron Story
Most children love riding bikes, playing Tag and generally being active. Those who know me know I was just the opposite. I never liked sports or playing active games. I was the bookworm, straight-A teacher’s pet. I used to think that was just part of who I was. But then, around 12/13 years old, I started having intense, mind-numbing migraines. Migraines so painful I thought I was dying. My mother scheduled me an appointment with a well-respected Vanderbilt pediatric neurologist named Dr. Piña-Graza. Several things stood out for me about my first visit with him. First, he asked my parents to leave the room, then asked me how things at home were. I lied, he bought it, then told me: “There’s more wrong with you than migraines. You are also anemic.” Thus began my battle with this complicated… disease.
Every doctor I’ve ever seen has told me I need prescription iron. I’d take the pills but my hemoglobin and ferritin levels never rose. Finally, about two months ago, I became very, very lethargic and weak. When I say weak, I mean so weak that getting out of the bed was a physically draining, difficult and painful ordeal. I’d walk down to the kitchen and feel exhausted. By the time homeschool was over, it was all I could manage to clean up. Dark circles started forming around my eyes. My pale skin turned white. I felt like crying half the day away, every day, simply because I was so darned exhausted.
At first, I blamed it on stress. Then, loneliness. Then, my levothyroxine (thyroid medication) levels. I scheduled an appointment with my idiot endocrinologist to check my tsh levels. Thyroid levels were normal, so that dosage was right. He referred me back to my primary care physician. I went and broke down in tears at that appointment, pleading with him to find out what was wrong. He tested my iron and discovered that I’m severely anemic, with levels at 6. He referred me to a hematologist, Dr. S. Today, Dr. S gave me the first of what is likely to become a routine therapy: intravenous iron. Now, prior to this morning, I spent 3 days researching this. While I found all sorts of information on what it is and its usages, I only found 3 blog posts about actual people having gone through it. That disappointed and shocked me. So, I’m writing this for a couple reasons. One, I want my daughters to one day know what I was doing on the days I left them with their Mimi to go to the hospital and two, I really hope that this is a story that matters to someone who may be searching for information. So, below, is my account of my first intravenous iron therapy. My appointment at St. Thomas Oncology was for 9:30 this morning. I’d been warned that it would be a 4 hour appointment so I came prepared with a blanket, my Kindle, my phone and a very special pillow named Lambie.
I arrived at 9:25 and went back with the first nurse at 9:35. She took my weight and then poked my finger to get a hemoglobin and ferritin count (15 and 6). Then she led me to the “Chemotherapy Suite” to wait on the IV therapy nurse. Wigs sat on the counters. Admittedly, this made me uncomfortable and scared. A minute after sitting, a nurse came and took me back. She went over some paperwork and explained what was going to happen. Then she had to start the IV. This process turned out to be the worst part of the whole experience. She tried once, the vein blew. She looked around, poked again with no success. Then she called her boss. The clinic manager looked, poked three times but did not get the vein.
They called a third person in to look. She poked once, no luck. By this time, they were talking of sending me home. I did not want to go home; I wanted the iron. So the first nurse returned, and I asked her to look again. Two sticks later, she had the needle in. Success!!
But still no iron yet. First, they needed to make sure I wasn’t going to have an allergic reaction. So they started me on some pre-meds via the IV. Tylenol, Decatron, Benadryl and Zantac. Now, back to those miserly three personal stories I’d read about IV Infed Iron. All three reported severe problems with the pre-meds. Seeing stars, blacking out, etc. I was scared of the pre-meds. I did not want to go to sleep, and I was afraid of the side effects.
I underestimated how high my tolerance for medicine is. The Benadryl bag came first. It was a ten minute drip. My head started swimming a little, and when the nurse asked me questions, my speech slurred some. I’d been reading in the Kindle, but it was too hard to concentrate now, so I put it alway. By this time, half the bag had dripped and I started to relax, because I still wasn’t sleepy; my hand didn’t hurt and I wasn’t seeing stars. Once the Benadryl bag was in, they flushed it with saline. The saline made my arm cold, but felt good. Then came the Decatron bag. It, too, was a ten minute drip. My sister called during this time, and I was able to talk fine. My head was hurting now, but it didn’t feel like I was swimming anymore and my speech had improved. I still wasn’t sleepy, much to my relief. After the Decatron bag came the Zyntac and Tylenol. After they were done, She bought in a syringe with a small amount of iron in it. It was the test drip. The iron stung somewhat going in, and I got really nervous. I was afraid of being allergic. I wanted someone to talk to, so I checked Facebook and posted a couple pictures that I’d taken of the room I was in, and the IV. I had to wait an hour after the test drip was in to make sure I wasn’t going to have a negative reaction. I didn’t. My head still hurt, but the IV injection site was still fine. I wasn’t hooked up to anything during the observation period, so I got up to go to the restroom. Standing made me dizzy. As I walked, the nurses were still talking about how difficult it had been to get the IV started.
“You are a problem patient,” they joked. “You can only go to the bathroom if you PROMISE to keep that arm still and straight like a board the whole time.” I promised, went potty and made it back to the seat. I was exhausted after that ordeal. Finally, it was time for the full bag of iron. They bought out the bag and I was so happy to see it, I wanted to kiss it
The iron started dripping.
I read a little, watched a patient come in, receive a shorter treatment and then leave. A chemo patient came, received treatment and left. Still, I sat. I checked Facebook again, read a little and, because my head was hurting and throbbing, I laid it back in the recliner and closed my eyes. I opened them soon after, leafed through a magazine and people watched. The nurse bought me a Sprite and some crackers. I ate those and drank the Coke. It took a full 2 hours and ten minutes for the bag to empty into my arm. I was tired, and I was ready to leave, but I was afraid of driving. So I walked, shakily, to the food court and got a cookie. I ate it and decided to try driving home. My stomach was hurting, a side effect of the steroids, I’d been told. I didn’t keep the van as straight as it should have been because it was really hard to focus. At one point, I realized I was in the second lane but could not remember how I got there. For anyone undergoing iron treatment, even if they tell you it’s ok to drive yourself, I would recommend having a friend with you to drive you home. I don’t feel better, honestly. I’m still really tired and weak. I feel drugged. But that was to be expected. Dr. S said it can take up to five days to start feeling better — and some people don’t feel better at all until they get a second therapy. I’m very tired but as contradictory as it sounds, I also feel a lot more “awake” then I have in a long time. Friends prayed for me. I prayed. I may still have to have another iron therapy, but I am glad I opted to have this one. I have to be fixed up soon. After all, Beech Bend opens in a few short months and I will have to be capable of riding roller coasters, swimming and walking around an amusement park with two young girls for eight hours or more. The point of life, after all, isn’t to watch others living it–it’s to live it yourself. And, also, I fully expect to feel like Superwoman in a week’s time. 🙂