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. 🙂
Hi I hope you feel better….. I’m scheduled to get my first infusion May 3rd. Thanks for the blog, it was a big help ❤️. I was really scared and curious about what I would experience
Hi Trina! I hope your treatment went well and that it has helped you feel better!
It is interesting how different doctors run the treatments. I know this is an older post but I will add my experience. I have been anemic pretty much my whole life. I don’t absorb it from oral supplements or my food apparently. Add being female 😜 A recipe for disaster. December 2014 my blood tests came back as having half the hemoglobin I should and ferritin stores of 2. I had muscle cramps, even holding a pen hurt. My hair was falling out by the handful. My TSH levels were fine(I still feel that when TSH is less than optimal it worsens the anemia). So off to the anemia management clinic I went. The first treatment took about 2 1/2 hours. Here, there is no pretreatment. Straight to iron. And getting poked really is the worst of it. The iron is a little cool going in as it has to be stores In the fridge. , here they use iron sucrose, and to my experience there is no burning going in. Once the iron is done, the first treatment was over 1 1/2 hours to finish, slow just in case there’s a reaction. There is less for your system to deal with. Then they do saline, then monitor for 30 minutes.
The subsequent 4 treatments were shorter and shorter. The blood work 10 days after the last treatment came back with ferritin of 174 and hemoglobin strongly in the middle range.
Unfortunately, infusions treat anemia, but don’t cure it in most cases. It’s may 2016 and I am starting a second round of iron. Levels were back down to 8. When call me in a few weeks to share my blood test results, I am going to question the
About what my levels need to be to be sent back because waiting until I am exhausted and losing hair every time seems silly. She did say she likes to keep levels at 100…. So why wait until I crash at 8?? Then I can share with my GP
Thank you for sharing your story. After reading what others posted i got scared. I go in on Friday for my first one of three. I also have no storage iron in my liver. Been dealing with this for a year. I still function but it takes all i have. I used to be so full of energy that it drove people crazy and they wondered how i did it all. Well i thought it was just age catching up with me for slowing down. I pray that my results are as good as yours. I am excited to hear you are doing well and this has changed your life for the better. Thank you again and God bless you!!!
Hi! Thank you for reading and for letting me know your story! It was scary for me too, the first time I went in. And, like you, I was barely able to function on a day to day basis, but this treatment has been such a benefit. I go in once every three months and it is so worth it. I will remember you in prayer on Friday–good luck! 🙂
Thank you so much for your post.
I am going in for the iron iv in a few weeks and I’m a bit scared of getting an allergic reaction as well. My iron level is at 7. Each month I try to bring it up and Ilose it all again with extreme heavy menses. I have uterine fibroids and my surgery is in January 2015..tho I’m on the cancelation list. I can’t believe I had
to suggest iron iv’s to my gyno. Its a
Anyway I would like to know how long it took for u to feel better after the infusion. I get light headed daily and I’m so tired of it.
Hi. Yes, my iron level was very low like yours and no one wanted to even mention the possibility of IV therapy! The day of the first transfusion, I was wiped out. The meds made my head hurt. But two days after the infusion, I woke up and got out of bed without it being akin to an Olympic sport. Within 4 days, I felt like a new person! It works pretty fast and will dramatically change your life. Prior to the first infusion, I’d cry for no reason. Walking from my bedroom to the kitchen was nearly impossible–and these are not exaggerations! In the end, I still have to have them about every three months. My doctor said it is like putting gas in a car–some people get the infusion and it’s like their bodies reset, they never need another one. But others, like me, run low again. The good news is, you will not have to get this low again, even if you are like me. The numbers are checked a lot and if there is a trend that shows the numbers are dropping, you will be scheduled for another one. I was scared too, but it is truly something that helps me live like a normal person!
[…] I go in, again, for a three hour intravenous iron drip. Again. I’ve almost reached the point where it doesn’t phase me anymore. I […]
[…] had reached a 6 (normal FE levels are at least a 30). So the decision was made to start giving me intravenous iron therapy in February. Ironically, this is what scared me. 6 hours is a long time to sit by yourself in a […]