What It's Like to Have Anemia and Get an Intravenous Iron Infusion
Having suffered from iron deficiency anemia for nearly 14 years, I've put together this article to share my experiences with my first round of iron infusion therapy. You'll hear the good. You'll hear the bad. You'll hear that this is probably one of the best treatments I've ever had.
I do apologize ahead of time—my story is rather lengthy, but I have been dealing with anemia for some time now. If you are about to begin iron infusion treatments, I hope you find this page helpful and can learn something from my experiences.
My History With Anemia
Congratulations! It's a Girl—and a Case of Iron Deficiency Anemia!
In 2003, we welcomed our second child into our family. Not only did we gain a daughter, but I also gained a case of iron deficiency anemia that has only recently been resolved.
My Daughter's Birth
I don't believe I had ever struggled with anemia before my daughter was born. At least, I'd never been told I was anemic. When I was pregnant with my daughter, I had a planned C-section. Several days after the birth, I was taking a shower in my hospital room when I either passed out or came close to passing out. To tell you the truth, it was all a blur. The doctors gave me some little red pills but never told me what was going on. I just figured it was birth-related, took the pills for a week or so, and then forgot all about them.
Several Months After Giving Birth
For several months after having my daughter, I was tired—really, really tired. But I had just had a baby. How many moms of infants do you know who aren't really, really tired? I didn't think anything of it until I dropped my son off at kindergarten one day. I was walking back to my car while carrying my daughter. I stepped off the curb, and next thing I know, I'm on the ground looking up at all these people helping me. I had passed out. Thankfully, I had somehow managed to twist around and land with my daughter resting uninjured on top of me—I was pretty banged up.
My doctor, after doing some blood tests, discovered I was anemic. She asked if I was still taking those little red pills. I told her no—I didn't know they were for anemia, and I didn't know I was anemic.
According to the World Health Organization, roughly 30% of the world's population is anemic!
I Started Taking Iron Supplements
I won't bore you with a lot of details. I will tell you that I struggled with anemia for the next eight years. Normal hemoglobin levels for women are between 12 to 18 g/dL. I would bounce back and forth between 6 and 11 g/dL. I have not had normal hemoglobin levels since having my daughter; it has even gone down below 5 g/dL, the threshold at which blood transfusion would be required. Rather than giving me a transfusion, they just increased my iron supplementation.
For eight years, I took every type of iron pill available. None of them worked well. I just wasn't absorbing iron. One brand, Slow Fe, did stand out from the rest because they didn't give me any stomach problems common with iron supplements. It's available over-the-counter. I recommend talking to your physician about it. However, over time, even this gentler brand started causing stomach problems, so I tried other brands of iron supplements.
I tried changing my diet. Everybody had their little tips and tricks. I tried them all to no avail. I was told that if I pushed through the pain of taking iron pills for another month or so, I'd get my level up to the 10 and 11 g/dL range, and everyone would be satisfied. However, months later, I started feeling the effects of anemia again, and it was starting to affect my heart.
Still No Answer
None of my doctors knew what was causing my anemia. Some suspected it was related to my cycle and scheduled me for an endometrial ablation. It ended up being canceled the day before the procedure becaue another doctor believed that due to my bicornuate uterus, the ablation would have caused more problems. Instead, I had two colonoscopies. Currently, due to the pain I have when taking iron pills, they believe the issue might be upper GI but we still don't have that answer.
Considering Iron Infusion Therapy
In 2009, I had a physician who ran the gamut of tests and sent me to a hematologist to consider iron infusion therapy. However, soon after that appointment, we moved across the country. I found a new physician, but they wanted to start from square one. They were worried about my heart, so I had ultrasounds, stress tests, lots of blood work, and they weren't keen on sending me to the hematologist, so I didn't push it. Look back, I should've forced the issue.
The Anemia Affected My Heart
Several nights before Thanksgiving in 2011, my heart started beating erratically. It felt like it would stop momentarily and then start beating really fast. I was having a tough time breathing and was getting a bit scared. My husband took me to the ER. I told them that I knew it was my anemia. Hours later, they came in to confirm that fact and told me that I was right on the border of getting a blood transfusion. I really didn't want one, so they told me to go see a hematologist.
"Anemia is neither normal nor harmless and may have far-reaching effects."— National Anemia Action Council
My Hematologist Recommended an Iron Infusion
The morning after my ER visit, I scheduled an appointment with a recommended hematologist. I must admit, having an appointment at the local cancer center was a little unnerving. Everybody in the center was wonderful, though. Normally you go to the doctor's office and everybody is all business. I found everybody here to be very friendly and cordial. The staff joked with me and put me at ease.
The physician's assistant took my blood and ushered me into the exam room. Shortly after, the doctor came into the room. She took my history and asked routine questions. Once the results of the blood test were brought in, she promptly announced that I needed an iron infusion as soon as possible. Of course, we would need to figure out what was causing the anemia, but the infusion would solve my immediate problems. She told me I could have the first infusion in the morning. My hemoglobin was at 8 g/dL, which I thought was pretty good. I've had lower levels, but given my history, she felt iron infusion therapy would help.
12% of women aged 12 - 49 are iron deficient.— anemia.org
What Is Iron Infusion Therapy?
These are common questions that I have asked or that people have asked me. In a nutshell, iron infusion therapy is when iron is delivered into your body through your veins.
Why not take iron pills?
Some people, like myself, just struggle with iron pills. Either the iron is not absorbed or they have so many side effects that they make life even more uncomfortable. Constipation, stomach upset, and stomach cramps are the common side effects iron supplements. I would have terrible stomach pains whenever I increased my iron intake.
Are there side effects of iron being delivered through an IV?
The quick answer is yes. The most serious side effect is a possible allergic reaction that, in some cases, can cause anaphylactic shock. I was told that other side effects could include rashes, joint pain, headaches, and flu-like symptoms.
With the risk of a serious reaction, why do people agree to take iron intravenously?
You have to determine which is worse, the reaction to iron or your anemia. In my case, anemia adversely affected my heart. I struggled to get through each day because I was so exhausted. I've had doctors tell me that if I didn't get this fixed, I might not live to see my children grow up. Yes, anemia can be that serious. For me, getting free of anemia was worth the risk of a possible allergic reaction to the infusion.
Are there safeguards in place in case you do have a serious reaction?
This was one of the first questions I asked my doctor. She told me that, yes, they have had patients have serious reactions, but they were closely monitored. If somebody starts to show the signs of a reaction, they know what to do. She said most patients have milder side effects if any.
Will I feel better once the IV is removed?
No. Even though I knew this, I remained hopeful. Each person is different. I've talked to women who were back in their usual routine by the next day, but there are some who needed a few days of rest. Plan ahead. Schedule your appointment right before the weekend so that you can take a couple days of rest if needed. For some of us, it may take up to four or five weeks before we really feel a difference.
According to the CDC, the number of visits (to physician offices, hospital outpatient, and emergency departments) with anemia as the primary diagnosis is 5.3 million annually.
My First Infusion Experience
I arrived at the cancer center at 8:30 am and was promptly ushered back into a large room filled with recliners. The nurse told me to pick a chair. Being a little nervous about the procedure, I chose one right in front of the nurse's desk. About 3/4 of the chairs were occupied with chemo patients, but I saw one other woman with a rusty, red iron bag. Some people were napping. Some were watching television. Some were plunking away on the keyboards of their laptop computers. All were hooked up to IVs. Because there was Wi-Fi, I decided to catch up on the news.
By 9 am, I still was not hooked up. The nurse said there was a problem with my insurance, but they were working on it. I never found out what the problem was, but by 9:30 am, a nurse came over to insert the IV. At this point, I was chatting with my son online. I asked the nurse if she could give me the IV in my arm rather than my hand so I could continue to type comfortably but she explained that they preferred to use the hand and that it was just easier overall. Easier is good, so I was fine with that decision.
Drink a glass of water before your infusion appointment. The extra fluid will make it easier for the nurse to find your vein and help avoid the discomfort of repeated jabs.
I Started Feeling Dizzy and Extremely Tired
After she inserted the IV, I continued typing away with my son. After a few minutes, the room started swimming, and I could no longer focus on my computer. I wasn't sure why, but I quickly typed that I had to go and closed my computer. I felt like a little schoolgirl as I raised my hand to get the nurse's attention. It turns out that they had put Benadryl in my IV to reduce any allergic reactions. I knew I was getting it, but I thought it would be in pill form.
Let me just pause a moment to say, oh my goodness, Benadryl in an IV really packs a punch quickly. The room was swimming, and suddenly, I was beyond exhausted. The nurse told me that many of the patients liked to take naps once it hit. I was fine with that suggestion. The nurse brought me two blankets because I became very cold as well. I think I was asleep before she began the iron infusion.
I woke up maybe an hour later to see that the iron was dripping and my hand, where the IV was inserted, was throbbing a bit. The pain was not bad, though. It was just uncomfortable, so I didn't say anything. Thankfully, I fell asleep again. When I woke up about a half hour later, half of the patients had left. My hand was a little achy but, again, very bearable. I also found that I was a bit itchy and began scratching my neck and head. I was more than halfway through the bag though and was happy about that. The room was no longer swimming, but I was still pretty tired. I got on my computer again but only lasted about five minutes before I decided another nap sounded wonderful—and it was!
I Experienced Some Stomach Pains
I woke up to some stomach pains. This was not worrisome for me because I had the same pains when I was taking the iron pills. They subsided after a while. Soon afterwards, the iron bag was just about empty, and the nurse came and freed me from it all. I was supposed to have another transfusion the following week, but since I had a very busy schedule that week, they scheduled my next infusion two weeks out.
As I headed home, I still felt tired. After about a half hour at home, I felt even more tired, so I laid on the couch. I woke up several hours later beyond exhausted—even more so than when my hemoglobin levels were really low. I joked with my family about feeling like actual iron had been pumped into my body because my legs felt leaden just walking around the house.
Recovering at Home
Long story short, for the next five days or so, I was exhausted. I also felt feverish. My body was a bit achy, and I had a dull headache the first night. Thankfully, all of this took place over the weekend, so my husband was able to help with the kids while I just slept.
I felt a bit depressed as well. I began to think the treatment was not working and wondered what I would do. Thankfully, on the sixth day, I woke up feeling a lot better. I won't say I felt like Superwoman, but I had no problem getting back into my usual schedule.
Up until my next appointment, I was still tired and taking frequent naps, but having had anemia, I was used to that. A couple days before my appointment, I started to worry about the next infusion. I didn't want to go through that extreme exhaustion again. I think I would have talked myself out of the appointment if my husband hadn't convinced me not to. He told me to try it one more time and see if it would help, so I did.
Keep in mind, it may take more than one infusion and at least a few weeks to see results.
My Second Infusion
Again, I showed up at my appointment bright and early. This time, they had me hooked up to the Benadryl within ten minutes. The nurse felt that my exhaustion the last time might have been from the Benadryl. I explained that I have always been a lightweight when it comes to medications. She said they could lower the dose a bit, but because of my itchiness before, I might also be more susceptible to a reaction from the iron if the did. I would much rather deal with exhaustion than hives or some other time of reaction, so I told her to keep the regular dose.
I was prepared this time. I brought my pillow from home and got my two blankets ahead of time. Within a couple minutes, I was out. I slept longer this time. When I woke up, I saw that I had gone through quite a bit of the iron bag. I was itchy again—a bit itchier than the first time. I also had a few stomach pains, but my hand did not hurt as much this time. I also dozed off again once or twice.
I think the second time was easier. Perhaps part of that was just knowing what to expect. When everything was done, they scheduled lab tests and a follow-up doctor's appointment two weeks out.
I went through the same exhaustion this time, but it only lasted two days. I had talked to a couple of other women who said they reacted to the Benadryl the same way, so I am sure it was the Benadryl that caused my fatigue. I did not have the flu-like symptoms this time, and after two days of rest, I was back in my routine once again.
Next time I start experiencing symptoms of anemia, I'll skip my general practitioner and OB and make an appointment with my hematologist instead. I really feel like she was a miracle worker.
My Follow-Up Appointment
They took blood samples right away. Looking at my results, my doctor said that I was still slightly anemic but that my hemoglobin levels had risen to 11 g/dL (at 12 g/dL, they become normal). I don't think my level had been this high in years, so I was thrilled! The doctor looked pleased as well. She said the real indicator would be the ferritin levels, but those results would be back later in the week. She told me that I had had no detectable ferritin at my last appointment. Wow! She also told me that if my ferritin levels rose enough this time, they'd see me again in six months (unless I started showing signs of severe anemia again). All in all, I was very pleased with how my hemoglobin had risen so quickly.
Several days later, the nurse called to congratulate me. Not only had my ferritin levels gone from non-existent, but she said they were excellent! I was so thrilled that I would have gladly named my daughter after this doctor in appreciation. However, my daughter, being eight, is rather attached to her name, so instead, I heartily thanked the nurse.
Two Months After My Last Appointment
I felt wonderful! I wasn't running marathons or anything like that, but I had spent a number of years with no energy at all. Naps were a common thing with me, and I was exhausted at the end of each day. At this point, I was able to go out walking quite a bit. Naps were no longer a necessity.
Are you struggling with iron deficiency anemia? Are you going to start infusion therapy or have you been through it already? I'd love to hear from you. Leave a comment below!
Are you anemic?
Have you had iron infusion therapy for anemia?
If you have had an infusion, was it worth it?
If you have had an iron infusion, have you had any side effects?
What were your side effects (if more than one, pick the most serious)?
© 2012 Kay