So I'm going in for a blood transfusion tomorrow morning. The Hematologist says my levels are bad enough to warrant two units of blood immediately, and then iron infusions starting monday. I'm going to get 2. He said he was really shocked at how low everything had gotten before I seeked out help. I guess I need to start being more proactive about my health.... Whoops.
Don't beat yourself up over this... I let myself slip last year and freaked out the docs a bit when my hemoglobin came in at 4.6 I was offered a transfusion but since they had no idea what caused the anemia (this was first time in decades I had been anemic) we decided to go with the infusions instead so they could continue running tests. Took a month to get me my hemoglobin into double digits, took a month break and went up only a tiny bit on its own, so then another month of weekly infusions got me up to 12!!! But you have to keep monitoring yourself... a few months later, I started getting tired again and got retested, down to 9.8 - but was able to get up to 12 with only one month of infusions this time because I didn't let it drop too much. By then they finally had decided the problem was Crohns and put me on Pentasa which has seemed to help, though I had myself tested yesterday because I've been dizzy and a little tired. I'll get results Monday and if I'm low, I'll have another round.
The key is to constantly be aware. As soon as you start feeling SOME of the symptoms of anemia, get a CBC. My GI gave me a standing order for labs once a week... I definitely don't actually go each week (nor does he expect me to), but it gives me the option to just drop in for a test whenever I feel "off". He told me that I should pick two or three simple activities - walking a few blocks in a hilly neighborhood is my litmus test - and as soon as I feel that activity is getting more difficult (tiring, any chest pain, difficulty breathing, dizziness, anything out of ordinary) I should have levels tested. It is nice to not have to call for the lab orders, but to just drop in as needed.
Anyway.... for me, the infusions were no more painful than any other IV (I hate needles so that is my only issue). The first two series I had were venofer, and they took the longest... about 45 min- 1 hr. I switched to injectafer and it only takes 20-25 minutes. For venofer I went once a week for a month, for injectafer only 2 visits 2 weeks apart. Can't really compare which one had a faster effect as I started venofer at hgb 4.6 but starter injectafer at hgb 9.8, nowhere close to as low as I had been originally.
It is important to avoid oral iron supplements because they can actually interact with the infusions. Also, the very first time you get one, they may give you a "mini dose" just to make sure you are not allergic. Also expect to stay longer the first time for observation afterwards. Bring something to read or a nice set of headphones! Some people talk about getting Benadryl with the infusion but I have never had that.
As far as cost... it is going to depend on your insurance. I hope yours is good. I have phenomenal insurance that I almost feel guilty about. I only pay $20 each time I have an infusion. I know that what the doctor bills the insurance company is significantly lower for the venofer (about $800 -900 each) than the injectafer (about $1800 - 1900 each), but the cheaper one needs twice the number of visits, so it actually comes out more similar than it looks at first glance. I hope these numbers don't scare you -- the infusions are really important. Also, I live in the Washington DC metro area -- all health care seems more expensive here than what I have compared with others living elsewhere in the states.
good luck this week -- keep us posted on how it goes!
