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Waiting on Blood Work

It has now been a few months since my last infusion.  I love the Ferrlecit.  Although, two infusions is recommended, I've been doing one and then it is about three months before I need another.  With the Venofer, I'd have a series of five infusions over five or six weeks and still need a new round three to four months out.  This new iron is so much easier on me.

I have been so fatigued the last few weeks.  It's just that fatigue that makes it hard to get out of bed and with a teen and a tween, I just don't have that luxury.  I have to get my son to classes.  He also does tae kwon do and Scouts.  My daughter dances most days of the week.  I also homeschool my daughter.  As hard as it is, I do function but the fatigue is overwhelming.  One nice thing is that I've been falling into bed at night and sleeping hard for eight to nine hours.  Always appreciate uninterrupted sleep.

So, today I had my levels tested.  If my ferritin is below 10, I'm sure I'll be in for an infusion.  I'll keep you updated.

Comments

  1. Hi Kay;

    Thanks for writing this blog. I have been receiving infusions for 8 months now and I have had the same experience with venofer. I would get 5 and be good for three months and then I would need another set. What's very different between us is that my ferritin threshold is much higher. I start feeling tired when my ferritin drops to 230 and this is the threshold I have set with my hematologist. As soon as I test 230 I get infusion. My hemoglobin and RBC was always good so I have never been diagnosed with anemia but my ferritin was 7 ten months ago and that's when the whole thing started.
    My hemoglobin is 15 now but my iron serum and transferrin are normal but on the very low side. Because venofer is not lasting long, on Thursday I am scheduled to try infed. Do you have any experience with Infed. I wonder if I too will have to deal with this for such a long time...3 years...gosh that's not encouraging at all. But you are saying its new normal for you so perhaps I will feel that way too after some time.

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  2. Wow, 230? I think my levels now go up to something like 80 or 90 and when they are there, I feel great. I think the Infed is Dextran. I did okay for awhile with Dextran but then had a bad reaction. Apparently it is the hardest iron to tolerate and there are a lot of side effects with it. You might look into getting Ferrlecit. It's a lot easier. That said, I just had an infusion (that I need to blog about) and have felt virusy since but, overall, not as bad as I've felt other times. I do hope they get everything figured out for you. Thanks for commenting. Keep us updated.

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  3. Yes, 230 :-). My levels go up after infusions to 400+ and I feel great for several weeks. But then ferritin starts falling at the average rate of 7.35 units per DAY which is a lot ( I am not taking any oral supplements in between). I work in the office and don't have a place to lay down and take a nap when I feel tired, that's why I persuaded my hematologist to give me infusions as soon as I get my very first symptoms. I just don't want to have any downtime at work. I hope you can catch yours earlier too.
    I will try Infed tomorrow and see if that lasts any longer. I have seen mixed reviews on line. I will also ask my hematologist about Ferrlecit.

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  4. I too wanted to thank you for writing about this. My teenage daughter actually found it after she had her first infusion a few months ago. It was helpful to read about how you feel after the infusions because she wasn't sure if how she was feeling was normal. Anyway, I'm also a homeschool mom, so I'm amazed that you are able to homeschool while dealing with iron issues. Hang in there!

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    Replies
    1. Hi Kellie. I am so sorry your daughter has to go through infusions as well. Do you know if it is related to her cycle? I have talked to so many women now going through infusions to know that reactions vary widely and it can all be normal. Have to add, just took a look at your blog. What beautiful photos. After I submit this comment, I am going back to read more :)

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  5. Not sure, could be a contributing factor but there seems to be more at play too, but we just can't seem to figure it out. She's had all kinds of testing done and more to come. If you want to know more specifics, you can email me through the contact page on my blog -- please don't feel obligated to contact me, but if you like to play iron detective I'd love to hear any ideas you have. ;-) Thank you for your kind words about my poor, neglected blog. :) Hopefully I can give it some love this summer.

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