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I admit to being scared- update in post #32


melmichigan
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I've struggled with anemia for forever.  I saw the hematologist yesterday and my numbers just came back, the lowest they've ever been.  I'm supposed to go tomorrow for IV iron.  I'm scared of having a reaction.  It's pure emotion and I can't admit it at home so I'm admitting it here.  Thanks for letting me vent.  I need a good book to get lost in!

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:grouphug:  I have been doing that also and have read a lot. 

 

I just finished The Book Thief. Excellent- I finished it and immediately re-read it.

 

Let us know how it goes; I will be thinking of you  :grouphug:

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Are you having Dextran or Sucrose (Dextran is usually given in one big dose and the Sucrose is given in small doses once or twice a week over several weeks)?  I know Dextran is suppose to have a higher chance of reaction but I have done well with it every times (I've had it at least 5 times now)  The won't give it to me when I'm pregnant thoughtand have to have Sucrose then.  I much prefer the Dextran for the simple fact that I feel better so much sooner.  And remember the reason they do it in the clinic is on the rare chance you do have an issue, they are already prepared to deal with.  I'm sure you will do fine.

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I'm sorry. Anything IV doesn't make me happy. Read Home Comforts. Once you have energy again, you'll re-fold all the sheets in the linen closet.

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I recommend _All the Light We Cannot See_ for an engrossing read. Hope your procedure goes smoothly!

 

This is an excellent book. The Nightingale by Kristen Hannah is also very good. I read both this past week. I think I like The Nightingale a bit better, but both books are excellent. 

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Are you having Dextran or Sucrose (Dextran is usually given in one big dose and the Sucrose is given in small doses once or twice a week over several weeks)?  I know Dextran is suppose to have a higher chance of reaction but I have done well with it every times (I've had it at least 5 times now)  The won't give it to me when I'm pregnant thoughtand have to have Sucrose then.  I much prefer the Dextran for the simple fact that I feel better so much sooner.  And remember the reason they do it in the clinic is on the rare chance you do have an issue, they are already prepared to deal with.  I'm sure you will do fine.

I'm supposed to have Ferraheme, but I just found the updates to all physicians and medical personnel in Canada from the end of the year.  Based on those criteria it would be contraindicated in my case.  I also have severe asthma and they didn't say anything about premeditating and they are planning on IV push, where all the new information from Canada and Europe no longer allow IV push because if reactions.  I'm going to have to call them first things in the morning.  

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I'm supposed to have Ferraheme, but I just found the updates to all physicians and medical personnel in Canada from the end of the year.  Based on those criteria it would be contraindicated in my case.  I also have severe asthma and they didn't say anything about premeditating and they are planning on IV push, where all the new information from Canada and Europe no longer allow IV push because if reactions.  I'm going to have to call them first things in the morning.  

 

I haven't heard of Feraheme but it looks to be a newer option.  Since I've always done well with the Dextran, my doctor has let me continue to use that even that it isn't common anymore so he probably hasn't even mentioned it to me since we have something established that works for me.  The few articles I've read all seem to indicate fewer reactions with Feraheme than iron sucrose (which has fewer reaction than the Dextran I use) so that at least works in your favor.  I've always been premedicated beforehand even though they didn't always tell me that before I got there.  I think the protocal they used was something like a benedryl and tylenol and wait for 30 minutes and then a small test dose of the iron followed by close monitoring (nurse checked in every 5 minutes).  After 30 minutes (or maybe an hour), then they started the full dose but at a slow drip rate.  Then they upped the drip rate after a while once they saw I was tolerating it well.  I can't remember if that's exactly how it went, it's been a while since I've needed one  but I know they always been very cautious even though I've had many of them and never had even a hint of reaction.  Mostly I just really remember having a nice nap.  The benadryl knocks me out so I usually sleep through the majority of it anyways.

 

But I don't have any drug allergies or other contraindications so obviously you do have some special concerns.  I agree calling them and talking through your concerns would be a big help.

 

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They cancelled the procedure. I see the hematologist again in a week and he will discuss options and additional test results.  From what they said today it sounds like more is going on then just plain iron deficiency.  Thank you all for the well wishes and for validating my feelings!  I'm hoping that answers are still forthcoming and they find a solution that works soon.

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They cancelled the procedure. I see the hematologist again in a week and he will discuss options and additional test results.  From what they said today it sounds like more is going on then just plain iron deficiency.  Thank you all for the well wishes and for validating my feelings!  I'm hoping that answers are still forthcoming and they find a solution that works soon.

 

See if they'll do a genetic test for thalassemia trait. If not, there can be other indications based on the size of blood cells but the genetic test is best. People with these traits can be anemic but should not take iron.

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See if they'll do a genetic test for thalassemia trait. If not, there can be other indications based on the size of blood cells but the genetic test is best. People with these traits can be anemic but should not take iron.

I've never heard of this so thank you for the information.

 

I had two iron IVs after my c-section. I also had no idea, until reading this thread, that iron reaction is a thing. Sometimes ignorance is bliss!

 

I hope they figure out what's ailing you, anemia is just the worst.

I agree, sometimes it's easier not knowing!

 

I added the books mentioned to my TBR lists and downloaded the Iron Druids 1st book to my kindle!

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  • 2 weeks later...

I thought I'd update.  I saw the hematologist again this morning for follow up.  My iron saturation is now 6%.   :(  Ferrochel (bis-glycinate) just isn't enough to bring my levels up.  I've been given a 6 week reprieve to try Novaferrum liquid iron in combination with active b12 and folate.  If that doesn't do it then I have to just buck up and get the Ferraheme infusion via IV piggyback.  Anyone tried Novaferrum?

 

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