Wednesday, June 3, 2015

Infused (again)

I posted last week about feeling so fatigued and it was time to get my blood levels checked.  Yep, I was right, no ferritin left in my body and my hemoglobin was dropping as a result. 

And, so, I got right in there for an infusion.  Still using the Ferrlecit and still only doing one infusion rather than two.  I think for me mentally, doing one infusion is so much easier.  With the Venofer, I was doing five infusions every four months or so and, so one infusion every three months seems really nice.

The infusion itself went smoothly.  I still get Benadryl because I have reacted before and so I just rested and snoozed the entire time.  I think the Ferrlecit infusion ends up taking about an hour and a half.  They do the Benadryl and then the Ferrlecit and then I have to wait a half hour while they monitor me. 

That night, I was exhausted which I usually chalk up to the Benadryl.  I slept for hours that day. 

The next day, I just felt sort of icky like my body was fighting something off and I ended up feeling that way for the next couple days.  I haven't had that with the Ferrlecit before so I wonder if it is because I waited too long.  It almost seems like when I have no ferritin, my body fights off the new iron.

So, next time, I'll try and catch my levels when they are down around 10 or so.  I do think having a little Ferritin in my body for the infusion helps with the side effects.

Tuesday, May 26, 2015

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.

Thursday, May 21, 2015

Precautions Recommended for IV Iron

As I draw near to getting another infusion, I am looking up the different types of iron.  I seem to be having a better time of it with the Ferrlecit so I will stick with it as long as my hematologist is willing to give it to me.

I found this article today:

New Precautions Recommended for IV Iron Supplements

Although nearly two years old, I still found it interesting.  Dextran was the worst iron I've had.  They started with Dextran they said because it is cheapest.  However, it also seems to have the more risk for serious reaction.  Indeed, I had a horrible experience with it during my second or third round of infusions.  That seems to be the only iron of which they require a test dose. 

I think, all in all, this is a good article to read.  I don't think it should panic anybody but it is good to remember that severe allergic reactions don't always happen during the first or second time getting infusions.  You don't want to take your infusion for granted and you want to stay carefully monitored.

Wednesday, March 18, 2015

Ferrlecit - My Favorite Iron

Is it possible to have a favorite iron?  Seems strange but, yes, I do have a favorite iron now.

Posted last time about how exhausted I was and I was exhausted.  When my ferritin levels get low, I just get so tired and try to fit in naps when I can.  I'm a pretty busy mom and just don't have time for that level of exhaustion.  Along with the exhaustion comes such guilt.  I feel so guilty for needing naps or just not being able to do it all. 

So, had my levels tested in February.  My hemoglobin was fine.  I think it was in the eleven range which is great for me.  My ferritin however was below 10.

Just a little side note:  If you are tired and suspect anemia, always ask for your ferritin numbers.  Even if your hemoglobin is normal, a really low ferritin score indicates that there is a problem and you will be anemic soon.  Often, exhaustion sets in once your ferritin is low.  You can avoid all the additional problem with anemia if you treat the low ferritin.  Iron pills will usually take care of this.  I've taken iron for so long though that it really hurts my stomach and so now I have infusions.

I had my last infusion in November.  Wrote about that experience here:

My Infusion with Ferrlecit

Ended up having only one infusion because of traveling and it worked wonderfully without all the usual side effects. 

The only part I didn't like that last time was that they 'pushed' it meaning they injected it into the vein over the course of several minutes.  I could feel it and didn't care for that feeling.  However, it was still preferable to side effects.  My blood pressure did drop but went back up shortly thereafter.

So, this time, same deal.  Ferrlecit.  I told the doctor I preferred this iron and she said she did too.  The nurses told me that they were no longer 'pushing' it into the vein now.  They found there was a higher risk of complications so they switched it over to a 20-minute drip. 

Because I've reacted before to iron, they started me with Benadryl in my IV.  I suspect this took about 20 minutes but the drug always makes me groggy so not too sure.  They then switched the bag.  No problems with it whatsoever.  Afterward, they added a bag of fluids.  Not sure why.  They don't usually do that but if it helps the process somehow, I'm fine with it.  My blood pressure stayed in the normal range this time and I went home about an hour and a half after I had arrived.

The only side effect I had was exhaustion.  My exhaustion after my initial infusions is even more pronounced than my exhaustion just before.  Not sure why this is but for four days I was so tired.  For this reason, I like to keep my infusions scheduled for Thursdays or Fridays.  Easier to rest on weekends. 

I told my doctor I'd be just fine having one infusion every three months.  Before this, I was having five every three to four months so she agreed that rather than do two, I could stick with one.  This makes it so much easier for me. 

It's been about three weeks now and I can tell my energy is up again.   I have to say Ferrlecit is the easiest iron I've had so far.  I know everybody is different and everybody reacts differently, but I'll continue with this iron until we figure out how to prevent my iron from dropping in the first place.

If you've had experiences with Ferrlecit, I'd love to hear from you.   If you are just going through infusions or about to go through one, I'd love to hear from you as well.  Take care!

Tuesday, February 3, 2015


I can tell when I just start feeling utterly exhausted that an infusion is likely in my near future.  Sometimes my ferritin levels are borderline (around 10) and we put it off for a month.

Usually when my ferritin levels get to about 15 or below, I find it harder and harder to get through a day without napping.  Many days I don't have time to nap and find my brain just feels a bit foggy and have no energy to do much.

Will be scheduling a blood draw in the next week or soon and we will see what comes back.

Monday, January 5, 2015

Some Tips for Your First Iron Infusion

I've been sharing my infusion stories now for a few years.  I've gotten quite a few messages mostly from women nervous about getting their first infusion. 

I get it.  I remember being a bit nervous and having no idea what to expect.  You can read about my first iron infusion experience here:  Intravenous Iron Infusion and Me

Since my first infusion just over three years ago, I've had a number of rounds.  I'd like to pass along a few tips to hopefully make the experience a bit easier for you.

  1. Drink plenty of water beforehand.  I've found it is much easier for them to get the IV in when you are hydrated.  
  2. Find a chair close to the restroom.  Yes, this goes back to tip #1.  You can wheel the IV into the restroom and I find it is just easier to be somewhere in the vicinity.
  3. Bring a pillow.  You can bring your own blanket but often, if you ask, they'll bring you a blanket.  If you are having Benadryl, it is just easier to nap with a pillow.
  4. Dress in layers.  Even if it is quite warm outside, they keep those rooms chilly to help keep down the spread of germs and illness.  Even on warm days, I'll bring in a sweatshirt.  
  5. Bring snacks and water.  I've had infusions that have lasted for up to four hours.  Having a little something to eat helps.
  6. Bring something do to.  Yes, you may end up napping the entire time but, other times, I've found having my notebook computer or a book helps pass the time.
  7. I don't know if this is just me but I find that once they take the IV out and bandage my hand, the longer I leave that bandage on, the less likely I am to bruise.  I usually leave it on an hour.  Maybe it has been a fluke that the times I've taken it off quickly, I've had bruising but I figure it doesn't hurt to keep it in place.
 Have you had an infusion?  Would you like to add any tips?   I'd love to hear from you.

Sunday, January 4, 2015

Three Years of Iron Infusions!

Just over three years ago, I had my first iron infusion. 

Backing up a little.  I had ended up in the Emergency Room.  My heart had been acting up and, that night, something just felt off so my husband decided to take me to the hospital.

I told them I was pretty anemic.  I've struggled with Iron Deficiency Anemia since having my daughter.  They did some bloodwork, came back and said, "You're anemic."  Yep, I knew that.  I was told to see a hematologist and so I made an appointment.

So glad I did.  For years, doctors had been trying different iron supplements out on me.  We'd played with my diet.  Things would work for a little while but then I'd be anemic again.  My hemoglobin went down to four more than once.  That's mighty low and I've talked to women who've had transfusions at those levels. 

I had a doctor who had suggested seeing a hematologist but then I moved across the country and my new doctors wanted to start from square one.  Had I known then what I know now, I just would have scheduled an appointment with the hematologist from the get go.  I think I just thought they'd tell me I was anemic and we'd be right back where I was.

How wrong I was.  I saw the hematologist and she discussed infusions with me.  Had my blood tested and they wanted to get me right in. 

I've shared that story here:

Intravenous Iron Infusion and Me

Three years later, I couldn't even tell you how many rounds of infusions I've had.  They know me at the Cancer Center.  I'd like to find a solution to all of this and remain hopeful that we will.  In the meantime, I'm starting this blog.

Through sharing my stories online, I've come to realize that many other women (and men) get iron infusions and they just want to know they are not alone.  Many people go searching for iron infusion experiences before they begin the process.  I hope my posts help.  I know that if you are going through this as well, I'd love to hear from you.