Post Date 8/22/10 9:33 am
Topic: Iron Deficiency Anemia- Infusions? Experiences? Advice? (x-post)
I know, Debbie Downer here. When I was actively losing weight, I saw nothing but rainbows and puppy dogs m'self, but after a couple years, it seems the health issues come out of hiding en masse.
I used to read about that stuff and think, "Well, that stupid slob didn't take their vitamins. Duh."
I have taken my supplements religiously. More than most people, and following all the rules. I have been accountable every day, balanced my diet, and now I am tanking once again.
This time, it's anemia. I started seeing a cardiologist in April because I kept "hitting the wall" when I exercise-- it was suddenly getting harder, and wearing me out. He discovered a new murmur, but nothing major.
In May, I had my hormones tested, because I was so emotionally labile and weepy I wasn't making any sense. We discovered I had three times the amount of estrogen in my system of a normal woman my age, so I started taking HRT. And it was through these labs that we also discovered I am anemic. Which explains why I just haven't been able to get my head up off the floor, bootstrapping or not.
My Ferritin level is a 9. (Normal is 13-50.) Your ferritin is your back-up or storage iron. Once you start depleting that, you're hosed. My red blood calls (normal is 3.8-5.1) went from a 4.3 to 2.9. My iron saturation (nromal is 15-55) is at a freakin' 4.
So my PCP tells me to take some more Carbonyl. Mmmmmkay-- but of course it did not a damn thing. That's the thing with the iron-- you either absorb it orally or you don't. Turns out I don't, and had been living off the stored stuff for three years. So we toussle a bit and he sends me t o a hematologist/oncologist. I watched my labs tank over time, but no one would do anything because the weren't officially *low.*
In 2008, my Ferritin (stored iron) was 149 . Again, today-- it's a 9. NINE. Now, I am *officially* LOW.
I go to the hematologist, and he says, "No, that's NOT normal, that's hideous. We can give you some better iron, if you think that will help." By better iron, I know he means heme iron, which costs me $70 a month, and I have figured out by now will not do squatola to raise iron scores. So I say, "Let's skip the formalities and talk infusion." And he says, "Bigger issue is why you're losing the iron, but yep, I agree, you need the infusion, and you need it now. Like, today. Like, let's go now."
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The infusion lab is also the chemo lab. You immediately are treated very very kindly ("Care for a drink? A cookie?") because the people around you are fighting for their lives. This is humbling. They even offer you a special parking spot, but I refused mine-- as long as I am able-bodied, I am hoofin' it!
I was lucky-- I am getting Venofer. Venofer is an iron sucrose IV. The first infusion lasts about an hour and they watch you very closely for anaphylaxis. I felt fine. I am scheduled for nine more shorter infusions-- each lasting a half hour. (I have now had three so far.) The doc tells me we will retest in a while, but there's a very good chance I will be coming to this blood lab three times a week, cyclically, for the rest of my life.
I had the RNY to get healthy. Truly. And this ain't it. So yep, while I appreciate the smaller size, these sicknesses make me angry. And yes, I am thrilled to have insurance, but the $30 co-pay each time I walk in a doctor's door (and that's 18 times this month) is kicking my ass up and down a street. And while I am so very glad not to be one of the chemo people, it sure is a freakin' bummer to literally spend my entire summer in medical and surgical care, as a direct result of an electove surgery I had on a perfectly functional gastointestinal system.
My friend said, "But hey, you
look great." I wanted to kick her ass on the spot. If I end up a gorgeous corpse, I am going to be so effin' pissed.
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For those of you who have gone the infusion route:
1) Did you get the level back up and maintain with oral iron, or are you back in for infusions periodically?
2) You get yours in big doses, or smaller ones spaced days apart?
3) Any side effects? (I feel like I wa**** by a bus the day after, just general malaise.)
4) I am noticing a little weight gain-- did you have that as well? How much? Did it come back off after you stopped getting the IV fluids? (I know, it's 30% sucrose and a bag of fluids, so water gain is unavoidable. I don't want to eat less, though, because I feel so weak as it is. Should I drop back my calories?)
5) How low were your numbers, and did you continue to exercise? Any changes in your exercise routine?
Thanks for any advice/stories you can share.
-S.
"Oh sweet and sour Jesus, that is GOOD!" - Stephen Colbert Lap RNY 7/07-- Lap Gallbladder 5/08--
Emergency Bowel Repair 6/08 -Dr. Meilahn, Temple U. Upper and Lower Bleph/Lower Face Lift
12/08
Fraxel Repair 2/09-- Lower Bleph Re-Do 5/09 -Dr. Pontell, Media PA Mastopexy/Massive
Brachioplasty/ Extended Abdominoplasty (plus Mons Lift and Upper Leg lift) / Hernia Repair
6/24/09 ---Butt Lift and Lateral Thighplasty Scheduled 7/6/10 - Dr. Ivor Kaplan VA Beach
Total Cost: $33,500 Start wt: 368 RNY wt: 300 Goal wt: 150 Current wt: 148.2 BMI: 24.7