Sandi recently posted an article that posited that our bodies lower platelets to protect itself from something. I think that my body lowered my iron to protect me.
In February, I relapsed - count went to 3K with heavy symptoms, so we decided on a quick round of Pred. Counts came up, life was good until....UTI. Cipro for 5 days. Felt better - still had some back pain, but I always do with Pred. I asked the hema if my pain would still be my kidneys, and he ran whatever blood tests they do and said my kidneys were happy campers. If there was no burning and kidneys were good, well, it's probably Pred aches. Meanwhile, my appetite disappeared, despite being on the 10mg of Pred. Two months passed, and exhaustion hit me like a freight train. I chalked it up to the Pred lazies. I was foggie and grumpy and so easily confused, but I chalked that up to needing a B12 shot and not being able to get it (there's a shortage here).
Fast forward to three weeks ago - I'd mentioned that I'd been extremely tired to the hematologist and that I couldn't tolerate the iron pills because, hello, Pred has done a number on me.
So, he ran an iron panel and discovered that it was all bad. Ferritin, transferrin, all those values. Very bad.
Hema started got me an infusion of Ferraheme that day. I was so excited that we had an answer to my exhaustion! The nurses said I'd feel fabulous in 3 weeks - they'd seen patients report extreme improvement. Well that week, I could barely get off the couch, but I figured hey, now my body has all that iron and it's working hard to make new cells.
A week from the first iron, I got a second Ferraheme. I went home that night feeling just - dead tired. Tuesday hit, and I stayed in bed (all the while being so angry at myself for being so lazy
)
Two days after the Ferraheme, at 3:00, I got that special cold that you know is a fever. Took my temp. 99.4. Ok, not really that bad. I laid down and pulled a blanket over me. 15 minutes later, I was colder. Temp. 101.3. Fifteen minutes after that 103.4. My teeth were clacking and my fingers went completely numb and I started crying (so not me!). Called Hubs to come home, I started vomiting and he dragged me off to the hospital.
So, in less than 1 hour, I was in trouble.
Luckily the doctors at the ER knew to take blood cultures right away.
After endless tests, we found out that I had bacteremia from E.Coli - not the hamburger kind, the kind that lives in your gut but is normally not a problem till it finds its way to your blood. And you have no spleen. And you're on Pred. (Sandi, I think this is why you never let them take your spleen, right, this EXACT situation? You are a smart woman!)
That is a long story for telling you this. The iron I got was just the fuel that e.coli needed to overwhelm my system. My body was protecting me by dumping all my iron. I found an excellent article that explains it all if anyone is interested.
I know doctors always test to see why you're low in iron before they infuse you, but in my case, none of those tests showed what was really wrong. So we did the right thing - gave me iron. And fueled that infection! If you have low ferritin, make sure they look for a reason not just bleeding tummies and intestines. Mean little bacteria. Especially if you have no spleen.
So now I'm on the road back, I hope. I spent 4 days on Vancomycin and Merepenum and now 10 days on Cipro (LOL - right where we started). Feeling horrible from all the antibiotics, but I'm so, so grateful for all the great care I got. I'm well aware there might've been a different result in the hands of a less competent team.
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