At the beginning of this month, I made an appointment to have some blood work done. It’s been over a year since anyone has tested anything other than my Pro Time (a test to check for blood disorder, excessive clotting problems or excessive bleeding and to monitor the thick/thinness of your blood if you’re on blood thinners like me).
As part of my heart failure diagnosis, I’ve really worked at being a better patient. (Better. Not Perfect). I’ve been on a beta blocker and ace inhibitor for over a year now and I know it’s been a good long minute since I had labs done.
In none of my visits to Anchorage this year (two including an ablation) did I have a full lab workup (at least not that I’m aware of). I have some plans coming up for the end of the year and I really don’t want anything to stand in my way so I willingly opened up a vein (and made future appointments separate from the blood work).
The Good News
After giving three tubes of blood, my kidneys are good (YAY!)
My kidneys were my whole reason for having the blood work done. I’ve heard from others on beta blockers and ace inhibitors that those medications can damage kidneys and I like my kidneys; I’m not a drinker but the idea of ending up with wrecked kidneys all in the name of keeping my heart pumping doesn’t make me happy.
My blood pressure was good too! I know!! I haven’t seen a number like that since I was in my 20s and only slightly crazy with one kid. The doctor also took a quick listen to my heart and didn’t hear any flutter or afib. Score two for Nikki and zero for heart failure! But the good news was short lived (of course).
The Bad News
My Iron and Vitamin D are bad (BOO!). It turns out I have iron deficient anemia and that’s not a nice thing for someone like me to have. As my person put it, “You’re one bad menstrual cycle from needing a blood transfusion.” Okay. That’s bad.
(Hey, did you know that people who are on blood thinners, like me, are more likely to have iron-deficient anemia? You do now. You’re welcome.)
As for the Vitamin D – dismally low was how my doctor put it.
So I took my doctor’s request seriously and I began taking 5000 iu Vitamin D supplement and an iron supplement. Both have been added both to my morning medicine routine.
It All Makes Sense Now
It felt like it took months for me to start to feel better after the ablation in January. Even though the follow-up Echo in February showed no afib and improved heart function, I was still run down and out of energy.
If you think about it and understand a couple of things about the heart, you’ll understand why I didn’t necessarily freak out over not being back to “normal” (let’s pretend you understand what my normal looks like because it’s not what you probably think it is).
The heart is a muscle and it too has a bit of muscle memory. So it would make sense that if your heart gets used to a certain way of working, and you correct it (in my case, with the ablation), it will take some time for it to bounce back. I’m used to that scenario so of course I wasn’t concerned when I didn’t immediately bounce back after the ablation.
Vitamin Deficiencies: The Copycat Artists No One Told You About
I now know why I can’t concentrate or focus on work, why my hands are so friggin cold, why walking groceries from my van to the house makes me short of breath, why my legs twitch all night, why I have DAILY headaches and why my hair has been falling out in handfuls.
Some quick research on my two vitamin deficiencies were eye opening. Did you know that signs of extreme iron deficiency include these physical symptoms?
Extreme Fatigue (check)
Weakness (check)
Pale Skin (shut up and check)
Chest Pain (check)
Headaches (check)
Dizziness or lightheaded (check – my beta blocker and ace inhibitor can also cause this)
Poor Circulation in hands and feet (check)
Rapid heart beat (check)
Hair loss (check. Bet ya didn’t know that did you?)
May lead to heart failure (BIG DAMN CHECK.)
Sounds unpleasant right?
Okay what about Vitamin D deficiency?
Frequent Illnesses
Fatigue or tired (check)
Bone and back pain
Depression and anxiety (check)
Oh yeah AND it turns out that anti-depressants don’t seem to do ANY GOOD when you’re as iron and vitamin D deficient as I am.
Exqueeze Me? Bacon Powder?
The Heart Institute in Anchorage doesn’t talk to anyone but themselves, so it’s not my PCP’s fault blood work wasn’t done sooner. She had been monitoring the Pro Time. I like her, she’s a good doctor, is careful and conscientious. It was her that prompted me to do a device check last spring resulting in the heart failure diagnosis.
It was the EP doctor in Anchorage that prescribed all the medications and responsible for prescription refills on the ace inhibitor and the beta blocker. However, his office was under the impression that the congenital pediatric cardiologist that I saw after the echo and the ablation, was going to take over my care. Unfortunately her office thought that when she suggested I go back to NCH to see about a bi-ventricular pacemaker and CRT that Nationwide Children’s Hospital would be taking over. Forever.
All the while, Nationwide Children’s Hospital has been waiting for the ablation and ECHO reports from the beginning of this year from the Anchorage office and the congenital pediatric cardiologist.
The icing in the cake was learning neither the heart institute or the cardiologist’s office had a signed records release from me – though I distinctly remember filling one out and signing it in February of this year (Actually, I signed two of them).
Is it any wonder I don’t see a doctor on a more regular basis?
My PCP wants to do iron infusions and suggested we get the blessing of a cardiologist first. It wasn’t necessary but being a GOOD DOCTOR she wanted everyone to know and be on the same page. (Insert clueless non-communicating offices here who both basically said, “Not my circus, not my monkey”).
Nationwide Children’s Hospital wouldn’t give any blessing (but didn’t say not to have the iron infusions done) because they hadn’t seen me since… 2011.(?) I can’t blame them and wouldn’t dream of it because they’ve been more forthcoming with information than any medical professional in this state (besides my PCP).
I’m giving the uncommunicative and unconcerned doctors the finger and getting iron pumped into my veins.
I can think of 12 other things I’d rather be doing than this but because I don’t like copycat vitamin deficiencies and their ability to mimic and mock my heart failure diagnosis, I’m doing iron infusions. Five of them. Starting Now.
I’m scared. I don’t like needles. I don’t like any of the possible side effects and I don’t like doing this alone.
And yes, I’m bringing a vomit bucket just in case.
I’m glad you’re foing this. ❤️ I’m not glad that these doctors are not communicating