Hemochromatosis Update

2 years… 11 blood tests… 9 phlebotomies (8 successful and 1 failed)… 3.9 litres of blood removed… endless bruises… countless litres of fluids… and 6 appointments with my hematologist brings us to now.

I am so incredibly thankful and excited to share that my levels are officially in the safe zone. Technically, I swung from one extreme to the other and now sit in the anemic range, but for someone with hemochromatosis, this is actually where my hematologist wants me. She would like to see it a tiny bit lower but she feels really good about where we are at, and honestly… hearing that felt like I could finally exhale.

Being out of the scary zone feels really good. Hearing my doctor say that the hard part is over - and that as long as we continue monitoring things as closely as we have been, I hopefully won’t face any more major or scary complications - lifted a weight I don’t even know how to explain.

The best part of my two-year appointment was being told I can now move to bloodwork and phlebotomies every 6 months instead of every 3. That news alone feels huge for so many reasons.

Phlebotomies take a lot out of me. They are full-day events that start long before the needle ever goes in - preparing my body with ridiculous amounts of fluids and salt, peeing every five minutes (tiny bladder problems), trying to mentally prepare myself, and then spending the rest of the day completely drained afterward. Add in the bruising, the pain, and the few close calls I’ve had with almost hitting the floor, and it’s safe to say my tiny veins were definitely not made for large gauge needles.

And honestly? One of the unexpectedly hard parts of this journey was having to stop getting tattooed. That might sound silly or unimportant to some people, but hearing I can safely do that again feels like getting a little piece of myself back.

This wild ride isn’t over. Hemochromatosis is lifelong, and who knows what the future may hold. But today - in this moment - I am allowing myself to celebrate this huge win. I am beyond thankful for my team of doctors, for science, and for living in a time where managing a lifelong illness is possible.

My tiny veins have definitely enjoyed the break… but number 10 is coming up in a couple of days. And once again, I’ll focus on how incredible it is that something helping save my own life also has the potential to help save someone else’s too.

Thank you for being here 💕