Hemochromatosis: One Year Later
This week marks one year since I was diagnosed with Hemochromatosis. Hemochromatosis is when your body absorbs too much Iron. Left untreated, it can cause major health issues like Liver failure and cancer. The treatment for this is a phlebotomy, or blood donation, of 500ML on a regular basis.
My year started out really rough, if you read my past blog, you know. It is really is incredible to look back and realize how much more you've grown. It's been a process but I've mastered a system and schedule that allows me to handle the phlebotomy with minimal anxiety or pain. It has been a lot of work but that consistency has paid off!
After a few months of weekly phlebotomies, my Hemoglobin couldn't keep up, I have to be at a certain level to give blood. So, I dropped down to every two weeks and it was working out well but taking forever! At a monthly meeting with my Doctor, she stressed the need to get back to weekly phlebotomies. I was ok with that but expressed concern about my Hemoglobin and after a little convincing, she decided to lower my cut off by 2 points. That would make the difference.
Since then I have been going weekly and even having 5 phlebotomies in one month. (That's over a gallon of blood!) It has been rough and I have been worn out, but I am trying to get my levels back to normal as quick as possible. Slowly but surely, I have made progress.
Here we are today, one year later and I have cut my ferritin (iron) level in half! That means I will have about 7-8 more months of weekly phlebotomies before I can begin 'maintenance mode'. More importantly, my needle phobia has also subsided substantially! I still use numbing cream to help me out but I am much less stressed about needles. My anxiety about it all has improved too, I think it has to do with my preparation and the systems that I have in place. Not to say that I don't have low points or times I am overwhelmed by it all, because it is still hard.
What's been most encouraging is all of you that have supported me, reached out, and learned more about hemochromatosis! It means a lot to me and it has helped me get through this journey, to make all the positive, progress I have. THANK YOU!