Update: My Hemochromatosis Journey
It's been 7 months since my last update, so I thought I'd fill you in on what's been happening with my Hemochromatosis journey.
Just to refresh your memory, Hemochromatosis is a genetic blood condition that makes my body absorb too much Iron. What's wrong with that? It can cause organ damage, Diabetes, Cancer, and Arthritis. Nothing good. To get the Iron out of my body, I go in for phlebotomies, which is a fancy word for blood donations.
Since October my blood counts have supported 1 to 2 phlebotomies per month. I have to be at a certain level, in order not to wreck my immune system. My Iron counts have steadily gone down and we haven't seen spikes in Iron absorption, so that's good.
In April of 2017, my Doctor began to get concerned about my Iron levels and how slow they were decreasing. I mentioned to my Doctor that my Hemoglobin levels only allow me to do phlebotomies twice per month.
So she decided to lower that cut off one more point and told me I have to do phlebotomies every week, no matter what!*
May quickly arrived and I was nervous about the new schedule. Although, my Hemoglobin had never been below 10 at my other visits, so I knew it was going to happen more often than not. Week after week, I was above the cut off limit and did my phlebotomies. I set a new record for myself, 4 phlebotomies in 5 weeks: 2,000 ML of blood given! That's over a half Gallon of blood!
When May 30th arrived, I was hoping to break another record of mine, but it didn't happen!* My hemoglobin was only .6 under, so I was very close to being able to have a phlebotomy. I'll still go back next week and work until then, to boost my counts!
We also tested my Iron levels in the middle of the month and I am down to 2,905! That's a drop of 1,335 in less than a year. Good progress but still dangerously high. The normal amount of Iron in a body is less than 50! We'll be testing my Iron levels next week to see where we are at after this busy month!
At this pace, I have 19 more months of treatments before I can graduate to "maintenance mode", where I only have to go in 1 time every 3 months.
Thanks for joining me on this journey, your support means so much!