My Hemochromatosis Journey

Hi everyone!

I debated back and forth whether or not to make one of these, but after a lot of thought I realized I am way in over my head and there is absolutely nothing wrong with asking for some help. As most of you know, I have been really struggling with my health since getting COVID in 2020. Between shortness of breath, heart palpitations, and a lot of pain, the last four years have been pretty miserable. Two weeks ago, my symptoms started to flare up again, so I went back to the ER for what feels like the billionth time. After getting a diagnosis of "heartburn" I decided to give up on the rout and start doctoring solely through my primary care physician. She took a lot of blood and we found that my iron levels were through the roof, but my ferritin levels were very low, so she referred me to hematology. After seeing the hematologist at the Roger Maris Cancer Center this Tuesday, he decided it would be acceptable to test me for hereditary hemochromatosis. However, he stated neither he nor his colleague who has been in the field for over 30 years, have ever seen an iron saturation this high with ferritin that low in either of their careers, so the blood test was sent to Mayo Clinic. Yesterday, we got a "complicated positive" for the disease (meaning all of the symptoms I have been feeling for the last four years have been coming from this blood disease, not POTS or post covid, both of those were misdiagnosed). Normally, for this disease, the solution is to remove blood from the body and give it the opportunity to create new blood that contains less iron, however my ferritin being as low as it is complicates things. If we drain blood, it could lower my ferritin even more, causing anemia. Hemochromatosis is also known for causing heart damage and liver damage if left untreated, so here is to hoping they figure out how they want to treat it soon! It sounds like a referral to Mayo may be in my future. The reason I am asking for financial help is because I recently found out my insurance will not be covering these tests, as it did not renew as it was supposed to automatically in September. I will be getting insurance through Sanford Ambulance starting in February, but my insurance will not cover everything they are needing to test. I have an ultrasound of my liver on Monday of next week to make sure there has not been any permanent damage done thus far, as well as a cardiology appointment next Thursday to be certain my heart is not sustaining damage. I also have to meet with the hematologist again next Wednesday to discuss our options and potential treatment or referral plans going forward. Meaning, I am also going to miss some work time for appointments going forward. I also was told I cannot drive until symptoms resolve due to the immense dizziness this disease is causing, which for those of you who know how bad of a driver I am, you may be relieved! All jokes aside, I decided to suck up my pride and ask my village for help. No one fights alone. If you cannot donate and you took the time to read this, I ask that you share it to your page if you feel so inclined. I am thankful for each of you that have been following my story thus far and I can't wait to share my updates with you all as I kick this diseases butt!

All my love,

Katie