Its been a little while since I have reported on my journey with the hereditary disease. One of the reasons is because of clear and quick progression of its symptoms effecting my ability to function like I had previously. With that said, here is my account of recent events.
I went to the new doctor that provided hope of having someone in the medical field that demonstrated concern, willingness and cause to help me with several issues I am experiencing. I went to see Dr. Miller initially on March 21st of this year. In the short time that has elapsed, I know more about whats happening to me than what all the other physicians were able to communicatein all their office visits combined.
He began with reviewing my labs and stating he was not totally convinced that I in fact had developed full blown Hemochromatosis (HFE). He went on and explained that just because I inherited the genes for it, doesn’t mean I have developed the actual disease, only 2% of the population actually develops the disease. To be sure it was HFE, he wanted to double check that it is not Rheumatoid Arthritis as the two can mimick each other in some ways such as joint pain, fatigue and morning stiffness. When he reviewed my labs he noted that I had been tested for the RA Factor which was positive and indicated some level of inflammation in my joints, but the Sed Rate test to determine actual RA was never performed. He ordered the lab along with an updated Ferritin level and Cardio CRP, and B-12 tests. A new appointment was scheduled for two weeks later. Before leaving I was administered a B-12 shot to help with the fatigue and provided a prescription for “Mobic” for the arthritis like pain.
The next contact with Dr. Miller was by phone. His nurse passed along this message on his behalf. Unfortunately the test results confirmed Hemochromatosis has developed and there is no evidence of RA. Additionally all my inflammation lab results are elevated including the Ferritin being up almost a hundred points. A phelbotomy has to be done dispite my borderline anemia hemocrit number of 37%. He provided the documentation for a Handicap vehicle window marker and a blood center order for 6 monthly phelbotomy draws and a lowered limitation preventing draws with a hemocrit % lower than 30%.
I felt more confident in the diagnosis, because to my knowledge his extra labs and thoroughness made sure the Hemochromatosis diagnosis was correct. He also gave it the benefit of the doubt before just accepting what his collegues had said. While I wish it was something that had available and successful treatments, this is what I am left with to deal and face in the time to come. I was very disheartened to learn that when two of the previous doctors said today is my best day each and every day going forward, they were probably the honest truth I did’nt want to hear or accept. I take comfort in knowing I just didnt accept it, I fought it in the effort to make sure the diagnosis was factual; first seeking other answers before giving in to the darker future painted for me by the physicians.
I went and had my second attempt at the phelbotomony done. Successfully this time and my hemocrit was up to 39% from the 37 good news I guess. Expectant to feel a little less fatigued within a couple of days of the draw, I have been disappointed. Instead of feeling better, I feel worse, more tired and fuzzy headed than usual. Since my initial diagnosis in December my symptoms continue to increase at an alarming rate. The amount of pain in my hands and hips and sporadic body locations is rising significantly. The mobic is not very effective. According to Dr. Miller and the other specialist there is nothing they can do that is not currently being done. On a day to day basis, its hard for me to plan things as I never know how my day is going to be. Labeling my days as good, bad and existing, lately the odds have not been in favor of a good day. I continue to try my best to push forward and not just laze around all the time, but doing so is getting harder and harder to do.
I am told that after several phelbotomonies are completed the ferritin levels will come down and I will feel better. But I am doubting it based on how I feel after the first one. I am trying to make plans to lighten my life load “again”. Making daily life simpler, less complicated and hopefully more enjoyable with my complicated health condition. The thing that concerns me most is how quickly the pain is increasing and how the increasing fatigue is taking over my life. I feel dispondent for my family, it cant be easy for them. And my husband is having to do so many things now that I have always taken care of previously, it makes me sad. The depressive and difficult mindset I have lately in trying to cope with the downward spiral of pain and fatigue is hard to fight. It is getting harder to pretend everything is okay when clearly it is not. I am not able to cope with the pain well, my tolerance is either very low or time is erroding my ability to deal with it. Which is situation factual I do not know. My mind has good days and bad. The bad days mentally is when things are fuzzy, I cannot think clearly enough to manage important affairs, but yet I am functional enough to take care of daily routines such as feeding the grandbaby and getting dressed, and doing other piddling things So I am not incapacitated mentally, just challenged on some days with things that require me to think financially or remember where I put my keys or what time it is and things like that.
This is my update, tomorrow is another day…where this is all going I dont know, but I am very comforted to know that my Lord and Savior is walking this path with me and before me. I am comforted to have a wonderfully devoted husband and mother that I just cannot do without at this time in my life. I pray for healing and believe it will take place at anytime, but until then I hope my journey in writing will help someone else on this same journey. I would love to hear from you and how this helps you and how your journey may help me.
I want to mention that I joined a Facebook group that is closed (and honors request memberships only), the members are very knowledgable and has been supportive and helpful. It is dedicated to individuals diagnosed with Hemochromatosis. If you have this disorder, here is the link… https://www.facebook.com/groups/160715070784986/?fref=nf
Until another update impresses upon me to write….
God Bless you,