Hey all I have not written in ages but read post occasionally. I have never felt “educated” enough to answer post but I pray for you all.
Dad is doing great. I want him to go see Dr. List in Tampa so he can reveiw his file so it may help others. he recently went 11 weeks without tx. His hbg count has been unusal lately. It goes up for no reason…Why do we question miracles?? I hesitated whether or not to write but I want you all to know that my
Dad has managed to live with this disease. He still takes weekly procrit shots. The only other meds he is on is an occasional steroid and antibiotic for lung difficulties. His skin is badly bruised and is easily torn. He still has night sweats but lives with them. We have almost lost him twice in the last six years.
Have you all read the interesting article about male blood verus female blood? Seems male blood is better for our lungs.
Dad needs to go on exjade but hemo is not pushing it. Last ferritin level was around 3000.
Just wanted to share some great news. Tommorrow will be week 7 with no tx for Dad. Today we hung bead board in a house with are remodeling. He said he feels great.
Take care.
Bec
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