It is very treatable IF you have functioning kidneys. Dialysis for ESRD does NOT filter the iron. My sister has been blessed to see Dr Herbert Bonkovsky - one is only a handful of specialists on PCT. He is located in Winston- Salem NC. Phlebotomy is a challenge with ESRD. My sisters hands are indescribable. They are severely infected from the blisters and when she recently bumped her wrist and the skin peeled back. She will eventually lose all fingernails. She is being treated with meds to help reduce iron through bowels rather than kidneys. Basically, her hope is in getting a kidney transplant - until then, it is a daily struggle with pain and wound management. She is currently in the hospital (for over 2 weeks )on IV antibiotics to try to get the infection under control again. Pain is being managed with Tylenol and tramadol and on dialysis days which horrible pain days ( dialysis exacerbates the pain) dilaudid via IV is the only thing that helps. PCT is rare enough without being complicated with ESRD. I have wondered if there are even 10 people with both.

They are trying through my dialysis treatments. They are throwing away part of the blood at the end. The numbers have gone down, but so small it’s not noticeable.

They have done 10 treatments like that so far, and my numbers only gone down 10 points. It’s still above 900.

Just today, on my way into town, a blister broke out that covered my entire thumb. It’s hard to describe the pain.