Hemochromatosis Support Group

Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.

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Gastrointestinal System
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portals?

deleted_user
deleted_user
i was just curious what are these portals people keep writing about?
deleted_user
deleted_user
portals or ports are placed under your skin to have easy access to your veins for phlibodimies.
deleted_user
deleted_user
My port does not work but about half the time. The last time they went back to my arm and it started but stopped before the bag was filled. Giving blood has been a real problem. Sometimes the nurse tells me to come back next week. One time the hurt me so bad trying to make my port work. I was really upset. Thank God they don't keep trying anymore if it does not work. jerryu81 please let me know how you are doing and if you read this. I'm not a good tech person but want to get better. (smile)
deleted_user
deleted_user
Can you use EMLA cream? It realy, REALLY makes my phlebs tolerable b/c it numbs my arm easily. I just don't know if it's OK with a port (even tho they clean the skin before using the port)
deleted_user
deleted_user
zzzdj - my doctor actually recommended for me to get that cream because I hate when they stick my port....doesn't feel the best so yes it can be used with a port.

The last nurse that accessed my port didn't hurt me that bad and my port is a swimmer (what I call it) because it is not real stationary.
sandrac2000
sandrac2000
My port access area is cleaned and my nurse sprays some stuff that freezes the area. I can still feel it a little bit but it is not that bad. She is great anyway, very gentle and caring. My first port didn't work but 1 time but with this 2nd port that was put in in Sept I have has no problems what so ever. I am close to being deironed my ferritin was 79 week before last. I go this Tuesday for a Phleb and she will check my ferritin then. My Dr. wants me at 50. The I will go on maintenance. My ferritin only dropped 9 points last time so I think this will take a while if it slows down that much.
Sandra
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