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.
Iam in maintenance mode these days and had wrist surgery aug 29.
I developed a large clot in the other arm shortly after surgery and iam currently on blood thinners.
Fortunaly no embolisms this time or as of yet :)
Does anyone else have issues with clotting and hemochromatosis?
Since this has happened both times i had surgery the emerg doc suspect this is more then just chance.
I developed a large clot in the other arm shortly after surgery and iam currently on blood thinners.
Fortunaly no embolisms this time or as of yet :)
Does anyone else have issues with clotting and hemochromatosis?
Since this has happened both times i had surgery the emerg doc suspect this is more then just chance.
How long have you been in maintenance?
HH blood is very thick. You didn't have an issue when you were phlebbing? You were fortunate. Because I have bad veins, I had to have two ports and a PICC inserted various times to access the blood. The ports had to be removed because they would clog even though I was taking Coumadin, blood thinner. Didn't help. I had a lot of problems with the thick blood.
I've been in maintenance since 2003 and have been taking Red Yeast Rice capules (1) and fish oil capsules (2) to keep my blood from clotting. Seems to be working for me.
JMHO
No major issues except it took about 45 min to drain the blood tell about the last two i had which where faster.
Liver enlarged and somewhat fatty but i otherwise dont seem to have any major damage.
I got the rarest h63d both genes and both times i had surgery i developed a clot.
Last time it also caused a embolism and i got lucky it didn't mange to kill me.
This time the clot runs from the wrist past my biceps but fortunately not a deep vain and hasn't caused a embolism yet.
I still have to get the other wrist done but this is clearly going to complicate things.