Holly++ and others..hope I can join you?

baze2

Thank you for your kind post. I am hopefully going to join this board. Although desperately want a baby..I want my husband more! He is my life line. I almost lost him on Thursday due to cardiac problems from a genetic disease undiagnosed.

Holly thank your for posting that you also have hemochromatosis...chris' went into cardiac arrest from this disease..we are now facing: Cirrhosis of the liver, congesitve heart failure, cardiac arrythmia, arthiritis, and infertility due to the primary condition...IF being the furtherest from our minds. He can no longer take the testosterone or other hormones to over come his Iron excess. I don't care. I just want my best friend with me forever. I think that is what this board is about right? Can I join?

 

 

 

 

hollymichael

Baze, of course you can join us, but I wish you didn't have to be here.

I am so sorry about your DH. Do they have him stabilized now? It is good that he had a dr. who thought to look for hemo. Most don't think to look for it. I remember when he was having the pituitary problems a couple years ago. If I remember right, they thought he had a tumor. So, that was probably related to the hemo, right?

Have they started the phlebotomies yet? I don't know too much about what happens when the iron overload is already in the organs. (I was really lucky and had a dr. diagnose me early while my levels were high, but not affecting my organs yet). Do they think that some of the damage will be reversible once they get all the excess iron out of him?

I have never participated much, but I know there are some good hemochromatosis forums out there. Let me know if you want me to try to find one for you.

Please know that I am thinking of you both. Please keep us posted.