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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scaredofdrs 09/20/2011

i have an appt at 2pm today with a new hemo. i need as much pray as i can get. i will let you know what happens.

NicolaToms 09/20/2011

I have every thing crossed for you. I hope you finally get the help you need. Big hugs. Nic. X X

deleted_user 09/20/2011

I hope all went well for you today .

NicolaToms 09/21/2011

Hi Karen,
How did you get on? X

deleted_user 09/21/2011

Good luck (and don't be scared, they're just people with white coats :))

scaredofdrs 09/21/2011

@nic...i asked if there was any options for ppl like me who doesn't have insurance or income, they said yes. but i have multiple issues....so once again, already, it's turning into a cluster f**k. i don't get it....how do these dr's get away with what they get away with?????????????????

and thanks everybody for the support! they wouldn't give me any info "they're waiting for my tests results" wtf!!!!!

NicolaToms 09/21/2011

What tests did they do this time? I hope they have booked you another appointment. X

scaredofdrs 09/22/2011

@nic...yes, i have another appt and depending on my results, the doc is talking pic (sp) line. the cyst on my kidney is 10 cm and should have been taken care of a long time ago (duh).

they wouldn't touch the cyst when i had insurance and now they're gonna have to settle for whatever government agency agrees to pay whoever accepts the assignment of taking care of the cyst (idiots)

on the upside, this new doc is very friendly and seems willing to listen, so, if the lord's willing, maybe everything is heading in the right direction....thanks everybody!!

NicolaToms 09/23/2011

Glad you have a nice Doctor, do hope he will follow it through and give you the treatment you need. You will get there| X

scaredofdrs 09/23/2011

right now i feel like my chest is going to explode from the pain. i have chronic pain in upper right quad, that started immediately after my galbladder surger, and it will not go away. which by the way, lead to my HH diagnosis.

what i don't get is why do they keep ignoring the pain....don't they understand that it is driving me crazy and destroying my life? my next appt is not until the 30th....ugh :-(

deleted_user 09/23/2011

Scared, this is so awful! Can't you get to an emergency room? I don't know where you are and how it works there (I'm in the Netherlands), but surely they can't leave you in so much pain???

scaredofdrs 09/23/2011

thnx andrea, i am in alabama and am ashamed to say that the er here really sucks....i have sat out in the er puking my guts up for 12 hrs while they took a person who looked perfectly healthy and not in pain or def not throwing up before me.

and to those who asked, yes, the dr ordered the following tests, does this sound right?: cbc/diff, cmp, ferritin, iron, ldh, magnesium, sedimentation rate (esr), spe read, spe tech, tibc, vit b12 lev.. but i won't know the results until the 30th :-/

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