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 08/27/2011

when i joined this support group, i was really bitter. not wanting to socialize, but find some answers. i thought i had lost my mind. one of my major complaints that i was really confused about was pain management. why would any human being subject anyone to such excruciating pain, especially when one is sick.

so, i have been watching conversations in silence. and now i am just really pissed at drs. I keep seeing this emla cream, so i decided to research it. and now i just want to punch every dr that has ever subjected me to an excruciating "procedure" in the mouth, really hard and make them sit there and take it until they are reduced to tears.

not once, in the last 11 yrs, has any dr (and trust me, i have seen a lot) ever offered this cream to me. not during a procedure involving or not involving phlebs. and i have stated adamantly that I DO NOT GET NUMB!!!

you would think that that would be a signal for a med prof to at least offer this cream. if not for prof reasons then for someone with compassion for a really sick person.

so i would like to say thank you. i will be seeking help again, but this time i would like to be armed with some really good info.

hugs to all :=)

NicolaToms 08/28/2011

you go for it girl. We all have to fight for our health it seems. Am right behind you in your battle and you deserve the best. keep going. x

deleted_user 08/28/2011

Hi scared!

Glad you're jumping in:)

I'm sorry that NO one has EVER offered the cream to you. They did offer the little needle 'numbing' stick but I said if I'm gonna get stuck, just stick me ONCE!I. Then I, too, found out about this wonderful product from others in this group! Lucky for me, I found out about it last yr after I had started my phlebs and haven't suffered the torture that others have. I told my Doc and all the nurses to offer it to the other HH and chemo patients. Needle sticks do get old and I would mentally DREAD the thought of going in for another phleb.

Good Luck and hugs back at 'cha {{{{{hugs}}}}}

zzzzzzzz

scaredofdrs 08/28/2011

thanks for the support. no one really knows the horror one goes through until they see the evidence for themselves.

this is terrible. i guess, for a long time, i have been told to "suck it up", "stop being a sissy or crybaby" and this comes from the uncaring med prof who claim to have a heart but in reality are only looking for a paycheck.....i guess i'm just gonna have to learn how to play the game a little better than them......

GageL 08/28/2011

Thanks for speaking up about this. Only my foreign doctors ever even mentioned the possibility of using a lidocaine spray before each phleb. My US doctors are mostly clueless as usual, and quite unconcerned about pain issues, its an American thing, in most other countries in the world where western medicine is practiced, pain is not something that is tolerated or deemed "necessary" for healing. Its the Puritan ethic at work! Stiff upper lip and all. And so shameful.

NicolaToms 08/28/2011

I have never been offered any pain relief for a phleb, im in the uk and thankfully have quite a high pain threshold but all the same it would have been nice to be asked. X

GageL 08/29/2011

I had a phleb in London about 1.5 years ago at a hospital and was offered a small injection of some numbing substance beforehand, also in Buenos Aires and Mexico. Only in the US have the issue of painful phlebs been totally and completely ignored.

deleted_user 08/30/2011

this is a bit off topic in a way, but I thought it was very good advice from my hematologist that I wanted to pass on to people who might not of thought of it. He told me that HH patients who go for weekly treatments or have had them and have scarring on there arms should wear a medic alert bracelet in case you have a medical emergency and are taken to hospital unconscious, your medic alert bracelet will let dr's know that you are not a drug addict you could be mistaken for one with all the scarring, and it could prevent you from getting lifesaving treatment if they are focused on the fact that you could be a drug addict..

NicolaToms 08/30/2011

Thats a good point meechie, my arms are getting scarred with the phlebs. A few weeks ago when I was out with friends someone asked me if I had any stuff on me. Me being a bit daft said what do you mean. Eventually i twigged and told them how any one would want to stick needles in themselves was beyond me. X

GidgetD 08/30/2011

I went for quite a while with no cream or lidocaine shot and my phlebotomist called my Dr after the scaring made the pain worse and my dr. prescribed lidocaine shots before hand and what a difference it made. The lidocaine needle is so small I barely feel it. I would not be able to go back to the way is was, it would be way to painful and I have a lot of years left of big needles. lol

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