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.
Monday I receive my #5 phlebotomy. The first one was awful. The nurse didn't get a good stick and he ended up doing a lot of digging. If they all were like that then it would be even harder for me to keep up with the treatment. The last few haven't been too bad. I always drink 100oz or more of water the day before and the day of. I am a pretty healthy eater as it is with very minimal fatty food. I exercise regular but not on the days of phlebotomies. I regularly come close to fainting each time. A few times my BP has dropped super low while standing (80/60 something like that) and they make me stay a while before I "pass". Last time I went I brought myself two types of candies that I love but literally never eat them. I told myself that if I had to endure what I describe as "the straw" being rammed into my veins then I needed to find something that gave me immediate gratification from it. I only eat these candies during the actual phlebotomy. It seemed to help last time. I just didn't know if anyone had any other tips or advice such as arm placement, distraction methods, anything really that helps!
My first Phleb they had me sitting in a chair and I nearly passed out and they had to give me fluids in my other arm.
Now I always tell them about this, and they now lay me down and I no longer have any issues.
I am on maintenance and think that I can tell when I need to have a phleb as I start getting pains in my feet and burning sensations in my right arm as if I have burnt my forearm.
HH is a very strange condition and is not taken seriously as you don't look ill, I still get asked if I have just come back from holiday due to my sun tanned appearance.
I did keep a record of my phlebs prior to being de-ironed and that is on this site if you search my name, it may help you to see how I was affected.
Take care
Steve
It may help you but no two people seem to be the same.
Regards
Steve
She alos took no notice when I told her that I was known as a good bleeder and she insisted in just holding the needle in my arm rather than tapeing it down.
She was holding it and turned to get at test file to fill and of course the needle came out of my arm with blood pouring out... she said dont look.. of course that made me look and a little blood goes a long way , it was evertrywhere ove me the bed and the floor.
I asked for a differant nurse for future phelbs and had no further trouble.
I had to give a sample of blood last week and asked teh nurse if my arms and veins are getting scarred and she said that they still look ok and she could not believ how many time that I had had phlebs so my arms obviously heal ok and I must be lucky!!
So I would ask for a different nurse, it may be her technique that is at fault.
I did keep a running commentary on my plebs on here if you searc fo my name you should find it I think it was entitled "First Pleb today"
Take care
Steve
Thanks for all your feedback and advice! It's so nice to read about other people's experiences.
Sorry for the delay in responding.
Yes I am on Maintenance and currently have 4 sessions a year, although I dot think that is enough.
I had my latest session on Monday this week and am now feeling the benefits, the pains in my figer joints are a lot less severe and the burning sensations in my arms and toes has all but gone. Also I feel sharper in my thinking again.
Ask them about laying you down while you give blood and also if a saline drip may help, thats how they did my first few sessions.
Let me know how you are getting on, its good to talk with other people who have this.
I am lucky in that my wife is very supportive and sympathetic about my phlebs and the condition, mind you we found that she is a carrier and one of my children my daughter also has full blown HH and my son is a carrier who may develop it later, as he has a lot of my symptoms so the doctors are keeping an eye on him.
Take care and good luck with the Phlebs.
Regards
Steve