I am not alone

Since my last entry, I had emailed a hemochromatosis society to see if they had any support groups. No answer. I had emailed a specialist doing research related to hemochromatosis at a university. No answer. After 13 years of receiving treatment for this disease without ever meeting anyone else with it I wasn't related to, I had already been feeling a little lonely and misunderstood. I mean, how many people do you meet who even know what hemochromatosis is?? Then, just yesterday, I'm complaining about it to my current hemotologist of 8 years and he tells me that there is a guy in the chemo room getting a phlebotomy as we speak and did I want to meet him? Well of course I did! So he introduces me to a very nice man who had many of the same issues with phlebotomies that I did. And suddenly I didn't feel so alone.

I had been giving myself a hard time about my tolerance of phlebotomies - or intolerance as the case actually is. Over the years, I have on occasion passed out during them or even thrown up after them. After 12 years of various - and often unexpected - phlebotomy results I wondered why I had such a hard time of it. After all, it's just giving blood right? Then I met Paul who also had to take IV fluids with his phlebotomy to feel well. I wonder if there is some reason that we struggle with it?

In the past few years, I have really struggled with collapsed and scarrred veins. The first stick rarely works. The phlebotomist ends up "digging around" quite a bit looking for my veins which love to roll away from a needle these days. When it doesn't work in my arm, they usually find something in the back of my hand that works. I'm always happy when they use the smaller gauge light blue butterfly and connect that with the tubing. It takes a little longer to get a unit out, but it's easier on the veins. I'm just not ready to get a port yet, so I don't complain!

I've also found that gravity can have a big affect on me during a phlebotomy. Before I discovered the relief of IV fluids, I found it really helped to be horizontal during the blood-letting. It's logical that loss of blood when you're sitting is going to leave the uppermost part of your body (like your head). Even sitting with my feet up can help.

Oh - and here's an interesting tidbit I found while surfing the internet. They are actually researching drugs that might remove iron from the body. Novartis (www.novartisclinicaltrials.com) is conducting a study to find out how safe the use of ICL670, Exjade® (deferasirox) tablet is and if side effects occur when it is given to participants to remove the excess iron that has built up in participants with Hereditary Hemochromatosis. I'm going to ask my doctor about it. These days, I might be willing to risk side effects to further this kind of pioneering work. Kudos to whoever decided to research drug therapy for this disease!!