Well, I went the whole month of March without blogging about hemochromatosis, more specifically, my wife’s hereditary hemochromatosis or HH. However, March brought good news on the HH front: The blood-letting has begun!

(BTW, I trust people “got” that the image which accompanied my February post on phlebotomy was the barber’s chair from Sweeney Todd.)

No fancy graphics this time, but I am hoping to capture video of what happens when the phlebotomist draws Chey’s blood, so read on. Early in March a hematologist prescribed a course of 4 weekly blood draws (part of the delay was the fact that Chey collapsed on the way to her first appointment with this doctor).

At this point, 2 of the 4 have been done. We don’t yet know the effect on her iron levels, but I’m guessing there is still a long way to go. Why? Because the phlebotomist has to brace herself against the chair to draw the second and third vial of blood.

That’s right, even though Chey has been fitted with a port to facilitate the process, the blood is so thick it is hard to suck out. As far as the phlebotomist, a.k.a. nurse-with-big-needle, is concerned, this is a likely sign of excess iron in the blood.

In the meantime, efforts to assess, fix, and/or compensate for, the damage that HH has done to Chey’s endocrine system are ongoing. Unfortunately this is very hit or miss at the moment. Some days she feels almost okay, but many more days she feels extremely fatigued, emotionally dizzy, and prone to hot flashes of Biblical intensity. This emotional dizziness means going from frantically alert and in danger of sleep drepivation, to mordantly comatose with generalized body pain, with outbreaks of uncontrolled weepiness in between. In other words, no fun at all, not to mention a real strain on the washing machine.*

But we’re not giving up home on the phlebotomy treatment. The hope is that reducing the iron in Chey’s system will enable some of the damaged or under-performing organs to rally and return to normal. After all, this is the year of Hope.

Ed: Sorry if the washing machine reference was a bit obscure. It comes from the fact that Chey has to change clothes many times a day when she gets these soaking sweat attacks. Think of cartoon sweat, squirting from a person’s head…it’s like that only for real. I kid you not.

Eric made an interesting comment on my last iron overload post. He wondered why my wife has not pursued phlebotomy as it is a recognized treatment for iron overload. Eric states “Blood banks are happy to see you because they know they will see you many more times than regular donors.”

Eric’s comment and concern are both appreciated. Unfortunately, we have hit a few bumps in the road on our way to bloodletting. Here is my current understanding of the situation. Please feel free to comment if you think I have got this wrong–we have heard of regional variations in the way some of these things are handled:

1. Around 1996 the US changed the rules for blood donation to exclude all persons who lived in the UK during the time of mad cow disease. That includes us, so we have not been able to give blood since then. In fact, Chey was a regular donor before this ruling and we suspect that stopping the donations at that time contributed to the build up of iron–her iron overload symptoms started to manifest after that.

2. Voluntary donations of blood are not accepted if less than 8 weeks apart. So, according to our doctor, a routine of accelerated phlebotomy to treat hemochromatosis requires a prescription (I know it sounds weird: a prescription to give something as opposed to take something).

3. Some blood banks lack a means of categorizing blood that is ‘donated’ by iron overload sufferers and so they do not accept it (apparently this varies by region). Strange but true (according to the Iron Disorders Institute Guide to Hemochromatosis).

So, common sense would indicate blood-letting is a simple fix but reality is proving less sensible. We have not yet tried the amateur freelance phlebotomy approach but we have been tempted (I just wish I had paid more attention to how you stop the flow of blood once it’s been started).

And I should add that we are beginning to run into the “Dr. No” syndrome. That is the “Dr No. Big Deal” syndrome, when your doctor decides you’re making too much fuss about your illness and starts telling you you’re exaggerating. You hear things like “lots of people feel tired at your age” and “it’s normal to feel depressed this time of year” and “your test results are close enough, nothting to worry about” (when in fact the results are clearly abnormal and frankly worrying). We are seeking to address this problem without alienating the medical profession in our small community.