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.
You can find lots of real life tips from Pat at his blog: http://ironoverload.info
ReplyDeleteHere is the current policy at the blood bank where I live:
ReplyDeletewww.bloodcenters.org/donating/hemochromatosis.htm
In addition, the restriction against giving blood from the same website is:
UNITED KINGDOM: You have visited or lived in England, Scotland, Wales, Northern Ireland, Isle of Man, Channel Islands, Gibraltar or Falkland Islands for a total of 3 months or more from 1980 thru 1996.
With that said, I am not understanding the reason why her doctor has not given her a prescription for the phlebotomy. It seems reasonable to decrease the amount of iron in her system and this seems the quickest way to do it. As you have noted, iron builds up in the organs over time and it take time to leach it out again. The advantage of the excess iron is recovery from a donation is quick since the iron to build red blood cells is abundant. The test results showed an abnormal result and I am only guessing that was a high range iron related readings; the question being is this the cause of the problems or the result of another process.
I just came across your blog. I too have hemochromatosis and was very lucky to be diagnosed in my 40s with no symptoms. Although my levels are quite low for this disease, my doctor arranged for me to have quarterly phlebotomies at our local hospital (they won't take me at Canadian Blood Services (our blood bank) because I once had melanoma). I haven't read all your postings yet, but I see a Dec entry with your wife's symptoms and this Feb entry where she still hadn't started phlebotomies??? That is shocking! I hope this has since been rectified and she is now getting this critical treatment.
ReplyDelete(my husband is also left-handed and colour vision deficient :-)
[...] I trust people “got” that the image which accompanied my February post on phlebotomy was the barber’s chair from Sweeney [...]
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