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Karl Mackey and his sister Amanda with Gaelic footballer Brian Fenton
Karl Mackey and his sister Amanda with Gaelic footballer Brian Fenton
Image: Karl Mackey

‘It's one of those feelings you just can't beat’: One haemochromatosis patient on donating blood

The recent rule change has helped Karl Mackey to become a donor.
Oct 2nd 2019, 10:04 AM 20,971 10

WHEN KARL MACKEY was in a bicycle accident four years ago, he had no idea his life was about to change, but not for the reasons you’d expect.

After undergoing a series of tests in hospital, it became clear that he has hereditary haemochromatosis, and had been living with it for over four decades.

A disorder in which the body absorbs too much iron from the diet, Ireland has the highest rates of hereditary haemochromatosis in the world – approximately 1 in 83 of us are predisposed to develop it.

For Mackey, it wasn’t an obvious diagnosis, but it did make sense in retrospect:

Looking back it did affect me – I was constantly tired, even if I had gotten 12 hours sleep. But I just put that down to the way I was, I didn’t think anything of it.

Treatment of the disorder involves therapeutic phlebotomy – the removal of blood at regular intervals. And thanks to a recent change in blood donation rules, those with haemochromatosis could potentially make up around 10% of the national blood supply.

In practice, this change means that instead of attending their local hospital and potentially being charged an in-patient fee, patients can now just come to their local blood donation clinic and have their ‘discarded’ blood be used for potentially life-saving transfusions.

It’s a rule change that impacted Mackey personally too. Shortly after he got diagnosed, he actually tried to donate blood at the D’Olier Street clinic in Dublin but because of the rules at the time, it wasn’t possible for him to do so.

The news that he could donate kickstarted a brilliant habit that Mackey is yet to break: “Once I heard I could, I started donating blood and I’ve gone back every three months since I started – it’s on my phone and in the calendar.”

He calls the change “absolutely fantastic”, and shares the blood from people with hereditary haemochromatosis can actually be even better for some patients who receive it.

“My sister was diagnosed shortly after me and had to have so much blood taken at that time”, shares Mackey. “It was such a waste because they say that iron-rich blood is particularly good for certain patients like those who have been in an accident.”

And what’s different about the actual donation process when you’re a hereditary haemochromatosis patient? “It’s the same as anyone donating blood, there’s no difference. It takes about 20 minutes to do.”

NO FEE IBTS HH BLOOD DONATIONS MX-6 Karl Mackey and his sister Amanda donating blood Source: Maxwell Photography

In fact, it’s actually helped with the symptoms of his hereditary haemochromatosis:

It felt amazing. One of the biggest side effects of the condition is the fact that you feel tired constantly. But when you donate blood, you have that lift where you feel more awake and energetic within a few days of donating.

So, how is he doing these days? Mackey’s lifestyle has improved over the last few years, a change he credits to dealing with his diagnosis. Luckily, his ferritin (the blood cell protein that contains iron) levels were only above the normal range initially, so he was told he could alter it by diet: “It spurred me on to start changing my lifestyle, and I became more fitness-oriented.”

Since then, he’s cut out a lot of meat from his diet and tried a vegan diet for eight months. During that time he’s gone back to get both his ferritin and his iron levels checked and they’ve both been in the normal range. 

Mackey actually cycles past the D’Olier Street Clinic everyday and has been delighted ever since he was able to make his first detour there to donate:

It’s just one of those things that you can’t beat. For so little effort, you get that reward back every three months. For less than an hour of your time, you could be helping somebody to avoid death, for all you know.

I have hereditary haemochromatosis – can I donate too?

Absolutely, as long as you meet the following:

  • You’ve completed iron depletion therapy
  • You’ve had at least one round of therapeutic phlebotomy without complication
  • You’re in the maintenance phase of your treatment (you don’t need more than eight rounds a year)
  • You don’t suffer from complications of hereditary haemochromatosis

Source: giveblood/YouTube

If you believe you meet the HH criteria (you can check with IBTS here), check the standard blood donation criteria (here) to see if you’re suitable to become a donor. If you reach both criteria, find you nearest clinic here so your next withdrawal can make a big difference. For more information, visit giveblood.ie or call 1850 731 137.

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