Help with haemchromatotis

[Debbiecarr]

I have been diagnosed with haemchromatotis and went for my third viensection yesterday but unfortunately I was very unsuccessful as my veins were to deep and with all the prodding and poking they then closed up. Therefore a specialist was called and was still unsuccessful I now have to go back next week where as I usually go once a month apart from this being very painful it's has now made me very anxious and nervous for my next appointment😥 what happens if I cannot give blood ? Can anybody help with advice or other. I drank lots before I went as I always do ate sensibly and also had heat patches on my arms please can anybody body help?

[mikebenf]

Hi, I was diagnosed with HH some 15 years ago and was filled with all sorts of rubbish about it being life limiting, deadly stories about cihrosis and various other horrors.

Don't get all het up, this dianosis is the best news that you can get the bad news is when you don't get the diagnosis. Now you know about it it can be controlled. My venesections started off as weekly and are now three monthly in fact it's now a six monthly interval this time.

The first few are allways the worst I went home after the third BL (in our house it's blood letting) sporting five bandages (inside both elbows, on both forearms and the final one on the back of my left hand where they got the blood out with a syringe). Then they sent me anaemic after the 12th weekly BL. The secret is to relax and remember the horrors that you are now going to avoid, it will all become very routine.

I manage my own BL cycle with the help of a great nurse (Liz Farrington) she's the Specialist Liver Nurse at Treliske Hospital and her fantastic secretary, also a Liz, and I have a wonderful day case nurse at Bodmin Hospital. Arrive at 09.00hrs get rid of 400ml have coffee and biccy's book for three month's time say bye bye and out for 09.30. I have my bloods taken at my surgery a week before my BL is due ring the Liz's two days later to get the Fe and iron absorbtion and get told (officially) whether I need to attend or not.

I also have deep veins and I'm not particularly fond of "having a dig round" so after ONE dig in the inside of the elbow it's the nice big vein on the forearm, that has never failed, though some nurses don't like to go there. You are doing the right thing by topping up your fluid levels, I have a large coffee and a pint of water at breakfast and I usually find that that is sufficient. The main thing is to relax, you are going to be doing this for the rest of your life (along with several million others) so think nice thoughts and most important try to build a relationship with the gang who are going to look after you and feed you all that coffee. Remember that despite the fact that you are a patient it's still your body and you are in charge.

I get an annual review and as I don't want to waste a consultants time I see Liz at my local hospital have a chat she tells me if she wants any unusual tests blood, ultra sound of liver etc. and thats it for another year.

Hope this helps. One last bit, my son is an extremely intellegent lad (2.1 Computer Science Cambridge) but it took me six months to get him to the doctors to be tested, he's scared of needles.

Best wishes,

Mike

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Hi, I recommend the Heamachratosis Facebook site. The people on there have been through all sorts of venesection problems and they are very supportive.