Haemochromatosis - Issues with giving blood.

Dinarius

I have high iron levels in my system.

I have no apparent side-effects from this.

However, a simple way of lowering my iron levels is to give blood. (In order to replace red blood cells, after giving blood, your body uses up some of the excess iron.)

My problem is this: the Bloodbank won't accept blood from me because of a long-term medication that I'm on. And, my GP practice only take small samples for blood tests.

So, my GP's solution is to refer me to a private hospital where a consultant would take blood at regular intervals, at €200 a time.

Is there a cheaper way of giving blood?

Thanks.

Denis

raxy

I have haemochromatosis aswell, my blood also can't be used because of a blood transfusion abroad.

I get blood taken in St Vincent's regularly.

I also have to see a specialist in the liver clinic every 2 years. You shouldn't have to pay anything for haemochromatosis treatment. Maybe your doctor is referring you privately with health insurance? If so ask to be referred publicly.

Dinarius

Many thanks for the reply.

HSE suggested a phlebotomy clinic as a way to give blood. Have you used one of those?

St. Vincent's Private told me that there is a two year waiting list for phlebotomy via the public hospital.

I do have some cover with Laya, but I'm not yet clear if this will cover me for successive visits in year one of the treatment. (Having reduced my iron levels, I would only need to give blood occasionally, thereafter.)

D.

raxy

I haven't heard of a phlebotomy clinic. I go to the IV therapy suite in Vincent's to get blood taken, maybe thats what they are calling it. I was there at the start of April & they made a new appointment for me there at the start of August. I could have went sooner but I wanted a specific time.

Maybe they have changed their procedures since I was diagnosed. You could look at Tallaght hospital either.

Dinarius

Just to be clear......

You're going public in St. Vincent's, correct?

If so, did your GP get you in there or did you get in via a consultant?

Thanks.

D.

raxy

Yes public in Vincent's.

My doctor referred my to a consultant there & after that I was scheduled for bloods. Think it was every month until my levels were low enough.

Now the nurses in the IV suite organise it. If my levels go up the schedule more appointments. Usually 4-6 months in between & an appointment with consultant every 2 years.

Dinarius

Ok.

So, you started with a consultant in Vincent's and dealt with a nurse thereafter. Are you effectively in the public system now when dealing with the IV Centre?

I seem to get the impression that the consultant would be taking my blood - but, maybe that's for the first visit only. I need to clarify that.

D.

raxy

Yes I'm in the public system. I told my doctor i didn't have health insurance when I was referred.

The consultant just reviews your results & asks you questions & examines you but doesn't take the blood. He may request other tests as well. They do a liver elasticity test to check your liver is OK.

Dinarius

Ok.

Maybe seeing the consultant was a fast-track way of getting into the public system?

I have health insurance, but cover for day procedure's is abysmal. And I only get back a fraction of consultant's visits. So, I'm happy to pay the consultant to get on board, so to speak, but I don't want to be in for repeated visits to them.

Thanks.

D.

3d4life

I was wondering if your GP cant refer you direct to the public system ( presume SVUH in your case as you are using SVPH at present ) so went on a search ...

HSE have some documents on this ( perhaps aspirational ? perhaps actuality ? ).

Two documents that I came across that might be relevant

https://www.hse.ie/eng/about/who/cspd/ncps/gastroenterology-and-hepatology/model-of-care-for-therapeutic-phlebotomy-for-patients-with-hereditary-haemochromatosis.pdf

https://www.hse.ie/eng/about/who/cspd/ncps/gastroenterology-and-hepatology/model-of-care-for-hereditary-haemochromatosis.pdf

Section 38 "Referral of patients" of the above might be relevant

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Notwithstanding the above, somewhere I saw words to the effect that patient pathway for this can vary locally ( lol! )

If I were you I'd contact https://haemochromatosis-ir.com/ and ask them how to get into the public system ( i.e. can it be done by GP referral or is consultant referral required )

FWIW IME the public system is very good at handling long term issues

Dinarius

Thanks for going to all that trouble.

I'm going to see a consultant next week and I will ask them about entering the public system.

No harm in having him review my case to begin with.

D.