Living with an AA sufferer in Ireland

[whackerswalsh]

Hi All,

Firstly I wanted to say how impacting & informative this forum has been for me and the wealth of information everyone has contributed to. I have learnt more about this silent disease just by reading everyone's personal stories. So thanks guys!

This is my first post....

My husband (60) was diagnosed with SAA back in January 2016, since then he has had 2 ATG treatments (first partial response) and continues on with Cyclosporine daily. Like most of us on this forum the first reaction to diagnosis was "SAA whaaaat??" We had never heard of this term or condition...for us it was a whirlwind few months, and continues to be.
He has been back in hospital with chest infections, and coupled with AA he was also diagnosed with Haemochromatosis, which they call the Celtic disease. Too much iron in the blood. So with all the blood transfusions he is totally overloaded with iron on top of everything. And he cannot take ExJade it just makes him very sick.

I am reading everyone's personal story and am quite taken aback just by the stats and medical information you are armed with. Ireland has a very small pool of people who have this condition, currently in the main hospital where my husband is treated there are less than 10 patients. We have never met any of them.

I cannot emphasize the great care and attention from the medical team, but I get frustrated at the lack of information forthcoming. My husband always had a thirst for life, and thankfully his "glass half full" optimism has stood to him but he is a terrible communicator when it comes to his own health. So for me as the primary carer I have had to battle with him and his consultant/team to get any sort of information about the severity of the condition, his progress to date, where do we go from here, or are there any clinical trials etc.... this is not a negative on the medical team but I think that given there are so few people in Ireland with AA we don't have the experience or numbers for continuous research and development of the disease.

So I wonder if there are any current members who are living in Ireland and sharing the same experience?

I would love to talk to similar carers about how they cope and any information that could help me better fight the good fight.

Once again thanks all, this forum really has been so inspirational.

WW

[Neil Cuadra]

WW,

I can imagine how isolated you feel. When my wife was treated for AA at a major hospital here in California, she was the only AA patient in the entire hospital.

I'm glad your husband is an optimist. (My wife and I are too, and we think it helps a lot.) But if he purposely avoids bad news, that may leave you in charge of gathering the facts.

Here are a few ways you might be able to get more information or feel less isolated:

Go to each meeting your husband has with the doctors, and bring a written list of questions, perhaps a few for each appointment. Only your husband can tell you how he's feeling, but you can gather everything else yourself: what the doctors say, what the test results are, and the answers to the questions you pose. When doctors see that you are organized, they may treat you more like a team member.

Check with the Health Service Executive (if that's the right agency) to find out what chelation drugs other than Exjade are approved. Then you can ask the doctors whether they are worth considering.

If your husband's doctors haven't had much experience with AA, or AA in combination with haemochromatosis, maybe they'd be willing to talk to their peers at larger medical institutions (in Ireland or even in other countries, e.g., King's College Hospital in London) for advice that could help them with your husband's care. It wouldn't hurt to ask if they know AA specialists who they could consult with.

Ask the hospital if they sponsor any support groups where patients or caregivers can talk to each other.

And, of course, take advantage of websites like this one, Facebook, on anywhere else you can make connections and gather information.

Good luck!

[whackerswalsh]

Hi Neil

Many thanks for your response and the helpful tips to try and progress things along with the Team.

I originally looked into Kings College London as they had advertised clinical trials, but they were only at the interest stage. After my insistence we got to see another consultant in RI who did some years in US specifically with BMT and she was fantastic, we got more out of her in 1 hour than I have in 2 years! But she was only looking at a possibility of a transplant which is a non-runner it transpires.

With our current Team and almost 2 years on we have only met officially with them twice. On the last meet (over 6 months ago and at my behest) I put forward very similar to what you listed, but it always seems to be a one-way street that we are setting up these meetings. And we do not get any stats that most posters here seem to have.

But I will certainly ask about carer support groups, one of the biggest challenges for me is the feeling of isolation and wondering if I could be doing more.

Again thanks so much for your encouragement and advice.

Regards
WW