Heart Broken...Now what: Hi Folks, I... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Heart Broken...Now what


Hi Folks,

I had made contact with the London Bridge Hospital to see if I could get some help for me and my GP to manage my condition. First reply offered me a consult at two hundred and fifty pound.. I explained that due to living in Australia that I would be unable to attend as the cost of getting there would be huge....around 7000 dollars. I asked if it was possible to get maybe a skype consult that I would be prepared to pay for and prior to that send my notes over with latest test results etc. Was told no as they dont do this as the doctor would need to do a physical exam. I am heart broken cause i thought that I could get some help to manage my health. So I guess now its just me and my GP fumbling around in the dark trying to stabilise me as I am at the catastrophic stage.

I had been referred to a heamo specialist who turned out to be an utter moron who cant even read the referral letter properly and advised my doctor to stop all meds and blood tests and put me on asprin. My referral letter stated what symptoms i had from 2007 to now...heamo told the GP I had no symptoms after 2007....he is obviously blind and deaf as i also told him of my symptoms...

NOW WHAT....back to being alone i guess. I am tired of fighting every day just to stay well. I have lost my job...we almost lost out house as our savings ran out covering the mortgage..i can get my inr to stabilise...i have had the worst headache ever yesterday...

Im tired of the fight....really tired

11 Replies

Hi there, I am sorry to hear about your plight. I hope your GP will still urgently email or write to either St Thomas' or London Bridge to get some general guidelines as to how to treat a patient like yourself. Presumably others on here from Australia could advise a better medical person to see in Australia, as this would probably help you, to see the right practioner out there. Wayne L has had some real success seeing Dr Tim Godfrey who was trained by Professor Hughes, Kate Hindle at the Hughes Syndrome Foundation or direct contact on here, would be the best person to contact now for some fine tuning. Mary F x

I have no help to offer, but just wanted to let you know that, even though you are half a planet away, I am thinking of you and sending you warmest wishes that you will feel better soon.

Larraine x

Hello, as above I'm afraid I cant do anything practicle for you, but sending hugs around the world to get to you to let you know you are not alone and we are thinking of you. xxxxxxxxxxxx

Hi I really hope there is light at the end of the tunnel for you with this,you must stay possitive, I know it's hard but we do all understand.

I hope that our lovely Kate can help you.

I feel big for you please keep strong & keep trying to get the best help that can be offered.

Let u know how you get on x

Sorry to read your story and the situation you find yourself in now. However please dont give up, I know its hard but the good thing is we are all here supporting you however we can. Hopefully now you have the contact details for the doctor that can help and you can get some help and useful answers.

Please look after yourself as much as you can and big hugs, hope everything turns around soon, keep the faith that things will work out.

Big hugs

Sara xxx

Hi Mystinzi

I am in north Australia. If you would like to contact me I will let you know how I got help in Australia and further after being on the Hughes site since 2007


Hi, Mysty.

I am sorry that you have not been able to get help from the UK and that you feel so alone and isolated right now.

I agree whole- heartedly when they recommend Dr Tim Godfrey to you.

I can tell you first hand that he really understands the trials of APS.

He doesn't promise miracles but will try his best to help.

Please don't despair, as we have also gone down this road but are finally beginning to see the light.

Please get your GP to contact him at Cabrini Private Hospital, East Malvern, Melbourne Victoria

I'm sure he can help and /or advise them on treating you.

Hope this helps, and that you feel better soon.

Wayne L

Hang in there, we're all pulling for you. Regarding a Skype consultation -- its probable there are legal hurdles involved in international consults like this. My thoughts are with you.


Hi All,

I have made contact with Dr Godfrey and as weird as it is I was going to Melbourne with my dearest friend in August to get away from the stress and such.

They are going to liaise with my GP and are going to do their best to squeeze me in when I am there in August. Thanks so much for the help everyone. Living in Perth Wa is like living on mars sometimes.

My family and friends have been fantastic at bringing me out of the doldrums...in fact my best friend is quick to give me a kick in the backside if i need it.

MaryFAdministrator in reply to Mystynzl

Well done and we are all glad to help, I hope this has lifted some pressure off you. All the best! Mary F x

Dear Mysty, I am so sorry to hear about your frustration and aloneness. I was there too when this first hit me and I didn't know where to turn or what to do. Listen to these wonderfully education people here about APS. I found so much REAL help from other people online when I was searching for my own diagnosis long ago and I got support from them and feedback. Be sure to know - you are not alone in all this. Listen to people and follow where they send you and take their good feelings as support. I will be praying for you sweetie - you are never alone. Hugs, Laurey

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