Haematologists knowledgeable about APS in Ireland (Dublin/Louth/Meath region)?

[owall]

I've found the information on this forum extremely helpful and am wondering if there are any forum members from Ireland who could let me know how/who helped them get a diagnosis in Ireland.

I'm 43 years old and had a bilateral pulmonary embolism completely out of the blue on July 31 this year (no obvious cause or risk factors). I had a smattering of clots in both lungs and spent 11 days in hospital. A number of blood samples were taken before I was put on warfarin. I was told they would take several weeks to come back as my local hospital was sending the samples to another hospital and that some samples may go to England for testing. The test for APS is the one I was most interested in as from reading up on Hughes Syndrome I appear to have some of the symptoms e.g. visual disturbances.

After several phonecalls and months of chasing the results of the APS test, I was informed last week that although they took a sample to test for APS, some-one decided it was not needed and therefore the sample was destroyed and the test was not done! I am really upset that they did not run this test at the time I was having the clots.

I will probably be coming off warfarin at the end of January so that all of the tests can be repeated. I'm concerned that if my APS test is not positive in January that my consultant will want to leave it at that and will not want to pursue further testing. So I would be interested if anyone in Ireland has dealt with any haematologists who are knowledgable about APS. If necessary, I would consider travelling to London to see someone. But I would like to pursue any possible specialists in Ireland first. Thanks in advance for anyone who can help.

[MaryF Administrator]

Hi there..currently we are in the middle of building a data base of knowledgeable and reliable care.. however so far no names are coming up for Ireland, although other members may know something. In the mean time if you can't get a referral to St Thomas' Hospital in London: guysandstthomas.nhs.uk/our-... perhaps you could get your particular team to look at this, and also down load them some papers off our site... otherwise it is a self referral to London Bridge Lupus Unit, privately to get some professional guidelines in writing for your local doctors. I had to do this, before being referred on the NHS, Professor Khamashta there has a shorter waiting list I believe currently than Professor Hughes. Good luck with current state of affairs. Mary F x

[owall in reply to MaryF]

Thanks Mary F for such a quick response! This is really helpful and at least I now have a back-up plan

[David-Nisbet]

Not sure if this will answer your question directly but might help. I too had bilateral emboli in 1997 and ended up in Vincents. I was told that warfarin would help to dissolve the clots over a period. This did not happen and I ended up with both pulmonary arteries badly blocked and with a very poor prognosis. In 1998 I looked for a second opinion and was referred to a respiratory guy in the Bons who passed me on to a cardiologist Dr. McCann in the Mater when no one in Ireland was able to do anything except suggest a lung transplant. He sent me to San Diego where the clotting material was removed (horrendously expensive!) but I have been able to live a more or less normal life since. I am APLS positive and will be on warfarin indefinitely or until some other drug is approved for my condition.

[owall in reply to David-Nisbet]

Wow David, it sounds like you went through quite an ordeal. I am glad that you are now living a relatively normal life. I am feeling pretty good and assume my clots are mostly gone. I just want to ensure it never happens to me again. So I will be getting a second opinion if my current hospital team does not want to pursue testing for APS. I will be on warfarin at least until the end of January when I will ask for all the tests to be repeated. And then I will take it from there! Thanks for giving me Dr McCann's name. It may come in useful if I don't get anywhere with my consultant in January. Best wishes for your health in the future, Olive.

[David-Nisbet]

PS. I forgot to mention that I was also fitted with a "Greenfield Filter" in 1998 to stop any clots formed in lower regions reaching the heart or lungs again. Sounds agricultural but was probably the least upsetting part of my ordeal in the long run.

[owall in reply to David-Nisbet]

Thanks David. I had heard about these filters and will mention to my consultant. I'm not sure where my clots started but I suspect they started in my feet.

[natirish]

hi....the hospital u need is st james haemophlia centre.....dr donnely...im from ireland but live away but its my point of call...no other if i am in need of help or treatment...my mother attends there also an she lives 80 miles from st james but has been advised if in need to go there...hope this helps x

[MaryF Administrator in reply to natirish]

Hi there, can you give me full address and title him so I can forward it to the date base being built, post code and the full name etc.. and any initial with his name, would be so grateful. Thanks. Mary F x

[natirish]

while im at home visiting i mean is when i need to go there if in need...sorry blonde moment...x

[IC-sucks]

I can recommend Prof Beverley Hunt of St Thomas's London who is the UK lead for APS. Hope this helps.

She also runs a charity think it's called Life Blood.