Aps ireland

[ste1000]

Are there many people from Ireland here who have aps and could the tell a part of théir story

[David-Nisbet]

Dublin guy here. Diagnosed 27 years ago after clots in both lungs. Ended up with major blockages in pulmonary arteries. Had surgery in the US in 1999. Often told its a "weird" disease or very uncommon. It's definitely a peculiar one but not that uncommon.

[ste1000 in reply to David-Nisbet]

Yeah I have got a lot of mixed information about aps I was tested as a long shot by vey good hematology department the specialist discovered it took a long shot on we with many complicated issues I had. It's a shame we don't have a aps support group like the one in the UK, thanks David for you story

[MaryF Administrator]

Good to have some representation from The Emerald Isle, as in the past people have struggled to find a consultant over in Ireland, is it getting any better? The Knowledge amongst the medical community? MaryF

[David-Nisbet in reply to MaryF]

Not a lot. Rare, weird are just two of the comments I've had, one of them from my daughter in law who's a Gp. No specialist docs so far.

[MaryF Administrator in reply to David-Nisbet]

Just had a bit of a rummage on line for you. 1. arthritisnorth.com/patienti... and clearly some research going on if you look here: researchgate.net/scientific... Useful to at least see some names that could be contacted by a GP. MaryF

[Nimle1980]

I’m from Dublin / Wicklow. Diagnosed earlier this year with obstetric APS. No clots (yet) but multiple miscarriages - I really had to fight to be tested and pretty much arranged my own which led to the diagnosis. I was referred to consultant Kevin Ryan and he was absolutely brilliant to talk to. The man loves blood!! 100% recommend. He’s in James’ (and the Coombe).

[KellyInTexas Administrator in reply to Nimle1980]

Very thankful for this

[ste1000]

I find the clotting factor is the only thing focused on by haematology and none of the other life effecting issues that affect quality of ones life

[owall]

Hi ste1000, I am in Ireland too, Co. Meath. I have APS and went privately to Prof James O'Donnell in St.James's to be properly tested and diagnosed following bilateral PEs out of the blue. Once I was diagnosed, Prof O'Donnell transferred me to the public clinic in the National Centre for Coagulation Disorders in St. James's so that there will always be someone available if I have any issues. I attend there once or twice per year and find them pretty good. I have been on warfarin since 2012 with no further clots. However I found out last year that I have had a stroke at some point since 2015, unbeknownst to me. I am very glad I was on warfarin as who knows what might have happened otherwise. I have some other health issues including lupus which came to light in 2018. I hope you are doing well.

[ste1000 in reply to owall]

Jesus that's tough for you but as you say the warfin probably saves your life I am nearly a year on warfin longest break before bloods is 3 weeks I am hoping it will settle down for longer when I go back thanks owall for the post

[Deerfacechihuahua in reply to owall]

Been on warfarin for 12 years with no problems. I self-monitor every month if there is nothing unusual going on like an illness or being on an antibiotic as they can impact warfarin INR levels. Tested positive by a brilliant hematologist in Miami after having experienced two strokes, the second while on a blood thinner that does not work for APL. By that time, American hematologists had learned about APL. I can assure you, your warfarin kept you from having a major stroke. Yes, it’s a pain to monitor, but I call it my lifesaver med. The first stroke took out my entire right side with the only impact a right arm that does not swing when I walk. Fortunately, the second was minor, affecting facial muscles, thereby speech, and the ability to control my left arm. Following self-administered physical therapy, I regained control of my arm. I was in Tanzania at the time, hours from any medical facility and clot busters. I was able to reach my physician in the US who recommend 1500mg of Asprin as we assumed it was a clot and not a bleed to a volunteer clinic physician. APL was still little know at that time. Upon returning stateside, tests were done showing positive APL with positive lupus anticoagulant antibodies. It is wonderful that there are facilities in Europe that provide APL support. I still come across US docs who know little about the condition and cardiologists who ask why I am on warfarin and not one of the newer anticoagulants. Because they don’t work for APL! Sorry for the long response, but over 12 years I’ve learned a lot. Be your own advocate and choose a doctor who is knowledgeable of APL. I check this site often and I’m still learning from the special people who have this relatively rare condition. Thank you to all.

[Lure2]

Hi, I am from Sweden and have been on this fantastic site for many years. We know that a Specialist is necessary and one who works with these autoimmun illnesses that often go hand in hand and knows the different symptoms. There are so few Doctors and no one like prof Graham Huges who found this illness. I have 4 books written by the Professor at home.

I am trippel positive with high titres all the time and I have a Hematologist, a Rheumatolog and a heart/lung specialist among others. I take Warfarin since 2012 and need to be between 3.5-4.0 in INR to be safe. It is a real fight to get to a Specialist for us all, where ever we live and Warfarin is a lifesaver. What a difference as soon as I had taken the first 3 tablets! I notised I could read again. No double text etc.

Stay on here and read as much you can about this illness. Knowledge is important out there. Kay Tackray has written a very good book about this illness. It is called "Sticky blood explained"and that book is also good for relatives to understand this weird illness. Prof Hughes himself has said some years ago that this is really a good book to understand APS.

I used to repeat myself about that title some years ago very often. I have it in Stockholm of course.

Good Luck to you!

[ste1000 in reply to Lure2]

Hi lure,

Thanks for that advice, genuinely ill get that book thank you

[Deerfacechihuahua in reply to Lure2]

Amen to all your advice. Going to Google your book advice today.