Hopeful referral to APS specialist

Hi all, thank you for your help and answers about referral to an APS specialist. After a long route of being sent from doctor to anticoagulant clinic to self referral back to the doctor, hopefully our doctor is now going to write to prof C. Gordon at City rd hospital for an appointment. His INR continues to fluctuate from 3.8 - 1.6 up and then done on each visitand finally got someone to agree that it needs to be between 2.5 and 3.5 due to APS and be seen weekly not every 3 weeks! and not the lower 2-3 range even though hiss notes clearly state APS. Why is it not until I go and point out the obvious any one sits up and takes notice. WHAT does it take to get someone to be on our side? My husband has had 3 strokes so just takes what he is told and walks away and it is impossible to my work situation for me to be with him on every visit. This has been a long hard upward battle but I'm hopeful we might be getting there. So thank you all for agreeing that what I thought was right and I'm not a nuisance and over concerned wife just that I want what I believe should automatically happen for all patients. We have such an unfair system in this country.

Sorry for the rant but hope others in same situation will continue to seek what they are entitled to to have a better quality of life! Good luck all. Any further advice greatly received.

8 Replies

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  • The phrase 'keep calm and carry on' applies here, you have done really well to push on through all this, keep going in the same direction, secure that appointment and be very firm about how much monitoring is required. Also call in any favours with relatives, friends, neighbours or colleagues etc. Make sure you write down the history in bullet points, and also current symptoms, also previous and current medication. Best of luck, do keep us all updated. MaryF

  • Thank you, I shall start keeping a diary just for symptoms etc I have all past letters etc but will put it into a diary in one place. After hopefully getting an appointment, My next concern and question will be what are the questions I should be asking a specialist. I have started to write some down so any assistants from those having already been through it will be greatly received. I shall post when I have our date. All the best and thank you again for your continued support and advise.

  • Hi and thank you for sending your update. We learn so much from eachother here and so very few doctors around the World (I live in Stockholm) know about APS.

    Your husband can be lucky to have a wife who is making his voice heard and understands also that he must have a Specialist to have a chance to get his life back again. So many of us have fighted for our rights and have had difficulties to be heard with this rare and undiagnosed illness!

    Let us hear how it goes and Good Luck with your work for him and give him my regards also

    Kerstin in Stockholm

  • He will be in incredibly safe hands with Prof Gordon. She is an amazing doctor. She knows this condition inside out and listens to every word you say.

    the registrars at City hospital are all also fantastic. I'm there on Thursday to see Prof Gordon. I will keep everything crossed he can get a referral.

  • Thank you for your positive thoughts about Prof C Gordan , all the best at your appointment. I am assuming you have seen her previously and that you have managed to have subsequent appointments. Does she keep monitoring and reviewing her patients? That would be music to my ears. ( hopefully we will get the referral fingers crossed).

  • Hi u r not being over protective! I've had blood clots since age 24, hi BO with pregnancy, & slightly premature birth! I am now 62 and have been under the care of a Hemotologist/Oncologist for 10 years, doe to a very rare blood disorder cald POLYCYTHEMIA VERA! Why wasn't I DIagnosed sooner! No they had to wait till I lost my left leg this past January! So no keep at it! I've been told it's in my head or I have a virus running thru my body! So please continue your perseverance with ur husband! It can only help! Thank you for sharing and Bless u and ur Hubby!

  • Thank you and sorry to hear the news about your leg. I will keep fighting! X

  • Yes I totally agree! I have suffered most of my life with this APS! At age 24 my first PE and many other DVT'S! Tia's pregnancy problems and the like! At age 62 I have been finally diagnosed, but with having to loose my left leg first! Keep Persevering! I did and finally know! In my book there is no such thing as being overprotective! Rant and RAVE TILL U GET RESULTS MT DEAR! Also thx for letting me know I'm not the knly one who's been mistreated and misunderstood by Medical Prodffesion, Family & Friends too!! They just don't get it, neither do NEUROLOGISTS! After battery of tests and he found nothing he led me to believe I had a VIRUS running they my body!!! A week later my Hemotologist that I go to for another rare blood disorder cald Polycythemia Vera, diagnosed me! Why couldn't Neurologist just say I don't know instead of leading me to believe I had a VIRUS!!! They're not God and they shouldn't act as tho they are! God Bless and good luck!!! You just keep on TRUCKING!!!

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