I have an unusual history. In 2007, I recovered from several months in hospital with hypoxia and very severe chest pain only when I was put on heparin. I have a very severe history of clotting on my Mum's side of the family and family and friends begged the doctors to try anticoagulation because I was deteriorating and they feared I would die. The doctors did not believe that I was clotting or understand why oxygen alleviated the chest pain. I left hospital without a diagnosis but eventually found my way to Dr Khamashta at London Bridge who diagnosed me as Sero negative APS. I was on warfarin for a while but was never well on it. I have been in Heparin about 13,years.
I have largely avoided seeing consultants once Dr Khamashta moved abroad because I was afraid that my diagnosis would be questioned and I could be put at risk.
I have recently been investigated by a haematology team who have recommended that I come off Heparin, citing bleeding risk increasing with age. I think the real reason is that they don't accept my diagnosis, I have never missed an injection but I have occasionally forgotten but in every instance the symptoms started within 4hours of missing the medication.
I am afraid that GP will want to act on the Haematology recommendation. I have decided that the best thing I can do is go back to London Bridge and see someone who understands Sero-negative and the chest pain symptoms. I also need a doctor who treats the patients experience as relevant in decisions.
I was wondering if any of you can recommend particular doctors there.
Sorry for the long post, I have tried to be concise.
Any advise appreciated.
Thanks Ann
Written by
Annslack
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There are cases where you just have to stand up for yourself and tell them don't change what ain't broke! Last visit with my haem he was off somewhere and his reg told me my Clexane dose was too high. I have regular (3 monthly) bloods for Factor 10a and although test showed slightly high, I wasn't ready to agree to a drop in dosage after one slightly abnormal reading. I'm having another test next week and see what that brings.
You could try Guy’s and St Thomas’ Hospital Foundation Trust, London.
Perhaps Beverley Hunt, is a Consultant in thrombosis and haemostasis
Beverley Hunt specialises in thrombosis and haemostasis, pathology, and lupus
I used to see Dr Khamashta, who was brilliant. I am now monitored by Dr K Breen (Thrombosis and Thrombophilia Clinic) - I’ve never had a thrombosis but have triple positive antiphospholipid antibodies and they monitor my blood.
Per others, Prof Beverly Hunt and team…she’s quite stern, but from what I’ve seen, heard and read, I genuinely sense she has a handle on everything she does!
I would ring up the London Lupus Centre and ask for Professor Hughes' secretary, he does not see patients anymore, but his PA will direct you to who is best to see, a lot of us have had to do this in the past. MaryF
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