Advice about experts at London Bridge Hospital

[Annslack]

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

[Ozchick]

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.

[Raschen]

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.

Hope this helps.

[GillyA]

also Prof Cohen at UCLH. She leads an APS clinic and also sees patients privately through the UCLH private service.

[Annslack in reply to GillyA]

Just looked her up. I hadn't heard of her. She has a huge list of publications so I will have a read through some of them .

[KellyInTexas Administrator in reply to Annslack]

I saw her in May 2018

[KellyInTexas Administrator in reply to Annslack]

(cohen would be the better choice for patients like you and me.)

[MaryF Administrator in reply to KellyInTexas]

I have only heard good things, it is dire if you condition is questioned or not believed, myself and my children have had that at times, and had to go and find extra help, MaryF

[KellyInTexas Administrator]

hi Anne,

Am listening. Am reading.

Will get back likely tomorrow with you.

I’m heading back to London in late September or November.

[sailorbaejon]

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!

[HollyHeski Administrator in reply to sailorbaejon]

Prof Cohen I think is your best bet - ProfHunt is not taking on any new patients and doesn't do private.

[sailorbaejon in reply to HollyHeski]

I must have got lucky!

[KellyInTexas Administrator in reply to HollyHeski]

Really- is this a new thing with her? I saw her privately in May 2018. Perhaps she has changed and only sees patients at UCLH now?

[HollyHeski Administrator in reply to KellyInTexas]

I don't know about Prof Cohen to whether she does private still.

[KellyInTexas Administrator in reply to HollyHeski]

Oh, I misread what you typed You said Prof Bev Hunt does not see patients privately . ( my eyes read faster than brain could process.)

[bathouse]

Hello

Dr Arvind Kaul has always been wonderful to me, would highly recommend

[MaryF Administrator]

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

[Annslack]

Thank you all for your help and advice. I have seen my GP today and although she cannot prescribe Tinzaparin without a recommendation from a consultant, she made a commitment that she will find a way to ensure I won't be taken off it. I am so pleased and relieved. I assume she has some strategies in mind . I still need to find a good consultant but I am working on that. So helpful to have the knowledge, understanding and support from this group.

[Annslack]

Just an update. Have seen Dr Patrick Gordon at London Bridge and he was really good, very different approach and very empathetic. I am going to have further investigations re the chest pain and review after that. I am very relieved and feel safer going forward, and maybe even hopeful of getting more answers in the longer term .

I have been very glad of the support from this community. It makes all the difference to find people who understand what's it like.

Love to you all.