I apologise in advance for the rant....
I had my first appt at the Louise Coote Lupus Unit in July of this year after writing to Prof Hughes and having no funds to see him privately, he wrote me a lovely personal letter and told me to get a referral to Prof D'Cruz at St T. Fortunately one of my other Consultants at St T agreed to do the referral for me, and after a 7 week wait I got my appt.
Well firstly, I never got to see Prof D'Cruz as requested, but one of his 'team' I was told. This was a disappointment straight away as I had not heard of this man or seen his name anywhere in any listing about knowing how APS works. He sent me for a whole load of blood tests - which seems to be the norm - and asked to see me three months later for the response. In the first meeting I had given me my whole life medical history (I am 65 and been on warfarin for 40 years, but only diagnosed with APS in 2001) and my full list of meds and conditions previously diagnosed. Having looked through them he said there were probably a few of my meds that could be changed which would improve my situation and that some of the conditions I had been diagnosed with were generally associated with APS.
I must say I was very disappointed to have to wait 3 months for the follow up but was told this was normal.
So Monday this week I went back for my follow up appt - and what a disappointment that was. Firstly I saw the nurse who said my BP was 176/102 and that she was very concerned and would make a big note for the Dr. When I did get to see him I was not in with him for more than 10 mins! He told me he was pleased to say I did not have SLE but did have Primary APS and Lupus Coagulant. He also said that as I was on warfarin already that was the right treatment for me and to just stay on it - even though I took my yellow book to show him how erratic my INR levels were. Even with numerous raising of my warfarin dose the INR had not gone above 2.1 in over 5 weeks (the week before it was 3.9 and then suddenly dropped for no apparent reason). He said to stay with it and it would sort itself out! He never even mentioned the BP even though I was feeling extremely ill and he said to make an appt with my GP soon.
He did not give me the results of any of the other tests, nor let me ask him any questions about them, even though Prof Hughes was adament I had Sjorgens. He said that to go back under my GP and he would see me again in ONE YEAR in case any new thinning agents had been approved. He did not change one of my meds as previously said either as he felt that should be left to my GP who would be looking after me - the big issue for me here is that my GP doesn't even know what APS stands for and neither does the nurse who does the INR.
On Tuesday morning my INR had dropped again to 2 and I was feeling so ill that the INR nurse called the duty GP to see me. After talking to me for a few minutes and taking my BP she rang the DVT nurse at our local hospital and told her of the concerns - I have had 3 PE's and around 18 DVTs most of them whilst on warfarin except for the first PE - and was told to go straight to the hospital A&E. They were brilliant there and the nurse who dealt with me knew all about APS etc. She took bloods and arranged a scan. She gave me a dose of Heparin as she felt I really needed to get my INR level up. Fortunately I did not have a clot at the time but I have had a stroke in May and several TIA's as well as falling over and generally feeling really ill all the time.
I am sorry to dump all this on you but can you please advise me where I should go from here - I have suffered all these years without any help from anybody apart from seeing a Heamatologist and Rheumatoligist in 2011 when diagnosed. What can I do to get looked after properly? Have you any advice? Many thanks