Lupus Anticoagulant positive update 3

[geoff0702]

Well meeting with haematology and neurology was postponed on 21st, it's now on the 7th. As you can imagine wasn't happy.

Slowly collating all the paperwork regarding my wife.

Had an email back from Professor Graham Hughes, who correctly guessed my wife's INR results and suggested that she needs a higher range, that made my year!

My wife is having a major relapse, completely out of it with no limbs, an arm came back yesterday afternoon and decided to go away half way through her tea. So our son had to feed her.

I also found some 5000 units of fragmin in a cupboard, in two minds whether to add it to her usual 15000 unit dose? As she was dosed by a dosy pharmacist, who said your dose should be 18000, but will give you 15000!

The question in my head, do I give extra fragmin and hope for the best or leave it and show the consultants just how bad she is on Thursday?

[MaryF Administrator]

I suggest you ring the clinic, with the postponed appointment, as a matter of urgency in the morning and explain that the delay is putting both you and your wife in a dangerous situation. I think I would be phoning 111 in the meantime, I know it is the week-end but symptoms like that sound dangerous. At least if you ring 111 and explain what is going on, you may get further guidance for today, and then tomorrow ring the secretary of the consultant and say things have worsened and your appointment being cancelled, has not helped with your wife's worsening state, also if her symptoms are very visible do film them with your phone.

We are not medically trained, and can only advise that you stick with the instructions for dosing so far but get on the phone to try and get extra help. Do tell them that the pharmacist seemed to not be clear on the dose.

MaryF

[geoff0702 in reply to MaryF]

Thank you. Luckily my wife has come around a lot since I posted, thank god. She has an arm and is busy chatting with family. These episodes really put the wind up me at times. Just really hope we get somewhere on Thursday.

[Wittycjt in reply to geoff0702]

Its great that she has come around. I believe in what Mary has suggested. Your wife may be havng little mini strokes trying to give you warning. Heed the warning and call 111 as she so suggested.🙏🏻

[HollyHeski Administrator in reply to geoff0702]

Glad she's come round but if it happens again especially before Thursday, please follow Marys advice and get the medics involved.

Enjoy whats left of the weekend.

[lupus-support1 Administrator]

I have nothing of use to say, but my heart aches for your wife, you and your son!

I would ring the Clinic, explain as calmly as you can, that your wife's situation is now an emergency and to delay this meeting would endanger her life. Err on the side of exaggeration but without the temptation to call them all the names under the sun!

I don't know whether this is possible for you to do but you can insist that this call and what has been said, is recorded (ie a note taken of the conversation) so if (heaven forbid) your wife deteriorated, you can say to them that they had the opportunity to review the change in date. Ask for the name of the person to whom you are speaking and if possible, escalate the call to someone with authority.

With good wises,

Ros

[geoff0702]

Had meeting today, went loads better than expected, but did take enough ammo to start world war 3 (paperwise, lol)

So my wife has got a positive definitive Hughes Syndrome diagnosis. Apparently her APTT was high on warfrin, if I heard right

So now going on 17500 units spilt in two injections morn and night

MRI head and spine

EEG, that took a bit of persuading (but neuro was quiet and sheepish looking so took advantage, lmao)

Got an appointment in 2 weeks to see if dosage is correct.

[HollyHeski Administrator]

Well done both of you, its so wonderful once you get proper diagnoses, it makes you feel a sense of relief!

Hopefully the dose is right and your wife stabilises real quick.

Your both on the right path now

[geoff0702 in reply to HollyHeski]

Thank you, the meeting was also recorded so they can't take it back, lol

[geoff0702]

Had follow up appointment Tuesday, wife's XA results are to high. Been dropped from 17500 units split into 2 doses to 15000 units split into 2 doses. Really hoping this still works as well as the previous dose. We've got a follow up in 4-6 weeks. We are also off today for MRI and EEG!

[Lure2 in reply to geoff0702]

Hi,

Many thanks for telling us about your wife and how it goes!

I know you have got the book "Sticky Blood Explained" by Kay Thackray. As you can read there, a proper anticoagulation and a Specialist who knows that, are most important.

Please let us hear how it goes as we learn so much from what you write. Give her a big hugh from me!

[geoff0702]

Had MRI and EEG, during EEG wife became tired,fell asleep, left hand started shaking and proceeded to decide to go on holiday along with the rest of her arm and legs. (Really wish they'd take her with them, she would love a break, lol). So hopefully if it's anything to with her brain it will show up.

Wife has come around, bar her limbs. Will see how it goes over weekend, hopefully just a bit of a relapse with going to hospital for 2 full days. If no better next week will be contacting haematology for the next plan (hopefully convincing them to put deltaparin back up).