Emergency admission total shambles.

[Oathy]

Hello.

Since I last posted its now been confirmed macular degeneration has started

the right eye has a lot of scar tissue, also CNS involvement

Been put on Rituximab as the replacement of Humira.

Sadly I contracted covid just days after the infusion .

Things finally reach an emergency covid had cleared but felt even worse

was lying on the bed the next thing I had mum looking down screaming to wake up

I had fallen off the bed my neck hit the ottoman 999 had been called

given the situation they decided i had to be moved

after 3 liters of oxygen my saturation level was 90 %

temp 38.6

BP 179/110

having had sepsis 3 times she did the test and it indicated Sepsis on the scale of 6.

taken to the new unit at the hospital just half a mile away and it happened again

even with all the evidence the doctor had looked at the old notes and orders

NO IV, Treated with utter contemp..

my new consultant and written to them to state no med change until

we see how the new plan goes.. this one stopped everything.

I was so out of it I had no idea. For days no Thalidomide

or core drugs that stop those symptoms that are heck to treat

Genital ulcers back, my abdomen wound is open

Turned out its Flu. So just after clearing covid this happened

I just need advice please, It never inspires confidence when they say "Behcet's what's that"

in all honesty the NHS website which most look at that ropey.

He suggested my 60 MG of prednisone was causing me to be psychotic

I could barely speak he pulled the pillow from my head by now the neck had swollen and I passed out it was like as a child being on a roundabout then jumping off

this kept happening if I turned my neck to the right.

The nurses were amazing they admitted never heard of Bes but all went to read up on it

the level of care I had from them was 10/10.

They call us "professional patients" we know what that means = trying to be Doctors

but I made a rule long ago I will only talk about symptoms they need to take action on.

been given tami flu and its helping but my poo is now jet black like tar.

I cannot believe he took it on himself to just stop everything

cutting steroids alone is...

So the reason for this post, how can i show these people something that gives guidance

as the Behcets card was actually throw with utter distain by one of the previous visits.

They have all the updated files something my late father said would not make a difference

sorry if this sounds OTT but what happened was the worst yet for me I really thought I was dying

it was the 20 minutes totally blacked out was a new one the floor around me was just a puddle of urine.

Sorry if this isnt making sense the good news the non emergency plans are working

getting the Thalidomide every 3 months and as my new consultant wants something done like the infusions and scans they are.

The problem is 999 admissions its actually getting worse.

What i have learned even if you are jabbed for this years Flu it appears a lot of people

are very ill with it, People are saying they have this virus and the consultant told me when they are tested its flu they hospital is packed with patients with it.

[Oathy]

Just an update, The health board have finally added the Behcets information pages to my record, It appears to be this basic, wards have 2 computers and with it being so busy a Doctor if they cant get access to the PC they use the paper notes, The paper notes have none of the warnings and flags on the PC system. They tried again to suggest heads of dept have been informed it wont happen again, its the same answer they have used twice already this time I told them there was no excuse a new consultant is on hand to advise, my former consultant has already said he's making himself available to talk in an emergency as twice they have even questioned if he is real, I actually cant believe I am writing this. Its not excusing them but I do think the NHS site they rely on is lacking, when the nurses asked me where they should look and I told them about the Behcets website they all agreed it gave much better information.

That's how they spotted the skin breaking down and ulcers forming.

The real kicker the Consultant who was supposed to be the local hub for these events is on leave which is fair enough, he did reply to an email i sent but it appears he might not be coming back at all. A new consultant who I met already openly admitted he knows nothing about the condition at all. I've had to shut down over this because these events I had no control over, locally it failed and even if I was still going to London they would not have made contact, its like a little bubble has formed and no matter how many letters are on file or PC

they will do as they see fit, Its now with the MP again and she is asking why all the safeguards

they promised my late father have totally failed.

[Dolly-D]

hi Oaty, oh my goodness , you have had an awful time by the sound of it… I do hope your on the mend!…my Bechets kicked in at 17, 40 years ago, I got admitted to hospital as they did not have a clue what was wrong with me….(not much changed over the years ) 😄…. Joking!…. But at the age of 38 I was diagnosed by a visiting Doctor, who actually knew about Bechets ..hallelujah … eventually I was put under a consultant at rheumatology .. all they offered was steroids…. I refused, as I don’t like medication and certainly not steroids…

One day I woke up, and I could not see clearly in my left eye… I went to the emergency eye hospital. And I had been diagnosed with macular degeneration …I had to go in everyday the first week then every week, then once a month… after six months my sight was back..hooray!

My consultant put me on colcochine 5mg twice a day… I had severe headaches, numbness in my fingers, and yes it worked on my ulcers a treat!

But the headaches I could not bare… since then I only take the colcochine if I start to have a flare up…. And only then… my daughter has the condition too.

I hope your on the mend🙏🏻

[Oathy in reply to Dolly-D]

Thank you so much for sharing this.

it's helped a lot I still cannot believe they are doubling down on how it was handled

now both my former consultants over 24 years have written letters and actually confirmed no they are real, The MP's secretary just looked stupid this was even needed. The one that recently left had a treatment plan and he's put it in writing instead of messing with things they don't know about, this is the plan to use if i go in via an Emergency.

He's solely private now and done it pro bono . he's actually suggested putting my colcochine to 5mg now, dropping azathioprine and starting the mycophenolate my new consultant wants to try. The letter he's written cant be any plainer, my old Gastro consultant is furious and his just reads "No I am real just check out the books i've written" He's a man who used to make Doctors under him soaking wet with fear but they all went onto be top doctors around London