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Went for me hosp appointment on Tues.  An endurance test that wiped out half a day, I was there for nearly four hours.

I walked into OutPatients and it was packed, heaving.  If they’d thrown in some deafening heavy music it could’ve been an out of hours nightclub, filled with people (flags of all nations) all feeling slightly out of order and there with a common purpose.

I went to the console to check in and tapped my name, date of birth into the automaton.  Then it asked me to confirm my address, which it had got wrong and, as I didn’t have administrative rights, refused to change at my command.   I went to the desk.

There was a long queue for the desk.  On the wall behind it was a hand written notice saying “waiting time 2 hours”.  First time I’d ever seen them put up a notice like that.

I stood at the end of the queue and the Senior Sister spotted me and came over,  suggested that I didn’t have to wait there,  I could sit for a while and the queue would die down.  I thanked her for her consideration (I’m always surprised that she recognises me and addresses me by name) but I was ok with queuing.  Politeness stopped me from observing there was nowhere to sit, the joint was that packed out.

I got the admin done and then it was a half hour wait for the weigh-in.  My stats are weight 71.1kgs (just over 11stone) , blood pressure 146 / 90, which the techie volunteered was “v.good” so gawd help what everyone else she saw’s bp was like.

Back to the waiting area and before long a seat nearby became available, so I squeezed in among the sardines and it was standing room only again.
The Head Honcha kept appearing and calling out a name, it was unusual to see her there that early.


After 2 ¼ hrs some guy called my name and I followed him to a consulting room.  He introduced himself and I said he was a new face to me, was he now on the team ?? 
He said he was doing a research fellowship and a side effect of that was that he did the clinic there. 

He said it was a vasculitis clinic and I was out of the run of the mill for him.  (According to the stats I’m one of abt 80 people in London with my complaint.) 
He seemed quite excited to have me and we had a long chat.  We got off to a bit of a dodgy start as he said my problem was my kidneys and I replied I thought they were a symptom but we both let it pass.

He consulted screens and notes and then screens again, cursing under his breath as he tried to click on things and got the wrong things up.  I can be v.sympathetic abt this sort of thing.

He tells me that I’m still leaking protein into my urine, abt 1gm a day, which is one tenth of what was going into it when I was admitted but I’ve been at that level for some time.  It looks like I’m always going to be at that level.
I said I’d been told at my last consultation that I was in remission.  He said I was in partial remission.

He added that this was something that didn’t look like it was going to heal and a kidney transplant wouldn’t do the trick.  I told him I wouldn’t go for that anyway for philosophical reasons, I have enough trouble with what I’m going through already.

So I asked him if this protein leak (it’s news to me !!) was causing my lack of energy, though I’m much better than I was not so long ago.  I have good days and bad days.  I’m still eating like a horse. 
He said yes,  I must have about half the energy that I should.

I also told him that I get a lot of pain in my knees and ankles, that my lower legs feel like they did when they were swollen, though they’re not.
He said this wasn’t how anyone else with my condition and treatment felt.  Had I mentioned it before and what was the opinion??  I said yes and that all I got was the metaphorical shrug of the shoulders.

He opined that I may have a nerves prob there and would refer me to a neurologist, it’s always good to get another opinion.  After talking to him I definitely concur on this.
He said as I wasn’t an urgent case it’d prolly take some time before they’d see me, so I’m guessing it’ll be next year.


Come back in three months.


I went back to the waiting area which was no longer “standing room only” for a long wait to donate six vials in the vampire room.
Then out after 3 ¾ hours.  An all time record.


In summary,  I’m not going to get much better than I am now and I’m always going to have medicate.  In his opinion.

And, as he said,  “it’s always good to get another opinion”.


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