Update of disaster graft saga

[rosemary johnson]

Today's news:
was indeed sent to wrong dept of neurology hospital - except the bloke in question can't see that. Repeated all the same tests of the things where nothing is wrong, not interested in me tellin ghim what the problems are. GRRRRR!
Complete waste of F'ing time!!!!
Well, not complete, cos after expressing opinion to various people and getting various degrees of dubiousness, gave up on them and found my way to private patients department.
Oh, the cahnge in reaction you get from people talking to someone they think might be about to give them money!!!!!!!!!
I now have the name of the person, and phone number of his PA, that I apparently ought to be seeing. Been trying to ring PA to confirm this and get estimate of price. Only got the answering machine, so will see if get a call back; other wsie try again.
WIll see if other member of GP team will refer me to me next week. Otherwise have to see what pennies can rustle up.
Have tried to ring the Barts endocrinology number, either permanently engaged or answering machine. WIll try them again on Monday.
DPA office says I have indeed made a valid subject access request and GPs have 40 days to respond; and that I do have the right form to complain to them on, but I should write to GPs surgery first.
Local PCT complaints person has rung my GPs and stirred them a bit, and says to ring back if not had a call back from practice manager by Monday afternoon. Will see what that does, if anything!
Complaints person also tells me very pointedly that, if I'm still getting chest pains, to call NHS direct, who should be able to tell me whether I need to relax and chill out or whether they will send ambulance for me. Well, that's better than calling 999 late at night to be told I'm paranoid, so will do so.
Have had very interesting conversation with nice Scottish lady who answers the phone for the Centre for Vision.
I think someone(S) on thiese forums have been there? - would be glad to hear your impression if that's you; by PM if you'd prefer.
Meanwhile, have rung up and entered for the Ridign school's Dressage Club event next Friday evening, and booked in a practice lesson. Just hope I manage to make it and not be in hospital having a heart attack - or a nervous breakdown at the dificiencies in the NHS!!
Sitting in a hospital waiting room trying to learn one's dressage routines is one way to make the time pass - NOT!!
At least the Queen Square WRVS snack bar have some decent filter coffee - not like some of the "Americano" watered-down espresso junk some places sell for a small fortune these days. Last one of those I accidental bought tasted like someone has poured some hot water onto the black scrapings stuff you scrape off burnt toast when it was the last piece of bread you've got and you're starving.
Didn't manage to get out to the stables to see Duke today after all; too stressed out on the phone all afternoon trying to get some health care sense out of anyone!
Thoroughly fed up with all of this!
Still not decided what to do about eye appointment next week......
ANyone any ideas how to get any sense out of the health service? - or at least any health care????
Rosemary

[Barbara Davis]

A private consultation might be a good move - depending, of course, on the doctor. It need not be too out of reach financially as even just one, one-hour, consultation might be very useful. Several people I know have done just that when NHS appointments have not allowed enough time to address their concerns satisfactorily, such as my mother and godmother. Both were told all the available options and pointed in the right direction for further help. Also (and I'm only guessing here) I imagine private consultants are not in the habit of seeing NHS notes so the fact that yours are missing and of dubious accuracy may not be a problem: you would start with a clean sheet.

My other observation concerns Cushings again. (Please don't think I am trying to say you definitely have this; it's very rare. And I am not - repeat not - trying to tell you about your experience as you accused me previously. I am trying to tell you about *Cushings*, which saw at first hand over many years, not about you.) But has it occured to you that your chest problems - including the palpitations and needing a bigger bra - could possibly be a symptom of Cushings? They sound very like the experience of my friend who had it. Counter-intuitive though it might seem, they could also link to the comments you have made about getting dehydrated very easily. Cushings can mess up your electrolytes such as sodium and potassium levels which partly control water management, so that you constantly need to drink to prevent yourself becoming dehydrated while actually retaining fluid.

It's a long shot, simply one I suggest you bear in mind. For example, if you talk to NHS Direct, naturally enough they will focus first on the most obvious answers so it might be worth being aware of other possibilies.

[rosemary johnson]

Agree might be useful - if all too sad after 61 years of NHS it seems the only way to get any sense.
grrr again.
Question is to find the right person/people.
Yes,I am all too well aware that heart probs can result from Cushings. I think mine is some sort of PSEUDO-Cushings caused by hypersensitivity, but can still put pressure on heart. Also kidneys. Also bones, through osteoporosis which runs inthe family anyway.
That why am so keen to get to see right eocrinologist - and so pee'd off no-one at GPs is remotely interested in actually doing any health care!!!!!!!
Tell me about mineral levels too - comes under Addison's in my book...... but have noted alternate cravings and revulasion for salty foods and for bananas (potassium rich) - and periods of feeling queasy and not like eating at all. Must be something badly wrong, RFJ off her grub......
Not even Duke has shown the slightest sign of being off his food, with all his hoof problems!
Dehydration: yup, that too......
BTW, I thik most of my dehydration probs is because I tend to breath slowly and deeply and from the diapragm an dmainly thorugh my mouth (cos nose bunged up with h*y f*v*r!) which dries out the airways and sets of "Help! need water!" signals, even if reest of me isn't all that dried out.
And explains why I can be working away all day out in a cold damp misty field and not feel dehydrated, yet feel dried out and hasping for water and headachey very quickly in hot dry hospitals.
SLow deep breathing mainly from diapragm probably owes a lot to a youth spent playing wind instruments, singing, etc. WHen in training (!) I could outlast almost everone in the choir at holding onto one long note as long as we could, and really struggle with the peak flow meter in the asthma clinic - blowing out as much as possibly as quickly as possible contrary to all training!
As regards finding right person to go private to - I'll ring you tomorrow.
Meanwhile have jsut sent off email to centre for sight. WIll see what response I get - interesting, at least.
Rosemary

[arlyn9391]

Agree might be useful - if all too sad after 61 years of NHS it seems the only way to get any sense.
grrr again.
Question is to find the right person/people.
Yes,I am all too well aware that heart probs can result from Cushings. I think mine is some sort of PSEUDO-Cushings caused by hypersensitivity, but can still put pressure on heart. Also kidneys. Also bones, through osteoporosis which runs inthe family anyway.
That why am so keen to get to see right eocrinologist - and so pee'd off no-one at GPs is remotely interested in actually doing any health care!!!!!!!
Tell me about mineral levels too - comes under Addison's in my book...... but have noted alternate cravings and revulasion for salty foods and for bananas (potassium rich) - and periods of feeling queasy and not like eating at all. Must be something badly wrong, RFJ off her grub......
Not even Duke has shown the slightest sign of being off his food, with all his hoof problems!
Dehydration: yup, that too......
BTW, I thik most of my dehydration probs is because I tend to breath slowly and deeply and from the diapragm an dmainly thorugh my mouth (cos nose bunged up with h*y f*v*r!) which dries out the airways and sets of "Help! need water!" signals, even if reest of me isn't all that dried out.
And explains why I can be working away all day out in a cold damp misty field and not feel dehydrated, yet feel dried out and hasping for water and headachey very quickly in hot dry hospitals.
SLow deep breathing mainly from diapragm probably owes a lot to a youth spent playing wind instruments, singing, etc. WHen in training (!) I could outlast almost everone in the choir at holding onto one long note as long as we could, and really struggle with the peak flow meter in the asthma clinic - blowing out as much as possibly as quickly as possible contrary to all training!
As regards finding right person to go private to - I'll ring you tomorrow.
Meanwhile have jsut sent off email to centre for sight. WIll see what response I get - interesting, at least.
Rosemary

Is it because of food or because of water that is why saga experienced that kind of disaster?




_________________
Ge mwf

[Andrew MacLean]

arlyn9391

Welcome to the forum

Andrew

[rosemary johnson]

SOrry arlyn; not with you. Can you explain more fully?
Welcome, by the way.
Rosemary

[rosemary johnson]

Hospital today:
IOP back up to 24 (in grafted eye). Oh dear. Was 10-12 before.
Glaucoma consultant aparently (didn't see him myself) doesn't think he needs to see me - thinks I tolerate 24-25 OK. Go back in August as scheduled to see him.
Eyes both feel very red and sore and horrid. Apparently they don't look too bad to a pro.
No news on getting rid of STITCH!!!!! - have said again I'm not going to spend my life as a walking echibition of That Man's Oh-so-precious embroidery that was so precious it was "worth" giving me brain damage for, even if I do have to cut it out myself.
Nothing really new.
Spared the task, which I didn't feel up to, of having it out with new consultant about That Letter to ex-GP over which I hit roof. Well, didn't feel up to it, but that means I have it still for next time.
SPared task, that is, as didn't get to see her at all.
COme back in August.
Thoroughly run down, just wanted to come home and cry.
I HATE GOING TO THAT PLACE!!!!!!!!!!!
On other fronts:
having been burning up a small fortune in phone bills ringing round various other hospitals etc trying to find who is the right specialist to try to get a GP to refer me to.
Endocrinologists, I seem to be getting somewhere about. Two names and a place, and figure of 294 quid for a private consultation if give up on GP.
That's hopeful...
Neurology is going in circles - thought finally got a name who sounded hopeful, but when I rang his secretary to double-check and to ask what dept and what price, got very iffy response, told to talk to GP - she thinks I'd too thick to have done that already????!!!!! - and talking of 800-1000 quid including tests.
AARGHHHHHH!!
Meanwhile, got home from riding lesson (meant to practice for next dressage club event, but a huge mix-up with that oer entries, why do these things have to follow me around??!) to find on answering machine
1. message from complaints person at PCT wanting further info about why I'm complaining about GP doing nothing
2. message from GP saying he'd ring tomorrow.
He hasn't, and needless to say neither rang mobile, despite me leaving message for GP to do so.
Back to PCT person tomorrow - only answering machine when I tried, before setting off for chiropractor's.
Thre cheers and more for chiropractor!!!!! - he put my dodgy neck back in with three clicks, the toothache that moved round my jaw as I moved my head has gone like that. What's ore, I phone twice to moved the date and time and got only helpfulness, and when I walked in, friendly receptionist said "Hallo Rosemary" and gave me the record card and room tag and told me to go straight through. Friendly, helpful service with a smile and it does the job, like that.
Amazing what you get from people who know they have to ask you to pay for it, innit?!
rosemary

[rosemary johnson]

ARGGHHHHHHH!!!!!!
I was only at the bloody hospital yesterday.
Last place I want to be tomorrow am is back there in A&E.
Definitely the last place I wanted to be this evening was back there in A&E - so I'm not.
(Actually, last place I want to go is A&E, what with That Stupid Latter to ex-GP that I've complained about as the top item in the file that will be the first thing any A&E person sees about me!!!!!!
ight eye (the grafted one) is horribly swollen. And red, and sore and ;......
All thee bit between eyelashes and eyebrow all round top of right eye is hugely swollen and bright red and feels horrid. Plus round each end of the eye. Eye it self feelshorribly dry and itchy, despite streaming periodically.
eyeball itself, they ask me: well, it looks horribly red and feels sore to me, but then it does during the hay fever season, and none of the "prod" even seem worried about it, however sore I say it is.
I think I got bitten by some INSECT!!!!!! while I was in the arena evercising one of the Little Shits this afternoon.
Little Shits = miniature Shetland ponies. 28" tall, and more of a nandful than some horses three times his size.
Didn't realise it at the time, though there were certainly lots of flies buzzing about.
Finished exercising said Little Monkey, put him back in the barn, and went to get some tea, and the other people at the stables said my eye looked terrible.
Went to peer at it in one of them's car wing mirror.
It did.
Went to get Anthisan out of my rucksack and put some of that on. Didn't make much difference.
Been getting redder and more swollen all afternoon.
Other people at stables telling me to go to hospital.
Put on more Antihisan.
Got home, collected season ticket and went to Pharmacy to collect prescription, buy more Antihisan and ask if Pharmacist could suggest anything.
Pharmacist says: go to doctor's. Go to Polyclinic, open at 8am, drop in GP service. DOn't use Anthisan near eye.
Come home, phone hospital, ask if A&E open (yes, it's 24-hour) and can I talk to someone to ask for advice.
Said someone suggessts cold compress and painkillers. Have by now had some ibuprofen, for anti-inflammatory effect. Doesn't seem to be doing much.
Said someone asks if I don't have any antihistamine tablets. No - tried some last year, but they left me feeling like I was about to drop of exhaustion and trying to keep going on black coffee - to tired to think and too wired to sleep. And no noticeable ffect on hay fever.
Says can't I come in now? - ARRGHHHH!!!! - now getting on for 11pm. If I trek in there now, by the time they've discovered my notes are missing, aske dme how much aI can see, then sent me to someone to see what the problem is, there won't be any more tubes running to get home. Thought of wondering round town trying to find a night bus home, in the dark as lone female, clearly vulnerable as can't see a thing - no thanks!!!
Says morning shift start at 8am, come in then.
Warrrghhhhh.
Tried pad of cold wet kitchen roll, also some freeze-gel. Still very swollen, feels horrid and exuding goo. Yuk!
I always swell up hugely and weep and itch maddeningly with insect bites - some more than others.
I suppose this insect ite will eventually go down as they usual do eventually.
Possible risk such huge allergic (?) reaction so close to transplant might spark off rejection or other nasty.
(NOt much to do if it does; too hypersensitive to steroids to tolerate the meds to turn a rejection episode round.)
Very big probability this is sending my cortisol (body's own steroids) level soaring,and will be getting all the hallucinations and steroid adverse reaction symptoms coming on.
Expletive deleted
(as Richard Nixon didn't actually say).
Needless to say, no further calls from either PCT complaitns person or from GP.
Except.....
When I went up to the pharmacy, I also had a repeat prescription to collect.
I'd gone into new GP's last week, with a photocopy of Rx counterfoil from last prescriptoin I'd had. I'd ticked the one I need now, even drawn a big arrow to point to which one I wanted this time (and added a note to ask if they could put as many of the scrip as they're allowed to,a s they are only small containers (asthma inhalers, these are).
Pharmacist gave me a huge big bag.
Blow me down, he'd only gone and prescribed every single thing onthe counterfoil!!! - every drug I'd had prescribed inthe last year, including all the eye drops I don't use any more,and the steroid asthma inhalers I can't use any more.
Doesn't he understand the idea that each item has a little tick box before it, and you tick the one you want???
I do not believe this!!!!!!
Gave most of them back to the pharmacist. Is this what I am paying my taxes for??
Tell me something: does this sort of thing happen to other people, or it is just me that gets follow about by this stuff?
Rosemary

[rosemary johnson]

Well, guess where I've spent half of today?
- yup sitting in A&E!
Eye even more swollen and sore and stuck up with yukky goo this morning, an dcould hardly open it, so decided I@d better trek in the That Place.
Eventually, saw the same nice guy who'd first discovered my IOP was rocketing last summer.
Extremely glad to see a pink temporary notes folder - ie. my normal notes still out after clinic apptmts last week. Much less pleased to find it contained new print out of whole pile of letters. At least he was reading the letter from the glaucoma clinic not That Latter.
Verdict, after all that:
yup, I do have an insect bite. Do not put insect bite cream on it - anthisan that close to a graft not a good idea.
It isn't infected - if it starts to get sore like an infection, come right back pronto.
Eye itself looks OK, just the surrounds look like I've come out the worst of five rounds with Joe Calzaghe.
Two options - 1. do nothing and wait for it to wear off naturally, 2. antihistamine tablets.
Explained history with antihistamines and he's given me prescription for a different type - which shouldn't dry my eyes out, and it is "try and see" whether they'll leave me feeling exhausted and unable to sleep.
Meanwhile, try old-fashioned approach of cold compresses - will save up used tea bags and put them in fridge for the purpose and try to find what I did with hot-or-cold pillow.
Did manage to get eye open after a fashion.
Shot off back home and round to new GPs - appointment with different member of practice; alas, she has read up computer and doesn't want to do anything her more senior partner has once touched, listened to what I said endo problem is, all she'll say about it is that she'll have to talk to him and they'll get back to me.
Said I'd heard that so many times I'd lost count! - said I hoped she could be the one to buck the trend, but meanwhile was wondering what on earth I paid my stamp for all these years, and whether I had to find myself in intensive care having a heart attack before I'd a hope of getting any health care.
Told me, she wasn't able - or willing - to deal with neurology appointment being wrong place, I needed to see practice manager.
Came out to find someone else as pissed off as me, by the sound of it, complaining heartfeltly about shoddy treatment given to her mother.
Brief and looud indignation meeting!
have appointment booked with practice manager 12.30 Monday. Hope she has something sensible to say for herself. Like Sorry for starters.
Needless to say, not heard a birdie from anyone there, despite assurances they'd be in touch this afternoon.
Came home and rang PCT complaints people again - voicemail message while I was in hospital; only answering machine whenever I ring.
Get definite bives this GP's surgery not a happy place - was more than one practice that joined to form one big "team" for new centre, but get distinct impression the younger and better ones arenot that happy about some of their new allies.
Have had impression in the past that there are some of them who agree with me (and the other person complaining today!) about the things we've said are unacceptable, but it's more than their job's worth (!) to say so.
Contemplating approaching MP!!! - who did stir up hospital a few years ago over issue of whether they had to charge me for piggybacking soft lenses and why they couldn't do anything at all because the didn't know. In the end got not only two letters of apology from then-chair-body (albeit both address to Dear Mr Cohen) but also refund.
Took several bitchy digs at his casework assistant along the lines of "Of course, I suppose he's not going to do anything or a consistuent who's not 100% behind his pet Olympics scheme, is he?" to get him moving on that (illegal under Representation of the People Act if that were true. Casework assistant in quesiton herself now prosecuted under the R of the P Act an dbanned from public office.)
Is this what I pay my stamp for????????
GOt changed, went out to riding school for latest in Dressage Club competition series.
Now have pretty two-tone green rosette for coming fourth in the first class of the evening (out of 9).
Have ridden better before; have ridden worse. Rding a horse I'd not ridden for, oooh, 18 months before practice session on Tuesday.
All good experience. AIm to improve on it next time.
Probably a first for the dressage club - how many times before, I wonder, has anyone spent half the day in A&E and then won a green rosette?
Rosemary

[rosemary johnson]

Well!
Still look a bit like I ran into That Certain Surgeon up a dark alley the other night!
Just in case any of the Persons in Blue are reading this, and in case he's late for work on Monday, NO, I DIDN'T!!!!
SStill rather swollen, and the bite is weeping and leaving goo rund the corner of my eye.
Bit better than yesterday.
Trekked back up to hospital to get prescription I didn't have time to wait in Pharmacy for before shooting off to GP's.
They don't stock it.
Went back to A&E. They don't have a stash of it either, and tell me I can buy it over the counter.
If it is one of the new and allegedly non-drying non=drowsy variety and is available OTC, than by me recent reading of the online BNF, it is pretty close to the sort I tried last year, didn't do much good and left me with the feeling of being knackered and trying to keep going on black coffee.
SO probably not going to do much good either.
SO that's a waste of a morning! Grrrrrrrrr. NOt to mention that I picke dup the prescription from my routine apptmt on Wednesday. Realised I'd come out without the wherewithall to pay fo r it (duh!!!) and was going togo back later, and then realised I hadn't looked at it properly at the time and one of the items was wrong.
Took it in for the other two items, as I was going, rather than try to pop back next Weds to sort it, and got other two items. But now cashed Rx so can't sort out wrong item till next visit!!!! and it was that one was most urgent.
Complete waste of morning!!!!!! Grrrrr.
Off to stable yard now - see how Duke's feet are, and whether the New Arrival has arrived yet.
It has looked like it was coming any day now for weeks.
This is Lexi, the black Shetland mare who had to be rescued, along with chestnut foal, from the motorway verge where they'd been abandoned, about 18 months ago. We are waiting to see what colour the foal comes out to see if this indicates which of the two Little Horrors I've been exercising might be the father.
(No, it isn't Duke's! - Lexi looks big enough for it to be, but he had the little operation years ago.)
Rosemary