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rosemary johnson
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Latest news from a part-tiem regular

Postby rosemary johnson » Sat 01 May 2010 9:34 pm

Hallo everyone! - notbeen on here for a while, thanks to a combination of computer problems, busy-ness and tiredness and things like that.
Latest news -
WOnderful last couple of days - arrived home a 0 to one in the morning today, from Moorfields A&E.
What a wondeful place to be spending a hot, tired and itchy evening...
But a good thing I decided to pop in, as he stitch in my graft had broken.
No wonder it was sore, misty and exuding yellow goo!
I is/was a single 16-point running stich. It had broken at about 12 o'clock, and one end had worked loose and was sticking out and rubbing. Nice young man in blue scrubs cut off the protruding end bt,ut in a lot o
of anaesthetic and and antiseptic eyes drops,a nd prescribed a week's supply of antibiotic ointment.
Still ever so sore and itchy and exuding yellow goo all day.
If it's not feeling better by lunchtime tomorrow, I'm intending to ring up A&E and ask if they think it normally takes this long for a scratch caused by the loose end to stop being so agonising, or should I come back and I go back and see if any more has worked loose and is sticking out and rubbing.
Anyone here had this happen with a single running stitch? - if so, how and the end had scratched, how long was it painful for?
I now have a 15-nd-a-half point running stitch with a gap in it.
And got home very very tired and desperately in need of LOTSS OF CHOCOLATE!!!!!!
THe good news is that That Certain Surgeon's handiwork is no long in is state of beautiful embroidery in which he left it - and whether it is in fact doing anything useful having the rest of it there the young man couldn't tell me.
Hallo everyone! -- not been on hTHe bad news is that the rest of it is still there, whether doing anything useful or not, and may work free in future, if not yet.
What this implies for my chances of getting therest of the Horrible Thing - theat bloke's embroidery exhibition, I mean, not the donor piece - removed remains to be seen too.
Have been asking my new consultant when the stitch can come out, cos I'm not happy having it there after the disastrous experience of the operation, for ages, and she's been not at all responsive to this request
Can now, of course, say if she hadn't been so hostile to my perfectly understandable request to remove the thing that is so hated if it is not medically necessary, wouldn't have had the problems and pain of it breaking.
Big standoff last appointmnet. Am thinking of getting referred to anyother hospital - only question is what happens about contact lens provision if I do.
Am currently dosed up on ibuprofen , plus the eye ointment, and feeling rather fed up.
Other news:
Have, needless to say, not had anyone willing to give sensible answer to how I get the transplant itself taken out. Keep saying: nothing against the oopoor guy it came from...
Getting nowhere with the neurologists - the MRI scan found nothing to account for the problems - amazi
this is, of course, a complete bummer and v v v disappointin - and the .... person.... wrote to say she was "delghted" to tell me.. and trusted I'd be reassured.... what planet do these people live on????!!!!
Am still having probelms with intermittent balan problems with keeping balance - or more to the point, understanding strange sensations of being in motion, and with recalling names. Still don't dare to try any course with an exam, what with problems recalling names (of things not just people) in an exam.
Am now wondering if these too ar j steroid-related.
more to follow
Rosemary

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Re: Latest news from a part-tiem regular

Postby rosemary johnson » Sat 01 May 2010 9:47 pm

The endocrinologists referred me to a CFS speciialist - still not sure why, bt saw him. He doesn't know if this cold be classed as CFS either! - by "this" I mean the ongoing muscular ewakness and qick-to-fatigue lack of stamina left by the steroid meds. However, they doo seem to get worse again with any more steroid input - these days, this means increased levels of my own steroid hormoneswteroid hormones if/when I get ill. And have had several bits of "lurgy" over the winter.
Plus the dratted dentist!!!! who stuck an injection into me that contained adrenaline, despite he ought to know full well he really mustn't do that ever again!!!
ANother formal complaint I ought to be writing!!!!

CFS person is, at least, quite sure that the "hallucinations" are most definitely NOT post traumatic stress disorder or anyting like it. Which is a relief at least.
Still not getting anywhere with finding out who it is who knows about steroid adverse reactons perso. Maybe cos most people who mght react badly to steroid meds in/after transplants are pretty ill and weak before th transplant, that's why they need one.
CFS person referred me to their physios, who seem most unlike anything I understand by physio, haven't yet said anything I hadn't worked out for myself over 2 years ago (keep doing a little more and a little more, nd don't overdo it all at once) and seems to talk to patients as if they're all idiots.
Have one more appointment booked, will suggest we'd get on much better if she were actually willing to treat me as haivng more than one brain cell, but so far it's a waste of time. And live in hope.
CF person also said one of main causes of difficulty with rebuilding strength (apart fromt he dentist) is problems sleeping, as muscles recuperate in sleep as wella s brain! - sounds plauible. But he then suggested various "sleeping meds" all of which on closer consideration are likely tory up the eyes and make contact lenses impossible, so that's not much help!
FOllow-up appointment got postponed as the tube was suspended when part way there and I wasn't going to get there.
Asthma is still doing fairly well on the new regime - that's a relif ef at least.
more to come
Rosemary

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Re: Latest news from a part-tiem regular

Postby rosemary johnson » Sat 01 May 2010 10:07 pm

The really, really bad news of the last few months is that Duke had to be ut down in January.
I'd been leasing a part-share in him (THursdays; a time-share) for almost four years.
He'd had probelsm with his feet all that time, and they finally got athe better of him, poor chap.
Long story. All very very sad. From all accounts, I'm sure his owner made the right decision.
Ironically, the antiseptic eye drops the guy in A&E was using last night were the same stuff as one of the things we'd been using to scrub out his infected hooves......
Meanwhile.. Ollie is fine. He was 10 months old last weekend, and has grown into a big sturdy little pony already, and one with a big strong willpower! And his baby winter fluff is starting to come out in handfuls when I groom him - he'll soon be a slim sleek little pony too.
He had his feet trimmed by the farrier yesterday - fo rthe fourth time! THe other foal at our stale yard hasn't bneeded one trim yet and he's just over a year old. The farrier says he donesn't know another foal like him for fast-growing feet!
I'm now riding a new horse called Chloe . This felt very very strange after riding Duke for years - emotionally, I mean. But if it hadn't been for Duke, I'd have given up riding, and rpobably horses altogether, so often after the graft op when I felt so ill and my balance was so wrecked by the anaesthetic, and my health as a while.
It's only thanks to Duke I was still riding, and around horses at all. THat's, in a way, his legacy to me. And I told myself I wasn't going to throw away his legacy cos he was no longer with us. HOwever odd it may feel to be riding someone else as my regular ride....
SO I now have a loan on CHloe, and ride her when I can. We've been up to Epping forest a few times, and even done a bit of jumping, and are getting used to each other.
Ironically..... she has a sore eye. SHe's had problems with blocked tear doct, and with red chapped bits down the side of her face where the tears had run down her face inthe cold weather. SO part of the daily jobs are to clean he eye with wet wipes/tissues, put in the same sort of - ironically! - steroid eye drops that humans use (the bottle fromt he vet says not to wear contact lenses while using the drops!!) and put vaseline round under the eye to stop chapping inthe cold..... etc. And I now have a handful of fluoret tabs - yup, those yellow dye things were all used to having used on us -!! - to test if the tears are going down her nose in the proper way from time to time.
Chloe is a snow white horse with blue eyes - and loves going out in the field and rolling inthe muddy bits. I must be a masochist!!!!
I've also been driving some of the ponies, and have been getting lots of chance to get fit, and plenty of useful experience (!!!!) trying to look after the stable yard while the proprietor has been off ill and in hospital. And all through the worst of the snow and ice!!! It's been a struggle - and hence not being on line too foten, as I was comin ghome exhausted......
Probably no tth ebest way to get fit gradually, but I was starting to think I was getting some fitness back - until the bloody dentist and his adrenaline intervened!!!!
Sorry not to see everyone at the AGM - at the time, didn't feel up to it (some of you may read more into that, I think....) but hope to see lots of you at future group events.
OK, will stop rabbiting and go and put more ointment in sore eye.
Rosemary

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Re: Latest news from a part-tiem regular

Postby Andrew MacLean » Sun 02 May 2010 8:18 am

Rosemary

Thank you for taking the time to bring us up to date, and welcome back.

I'm sorry to hear about Duke; I know that you felt every part of his struggle.

Keep battling! Always fighting maybe means sometimes winning. I reckon that's good enough for me! :D

Andrew
Andrew MacLean

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Anne Klepacz
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Re: Latest news from a part-tiem regular

Postby Anne Klepacz » Sun 02 May 2010 10:41 am

Welcome back Rosemary!
Yes, I had a running stitch in one of my grafts which snapped. I went to A&E and as far as I remember I was on the operating table the same day having it the whole stitch removed (under local). So if it's still sore, I'd definitely be ringing A&E or going there. All the best.
Anne

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Re: Latest news from a part-tiem regular

Postby Vic » Sun 02 May 2010 9:48 pm

Rosemary,
Sorry to hear about Duke.
My continuous stitch came undone late one night (why is it always late at night when you have to muddle your way to A&E in the dark?!). I had the whole thing taken out at the slit lamp under local anaesthetic that same evening. With the benefit of hindsight and more experience, it seems that it's more unusual to have a continuous stitch taken out there and then at the slit lamp, and I certainly know that the doctor who did it for me was very junior, which may have played a part in why it was attempted that way. Although he did a sterling job, got it out after several repeat rounds of anaesthetic drops and breaks for both him and me. The relief on both our parts was palpable once the deed was completed! It was predictably uncomfortable but certainly tolerable. I'd had the end of the stitch sticking into my eyelid for about 12 hours, and it took a couple of days for it to become less sore, although at that point the whole eye felt a bit mauled after the stitch removal. Maybe they're playing a bit safe because (I assume) you just have the one stitch? I had a mixture of interrupted and continuous, not sure why, but I still had about half of the interrupted sutures in place when the continuous suture came undone.
Vic
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Re: Latest news from a part-tiem regular

Postby rosemary johnson » Sun 02 May 2010 10:59 pm

Thanks for the replies.
It was still feeling itchy, like a bit of grit under the upper eyelid, this lunchtime, so I rang, and was advised to come in again, so I did.
Another long sit in the waiting room.... but at least I know th eropes enough that the first thing to say is "I had a transplant....2 and they reach for the pink forms straight away!
First person had long look at eye under slit lamp then called her superior.
eventual outcome is that they don't think it is rejecting, and don't think any ore stitch has come out and started rubbing - but there is quite a bit of abrasion where the first bit that came out - and got snipped off flush on Friday night - rubbed quite a bit.
I'm now on stronger antibiotic drops, hourly whilst awake - arrgh!
A*E senior person looks rathe runhappy that I refuse to be given (well, refuse to use; they can GIVE me some if they must!) any steroid eye drops cos of adverse reactions to steroids.
They both look decidedly not too happy when I say I'm uneasy about the idea of full-scale immunosuppresant eyedrops as the steroids I was on before have affected my kidneys so the kidney function readings are not hormal, and don't want immunosuppressants affecting idneys.
Verdict is to take the hourly antibiotics for next two days, come back 12.30 Tuesday, check in at A*E reception where they will "walk me through" to the regular clinic to see the regular consultant about where to go from here - like, take rest of stitch out before it works loose and rubs again, change drops, or what.
Not looking forward to this either!
If my "new" normal consultant had taken the bloody stitch out ages ago, as most consultants would have done I gather, I wouldn't have this issue.
Grrr.
Will stick quite adamantly to refusal to have steroids in any shape, brand for form - what's the point of having saved eye if the things drive me crazy???!
Will say, if they are keen to try immunosuppressants, that I want to discuss this with GP and/or retest kidney functions.
Also uneasy about immunosuppressants as tend anyway to get every respiratory tract infection going and that sets asthma off again.
One good thing about this palaver is that, what with all this sitting for hours in waiting rooms, the sweater I'm knitting is coming on handsomely!
Rosemary

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Re: Latest news from a part-tiem regular

Postby Barbara Davis » Mon 03 May 2010 11:26 am

Just to add my sympathy. Fingers crossed for you.
Barbara

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Re: Latest news from a part-tiem regular

Postby space_cadet » Mon 03 May 2010 1:09 pm

Hiya, just stopping by to say hi and *gentle hugs*

thinking of u
Lea
xox
May09 Diagnosed with KC, March 2010 after a failed transplant it has left me legally blind a long cane user (since 2010) who is blind in a once sighted world

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Re: Latest news from a part-tiem regular

Postby rosemary johnson » Mon 03 May 2010 6:50 pm

Thanks Lea - and Barbara.
It's still pretty itchy today - like bit of dust under the eyelid.
ANd often feels like a contact lens I can't wait to tae out.
Very familiar - felt that for most of the tie for ages after the op.
Vision is changing markedly - astigmatism axis has moved from almost uand down/straight across to X shaped.
I think.
Off to look for an old Metro with a clockword soon!
Circles look very odd-shaped.
Am hoping taking the rest of the stitch out will improve vision .
Rosemary


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