F
fred
Well-known member
Best of British Graham.
V8Druid
do it as well as you can,but learn to do it better
you really do not want to knowGood luck! Wonder how much those cost the NHS a pack
.... I've not found any specific figures yet ... but I will ... my Immuglicerase enzyme (Cerezyme), was 'kin horrendous ..... $1200 a bottle ... and had eight a month .... should've been on triple the dose, for my body weight, but all down to cost and it just about kept on top of it, on the 1/3rd of the recommended dosage ..... most annoying thing with that was ... developed by a Yank Co., Genzyme, with 95% gov. research funding .... they made / make 97% profit on every Mg/unit manufactured The Imiglustat will have been done in the same way ... still researching the price of it, but understand it's on a par with the Immuglicerase, so reckon a pack of them capsules'd be about $2400
I'd never been 'ill' in me life 'til Aug. 2010 when this kicked in and put me in Hospital (thinking i wasn't coming back out)..... must've had a pretty bullet proof system, 'cos the consultants can't understand HTF it'd coped for 50 odd years without any help.
think I may have used up me N.I. contributions
... and working me way through all me tax payments .. of which there have been a lot ... people criticize our NHS, doctors, nurses. etc., but without 'em ......... I'd be dead
V8Druid
do it as well as you can,but learn to do it better
thanks Aiden and everyone else for their 'well wishes' ..... as said earlier there are several A4 pages of side effects for both treatments and was very lucky with the artificial enzyme, not to get many at all.Fingers crossed it goes well for you Grahamhope the side effects if any are minimal!
I hope it'll be the same with this, but it works in an entirely different way, blocking issues, rather than 'clearing up' behind it ........ just have to see how it goes .. third one this morning and seem to get a 'buzzy' head, 'bout an hour after and 'queasy' / odd feeling generally ... plus spleen not happy
... need to let me body get used to to it first ...... will have been on it a month by me next MOT on the 14th Feb. .... see what they say then !
JD450A
Feral as Fk 🐾
Well I for one will gladly say I'm looking forward to seeing a fully mobile druid once again..... You can then get a proper job again and start paying into NI again
Na, it'll be good if you can start to come visit.
J
Jimoz
Well-known member
Do they really dose based on cost?!
I had to bully a doctor once to sort my prescription. Her words were something like I'm only doing this because you're...Can't remember what she said actually. Anyway I bullied her because the specialist had sorted the prescription and she needed to renew it. On way out asked reception if she was a partner and she was. Must hit her budget somewhere!
What actually happened in 2010?
I had to bully a doctor once to sort my prescription. Her words were something like I'm only doing this because you're...Can't remember what she said actually. Anyway I bullied her because the specialist had sorted the prescription and she needed to renew it. On way out asked reception if she was a partner and she was. Must hit her budget somewhere!
What actually happened in 2010?
Lancs Lad
Well-known member
2nd that about NHS my dad has got a pretty complex form of the big C.....on his 2nd treatment run of chemo etc. The last lot his specialist told him was £10k a drip bag or whatever and he had 6 lots...! Now on tab form this time some new concoction.you really do not want to know
The Imiglustat will have been done in the same way ... still researching the price of it, but understand it's on a par with the Immuglicerase, so reckon a pack of them capsules'd be about $2400
I'd never been 'ill' in me life 'til Aug. 2010 when this kicked in and put me in Hospital (thinking i wasn't coming back out)..... must've had a pretty bullet proof system, 'cos the consultants can't understand HTF it'd coped for 50 odd years without any help.
think I may have used up me N.I. contributions
people criticize our NHS, doctors, nurses. etc., but without 'em ......... I'd be dead
V8Druid
do it as well as you can,but learn to do it better
Very much so Jim .... I had to fight for 13 months to get my treatment funded ..... was on the point of going to court .. barrister briefed ... Consultant on my side ... health board refusing, despite there being 14 precedents in Wales .... they caved in on the Friday at 4.30pm .... were in court at 09.00 on the following Monday. My consultant rang me and told me he'd had the 'nod' for the bare minimum only and that he wanted to try it for starters and fight for more, once on it, if it didn't produce results. Would've worked a lot quicker on a higher dosage, to get me back 'on track'.
as for what happened ... it's a loooong story .. but basically ... as said never been (properly/seriously) ill in me life .... overcome a few 'nasties' in me time, .. food poisoning twice, pleurisy twice, and a nasty case of cellulitis in me arm once - came close to losing it - apparently, but never needed hospital stay time.
22-8-2010 ... spent the Sunday at home planting stuff in the garden for Pam .. sat down tea time, 6-ish, took one mouthful and said I didn't feel well .... puking my heart out within 10 minutes and in serious pain ......
was still puking at 2 am and rolling round the floor .... thought I had food poisoning and hoped to 'ride it out' ...
by 3 am, I'd nothing left of any description to bring up, when I filled the bowl with what can best be described as 'millet' and the foulest smelling bile describable !! (will forever regret not keeping a sample, for later).....
the pain was now beyond anything I'd ever experienced and Pam called the 'out of hours' GP line ..
got some script reading girl on the other end of the phone asking all sorts of pretty inane Q.s ...
when Pam was asked if they could talk to me .... her response of "he's yellow, doubled up on the floor in agony, unable to speak and I think he may be dying" got a ... "we'll have a doctor there in 15 minutes" reply and fair play they were
she was the duty Doc. on that night, in the out of hours clinic in the local hospital and only lives about 3 miles from me, so knew exactly where she had to come ..
got down on the floor with me and had a listen for a few seconds .. and said "Hospital .. NOW !!.... i think your pancreas is about to burst "...
Dragged some clothes on, grabbed me wallet and went downstairs and out to her car ....
... and said "you'll have to give me a minute ... gonna have to take the trailer off the disco for Pam to be able to follow in" ..... she thought I was mad ... but it had to be done ... God knows how i did it .. but I did
Blues and twos ride into town ... fk knows why .. was middle of the night and no one about ... Brucey must've liked 'em ...
can't recall how i ended up in the A&E side ward with a consultant either side of me, discussing where I was going ... ICU or onto a ward, but can recall grabbing one's arm and saying "I don't give a **** where you put me, just do something about the pain please"
Don't know how much morphine they gave me but remember waking a few hours later, as it wore off, plumbed up to three bags of fluids and antibiotics, on a ward, with the sun up and Pam sat beside me.
spent a week on a morphine pump, with a button I could press as required ... whacked off my head !!
Can only remember two incidents from that week, as they quietly 'wound me down' off it ... woke one night - early hours and saw this 'thing' in the bed opposite, in the dim night light of the ward .. rang me mate Simon (who Mog had the lorry off) ... 3 am to ask him if we'd been invaded by aliens ... I'm still off me face ... fair play he was very good and allayed my fears and I drifted off again ..... transpired in the morning the guy opposite had been brought in, middle of the night and was wearing a sleep apnea respirator .. looked like a gas mask in the cold light of day !!
Woke from am hallucination another night ... disconnected all me drips/plumbing and legged it off down the corridor .. blood everywhere .. 'til they caught me
Eventually ended up back in reality after a week or so and was told i'd been brought in with severe acute pancreatitis ... touch and go .. enlarged liver and huge spleen, body shutting down rapidly ... How much did I drink?? "
I don't - haven't for probably 30 years" ....
they'd asked everyone who'd been in to see me the same Q and gotten the same answer ....
they'd finally decided i wasn't a drinker and there must be summat more serious going on ... been taking bloods every 6 hrs, all the time I'd been in and the head of hematology came and sat on me bed, day 10 and said ...
"we have no idea what is wrong with you, but it's bloody serious .. I have never seen blood results like yours before. Bit like Sigourney Weaver's in Alien Resurrection!! LOL .. We're going to let you go home for the weekend, but want you back here Monday morning for a load more tests and a bone marrow and bone biopsy ... have a good weekend "
I liked her sense of humor
Went in at 13.5 stone ... came out 10 days later under 10 st. !! .... hadn't eaten in over a week ...
when i was eventually allowed to eat again day 9, went down the canteen as the ward grub was appalling ... sat eating some toast and a mate came across to me and said "Jesus Gra it is you ... saw this little old man sat here and thought i'd recognised you ... WTF happened to you "
went back in on the Monday for a battery of tests and the dreaded bone and marrow sampling ... I hope i never have to do that one again ... laid on yer side on a bed ... fetal position, two nurses holding your shoulders and legs down ... by lying across me and the doc takes what's best described as a 3mm dia. apple corer and bores it into your hip bone ... once they've got a decent enough size sample, they then suck yer bone marrow out the same hole ..... they had 3 attempts on me ... said after the second go "FFS get it right this time Richard ... it'll be yer last try LOL" ... and it would've been ... they can anaesthetise your flesh .. but not the bone !! Was sore for weeks.
waited over 6 weeks for the results and they weren't good ... Nilma, the head of dept. said they still had no conclusive idea, but the closest thing they could come up with was summat called myelofibrosis ... terminal, 6-12 months, your bone marrow turns solid and not a pleasant end ... but she wasn't convinced and was sending all my specimens to a pathology professor in Cardiff uni for another opinion.
I read all I could find on Myelo. and agreed ... I should've been in a real bad way and wasn't.
two weeks later she called us in and we all sat and listened to professor Steven Doitzchnoff tell us all on the phone about a disease he had seen once before in his career .... rare as hen's teeth and was i Jewish ??
Accused a few times over the years, but not to my knowledge !!
Gaucher's Disease was most prevalent in the Ashkenazi Jewish population of central Europe ... 'bout 1:100,000 ..... in the general population 1:1,250,000 ... but that was his learned opinion ... more tests needed on my DNA this time to confirm his diagnosis.
Another 6 weeks later and the DNA results were back from the Willink laboratory in Manchester .. it did look very much like type 1 Gauchers .... three types, all fatal, but type 1 was the most manageable and could be 'lived with', with suitable treatment. Incurable, but manageable ... I'd live with that as an alternate result ... hopefully.
I'm missing a gene off a chromosome, which produces an enzyme in my system, which breaks down the blood cell walls as your body changes your blood ... we all have a full 'oil change' once a week ... with Gaucher's it doesn't happen and the detritus accumulates in your body/organs ... in my case my spleen, which was estimated at 16 times bigger than normal (normal is 200 gms) .. so 3.2Kgs !!!!!, plus some in me liver and various other places ... type 2 accumulates in the brain and it's game over, but is usually prevalent in children, who rarely survive beyond 5.
It's an inherited disease .. from both parents ... one must be a sufferer and one can be a carrier .... in hindsight my mother must've been the sufferer as she had some odd and mysterious disorders through her life.
They still have no idea HTF I (my body) managed for 50+ years, but it'd obviously given up on the 22nd of August !!
as said elsewhere, there then followed a 13 month fight to get treatment funded ... it's classed as an orphan disease, because of its rarity and is part of a group of diseases categorised as Lysosomal Storage Disorders and have to be funded from a specialist fund, which is extremely hard to get money out of ... usually 'cos the treatments are expensive, as they're for very rare diseases, which don't get a lot of funded research.
So, as long as they treat me, I'll survive .... without it, it's a question of time before the body goes into meltdown again and it's game over!!
I treat every day as a bonus and try to be as positive as possible, keep active, which i am sure contributes to my well being and try hard to ignore it as much as possible ... the odd 'tramadol cocktail' night is beyond ignoring ... thank **** for drugs, when you need 'em .... and I have a reserve stock of morphine if they don't work ... have come close, but not resorted to it yet !!
I have a younger brother, whose DNA is identical to mine, yet exhibits no signs of the disease ... in fact he is in the rudest of health ... I find it frustrating and disappointing that they do not do a lot more to study two siblings with identical DNA - one with and one without, to try and establish why? ... and just what keeps him well ...
it could provide some serious answers and maybe alternate treatments ..
we are very rare specimens.
sadly they do not seem to have the time or funds for even the simplest of studies and comparisons .... we have compared all levels of our lives, but nothing seems glaringly obvious to the doc.s ..... and I have made a lot of suggestions
V8Druid
do it as well as you can,but learn to do it better
hope it goes well for him .....
I have nothing but admiration and praise for all our doc.s ..... they're bloody miracle workers a lot of the time, working with one of the most complex organisms on the planet ... it's no wonder we go 'wrong' so often ... life itself is a miracle
V8Druid
do it as well as you can,but learn to do it better
LOL ... have paid me dues since i was 18 Rory ... never signed on in me life and was still paying 'em even when i was ill/off and unable to work .. right up 'til I ceased to trade officially in '15/'16 .... never got a penny help - self employed pal .. toughWell I for one will gladly say I'm looking forward to seeing a fully mobile druid once again..... You can then get a proper job again and start paying into NI again
Na, it'll be good if you can start to come visit.
had private/key man ins. .... waste of money that was ... inherited illness pal .. sod off - didn't tell us ........ the fact that I never knew meant sod all ... even though it took the doc.s 7 months to actually work out WTF was wrong
any of you with private health cover .... read it carefully and ask some searching questions ... you may end up in the same boat
J
Jimoz
Well-known member
Interesting reply as always hope the pills work for you
V8Druid
do it as well as you can,but learn to do it better
me too Jim .... but feeling s**t this morning, after a very disturbed, weird night's dreams / hallucinations, damned near.
going to give it a week and see if it repeats the patterns .... then talk to me consultant if it does ... see if it's 'normal' or/and what can be done ....
fit for sod all in this state
......... but it's only day 3 so gotta give it a chance ....used to feel rough after the infusions, when i first started on them, but that was fortnightly initially, so had a day or two's recovery and felt fine
TiltyShaun
Well-known member
Puts anything I complain about into perspective. Spoke to my wife about this and she will see if there are currently any UK active trials for this condition. She said it is probably unlikely as it is such a rare condition which means they have 2 problems. Finding the patients and finding the money. The drug you are on was originally listed at something like 300 000 dollars a year!
Very surprised to here your comments about Keyman insurance. When my partner was diagnosed with cancer they paid up promptly. I guess they have hereditary problems excluded or people could pull some real stunts.
Wishing you well for the treatment and as always great respect for your ongoing work!!
Very surprised to here your comments about Keyman insurance. When my partner was diagnosed with cancer they paid up promptly. I guess they have hereditary problems excluded or people could pull some real stunts.
Wishing you well for the treatment and as always great respect for your ongoing work!!
F
fred
Well-known member
just to comment on proivate healthcare, I've found non-emergency NHS (cant really put you on a waiting list and leave you on side of road to die) to be completely crap. The whole system from seeing a GP (HAHA good joke that) to seeing a consultant to be offered a small selection of treatments out there that are cheap.
I've had a couple of minor ops the last 5 years, nothing major but the sort of stuff that impacts work life. The NHS weren't interested in either, I paid up and 4 weeks later done.
Of course the reason the NHS is stretched and giving a crap service is nothing to do with the 7 million+ extra people who flooded the UK in last 10 years without paying in a single penny.
I've had a couple of minor ops the last 5 years, nothing major but the sort of stuff that impacts work life. The NHS weren't interested in either, I paid up and 4 weeks later done.
Of course the reason the NHS is stretched and giving a crap service is nothing to do with the 7 million+ extra people who flooded the UK in last 10 years without paying in a single penny.
JD450A
Feral as Fk 🐾
You will find if you go into a A+E department that the immigrants have ruined the country myth doesn't stack up. I'm not a fan of immigration... But the majority of A+E cases are:
1) Bethany Mahogany May Splat. Who is in with her two baby daddies because Ruby Mahogany March of Unknown heritage won't stop crying and even some nice plant based smoke won't quiet her.
2) Nana Brenda who might have broken her ankle, but also might just want some human interaction for the day because her family have moved as far away as possible so they don't have to care for her.
3) John Doe who is that Pissed he can't remember his name..... And is currently suggesting to the doctor he will rearrange his face if he touches him....
4) Bob, John Doe's mate who is comatosed from the 50 Jagga bombs he had last week.
GP's have to deal with the fact that the UK population is getting older
With that come more problems as there minds break down before there bodys these days.... likewise alot of them have very selfish families whom don't want to help assist with care.... there just waiting for the inheritance pot. Yes if you go into a A+E or GP in slough, or Birmingham you will get lots of "immigrants"... but most are 2nd windrush generation. And we can't be ungrateful to them.
F
fred
Well-known member
They are flooding into A & E as its not possible to get a GP appointment for reasons already stated.
Keep fingers crossed for a good cold winter and a round of the spanish flu to thin out the coffin dodgers !!
Keep fingers crossed for a good cold winter and a round of the spanish flu to thin out the coffin dodgers !!
J
Jimoz
Well-known member
To be fair if medicine that expensive I might get out more than I put in. We all organise our tax to be as efficient as possible. Think government needs to review priorities and tax
V8Druid
do it as well as you can,but learn to do it better
these drugs are bloody expensive Shaun .........
but .......... when they are developed with massive grant funding (by governments), the grantors should have a lot of say in their eventual sale costs and the developers not allowed to make 97% profit on a product that they have only invested 5% of the development costs into
it's criminal that they are allowed to reap such massive, obscene, profits and cause needless angst to those fighting bureaucracy to get them .... because these b'stards are making such huge margins.This goes for a hell of a lot of specialised drugs
as for the key man thing .... HTF are you supposed to know you have an inherited genetic disorder, unless they pay to have you fully screened at the outset .... my mother was never diagnosed as a Gaucher's sufferer and TBH it's only relatively recently that they have been able to be conclusive with it, at significant cost ....
NU/Aviva were total bas**rds .... nah - sod off, you had this when you took out the policy, 30 odd years ago and didn't tell us ..... back then it was virtually unknown, 'til you were dying from it .... as with a lot of genetic problems, no one knows 'til it hits them usually
Most cancers could be argued as genetic ... we're all born full of C cells .... just whether anything triggers them or not .... but there can be a genetic propensity toward that happening .... lost both parents and all grandparents to it ... I live in dread, but it's totally unpredictable
and could just as easily get hit by a stray Iranian sidewinder missile tomorrow ............. it's all 'odds'my solicitor was well up for having a go at Aviva....but I saw it as good money after bad .... 30 odd years worth of contributions/premiums for f**k all
I will never use Aviva again and have spent some money with NU over the years
Thanks for the well wishes ... I shall continue to 'ignore' it as much as poss. and keep up the Druiding .... last couple of days have been difficult and in unknown territory .... plus I've barely been out the door in a week .. lashing down .... sposed to be better for a few days so let's see what some activity does for the new tab.s ... got to be better than just sitting about letting them gurgle around
... I desperately need to finish me car
V8Druid
do it as well as you can,but learn to do it better
they need control over drug costs, that they have paid the majority share to develop .... simple as .... they pay to have it developed and then pay through the nose to buy the product
V8Druid
do it as well as you can,but learn to do it better
Our local/regular GP practice has just recently changed their appointment system (for the better IMHDO) ... you want to see a doc. ... you ring and get an appointment first thing ... no booking 2 /3 / 4 weeks in advance ... so everyday they start with an empty appointment book .... great idea IMHDO
TBF whenever I have had to resort to seeing one, which is rare, I've never had an issue, but they knew if I rang I REALLY needed to see someone.
the new system should stop a lot of the 'regulars' who see it as their weekly/fortnightly visit to see their mates in the waiting room ... etc., etc..
V8Druid
do it as well as you can,but learn to do it better
still not shifted it .... bloody thing .. head full of snot all the time
have managed to get the off side of the P38 back together in the odd dry hour or two .....
ball joints too some pressing out ....
bottom one was a bitch
and had to make up a sleeve to suit the job .... what came with the 'new toy box' just wasn't up to it ... too big to sit on the very limited face ....
slit some 76 chs and closed it up ...
jubilee kept it nicely tight and adjusted tight to the ball joint ..
remarkable how good a condition the seats are
as were the threads in that tapered seat collet, once I'd gotten it out on the bench, cleaned it all up and put the 1mm thread file over it ... was winding in/out a treat, so saved meself some silly money on that .... local factors wanted thirty eight quid plus VAT per side
.... was functional enough to reuse anyway, even if it was missing its 6 flats .. it went back in OKpressing the new balls in was a bit of a challenge initially, 'til I sussed the press clamp had snook out past QC without a cursory glance ...
some time spent with a file sorted the seat out ...
followed by a bit of die grinder action to get the bore right for the tooling to sit square ... next time the Ajax is in use I'll bore the whole thing out a mil ... just did enough to seat the tooling square, for now ... worked a treat
bottom one in .... on to the top ......... an' I've run out of pix again
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