Tuesday, April 26, 2005

TURNED AWAY FROM HOSPITAL

YEP THAT'S RIGHT I WAS TURNED AWAY.
I HAVE BEEN EXPERIENCING SHARP PAINS IN MY LIVER TODAY, SO I WENT TO A&E. AS YOU KNOW I SUFFER FROM HAEMOPHILIA WHICH MEANS MY BLOOD DOES NOT CLOT VERY WELL, I TOLD THE TRIARGE NURSE ALL ABOUT MY HAEMOPHILIA AND MY HEPATITIS C AND MY BIOPSY AND THAT I FEARED I WAS BLEEDING INTURNALLY. HE ASKED MY WHY I HAD NOT GONE TO SEE MY GP, AND ALL THE A&E DOCTOR WOULD DO IS REFER ME TO SEE THE LIVER CONSULTANT AND MY GP COULD DO THAT QUICKER. I DID NOT EVEN SEE A DOCTOR WHILE I WAS THERE, WAS NOT EXAMINED NOTHING. I COULD NOT BELIEVE IT, I AM LIVID. I WILL BE MAKING AN OFFICIAL COMPLAINT AND PURSUING A CLINICAL NEGLIGENCE CLAIM, BUT FIRSTLY I WILL BE PHONING MY CONSULTANT HEAMOTOLOGIST FIRST THING IN THE MORNING, TO HOPEFULLY GET SOME PROPER MEDICAL ADVICE.

Monday, April 25, 2005

NEWSPAPERS

HI ALL SORRY I HAVE NOT POSTED FOR A WHILE, I HAVE BEEN A BIT BUSY (LOSING WEIGHT) HA HA YES I HAVE ACTUALLY LOST SOME NOT A LOT BUT SOME ABOUT 4lb. ON A MORE SERIOUS NOTE I RECEIVED AN EMAIL TODAY FROM MIKE A FRIEND OF MINE IT WAS A COPY OF AN ARTICLE IN A SCOTTISH NEWSPAPER, I HAVE COPY AND PASTED IT TO THIS POST, HAVE A LOOK IT MADE MY BLOOD BOIL.

Sunday Herald - 24 April 2005
Haemophiliacs blocked in bid for secret files
Hepatitis-infected campaigners told handing over vital documents would be ‘too expensive’By Judith Duffy, Health Correspondent
HAEMOPHILIACS have been refused acce ss to secret files which they believe could reveal how they were infected with hepatitis C through contaminated NHS blood products.
Campaigners requesting the release of classified documents under freedom of information legislation have had their demand turned down on the grounds of cost.
The Department of Health has also claimed that some of the documents have been destroyed. The 600 files contain information on blood policy decisions taken by the UK government between 1972 and 1986, during which time thousands became ill.
Mike Kenwright, a haemo-philiac from Cheshire, is one of the individuals infected by hepatitis C who asked for the documents.
He first made the request last year, when he was told they were part of an internal review to “clarify the facts surrounding the drive for self-sufficiency products in blood products in the UK in the 1970s and 1980s.”
The response from the Department of Health said ministers felt that it would be “prudent to wait” for the informal review to be completed before they replied.
When the Freedom of Information Act came into effect in January this year, Kenwright repeated his request for the documents using the new legislation.
He said: “The reply came back saying because it would cost more than £600, we couldn’t have them. The second reason given was that documents I asked for have probably been destroyed.”
The files have been kept secret since 1990, when the government refused to reveal their contents to patients who were suing after contracting HIV through the NHS.
According to court papers, judges who saw the documents believed that the government had a case to answer. But at a time when hundreds were dying from Aids, the judges recommended that those infected accept compensation rather than face a lengthy court battle.
Kenwright believes the files would reveal the government failed to heed warnings from the US about the dangers of using imported blood plasma products.
He said: “There is no doubt that the government was aware of the dangers, yet did nothing about it until HIV came along.
“A lot of people had been infected before that with hepatitis C, but they didn’t see hepatitis C as a danger.
“The actual time they think I was infected was not a life-threatening bleed. We weren’t allowed to make an informed decision. For most of my bleeds, I wouldn’t have touched the stuff. ”
Under the Freedom of Information Act, requests for information can be rejected where the cost to central government would exceed £600.
The reply from the Department of Health states that providing information on imported plasma in the early 1970s “would fall into this category”.
It explains this is because “officials would need to undertake a lengthy exam ination of the files for that period and consult with external organisations who were involved in the provision of imported plasma.”
The response goes on to say: “With regards to your request for documents which were subject to a Court of Appeal Hearing on September 20, 1990 in relation to the HIV litigation, following an extensive search of our records, we do not appear to have retained the documentation.
“Given that the litigation was settled nearly 15 years ago, it would appear the documents have been destroyed.”
Campaigners have repeatedly asked for a public inquiry into what has become known as “the biggest medical treatment disaster in the history of the NHS”.
Peter Mossman, the vice chairman of the Manor House Group, which was formed by haemophiliacs infected with hepatitis C, said he was “appalled” by the failure to release the documents.
He said: “I do not believe they have been destroyed. I think it is the biggest cover-up ever. What also appalls me is that they still insist they cannot have a public inquiry – it is just incredible.”
Bruce Norval, a haemophiliac from Fortrose, near Inverness, who was infected with hepatitis C, described it as a “total whitewash”.
He said: “This continual process of denying us access to information just proves that there is probably a case to be answered.”
He added: “We are talking about the deaths now of more than 200 Scots.
“If this was a railway crash, we would have eventually got a public inquiry.”
Norval added that refusing to release the documents due to cost reasons was an “obscenity”. He said: “Dying of old age is becoming a rare thing in haemophilia – the diseases we are infected with are myriad.
“They are telling us that £600 is a good enough excuse to deny us access to the truth about why we are dying.”
A spokeswoman for the Department of Health said the documents being used in the internal review had not been destroyed.
But she added: “There were some documents which were asked for in the Freedom of Information request relating to the court of appeal hearing with regards to the HIV litigation.
“We don’t seem to have retained these documents, given the fact that it was 1990.”

Wednesday, April 20, 2005

GOOD NEWS ( I THINK )

I GOT FED UP WAITING FOR THE HOSPITAL TO RING ME BACK SO I PHONED JONATHAN'S NURSE, HE GAVE ME HER NUMBER (CHEERS MATE), SHE WAS VERY NICE.
WELL WHAT CAN I SAY, I THINK SHE GAVE ME GOOD NEWS, MY LIVER IS MILD TO MODERATELY INFLAMED, SLIGHT FIBROSIS AND NO BRIDGING WHATEVER THAT MEANS, BUT SHE SAID IT WAS GOOD. I STILL HAVE TO WAIT TO SEE MY CONSULTANT TO SEE WHERE WE GO NOW. I FEEL LIKE GOING TO THE PUB TO CELEBRATE, BUT I WONT.

ON A MUCH SADDER NOTE, A FELLOW HAEMOPHILIAC WHO CONTRACTED HEPATITIS C AND HIV THROUGH CONTAMINATED NHS BLOOD PRODUCTS HAS SADLY LOST HIS FIGHT FOR LIFE, ALTHOUGH I DID NOT PERSONALLY KNOW PETER, HE AND HIS WIFE CAROL HAVE DONE A GREAT DEAL FOR PEOPLE WITH HEP C AND I THANK THEM. I FEEL KIND OF GUILTY GETTING GOOD NEWS ON SUCH A SAD DAY.
I HOPE YOU WILL BE ABLE TO REST NOW PETER.

BIOPSY RESULTS

IT HAS BEEN TWO WEEKS TODAY THAT I HAD MY BIOPSY, I WAS TOLD THAT IT WOULD TAKE TWO WEEKS FOR MY RESULTS TO COME THROUGH, SO I PHONED THE HOSPITAL AND WAS TOLD THEY DO NOT KNOW MY RESULTS BECAUSE THEY CANT FIND MY NOTES (ARGHHH). THEY SAID THEY WOULD CALL ME LATER (BET THEY DON'T), MY CONSULTANT'S SECRETARY IS OFF SICK SO I THINK THIS MY BE THE PROBLEM.

Sunday, April 17, 2005

Omniferon

I HAVE JUST BEEN SURFING SITE'S ABOUT HEP C AND I CAME ACROSS OMNIRERON, APPARENTLY ITS A DRUG THAT IS BEING TRIED HAS ANYONE HEARD OF IT.

STILL 18 STONE.

Friday, April 15, 2005

LINK CRAZY

AFTER TWO MONTH'S OF TRYING TO ADD LINKS TO MY SITE, I FINALLY DID IT (I THINK) I WAS SO EXITED I WENT A BIT LINK CRAZY, BUT I DON'T CARE.
I AM STILL GETTING PAIN'S IN MY LIVER AFTER MY BIOPSY. IS THIS NORMAL ITS BEEN 9 DAYS NOW? THEY ARE JUST SHARP PAINS EVERY NOW AND THEN. I AM OFF TO WORK NOW, SEE YA.

Tuesday, April 12, 2005

BACK TO WORK

THE LIVER BIOPSY PAIN HAS FADED A LOT, SO I WENT BACK TO WORK TODAY, I TOOK IT VERY SLOWLY AND IT WAS NOT THAT BAD ALTHOUGH I DID TAKE A FEW HOURS OFF THIS AFTERNOON.
I AM LUCKY WITH MY JOB, I DRIVE A BLACK TAXI SO I CAN COME AND GO AS I PLEASE, I HAVE A REGULAR CONTRACT IN THE MORNING AND AFTERNOON THAT I HAVE TO DO, I TAKE SEVEN SPECIAL NEEDS CHILDREN TO AND FROM THEIR SCHOOL, I SUB-CONTRACT TO SOCIAL SERVICES. THE KIDS ARE A BIT OF A HANDFUL (ALL BOYS), I AM NOT LOOKING FORWARD TO PICKING THEM UP WHEN I START TREATMENT !!!, I WILL HAVE TO DO IT, AS ITS MY ONLY SOURCE OF INCOME.
ON THE OTHER HAND I COULD CARRY ON WORKING FRIDAY AND SATURDAY NIGHTS, WITH THE DRUNKS GETTING IN AND OUT ABUSING ME AND MY CAB, I WILL BE ABLE TO INTRODUCE THEM TO "RIBA RAGE".

Sunday, April 10, 2005

THE QUEEN, PAIN AND DIETS

HELLO BLOGGERS,
LASTNIGHT I WAS SITTING IN FRONT OF MY LAPTOP IN LOADS OF PAIN AND SELF PITY, SO I WROTE TO THE QUEEN ABOUT HEPATITIS C. I ASKED HER WHY MPs HAVE IGNORED MY LETTERS AND I ASKED HER FOR A PUBLIC ENQUIRY INTO HEPATITIS C CONTAMINATED BLOOD PRODUCT'S. I EVEN SENT HER A LINK TO MY BLOG. IF YOU READ THIS YOUR MAJESTY, I WOULD JUST LIKE TO SAY HELLO AND I HOPE YOUR BOYS WEDDING WENT OK.

DIETS.
I AM A BIT OF A FAT GIT AND I SMOKE TO MUCH. I HAVE TRIED DIETING SEVERAL TIMES, BUT MY WILLPOWER KEEPS LETTING ME DOWN. I REALLY DO NEED TO GET MY BODY SORTED OUT BEFORE I START TREATMENT.
I AM GOING TO POST MY WEIGHT EVERY SUNDAY EVENING, JUST AS A KICK UP THE BUM FROM ME TO ME. I HOPE THIS WILL HELP ENCOURAGE ME. I DID JOIN A GYM BEFORE MY BIOPSY, I WILL START GOING AS SOON AS THE PAIN STARTS TO FADE.

WEEK ONE. I AM 18 STONE

Saturday, April 09, 2005

TAKEN BACK TO HOSPITAL

I WAS IN A LOT OF PAIN THIS AFTERNOON, I PHONED THE HOSPITAL AND SPOKE TO A DOCTOR WHO SAID SHE THOUGHT THEY MIGHT HAVE PUNCTURED MY LUNG WHILE THEY WERE DOING THE BIOPSY AND I NEEDED TO GO BACK.
I WENT BACK AND HAD A CHEST X-RAY, LUCKILY THEY DIDN'T, THEY CALLED THE CONSULTANT IN (ON A SATURDAY), HE EXAMINED ME AND SAID HE COULDN'T FIND ANYTHING WRONG, IT WAS THE PAIN AFTER A BAD BIOPSY.
THANK GOD THERE WASN'T ANYTHING BADLY WRONG.

THE MORNING AFTER THE NIGHT BEFORE

THE PAIN KILLERS THAT THE Dr GAVE ME WERE VERY GOOD, I TOOK TWO LAST NIGHT AND THEY KNOCKED ME OUT UNTIL 11.00 THIS MORNING. I WAS IN THE SAME AMOUNT OF PAIN AS SOON AS THEY WORE OFF. IS THIS NORMAL TO BE IN THIS AMOUNT OF PAIN? AS SOON AS I START MOVING OR BREATHING HEAVY IT HURTS (OH NO MY SECRETS OUT YES I AM A HEAVY BREATHER).

Friday, April 08, 2005

PAIN IN THE LIVER

I HAVE HAD REALLY BAD PAIN IN MY LIVER FOR THE LAST FEW HOURS, MAILNLY AFTER I'VE EATEN. IT WAS SO BAD I HAD TO CALL THE DOCTOR OUT. HE GAVE ME SOME DIHYDROCODEINE, ENOUGH UNTIL MONDAY. I AM NOW GOING TO TAKE TWO, ORDER A DOMINO'S PIZZA, WATCH A FILM AND CHILL OUT.

BIOPSY NIGHTMARE

HI EVERYONE, I HAVE HAD MY BIOPSY AND WHAT AN ABSOLUTE NIGHTMARE IT WAS, I WAS UNLUCKY ENOUGH TO HAVE MY BIOPSY AT NORWICH'S BRAND NEW MULTI-MILLION POUND UNIVERSITY HOSPITAL.
I WILL NOW LIST WHAT HAPPENED TO ME, IT WAS LIKE SOMETHING OUT OF A CARRY ON FILM.
I WAS ADMITTED WEDNESDAY MORNING AT 8.30, I WAS SHOWN TO MY BED AND SOON AFTER A DOCTOR ARRIVED TO TAKE MY BLOOD, SHE COULD NOT FIND A TOURNIQUET SO SHE USED A LATEX GLOVE, WHEN SHE TIED THE GLOVE AROUND MY ARM IT PINCHED MY SKIN, SHE THEN PUT A CANULAR (I THINK THAT'S HOW YOU SPELL IT) IN, THE PAIN IN MY ARM WAS AGONY, I COULD NOT UNDERSTAND WHY I HAVE NEVER HAD A PROBLEM BEFORE. ANYWAY SHE TOOK MY BLOOD AND LEFT THE NEEDLE IN. A WHILE LATER A NURSE CAME TO GIVE ME MY FACTOR VIII, SHE TOOK OUT THE NEEDLE AND SAID "I AM NOT SURPRISED THAT WAS HURTING IT'S THE WRONG SIZE NEEDLE", NOW I AM STARTING TO GET PEEED OFF.
ANYWAY AFTER A FEW HOURS OF BLOOD TESTS AND FACTOR VIII THEY TAKE ME FOR MY BIOPSY, I WAS TAKEN TO A TREATMENT ROOM AND I MET THE DOCTOR WHO WAS DOING IT, HE EXPLAINED THE BIOPSY TO ME AND THEN STARTED TO DO IT. HE PUT THIS LONG THINGY INTO MY LIVER (AS I WAS COMING DOWN OFF THE CEILING) I WAS IN SO MUCH PAIN IT WAS UNTRUE, MY SHOULDER WAS AGONY , I COULD NOT BREATH PROPERLY, MY STOMACH HURT. I FOUND OUT LATER HE CAUGHT MY DIAPHRAGM AND THAT'S WHY I WAS IN SO MUCH PAIN. THEN THE GIT SAID THAT HE HAD NOT GOT A GOOD ENOUGH SAMPLE AND WANTED TO GO BACK IN, I TOLD HIM AS POLITELY AS I COULD TO PISS OFF.
I WAS TAKEN BACK TO THE WARD AND GIVEN SOME SERIOUS PAIN KILLERS, I WAS HAPPY THEN.
I HAD A BAD TURN LATER THEY PUT ME ON A ECG. BUT SOME MORE PAIN KILLERS SORTED ME OUT.
I WOKE LATER WITH SOMETHING DIGGING IN MY LEG, I FOUND THEY HAD LEFT A PAIR OF SCISSORS IN MY BED.
I JUST HOPE THEY GOT ENOUGH OF MY LIVER BECAUSE THEY ARE NOT HAVING ANYMORE, (JUST YET).
I WOULD LIKE TO SAY THANK YOU TO ALL THE NICE STAFF AT THE N & N,
THANK YOU TO JONATHAN & MIKE FOR VISITING ME,
THANK YOU FOR ALL YOUR COMMENTS ON JONATHAN'S BLOG,
AND A SPECIAL THANK YOU TO THE UNCARING BASTARD IN THE ULTRASOUND DEPT WHO, WHEN I ASKED HIM FOR SOME PAIN RELIEF TOLD ME HE WAS NOT A CHEMIST.
(WHAT GOES AROUND COMES AROUND)

Monday, April 04, 2005

BIOPSY

HI EVERYONE THIS WILL BE MY LAST POST FOR A WEEK, I AM GOING IN TOMORROW FOR MY LONG AWAITED BIOPSY.
FINGERS CROSSED FOR A POSITIVE RESULT, I WILL LET YOU KNOW HOW I GET ON.
I AM STILL DETERMINED ABOUT MY CAMPAIGN THIS IS MY NEW SITE FOR THOSE OF YOU WHO ARE INTERESTED. http://hometown.aol.co.uk/bartramstv/myhomepage/opinion.html
SEE YOU ALL SOON.

Sunday, April 03, 2005

MUNG & ADUKI BEANS ????????????????

I HAVE BEEN BEEN OUT INTO NORWICH TODAY, BUYING BITS AND PIECES FOR MY SHORT STAY IN HOSPITAL NEXT WEEK. I WENT INTO A HEALTH FOOD SHOP AND FOUND MYSELF BUYING MUNG BEANS AND ADUKI BEANS, BELIEVE ME THIS IS NOT MY NORMAL FOOD. I HAVE BEEN SITTING AND LOOKING AT THESE SEED BEANY THINGS, AND THINKING WHAT THE HELL AM I GOING TO DO WITH THESE. THEY DO NOT LOOK VERY EDIBLE. I WILL GET ROUND TO DOING SOMETHING WITH THEM I PROMISE, PERHAPS PUT THEM IN A SANDWICH.