Genotype 1 2 or 3 or all?

Hi, I had an ok weekend I felt a bit bad but worked through it. I have got injection number 2 tonight deep joy.

I went to hospital for some blood tests today, while I was there my nurse got my pre treatment blood results up on her pc. Picture this scene ( you just cant make this shit up ) she cliked on my blood results and it showed I was Genotype 2b, I have been told since I was diagnosed that I was Genotype 1 and my last blood test was in 2001. My nurse told me that the blood test results back then were very unreliable so I could be Genotype 2 and not 1. BUT! Yes there is always a but, because I had so much factor 8 back then I could have multiple infection. I handed over some more of the red stuff so they can do another Genotype test. FINGERS CROSSED. I phoned Martin B and asked his advice and he was very positive and said test are rarely wrong these days so I could be Genotype 2 and as we all know I may stand more chance of clearing the virus in a shorter time. Here's hoping ;-)

WORST DAY SO FAR

Me again, well today has been my worst day so far, I didnt sleep well last night only a few restless hours which is why I feel so shit today. I tried to work all day today but couldnt manage it ive felt really washed out achy just really drained, but so far I can cope with it. I told one of the guys at work today about my haemophilia and hep c, he is responsible for the firm I work for so he really needed to know, I think I shocked him a bit but he was really good and told me to take as much time off as I needed with no questions about where I am. Cheers Bob.
I am going to take my Ribavirin now and go to bed. See ya.

Rough mornings

Hi all what a day, I woke up this morning with a bit of a stomach ache, I have found I feel rough in the mornings but as the day goes on I feel better. I worked all day again today apart from about 30 minutes when I went home for a sit down because I felt a bit ill.
As you know I am a cab driver and today I done a job for a friend of mine, it was to pick up a lady with downs syndrome from a day centre and take her home. I really felt that my problems were nowhere as bad has hers and I should count my blessings. There is always someone worse off than you!

A note to Jason and Ross

Unfortunatly I am not going to go to the enquiry tomorrow I dont know how im going to feel in the morning and I would have to get up early because I am about 2 hours away from London, I will travel down the night before for the next hearing. Sorry to let you down.
Steve

The morning after

Where do I start, I know my nights sleep. I went to bed after meds and had a restless night I think that was due to worrying about the sides and not the sides giving me grief. I woke this morning and was really cold and shivering, I had some paracetamol and got dressed and then it was really weird it was like turning a light on I came over all hot and sweaty so much so I had to change my shirt. By this stage of the morning about 8.30am I felt ok a bit achey but ok so I went to work. I took my riba about 10.30am along with some paracetamol and I still didnt feel to bad so I carried on working all day. When I finished work and still now I feel quite sick and I ache like hell mainly my legs.
Lisa my better half cooked a roast for me tonight we sat down to eat I had two mouthfulls and was gagging I ran upstairs but was not sick. Is this normal? and the aching legs is this normal? Answers on a post card please!
I off now speak tomorrow.
Steve.

#Injection 1 continued

I done it took my riba and my jab the stomach worked for me. I going now I feel a bit down its all to real now.

# Injection No 1

Hi all I am about to do my first injection and my first pills, I plan to do them about 10pm its 9.25pm now. I have decided to inject myself in the 'Love handles' as recommended by Jae. I am going to get my interferon out the fridge for half an hour and while thats warming up I am going for a long hot bath. I will post again after TX, wish me luck Steve

LESS THAN 24 HOURS TO GO

Oh well less than 24 hours to go before my first injection and pills and to be honest I feel quite positive, this is mainly due to a great deal of support from the Hepatitis C Forum. http://www.hepcukforum.org I am going to post twice tomorrow night once before meds and after to let you know how I got on. I would just like to say a special thankyou to Martin for his kind words and to everyone else on the forum.
Tomorrows coming quick.

Curry and Family and Cabs

A cab the same as mine.

Friday night nearly midnight and im sitting in front of my laptop eating curry when I should be at work, I have been at work since 8 this morning so I dont feel to guilty. I finished work about 10.30 and went and got a take away curry I asked for a mild one and when I got home and started eating it, well Ghandi's revenge or what that was the hottest curry ive ever had. Anyway I did eat it but I will regret it. I am now munching on poppudoms onion salad and chutney and a glass of wine my last before I start TX.

Before I carry on I would like to say hi to my cousin Darren he has been looking at my blog ive been told. We have not seen eachother for a long time and he has been very unwell hiself recently, I hope your ok now mate and make a full recovery. Daz contact me through my blog if you want a chat mate.

Two days to go before I start the TX *&%£ing hell do I really want to do this?

can any one recommend the best place to inject I dont really fancy the stomach so it will have to be the leg I suppose! Also what is the best angle to go in from? My nurse says 90 degrees but the instructions say 45.

I off now ill try and post sunday because I am working all day tomorrow being a cab driver saturday is my busiest day, and ive got football in the morning.

see ya :-)

PICKED UP MY TREATMENT

As you can see I picked up my TX today off Doreen my nurse I am due to start monday night with my first pills and jab. To be honest I am very worried about the sides but I gotta get this shit out of me. I have been told to do the injection of an evening so as to sleep through the sides! If anyone has any advice I would love to hear from you.

IM BACK AND GOING ON TREATMENT

Hi all its been a very long time there are loads of new hep c bloggers out there and still some of the old. I will make this quick cos im tired and want to go to bed. I have Hep C genotype 1a and was given this little present from the NHS because I suffer from Haemophilia, I start the treatment on 11/06/2007 I will pick up my meds from my nurse on the wednesday, to help me through the tx I will try and post everyday for 48 weeks. I would welcome all comments and advice from anyone who wants to give it really. I am off now and I will post on the 11th. See ya :-)

THE SUN NEWSPAPER

HI BLOODY HELL IT SEEMS LIKE AGES SINCE IVE POSTED, IN MY DEFENCE I HAVE BEEN BUSY. I AM STILL CAMPAIGNING ABOUT HEP C AND I HAD AN ARTICLE IN TODAYS SUN NEWSPAPER HAVE A LOOK AT THIS! IT IS UNDER AN ASSUMED NAME:

US blood isdeath sentence
Horror ... scandal of US blood
EXCLUSIVEby EMMA MORTON
A MAN who got deadly Hepatitis C from a blood transfusion when he was SEVEN has spoken of his horrific ordeal for the first time.
Simon Brown, 34, was only told he had the killer liver virus in 1995 — even though he tested positive for it in 1984.
He now has progressed liver disease and describes his immune system as “shot”.
He cannot get a mortgage or insurance because of his illness.
Simon got the disease in 1978 — when he was given “dirty” American blood during an injection for his haemophilia, at Royal London Hospital in Whitechapel.
On Monday The Sun revealed the NHS was urged NOT to buy US blood from 1975, because American drug firms were paying prisoners, drug addicts and prostitutes to donate.
Simon, of King’s Lynn, Norfolk, said yesterday: “I had no idea I was being given infected blood. The NHS knew of the dangers — but I now have progressed liver disease.
“I don’t know what being healthy is because of this.”
He has written to Prime Minister Tony Blair and Health Secretary Patricia Hewitt and is demanding a probe.
Simon said: “I want a public inquiry into how I and thousands of others were given a death sentence. It’s like mass murder.”

WELL WHAT DO YOU THINK THEN?

ALL JOKING ASIDE THE REPORTER WHO WROTE THIS IS ON OUR SIDE AND SEEMS REALLY NICE AND SYMPATHETIC, SHE IS GOING TO RUN A SERIES OF ARTICLES ON HEP C, SO THANK YOU VERY MUCH TO EMMA MORTON FROM THE SUN NEWSPAPER.

ALL THE BEST BLOGGERS
SPEAK SOON
STEVE (SIMON)

COMMENTS

WHO KEEPS PUTTING THESE COMMENTS ON MY BLOG, PLEASE KEEP OFF MY BLOG UNLESS YOU WANT TO WRITE ABOUT HEP C OR I KNOW YOU (THANKS).

HI ALL BACK AGAIN, SORRY I HAVE BEEN AWAY BUT I HAVE BEEN VERY BUSY WITH WORK, GOOD NEWS I HAVE QUIT SMOKING, BAD NEWS I AM STILL A FAT GIT.

TX,
I AM STILL NOT SURE ABOUT STARTING TX IN THE NEW YEAR, I AM NOT READY AND MY HOUSING SITUATION IS A BIT STRESSED THERE ARE 5 OF US LIVING IN A 2 BED HOUSE AND I WANT MY TX TO BE STRESS FREE. WE ARE WAITING FOR THE COUNCIL TO MOVE US, ha ha.
I HOPE YOU ARE ALL WELL AND HAVE HAD A GOOD CHRISTMAS.
SPEAK SOON
STEVE

SMOKE FREE IT'S GREAT.

DOCTORS APPOINTMENT

WELL WHAT CAN I SAY, MY DOC WANTS ME TO START TREATMENT ASAP (GREAT), WE HAD A LONG CONVERSATION ABOUT THE TX AND MY GENERAL OVERALL FITNESS AND HOW I WOULD COPE WITH THE TX. BASICLLY I AM GOING TO START TX AT THE BEGINNING JANUARY 2006, THIS WILL GIVE ME 5 MONTHS TO LOSE SOME WEIGHT AND GIVE UP SMOKING.
HOPEFULLY BY THIS TIME I WOULD HAVE PREPARED MYSELF BOTH PHYSICALLY AND MENTALLY FOR MY JOURNEY TO BECOME FREE FROM HEP C.
THE NURSE IS GOING TO RING ME NEXT WEEK TO START SORTING THINGS OUT.
I BETTER GO NOW BECAUSE MY SON NEEDS SOME ATTENTION.
SEE YA!

DOCTORS APPT FAST APPROACHING

HI ALL ITS BEEN AGES SINCE I POSTED, I HAVE MY OWN REASONS FOR NOT DOING SO AS I HAVE ALREADY TOLD YOU ABOUT, ANYWAY I HAVE BEEN REALLY BUSY AT WORK AND SETTING UP MY COMPANY. I HAVE BEEN READING OTHER BLOGS BUT I HAVE NOT REALLY WANTED TO COMMENT (THAT AWKWARD FEELING AGAIN).
GOT MY APPOINTMENT WITH CONSULTANT ON TUESDAY AFTERNOON AT 4 TO DISCUSS TX, I AM REALLY LOOKING FORWARD TO THAT (NOT). I WILL POST TUESDAY NIGHT TO LET YOU KNOW WHAT HAPPENS.
ONE LAST THING WELL DONE TO JONATHAN FOR COMPLETING HIS TREATMENT.
HEP C FREE (MY DREAM)

BACK AGAIN

HI ALL SORRY I HAVE NOT POSTED FOR AGES I HAVE HAD LOADS GOING ON IN MY LIFE, I HAVE SET UP A NEW BUSINESS WITH MY NEIGHBOR. FOR THE LAST YEAR WE HAVE HAD A HOBBY OF BUYING OLD CARS CLEANING THEM UP AND SELLING THEM, WELL OUR HOBBY HAS TAKEN OFF AND WE ARE NOW STARTING TO MAKE SOME GOOD MONEY OUT OF IT ALTHOUGH WE ARE STILL DOING OUR NORMAL JOBS.

ONE OF THE REASONS I HAVE NOT POSTED FOR A WHILE IS THAT I FEEL A BIT AWKWARD COMMENTING ON OTHER BLOGS, YOU ARE ALL GOING THROUGH TREATMENT AND ALL I CAN DO IS GUESS WHAT ITS LIKE, TO ME THAT'S NOT FAIR ON YOU. I WOULD NOT WANT TO UPSET ANYONE ( I THINK I HAVE ALREADY ) SO I THINK ITS BEST FOR ME TO KEEP QUIET UNTIL I START TX. I HAVE AN APPOINTMENT WITH MY CONSULTANT ON 12 JULY TO DISCUSS TREATMENT.
ALL THE VERY BEST TO EVERYONE,
I WISH US ALL FREE FROM THIS VIRUS.

SUPPORT GROUPS

I HAVE READING OTHER BLOGS AND SURFING OTHER HEP C SITES, ONE THING I HAVE NOTICED IS SUPPORT FOR HEPPERS IS CRAP, WHY ? I DON'T KNOW !
HOW AM I GOING TO DO SOMETHING ABOUT IT ? I DON'T KNOW !
AM I GOING TO TRY AND DO SOMETHING ABOUT IT ? YES !
( WELL TRY ANYWAY ) I STARTED THINKING ABOUT THIS AFTER READING BALOM'S BLOG, I CANT IMAGINE HOW THIS POOR LAD FEELS. I E-MAILED THE HAEMOPHILIA SOCIETY FOR ADVICE THIS IS A COPY OF THERE REPLY


Dear StephenThanks for your email. There are a number of organisations that provide support and information for people affected by hepatitis C and may be able to provide support for children affected or at least point you in the direction of somebody who does.The Hepatitis C Trust is probably the best organisation to contact, you can call their helpline on 0870 200 1 200, their helpline is open from 12 - 6pm.Alternatively you could try the Hepatitis C Project on 01395 271601, sometimes this number is answered by an answer machine but everybody who leaves a message will be called back.We also have a booklet for young people on living with hep c and a booklet for carers/ parents of a young person with hep c which I could send you if you let me know your address.I hope this helps.Kind regardsAnnaAnna Hinchliffe-WoodInformation & Support Development WorkerThe Haemophilia SocietyFirst FloorPetersham House57a Hatton GardenLondonEC1N 8JGDDI: 020 7269 0686Admin: 020 7381 1020Helpline: 0800 018 6068 (10am - 4pm)Fax: 020 7405 4824www.haemophilia.org.uk

I HOPE THE NUMBERS ABOVE ARE SOME HELP, IF ONLY ONE PERSON RINGS AND GETS SOME HELP IT MAKES IT WORTHWHILE.

NOT POSTED FOR A WHILE

HI, SORRY I HAVE NOT POSTED FOR A WHILE BEEN BUSY AT WORK AND WITH FAMILY. I SENT A COMPLAINT TO THE HOSPITAL, LUST AWAITING A REPLY, I AM ALSO STILL WAITING FOR AN APPOINTMENT TO SEE MY CONSULTANT TO DISCUSS MY BIOPSY. TALKING OF THE BIOPSY ALL MY PAIN HAS NOW GONE (THANK GOD).
I NOTICED RON HAS SET UP A HEPATITIS C FORUM, I THINK IT IS A GREAT IDEA, WELL DONE RON. I HAVE PUT A LINK TO THE FORUM ON THE BOTTOM RIGHT OF THIS PAGE.
I TRIED POSTING LAST NIGHT BUT BLOGGER WAS NOT WORKING. DOES ANYONE ELSE HAVE PROBLEMS POSTING?

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.

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.”

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.