Post by Admin on Nov 17, 2016 22:00:31 GMT
My name is ... and I live in Hull. I was born in 1950.
Way back in October 1976 I gave birth to my first and only child. I suffered severe bleeding and after an emergency hysterectomy in January 1977, was diagnosed with Choreo carcinoma. Until this time I had a very healthy life and was an athlete and a Policewoman.
Over the next 5 years I had many courses of radio therapy and chemotherapy at the Weston Park hospital and Jessops hospital in Sheffield and Charing Cross Hospital in London. I have no complaints about the treatment in any of these hospitals – they saved my life.
BUT:-
I had many blood transfusions during this time in all the hospitals. Not long after I started treatment in Charing Cross Hospital (In 1978) I was told that I had a blood disease and would have to be in a single room any time I was admitted to the hospital, which was regularly.
I was shocked and upset as I wasn’t given any details for at least a day. Then I was told that I had Hep B, probably from a blood transfusion I had received before going to Charing Cross. No more information was given. To be honest, I was too ill to be too concerned at the time as I was told that I would have regular blood tests to monitor the Hep B. I did ask about side effects and was told that it wasn’t fatal and as I visited the hospital regularly they would keep an eye on me.
I was nursed in a single room for the rest of that particular stay in the hospital, but after that I was in a ward with other patients.
I did make enquiries with nurses and doctors, none of whom seemed too concerned at the time, apart from wearing gloves during blood letting and transfusions. I was told to be very careful if I had a bleed and my husband and daughter were tested for the virus – with negative results.
I had my last chemotherapy in September 1981. I continued to have regular blood tests for the Hep B at the Kingston General hospital in Hull ( my home town). After few years I was told that the levels had gone down considerably and I wouldn’t need any further tests. I was also told to be still careful of any bleeds and to take precautions if I came into contact with anyone during a bleed. Which I did of course, especially with having a young child.
In the 1980’s I was due to have a mole removed from my back and advised the surgeon of my Hep B. He refused to operate and sent me away feeling distressed and dirty. He told me I was a big risk to anyone coming into contact with me and shouldn’t have operations unless the staff were informed well in advance and they were willing to operate on me ! That is when I started to worry.
I made an appointment and visited a consultant at the Castle Hill Hospital (Hull) Infectious diseases unit. He basically told me that as long I was careful with any bleeds I had and informed medical staff there was not a huge problem. I was not given any other advice or told what the future held !
Years passed by and I must admit I thought I must be clear of any Hep B as I did not seem to have problems and my health was good.
In 1998 I realised that I was continually tired, bloated stomach, just generally run down all the time, with red spots over areas of my face and body, itching on my arms and legs. I knew I must have a problem with my bowels as I was always in the loo and put other symptons down to that. But I put off going to the doctor as I coped and we decided to have a holiday, then sort me out !
After the holiday in the December 1998, when I really wasn’t well, I visited the doctor. My main symptoms seemed to be bowel problems, so off I went to the consultant. It was during his examination that I mentioned the spots. He immediately told me I must have liver problems. I was admitted to hospital the next day (frightening). This was January 1999.
To cut a long story short, I did have bowel problems, but more worrying I had cirrhosis of the liver. The consultant told me this was due to the hepatitis B. I had no idea it could be so bad and that I could be in such danger!
After many in patient stays, tests and biopsies at local hospitals, during which I was told I needed a stoma as my I had strictures in the bowel caused by the radiotherapy in 1977, I was sent to St James in Leeds in December 1999. I was told I had maybe 6 months to live.
In March 2000 I had a successful liver transplant and a stoma. The staff were life savers and I am forever in the debt of the wonderful family who, during their devastation of the death of a loved one, gave me the chance of a life with the donation of my new liver.
I now have a problem with my kidneys due to medication I must take for life.
The shocks, the pain, the devastation, the family upset, the trauma, could all have been avoided had blood transfusions been properly monitored way back at the beginning of my cancer treatment. If I had been better informed at the time and the few years afterwards, maybe I would have been more aware of the problems that could ensue – who knows?
Maybe I am partially to blame as I didn’t seek more advice – but I thought after all the consultants I had seen and tests I had had, that there wasn’t any real danger. I was never offered counselling, never had any hospital appointments for the Hep B, never given any follow up telephone numbers. Maybe those days it was not regarded as dangerous, not enough known about it.
I am now older and definitely wiser! I read, follow stories and look for advice on any illness I have.
To be fair, St James Hospital staff and my GP are very good and offer advice on any subject I ask about.
That’s my story. I know it isn’t really of any help to anyone now, but hopefully times have changed and advice is freely given. Better still blood transfusions ( I am told) now come from safe sources.
35 Dot Wright
Way back in October 1976 I gave birth to my first and only child. I suffered severe bleeding and after an emergency hysterectomy in January 1977, was diagnosed with Choreo carcinoma. Until this time I had a very healthy life and was an athlete and a Policewoman.
Over the next 5 years I had many courses of radio therapy and chemotherapy at the Weston Park hospital and Jessops hospital in Sheffield and Charing Cross Hospital in London. I have no complaints about the treatment in any of these hospitals – they saved my life.
BUT:-
I had many blood transfusions during this time in all the hospitals. Not long after I started treatment in Charing Cross Hospital (In 1978) I was told that I had a blood disease and would have to be in a single room any time I was admitted to the hospital, which was regularly.
I was shocked and upset as I wasn’t given any details for at least a day. Then I was told that I had Hep B, probably from a blood transfusion I had received before going to Charing Cross. No more information was given. To be honest, I was too ill to be too concerned at the time as I was told that I would have regular blood tests to monitor the Hep B. I did ask about side effects and was told that it wasn’t fatal and as I visited the hospital regularly they would keep an eye on me.
I was nursed in a single room for the rest of that particular stay in the hospital, but after that I was in a ward with other patients.
I did make enquiries with nurses and doctors, none of whom seemed too concerned at the time, apart from wearing gloves during blood letting and transfusions. I was told to be very careful if I had a bleed and my husband and daughter were tested for the virus – with negative results.
I had my last chemotherapy in September 1981. I continued to have regular blood tests for the Hep B at the Kingston General hospital in Hull ( my home town). After few years I was told that the levels had gone down considerably and I wouldn’t need any further tests. I was also told to be still careful of any bleeds and to take precautions if I came into contact with anyone during a bleed. Which I did of course, especially with having a young child.
In the 1980’s I was due to have a mole removed from my back and advised the surgeon of my Hep B. He refused to operate and sent me away feeling distressed and dirty. He told me I was a big risk to anyone coming into contact with me and shouldn’t have operations unless the staff were informed well in advance and they were willing to operate on me ! That is when I started to worry.
I made an appointment and visited a consultant at the Castle Hill Hospital (Hull) Infectious diseases unit. He basically told me that as long I was careful with any bleeds I had and informed medical staff there was not a huge problem. I was not given any other advice or told what the future held !
Years passed by and I must admit I thought I must be clear of any Hep B as I did not seem to have problems and my health was good.
In 1998 I realised that I was continually tired, bloated stomach, just generally run down all the time, with red spots over areas of my face and body, itching on my arms and legs. I knew I must have a problem with my bowels as I was always in the loo and put other symptons down to that. But I put off going to the doctor as I coped and we decided to have a holiday, then sort me out !
After the holiday in the December 1998, when I really wasn’t well, I visited the doctor. My main symptoms seemed to be bowel problems, so off I went to the consultant. It was during his examination that I mentioned the spots. He immediately told me I must have liver problems. I was admitted to hospital the next day (frightening). This was January 1999.
To cut a long story short, I did have bowel problems, but more worrying I had cirrhosis of the liver. The consultant told me this was due to the hepatitis B. I had no idea it could be so bad and that I could be in such danger!
After many in patient stays, tests and biopsies at local hospitals, during which I was told I needed a stoma as my I had strictures in the bowel caused by the radiotherapy in 1977, I was sent to St James in Leeds in December 1999. I was told I had maybe 6 months to live.
In March 2000 I had a successful liver transplant and a stoma. The staff were life savers and I am forever in the debt of the wonderful family who, during their devastation of the death of a loved one, gave me the chance of a life with the donation of my new liver.
I now have a problem with my kidneys due to medication I must take for life.
The shocks, the pain, the devastation, the family upset, the trauma, could all have been avoided had blood transfusions been properly monitored way back at the beginning of my cancer treatment. If I had been better informed at the time and the few years afterwards, maybe I would have been more aware of the problems that could ensue – who knows?
Maybe I am partially to blame as I didn’t seek more advice – but I thought after all the consultants I had seen and tests I had had, that there wasn’t any real danger. I was never offered counselling, never had any hospital appointments for the Hep B, never given any follow up telephone numbers. Maybe those days it was not regarded as dangerous, not enough known about it.
I am now older and definitely wiser! I read, follow stories and look for advice on any illness I have.
To be fair, St James Hospital staff and my GP are very good and offer advice on any subject I ask about.
That’s my story. I know it isn’t really of any help to anyone now, but hopefully times have changed and advice is freely given. Better still blood transfusions ( I am told) now come from safe sources.
35 Dot Wright