We received a harrowing story from SIBF member Agnes about the direct impact of getting Hep C from contaminated blood from a blood transfusion, which we have published in our ‘Stories‘ section of the website.
We include it here, with her permission, also to illustrate the direct causal impact the virus can have on the body through time and on family members, not to mention the psychological and emotional damage it can cause living with the virus and the incumbant injustice of what she and so many others have went through.
We are in discussions with the Scottish Government about offering a psychological counselling service to members. If you feel this would help you, please get in touch by e-mail on mail@sibf.org.uk .
Private messages for the viewing of registered member’s only can be posted in our password protected Forum page sibf.org.uk/forums.
Agnes’s story
I got Hep C in 1982 after a blood transfusion I had to have after the birth of my daughter. I had a liver transplant in 2009 and while waiting on the transplant l developed Hepatopulmonary Syndrome which affects the lungs {caused by broadening of the blood vessels in the lungs of patients with liver disease}. After my transplant my breathing got a bit better but in 2011 my breathing started to get bad again and in 2014 I was told through the Hepatopulmonary Syndrome I have now went on to develop hypertension and fibrosis of the lungs and without a lung transplant I will die in a couple of years. However, the three years I went without knowing what was wrong with me I started to put on weight – the less I could breathe the less I could get about so started to put on a lot of weight. Now I have been told if I can’t lose three stone in weight they won’t consider me for transplant and as you can understand without being able to get about it is going to be hard to lose the weight that could help me by giving me gastric surgery but won’t.
I lost my son five years ago in a tragic road accident and lost a daughter nine months ago in tragic circumstances. Now my other two daughters and son face the thought of having to lose their mum at the age of 57 all because of the deadly virus I got through NHS blood.
Under the circumstances I think I deserve the right to have the gastric balloon operation that they give to morbidly obese people who have caused their own weight problems so that I can get the transplant I need to save my life and stop my other children having to go through any more misery.
How can I convince my doctors to give me the help I need?
Can anyone reading my story help me or tell me what else I can do? After all, my health problems have all been caused through the blood transfusion I had in 1982 after the birth off my daughter, that was supposed to save my life, not give myself and my family years of ill health and misery.
I would also like to mention that I lost my husband in 2002 to the Hep C virus which he got from me. He died from multiple organ failure at the young age of 39 years.
If I knew I had contracted this deadly virus, his death could have been prevented. But with no one getting back to me and letting me know that they could have this deadly virus, you share things like tooth brushes, tweezers, scissors and all sorts of things with your partner thinking it is safe to do so, not knowing that doing these things with your partner that you have actually caused his death.
So I more or less killed my husband and my kids’ father all because of a blood transfusion I had to have seemingly to save my life and by giving me the transfusion I went on to murder my own husband. I have to live with that, and my poor daughter who I had at the time, blaming herself for being born and me telling her how precious she is to me and not to be so silly. She and her sisters and brothers are the best things that ever happened to me I wouldn’t change any of them for the world.
Yours Agnes
Hep C victim off NHS.
1 Comment
Thank you Tommy for printing my story I hope this engurages other people to come forward who had transfusions between the 1970 and 1990 as there are still people out there who are walking around not knowing thay have Hep C through having a transfusion so could be passing it on to other inocent family member’s. Also with members of the public through injury and other people helping because, if you cut yourself in an accident, what is the first thing people do thay run over to you had try to stop the blood flow and if thay have a graze or old cut or scratch themselves, even then thay are going to catch the Hep C from you not knowing themself thay have Hep C. So any one who had a transfusion in that period of time I beg them to go and get tested so this horrible disabling decease can be controlled before other people don’t suffer as I and thousands of others have already sufferd. I did a TV programme, ‘Frontline Scotland’ I think it was, in 2004, when I found out I had Hep C to ask people to come forward and I think around 500-600 people did come forward but how many thousands of people didn’t see the program that could have come forward if thay had. My surname was different then, it was Agnes Brand. I like to think I helped some people at least but not enough, there are still more poor people out there who don’t know and have maybe passed it on unknowing to them and if you think this story could maybe help more people by all means use it. Yours, Agnes.