Born 1st January 1963, died 18th August 2010
Mark. Born on New Years Day 1963. The youngest of a family of 5. Four brothers & one Sister. Of those five children, three were born with severe Haemophilia A. Mark was one of them. I first met Mark in 1987. We became a couple in 1989 and married in 1997.
Childhood for Mark and his two brothers with haemophilia was far from normal. They were all, one by one, taken away from their Mother and Father and placed in different children’s homes.
In those days, children with disabilities were not allowed to live a normal existences, especially children who were constantly hospitalised, in pain, and covered in bruises, so it was inevitable that social services would become involved as for one reason or another they all suffered injuries but it wasn’t from any kind of abuse, it was from boys being boys and playing rough as their mother didn’t ever try to wrap them up in cotton wool. She allowed them as far as possible to live the way little boys are supposed to live but in turn this meant many visits and stays in hospital for them all.
I’m not sure what happened to the eldest brother when he was a child, but the middle brother was placed in a Barnardo’s home and Mark was taken at the age of 4 years old into a boarding school where he was made to live Monday to Friday and allowed home at weekends and holidays. I say he was ‘taken’ and that’s exactly how it was… He was ripped from his Mothers arms one day while she was visiting him in hospital, she had no say in it whatsoever…they just took him. The treatment in those days was Cryoprecipitate* and bed rest… not the most effective treatment, but as we all know now, it was certainly the safest.
Skip forward a few years and Mark was now a teenager and living back at home, going to a school for children with disabilities and being treated with Factor V111. His brothers also were receiving Factor V111. From a mother’s perspective it must have been so hard trying to cope with three haemophiliac boys. I can’t imagine the day to day issues she must have come up against trying to keep all of them healthy whilst also having two non-affected children to care for… The stress of a lifetime of worry certainly took its toll on both parents. Mark’s Mom suffered mental health issues in later life and was eventually placed in a home as she became very unpredictable and unstable (Mark was heartbroken). His Dad died in his middle 50’s of a heart attack. I believe he was at his niece’s wedding reception when it happened. So, not only did they have to live with the fact that three of their sons had this genetic disability (the guilt of that played its part in their demise,) but they were then hit with the bombshell that the very treatment which was meant to improve their lives and which they had been willingly injecting into their children, was now going to kill them.
It’s now 1970’s/80’s and all three are now infected with HIV. Who knows who it was that administered that first infected dose? For the two older brothers it was most likely themselves or hospital but for Mark it could have been himself, hospital or his Mom. As far as being infected is concerned it makes no difference whatsoever, but for Mark it was a question that troubled him. He often brought it up and he would talk about it as though it didn’t matter but to him, it clearly did. I believe that deep down he wanted to believe that the hospital did it. He apportioned blame to the hospital because he would have found it difficult to cope with if he believed he did this to himself. The fact that he needed this treatment and there was nothing he could do about that didn’t enter his mind in reference to WHO gave him that first infected injection.
It’s early 1980s and Mark is at a routine hospital appointment. All the usual discussions have taken place and the general examination of target joints etc, nothing unusual, then:
“Oh there’s one more thing Mark before you go, you have been infected with HIV and your life expectancy is five years, nothing can be done. Our advice is to go and live your life the best you can”
SMACK…!!!! That’s exactly how he was told and then, he was sent on his way… There was no follow up, no information. He was in a daze but he just left the hospital, not really knowing what it meant or what he needed to do. He wasn’t much more than a child. Over the next few years it really wasn’t mentioned. Not by Mark, his parents, the hospital… no one. Obviously the hospital glided over it during appointments but there was nothing constructive and no real help. It really wasn’t discussed and he just got on with his life as best he could. It wasn’t until much later that he discovered that he’d been infecting himself over and over and over again.
Being told that he would be dead within 5 years kind of gave him a licence (in his own head) to do what he liked, when he liked. He developed a liking for spending money. As far as he was concerned if he wanted something he was going to have it, and he did..!!! That mentality caused many financial problems but he really didn’t care and why should he? Financial strain puts strain on relationships so one thing on top of another, over and over again started a downward spiral that got way out of control.
The 5 year timescale came and went but the mindset didn’t. On many occasions over the years the stresses caused by this brought us close to breaking point. It culminated in 2006 when due to the amount of cars brought on finance (and never paid off) Mark (we) ended up owing £24k on a £4k car and Marks solution was to sell our home to one of these companies that buy your property and then rent it back to you!!! He couldn’t see anything wrong with it or with what he’d been doing. His mental state was directly related to what had happened to him but I couldn’t cope with it anymore and I finally put my foot down. We sorted it out after that!!! Realistically it should have been sorted out years earlier than that but like he said, he was a dead man walking and ‘they’ did it to him so why shouldn’t he have it… who was I to argue..?
So now we’re in the early/mid 1990’s and we’re at yet another routine appointment. Once again, all the usual stuff, nothing out of the ordinary until:
“Mark, you’ve tested positive for Non-A Non-B Hepatitis. Don’t worry about it, we’ll discuss it, if you want to, at your next appointment”
This time I asked questions. Mark was in a bit of a daze again but I was angry… how the hell could they do this to him again?*** I can’t remember my exact comments but the haemophila doctor understood in no uncertain terms how angry and upset I was about it. When we eventually left we really were none the wiser. All we knew was that he had been infected with another virus. We had been told that this probably wouldn’t affect him for 25-30 years so although we were concerned about it there didn’t seem to be the same kind of urgency there was when he was told about the HIV (how wrong were we). So, once again we went home and just tried to get on with it.
A year or so later he was called in for a liver biopsy. They needed to see if there was any liver damage. From that biopsy we were told he had mild cirrhosis. Once again we were assured that it was not a problem and were given the advice to avoid alcohol… Mark was TEETOTAL all his life… what a joke…
Another year or so passed and they wanted another liver biopsy. I’ll never forget this second one. He was on the ward, waiting to be seen. Sitting up on the bed, quite happy really… I don’t think he was giving it too much thought (that’s how he dealt with things mostly) The Haemo doc came in, which was unusual as he had never come to any other inpatient procedures:
“Morning Mark, I just thought I’d pop down to let you know that you have been exposed to vCJD. I’ve put it in writing to you, here’s the letter. I thought it would save posting it” ****
OMFG..!!! Is this for real? Here he is, waiting for a procedure and the haemophilia doctor thinks it’s ok to just casually pop down and drop him yet another bombshell… The saddest part was that Mark didn’t care. In fact I think he expected it. At no point (up to this point) was he treated with any dignity, respect or compassion by his doctor.
We arranged a meeting with the haemophilia doc a couple of years later to discuss the treatment Mark had received and how he’d been treated over the years. We let him know point blank the way we felt and by the time we left the doc had his head in his hands and apologised profusely saying:
“I’m so sorry, we’ve really let you down”
It seemed as though they thought it shouldn’t matter… but it did.
In 1999 Mark needed a knee replacement. This was going to be the first major surgery he’d had and it was to be done at an Orthopaedic Hospital not at the hospital he was used to. I can say without a doubt it was the most stressful day of my life. I had a million things going through my head not least of which was him bleeding to death on the operating table. They told us the surgery would take about 3.5 hours… it actually took almost seven hours.
I have to say that the staff at the orthopaedic hospital were lovely, but every time they had to deal with Mark they came togged out in full protection regalia, white full body suit, gloves, mask and carrying forms with Bio-Hazard emblazoned across them in full view of everyone else on the ward… For Mark it was awful… He felt like a rabbit in a lions den and couldn’t wait to get out of there. Luckily that operation went well and after rehabilitation and physio and hydrotherapy that joint was almost pain free from that point on.
Next (approx 2004) came an ankle fusion. That surgery was done at the same hospital as the knee replacement but this time they gave him a private room. He was over the moon with that as he had his own telly!!! It was so much better as no one could see the forms or hear the conversations and they didn’t come dressed in a white suit either although it was still awkward when they had to take blood but as he was only in hospital for a few days it wasn’t so bad.
Going back to approx 1998 Mark’s HIV viral load had gone through the roof and his CD4 count was terribly low so he had to start combination therapy. He had a multitude of problems with the side effects from this with things like G.I Bleeds, constant diarrhoea, tiredness, sickness, diabetes and lipodystrophy. Of all of these side effects the lipodystrophy concerned him the most because it is a condition where all the fat in the body moves to one place and leaves other places (such as the face and arms) looking skeletal.. He actually looked like an Auschwitz prisoner, it was awful. For years he tried his best to hide his illnesses from the world and on the whole he managed it but there was no hiding it now. He looked so ill and it seemed to happen in a very short period of time so it was very noticeable. He hated it. Although this affected him mentally the most, physically the diabetes took the worst toll. He very quickly progressed from treatment via tablets to insulin. So now he not only had to inject Factor V111 but he had to inject insulin twice a day… he was getting more and more depressed and finding it more and more difficult to be cheerful and paint on a smile. He ended up on antidepressants which helped a little but he just wasn’t the same, it was like someone turning a light off with a dimmer switch. I could see the life draining out of him.
One of the complications of diabetes is angina and heart disease. Mark started in approx 2005/6 suffering pain in his jaw and down his left arm. He tried to ignore it but eventually was sent for several different tests one of which was an angiogram. It should have been done on a day unit with a stay of a couple of hours, it ended up being a stay of two days as they couldn’t stop the bleeding from his artery. They diagnosed CAD and a mitral valve which needed replacing. This, without a doubt was the worst time of our lives. He was told that if he didn’t have heart by-pass surgery he would be dead within twelve months, but because of his many health issues we couldn’t find a doctor who was willing to do the surgery. We saw several and they all said no, but then a wonderful consultant, Mr Wilson, agreed to do it. He said his opinion was that after he explained ALL of the risks in no uncertain terms and then sent us away to think about it, if we then came back and said we wanted him to go ahead, he would. He said everyone deserves a shot at life and if Mark was prepared to take that chance it should be his decision.
From that moment Mark had made up his mind, he was going ahead with the surgery. I totally didn’t want him to do it, the risks were massive. He was given something like a 10% chance of survival but, if he didn’t have it done he had a 0% chance. I wanted to run away. I cried and cried (never in front of Mark) My mind was in turmoil and it was constantly going around in my head. Every waking moment was filled with thoughts of losing him, it really was too much to bear. (I can’t imagine how Mark must have been feeling, he must have been terrified but he never said) He tried and tried to get me to tell him how I felt about it but I never did. I told him I would ALWAYS be there for him and I would always listen to him when he wanted to talk about it but I knew if I told him how I felt about it, it would have influenced his decision and this was such a massive thing that it had to be Mark who made that choice based only on how he felt about it.., my feelings were totally irrelevant. Over the next few months there were more tests and hospital visits and he was becoming more and more ill as the time went on. Eventually they gave him a date for the operation, August 26th 2008. In the two months between being given the date and him actually going in to hospital we made the best we could of that time. We did as much as possible together and crammed every minute with as much as we could fit in. We made some lovely memories and they will always be with me.
So the day came. We had been told he would be going to theatre at 10am (not before) We lived 40 minutes away so I had planned to leave at 7:30am so that I could have some time with him before he went down. At 7:20 he called me and said there had been a change of plan and they were coming for him at 8am. I went into panic mode. This might be the last time I saw him, there was no way I was going to let them take him before I’d seen him. Full blown panic attack…!!! I called the ward and was sobbing, begging them to hold off taking him till I got there. They said they would do what they could. I’m ashamed to say I drove like a lunatic to get to that hospital but I did what I had to do and I HAD to get there. I arrived there about 8:10am… his bed was empty, they’d taken him… I almost collapsed, I was sobbing, how could they do that knowing the severity of what he was having done and the chances he’d been given of surviving it..? I begged the nurses to call down to the theatre to see if he’d been anaesthetised yet, Thankfully they did, and I was told he was just being prepped… I ran to the theatre. The anaesthetist was brilliant, he met me at the doors and told me I could come in (only for 2 minutes) but I must blow my nose and wipe my eyes first. He said “you don’t want him going to sleep knowing how upset you are do you?” and he was right, I didn’t so I took a minute and composed myself and he took me in. I will be forever grateful to that anaesthetist because he didn’t have to do that for us. Such a lovely man. Anyway, I hugged Mark and kissed him, told him I loved him to the moon and stars and back and that I’d be waiting right here when he came out and if he needed some strength, I’d got enough for us both… and then I had to leave. I lied about having strength enough for us both… L I was taken to a family room where I sobbed and sobbed and sobbed some more.
I was told to expect the surgery to last up five hours. I watched every minute of that five hours go around… then six hours, then seven, eight, nine, ten… I was frantic. No- one was telling me anything. I went to the theatre but obviously I couldn’t go in and no one came out… I went to the Haemophilia Unit (about 6 times). They called down to ask about progress but all they were told was that he was still being operated on. Eventually after 11.5 hours someone came to me and told me the surgery was over and he was being taken to the Intensive Care Unit and that they would come for me when he was settled in. I was so drained I just fell back into the chair and once again, I sobbed. After about another hour they came to talk to me. They told me that they had planned on doing two by-pass grafts prior to opening him up but once they had him on the operating table it was clear that things were much worse than they thought. He ended up with five by-pass grafts and a mitral valve repair and that’s the reason it had taken so long. They told me he was extremely ill but the next 24 hours would give a better idea of how he would recover.
Once I saw him, even though I was shocked by his appearance and the amount of tubes wires and drains, I was relieved. He was still here and still breathing (albeit on life support) and I knew that with his fighting spirit he would get through it. He was sedated over night then early the next morning they stopped the sedation and let him wake up in his own time. It took him many hours; in fact, they twice had to put him back on life support because he couldn’t breathe on his own, but, they said that this was quite normal. He wasn’t properly awake for a couple of days but after that initial period I was amazed at how quickly he seemed to improve. When I walked in on the third day he was sitting in a chair… everything seemed to be going well. I had no complaints what so ever of the care he received in the ICU, they were brilliant.
On the fifth day they said he had to be transferred to the Cardiac Ward. He was still very ill but they said he was well enough to be moved, so, off he went. It was a nightmare. That ward in my opinion was not fit for purpose (but that’s a very long story). I had so many run-ins with the staff on that ward but it made no difference.
After two weeks there they said he was well enough to come home. Now you would think I’d be jumping for joy at the thought but I wasn’t. My reason… I knew my husband and I KNEW he wasn’t right, I knew there was a problem somewhere and he wasn’t well enough. I pleaded with the Sister not to discharge him but she insisted he was fine. So, they sent him home. He had scars on both legs from the groin to the ankles where they had removed veins and both of these scars became infected. They were infected while he was in hospital but they said the district nurse would come in every day to dress his wounds and that’s what happened. It was fine at first because it was the same nurse every time and she was lovely; very compassionate, but, then for some reason a different nurse came in on the following weekend.
In the seven days he’d been at home he had become more and more ill. He wasn’t eating. He could barely move. I had to wash him because he couldn’t stand up, in fact, I had to do everything for him. I had to pad the bed out with two king-sized quilts folded into 3 parts to form a soft mattress because he couldn’t stand the pressure. And then he started being sick. When this new nurse came in I told her how concerned I was about him and she almost laughed it off. (I had asked Mark to go back to hospital but he refused) The district nurse said she would get him some antibiotics prescribed because it was the infection in the leg wounds causing the problems. I told her I didn’t think that was what the problem was but she as good as told me I didn’t know what I was talking about. This was Saturday. She called the out-of-hours doctor and got him to do a prescription which I then had to collect from the out-of-hours service. As soon as I got home I made Mark take some of these antibiotics. He didn’t want to but he had no choice. He swallowed them and promptly spewed them back up. He was so very poorly, my heart was breaking to see him like this. We gave it an hour or so and tried again and again back they came. I was crying now and begging him to go back to hospital but he wouldn’t. Sunday came and things were no better. By late evening he was throwing up every couple of hours and he hadn’t even got the strength to lift his head up while he was doing it. By 7am on Monday we were now arguing because I could see him dying in front of me and he wouldn’t do anything about it so I told him straight, he either let me get him in the car and take him to hospital or I was calling an ambulance and I would make them take him. He gave up and let me take him. By the time we got there he couldn’t walk at all. I had to run inside and grab a wheelchair. It was a real struggle getting him into it, I almost had to pick him up and put him in it. He was rushed straight back to intensive care where I was told another 24 hours and he would have been dead. He had almost total renal failure, his body was full of toxins, he had fluid in the pericardial sack which was restricting the function of his heart and was infected, his lungs were filling up with fluid and he had a massive infection in the chest wound which had thick, vile fluid running like a river from it once they put pressure on it. He had many other things going wrong too and was so ill he was put on life support. It was horrendous but at least now he was getting the help he needed. I was relieved but I was also furious because (a) he shouldn’t have been sent out in the first place because I told them he wasn’t well enough and (b) the district nurse should have taken me more seriously when I spoke to her. I was so angry I could have killed somebody.
After three days he was well enough to go to the ward again and much as I hated it he had to go to the cardio ward. The Sister there took me into her office and apologised to me. She admitted that she should have listened to me and said that in future she would take relatives more seriously. I let it go at that as my only concern was getting Mark well enough to come home.
He was in hospital for two weeks. In that time he had to have fluid drained from around his heart and lungs three times, and he had ongoing problems with the scars on his legs. He was taken back to theatre as the flesh around some portions of his leg wounds had become necrotic so they had to be debrided; this happened twice. He also had many problems with the infection on his chest wound and had to be put on a vacuum machine to help get the massive quantity of infected fluid out of it more quickly. He was on that machine for almost a week, but eventually and slowly he started to recover and he picked up quite well. He was in and out of hospital a few times to have fluid drained but eventually that stopped and he got back to some sort of normality (whatever that is) although he never really fully recovered from it. So, we tried to just get on with living.
During this time Marks middle brother had been diagnosed with liver cancer. (His eldest brother had passed away in 1987) He lived 120 miles away from us and because of how ill Mark was there really wasn’t anything we could do to help him. When his brother became so ill that it was evident the outlook wasn’t good, Mark decided he had to go to see him. I didn’t try and talk him out of it because I remembered how I felt when they took Mark to theatre before I got there and I thought I’d never see him again; I didn’t want Mark to have to feel like that.
I couldn’t take him because a couple of years earlier my Mom had a massive stroke which killed a third of her brain and left her paralysed on her right hand side and unable to speak. Because of the situation with Mark I couldn’t have her to live with me, I just wouldn’t have been able to cope as I also have health issues of my own, so, she had to live in a nursing home. It broke my heart. I hated myself for allowing it and it’s one thing I will never as long as I live, forgive myself for but, every day, I picked her up and brought her to my home just after breakfast then took her back for a couple of hours at lunch time then picked her up again around 2pm and then took her back around 5pm. It was exhausting but I had to do it. All the time Mark was ill and in and out of hospital I had to just pick her up just once a day because I had to spend the rest of the day at the hospital. This went on for six years until she passed away in 2009.
Looking back at that time I really don’t know how I coped with it all but this was the reason I couldn’t take Mark to see his brother so, he drove himself. I was so worried about him. At this point he only weighed about 8 stone and still wasn’t really eating properly so I told him to stay for a couple of days and not drive straight back. Between the middle of November and the end of December Mark went to see his brother a couple of times. A couple of days before Christmas he had a call to say things had taken a turn for the worst and maybe he should come and see his brother so he drove down on the 23rd December, and drove back on the 24th (Very late, but he wanted to be with me on Christmas day,) then he drove back again very late on Christmas night and stayed at the hospital with him until sadly, on the 28th December 2008, he passed away. Mark was with him when he died.
So now were in 2010. Recovery had been very slow and as I said before he never really recovered properly but he did at least have a few months where he felt somewhat better and just tried to enjoy his life the best he could. He started in February to have severe pain in his right shoulder when he raised his arm. He wasn’t too concerned really because he wasn’t in pain with it when he was resting. He saw a couple of doctors with it and x-rays and other tests were arranged along with an MRI. After the MRI he was told he had an arthritic spur in the joint which would need shaving off so a date was arranged to get that done. 7th June 2010. He went into hospital, went to surgery was in overnight and home the next day. All went well. The doctor came to discharge him and told him everything had gone ok and he’d receive a follow up in due course. After being home a few days he said his shoulder felt much better. It still wasn’t pain free but, he was happy with it. His follow up appointment arrived, so in mid-July we went to the outpatient clinic. He was examined and he was asked a few questions then the doctor looked through Marks file and turned to us looking a little confused and said “Oh, you didn’t actually have anything done” We were puzzled as he’d gone to theatre and he had a wound on his shoulder and the doctor had told him all went well but apparently once they had him on the operating table they decided not to do the procedure! I believe I know why… I obviously didn’t know at the time but I now believe that they saw at that point that he had much more serious problems and decided to just sew him up and ship him out.
A couple of weeks later he was a bit concerned because his stomach was swelling up. It wasn’t too bad at first but after a couple of days he looked pregnant. We went to the Haemophilia Unit, not really thinking much about it but as soon as the nurse saw him we saw the look on her face and knew something wasn’t right. I must say the staff on the unit were amazing. They got different doctors and other specialists come up to see him. They took him for x-rays and did bloods… they ran around him like headless chickens. This was the 2nd August. We came home waiting for the results of the tests. Around 7pm that evening we had a call to say he needed to come back to hospital. Mark said he would go the next day but they insisted he go that night. He was admitted to the Liver Unit. He was on the unit for two weeks and in that time he had to have his stomach drained twice a day, every day as he was just filling up with fluid, but not once did anyone say it was anything serious. They told him that sooner or later he would stop creating this fluid and that would be that but, he never did. Because he was in a city hospital, occasionally I would be five or ten minutes late getting there for visiting due to traffic or nowhere to park. It never really bothered him although a couple of times he did say I should leave the house ten minutes earlier!!! So when he phoned me on the 16th August and said “Make sure you’re not late today, I’m sick of it” I was a bit taken aback but I just said “I’ll be there” and I was.
I had the shock of my life when I walked in to his room. There were two professors in there, a consultant, a specialist nurse and two other nurses along with two porters… my heart sank. They had waited for me to get there before telling me they were moving him to ICU. They said they had found something on his lungs and they couldn’t stop the fluid from building up on the ward but there were much stronger medicines that they could give him in ICU; he just couldn’t have them on a ward. In my heart I knew this was bad but I still thought he’d be coming home. We all went to the ICU and I was put in a room while they were settling him in. The staff on the Liver ICU were amazing, so, so kind and considerate and thoughtful. They kept coming to me to see if I was ok and to tell me what was happening. I was glad he had been taken there because now he would get sorted out. This was Monday. I was told he was very ill but they had many tests and treatments they could try. I went home happier that night knowing they were doing whatever needed to be done to help him.
On Tuesday when I went in to see him I was met by one of the professors who said they were sending him back to the liver ward. I was over the moon because I assumed that meant they had sorted him out but that wasn’t the reason. The professor told me that they can only keep someone on ICU if there is treatment for them but all the tests and treatments they had done had made no difference, so they were sending him back to be kept comfortable and to have his stomach drained again. I begged and begged them not to send him back there. I said surely there was something else they could do in ICU, that they had only had him there for one day. They reluctantly agreed to let him stay one more day and said there was another test they would do. That evening I went home devastated. I had no real idea about what was going on with him and they didn’t seem to know either. My heart was breaking yet again.
On Wednesday morning, the 18th, I arrived at ICU and Mark wasn’t there. The bay was empty. I went into a panic. The professor came to me and took me into a room where he sat me down, held my hand and looked me straight in the eye and I knew… I knew this was it… my world was about to end. Mark had been taken for another x-ray and was on his way back up to ICU. I was told that he had Lymphoma and that there was nothing that could be done; it was all through his body. He had been in hospital since the 2nd August and it had taken them until the 18th to diagnose Lymphoma. I crumbled. This couldn’t be happening.
I told the professor he was wrong and that Mark had come back from much worse than this and that he would do it again. He held my hand and gave me tissues and an apology. By this time it was about 1pm. Mark was in and out of consciousness but mostly he was sedated. At about 4pm we were asked to go into another room. Both professors were there. I was asked if I wanted Mark home. I said “Of course I do, if it’s what he wants, it’s what I want” but the other professor looked at me and said “I don’t think there’s enough time”
All this wasn’t really sinking in, I couldn’t believe it was happening. Around half past four I went back in to him. I was told to stay as long as I wanted to. I was told to look on it as my home now for as long as I needed it to be. Everyone was so kind. They took all of the wires and tubes off him and he just lay there. I held his hand and stroked his arm and his head, I told him “I will always love you my Darling” I told him “I love you with all my heart but I know you’ve had enough. If you really need to go, it’s ok, just close your eyes and sleep my darling; I love you so much” He went peacefully to sleep in my arms at 4:55. I stayed with him until just after 7pm, I couldn’t leave him. He looked so peaceful but I was told there is only a certain amount of time that someone can stay on a ward once they have passed away and they had to take him now… The staff wanted me to arrange a taxi home because they didn’t want me to drive, but I was just numb. It was really strange because I thought I would go to pieces when that time came but I felt like it was happening to someone else… It wasn’t me they were talking to. I drove home.
Marks life ended that day but so did mine, the life we had together, the life we had for all those years and the future life we had planned was gone. Now all I was left with was questions and anger… From that day my life changed completely, I am now a kind of a shell of a person, there is absolutely nothing inside me, I don’t really feel anything any more… Maybe it’s a coping mechanism, who knows but one thing is for sure, I won’t have any peace in my heart or my mind until someone is held responsible for this.
All of this pain and terrible illnesses and sorrow and anger and hatred and mental health issues and many, many other things which are way too many to write into this, which Mark suffered for all those years were as a direct result of the filthy, rotten, vile, dirty blood products which were willingly and knowingly pumped into him… Someone HAS to explain why… Someone has to be accountable for taking my husbands life and the lives of so many others whose only crime was to be in a position where they needed blood products… Sleep tight with the angels My Darlin’.,. the fight goes on… I will love you all my life. x x x
*Cryoprecipitate, often known as “cryo” for short, is a frozen blood product prepared from plasma
**Factor VIII and Factor lX were hailed as a revolutionary treatment in the 1970s. Made from pooled plasma donations from many thousands of donors, they were subsequently responsible for the mass infection of haemophiliacs around the world with viruses such as HIV and Hepatitis C.
***NOTE: Mark, along with all other haemophiliacs at the time, was almost certainly infected with Non-A, non-B Hepatitis – later re-named Hepatitis C – with his very first injection of concentrate, and re-exposed with every treatment following that until HCV screening and testing was finally introduced in September 1991.
**** In September 2004, four thousand haemophiliacs received a letter telling them that they had received plasma from the blood of a man who was later found to have died with vCJD, the human form of ‘mad cows’ disease. All of them were subsequently placed on the government’s ‘at-risk’ register.