Wife of a ticker
New member
Dear all,
it's a bit of therapy joining this group as our story is one from 6 years ago and so not the current theme in our life. However, I wish there had been information for us around then as we were completely in the dark and I want to describe it just in case anyone was in the same position.
Mark was 27, always had been incredibly fit and healthy without any medical issues apart from being told if he ever saw a dr that he BP was on the high side but this was attributed to white coat syndrome. One day in the summer of 2005 we have someone knock on our door to do a health survery which we agreed to as I have Ehlers-Danlos syndrome, a rare connective tissue disorder. As part of this they routinely did our BPs and Mark's was 175/54...this shocked the hell out of both myself and the nurse doing the survey as it was in our own house and he was relaxed. She repeated it but it was in the same limits so she said that it would be worth checking this out with our GP. Mark had been feeling a bit tired so he went and our dr did a load of blood tests and ran an ECG. The ECG showed severe enlargement of Mark's left ventricle but the dr thought that this was probably just a glitch with the machine and sent him home. The bloods revealed high cholesterol and a borderline overactive thyroid and as his family have a long history of thyroid disorders, he was referred to an endocrinologist for further tests.
I had had reconstructive knee surgery so was on crutches and having physio regularly and during the time Mark had a repeat thyroid test which was normal. At my post op check up with the same GP I asked whether Mark should still bother seeing the endo guy as the test was normal, he mulled it over and thought that he might as well. This decision probably saved his life. When feeling to see if Mark's thyroid was enlarged, the endo dr felt a severe irregularity in Mark's pulse, I was called in as I was at physio in the hospital and another dr appeared asking lots of questions about his health and whether he'd ever had rheumatic fever. After going in thinking he may have a thyroid issue we were told that Mark, aged 27 had a serious heart murmur and would definitely need surgery to replace his heart valve and quickly. He had an echo the following week where the sonorgrapher didn't even speak to us, let alone give any indication of whether anything was wrong. Then we received the devastating phonecall from our GP to say that Mark had a BAV with severe stenosis and regurgitation and a very enlarged and distended left side of his heart. Apparently this is the most 'interesting' and rare heart murmur you can have?!
He was referred urgently to see a cardiologist but the letter was lost and it took 8 weeks to get an appointment. Within this time Mark's health had deteriorated significantly, he was grey and fell asleep as soon as he sat down. There had also been extreme psychologically symptoms of him suffering from personality changes where my calm, loving, sensitive husband of 4 years had become aggressive and horrible to live with. He was going out drinking all night, going for 3 hour bike rides to 'prove' there was nothing wrong with him and it was all a mistake. He would not speak to anyone about what was happening; told everyone that there was nothing wrong with him and stated that he wanted to end our marriage and live life on his own. I finally convinced him to stay in our home of 6 years until he was fully recovered and then I would buy him out of the house and help him to move out. A week before he was due to see the cardiologist Mark collapsed and was taken into hospital with a BP of 183/84 and in congestive heart failure. They were concerned that he had encocarditits but thankfully he didn't and after 8 days of intensive treatment he was allowed home with a surgery date for the week after.
July 26th 2006 was no doubt the worst day of my life. The man on that hospital trolley was not the person I had met and fallen in love with and my biggest fear was that he would die while I hated him for the hell that he had put me through by telling me he didn't love me, even kissing another girl when out drunk one night after 6 years of a fantastic life when he had never dreamed of looking at anybody else. I knew that our marriage was over but I didn't want the wonderful memories of that time tainted by 6 months of hell. The operation was tricky because of the distorted shape of his heart but they fitted a 24mm St Jude valve and he set records for getting off life support and oxygen post op. The recovery was pretty awful as the nurses at the hospital were not used to dealing with a now 28 year old man as he was the youngest on the ward by 30 years. He said the day after surgery that he'd wished they had let him die instead. Unfortunately the surgeon said that he would have lived a maximum of 6 months without the surgery as so much damage had been caused.
So what happened next? Almost immediately the man I married appeared again. The surgeon wisely told me that Mark was so oxygen starved that he would not have been culpible for his own actions in a court of law and that I could not realistical hold him responsible for things that had happened while he was so ill; he also remembered very little from the previous few months and now has no memory of it at all. Unfortunately my memory of the time is everlasting and it took some time to get past it and we did. So within a year of his surgery we bought a new house as our first mortgage had been paid off thanks to critical illness insurance. Mark became self employed as an electrician so that he could ease himself back into it gradually and rest when needed. So now we are celebrating our 9th wedding anniversary next week and have 3 year old and 20 month old boys and our life couldn't be better.
I've always held the belief that things happen for a reason and, although I struggled to seee what possible good may come of my husband nearly dying - our marriage has been 100 times stronger than it was before. As you all know, nothing ever seems worth arguing about when you ave been so closing to losing each other forever.
So that is our story. I am married to an amazing man who is kept alive by a very expensive piece of carbon fibre and in the words of our 3 year old "daddy's heart ticks like a clock". Now we would just like to wish for an alternative to warfarin!!!
Holly
it's a bit of therapy joining this group as our story is one from 6 years ago and so not the current theme in our life. However, I wish there had been information for us around then as we were completely in the dark and I want to describe it just in case anyone was in the same position.
Mark was 27, always had been incredibly fit and healthy without any medical issues apart from being told if he ever saw a dr that he BP was on the high side but this was attributed to white coat syndrome. One day in the summer of 2005 we have someone knock on our door to do a health survery which we agreed to as I have Ehlers-Danlos syndrome, a rare connective tissue disorder. As part of this they routinely did our BPs and Mark's was 175/54...this shocked the hell out of both myself and the nurse doing the survey as it was in our own house and he was relaxed. She repeated it but it was in the same limits so she said that it would be worth checking this out with our GP. Mark had been feeling a bit tired so he went and our dr did a load of blood tests and ran an ECG. The ECG showed severe enlargement of Mark's left ventricle but the dr thought that this was probably just a glitch with the machine and sent him home. The bloods revealed high cholesterol and a borderline overactive thyroid and as his family have a long history of thyroid disorders, he was referred to an endocrinologist for further tests.
I had had reconstructive knee surgery so was on crutches and having physio regularly and during the time Mark had a repeat thyroid test which was normal. At my post op check up with the same GP I asked whether Mark should still bother seeing the endo guy as the test was normal, he mulled it over and thought that he might as well. This decision probably saved his life. When feeling to see if Mark's thyroid was enlarged, the endo dr felt a severe irregularity in Mark's pulse, I was called in as I was at physio in the hospital and another dr appeared asking lots of questions about his health and whether he'd ever had rheumatic fever. After going in thinking he may have a thyroid issue we were told that Mark, aged 27 had a serious heart murmur and would definitely need surgery to replace his heart valve and quickly. He had an echo the following week where the sonorgrapher didn't even speak to us, let alone give any indication of whether anything was wrong. Then we received the devastating phonecall from our GP to say that Mark had a BAV with severe stenosis and regurgitation and a very enlarged and distended left side of his heart. Apparently this is the most 'interesting' and rare heart murmur you can have?!
He was referred urgently to see a cardiologist but the letter was lost and it took 8 weeks to get an appointment. Within this time Mark's health had deteriorated significantly, he was grey and fell asleep as soon as he sat down. There had also been extreme psychologically symptoms of him suffering from personality changes where my calm, loving, sensitive husband of 4 years had become aggressive and horrible to live with. He was going out drinking all night, going for 3 hour bike rides to 'prove' there was nothing wrong with him and it was all a mistake. He would not speak to anyone about what was happening; told everyone that there was nothing wrong with him and stated that he wanted to end our marriage and live life on his own. I finally convinced him to stay in our home of 6 years until he was fully recovered and then I would buy him out of the house and help him to move out. A week before he was due to see the cardiologist Mark collapsed and was taken into hospital with a BP of 183/84 and in congestive heart failure. They were concerned that he had encocarditits but thankfully he didn't and after 8 days of intensive treatment he was allowed home with a surgery date for the week after.
July 26th 2006 was no doubt the worst day of my life. The man on that hospital trolley was not the person I had met and fallen in love with and my biggest fear was that he would die while I hated him for the hell that he had put me through by telling me he didn't love me, even kissing another girl when out drunk one night after 6 years of a fantastic life when he had never dreamed of looking at anybody else. I knew that our marriage was over but I didn't want the wonderful memories of that time tainted by 6 months of hell. The operation was tricky because of the distorted shape of his heart but they fitted a 24mm St Jude valve and he set records for getting off life support and oxygen post op. The recovery was pretty awful as the nurses at the hospital were not used to dealing with a now 28 year old man as he was the youngest on the ward by 30 years. He said the day after surgery that he'd wished they had let him die instead. Unfortunately the surgeon said that he would have lived a maximum of 6 months without the surgery as so much damage had been caused.
So what happened next? Almost immediately the man I married appeared again. The surgeon wisely told me that Mark was so oxygen starved that he would not have been culpible for his own actions in a court of law and that I could not realistical hold him responsible for things that had happened while he was so ill; he also remembered very little from the previous few months and now has no memory of it at all. Unfortunately my memory of the time is everlasting and it took some time to get past it and we did. So within a year of his surgery we bought a new house as our first mortgage had been paid off thanks to critical illness insurance. Mark became self employed as an electrician so that he could ease himself back into it gradually and rest when needed. So now we are celebrating our 9th wedding anniversary next week and have 3 year old and 20 month old boys and our life couldn't be better.
I've always held the belief that things happen for a reason and, although I struggled to seee what possible good may come of my husband nearly dying - our marriage has been 100 times stronger than it was before. As you all know, nothing ever seems worth arguing about when you ave been so closing to losing each other forever.
So that is our story. I am married to an amazing man who is kept alive by a very expensive piece of carbon fibre and in the words of our 3 year old "daddy's heart ticks like a clock". Now we would just like to wish for an alternative to warfarin!!!
Holly
