Chat
12-09-2015, 06:01 PM
I should talk about my adopted Dad here. What has happened to him is so far beyond the realm of normality it leaves us speechless. 16 years ago when my Dad was 59, he had a massive heart attack. His father before him died of the same thing at roughly the same age or younger, and was found dead in the family driveway after the fact. My dad on the other hand was "lucky" as my mom who was at the time by trade an occupational health nurse specialist, was with him and took him to the hospital which was not very far away. This is where things begin to diverge from normal, and they have never returned to normal since.
On arrival at the hospital, Dad was lucky to get an new cardiac intern that wouldn't give up. Normally after 3 shots of the defibrillator they pronounce a person dead. Dad had 5 shots to bring him back. They also froze him with some new temperature regulation procedure to try to buy them more time. By the time I got into the hospital and into ER, I walked right by my Dad and didn't even recognise him he looked so different - charred from the shocks, and blue from the freezing! He had been dead for awhile before they got his heart going again, which is why they froze him I would think. They gave him some cutting edge drugs which also helped save his life and mitigate some of the damage which had been very extensive. He was in the hospital for quite some time and they put him on the heart transplant list.
Then began the waiting for the word that there was a replacement heart. One never came, and the system was going to let him die waiting on that list. So we had to fight to get treatment because he didn't want to give up, he didn't feel it was his time. No doctor wanted to attempt the needed repair surgery because it was complicated and chances of survival not good. Finally a doctor was found who thought he could be successful, he came out of semi-retirement to do it and Dad had to fly across the country to get the surgery as no one in his home province would take the case. The surgery turned out to be a quadruple by-pass and a repair of an aneurysm the size of a fist on the backwall of his heart. He arrested and died on the table there several times during the surgery and shortly thereafter, but still they managed to get him back. His case wasn't behaving at all like other ones like his and the medical staff were beginning to learn alot from him. He managed to make it home after the surgery and began his convalescence. After the first initial heart attack, he wasn't quite the same person as we knew before, and each arrest experienced took it's cognitive toll on him being without oxygen for so long each time.
After being home for months, i'm not sure how many now, as they told us he only had about 6 months to live initially, there were more cardiac problems. Arrhythmias and tachycardia began to occur, and more heart attacks occurred landing us in emergency with him each time to bring him back. It was decided with his cardiologist that having a defibrillator/pacemaker unit installed would manage these episodes and reboot him automatically. So travel again for more surgery. Normally this type of surgery was only supposed to last maybe a couple hours, it dragged out to 6 hours and we knew things had gone wrong. There was a code blue called, and we waited, and waited. Eventually, someone came out and told us he was out of surgery, and sure enough he had arrested on them in the middle of it. We'd been told a 60% chance of survival so we were ready for whichever way it would go. We'd been on edge every day waiting for the next episode that would take him out for good. the surgery had actually been successful, though difficult because a 3 lead model of the device was required. By now his medical file must've been a couple feet thick worth of paper. He spent a good deal of time recovering from this surgery too, but was less the person we knew again. Though he was still not done by any means, he still wanted to be here. He improved his diet and was a regular in the congestive heart failure exercising group. People were stunned when they heard what he'd been through and that he was still around and able to walk with the group too. Most people in his situation were bed-ridden and didn't last long.
After more time passes recovering at home, he had a period where things seemed relatively stable, and regular readings were taken from his device. It was working and managing to zap his heart back into normal rhythms when needed. Usually it worked without anyone really noticing. But as time wore on the long downward curve of congestive heart failure was apparent. He began to have more episodes where the device had to shock him so hard it would take him to his knees, this resulted in ambulance trips to the hospital, and some high speed driving trips for my family to make it from 9 hours away to meet him in ER. To control these episodes, it was decided that a procedure called an ablation be done, which was to burn the electrical pathways that were firing off badly. so travelling for more surgery occurred.
I think it was this particular trip where they gave him a drug called Atavan which is a common thing in these scenarios, but he took a bad reaction to it. It was fortunate I got to the hospital when I did since he was up trying to find his shoes and clothes to go home and was hallucinating severely as well as looking for my mom who was still on the road travelling there. The surgery this time was becoming the typical thing with Dad, ie not normal at all. It turned out to be way more complicated and the mapping of the pathways was very difficult. Then another code blue and he died on the table, again! Then they brought him back. We thought holy crap, how much can a body take? At the time I think the total heart attack count was now about 11. He recovered from this surgery too and it seemed to stabilize things for awhile.
More convalescence at home happened, and then things began sliding more, both cognitively and cardiac-wise. He was now dealing about 9% blood flow through his heart compared to a healthy person, so he got tired fast and everything had a slow pace of life to it. We began to really see effects of dementia, induced by so many episodes without oxygen. The scariest was the wandering, especially just before his license and car keys were taken away. One day he had another episode, so bad that we got the call to come right away because he likely wouldn't make it out of ER, and he was asking that his defibrillator be turned off, because he didn't want the pain of it anymore. Since he had filled out an advance directive, we had to abide by that knowing that he wouldn't last long without it. the doctors thought he would die within minutes of it being turned off. So we turned it off. and he survived, but in terrible condition. A bed opened up in the local hospice so he was moved there. He was there 3 months! Then he wanted to walk around and he was eating better! So we wound up moving him to a long term care facility, because he wasn't dying "fast enough" to remain qualified to stay in hospice. He did wander out of the hospice and got himself locked out one day, no one expected that because hospice patients are not usually ambulatory!
The long term care facility wasn't all it was cracked up to be. the level of care was not good, and mom had to be there with him everyday to see he got what he needed, now she was losing sleep with commuting back and forth from home and doing the same level of care she was before the hospice! At this stage in the game we are up to 2015 and the frequency of cardiac episodes is now about 1-2 times per month, and he's down to about 6% blood flow. Then some more bad stuff happened at the long term care home and get assaulted (apparently twice) by another patient. this nearly killed him since it induced immediate cardiac episodes and alot of psychological and emotional stresses on him, making him no longer feeling safe around men at all. Needless to say we moved him to a new facility immediately on discovery of the incidents. The move and everything surrounding it saw his condition degrade further, and now his body doesn't recognise it's own signals for everyday things like 'I'm hungry/tired/thirsty/need to goto the bathroom" etc and he's lost the use of both of his hands and can no longer move around without a wheelchair.
Last month we were informed that his pacemaker battery is due to run out within 2-3 weeks and that he is not a surgical candidate anymore. that was a blow as it's expected he won't last long without the battery providing power. So they took him off his meds, and now we're a month after being told the battery would die. next week if he makes it that long, we find out if the pacemaker really is dead no since we're all like What? He's still here!? On his own, no meds or pacemaker? How does this work that he has survived all this for 16 years solid and is still here? the only thing I can think of is that he's either not decided he's done, or his purpose in life is to be teaching the many medical students he has been. Despite the huge amount of family stress it has been awaiting that bad call everyday saying he's gone, he's been teaching every medical person who he encounters a great deal about just how non-standard a case can be. Nothing has happened by the books and here he is just keeping on keeping on. they'll be using his medical history in the schools for years now teaching new people! A big thing learned from his case is that if the patient wants to keep going, it's worth fighting for, no matter the cost. If a skill or procedure can help, use it. the efforts and support also put in by family and friends can also make all the difference to improve quality and quantity of life.
On arrival at the hospital, Dad was lucky to get an new cardiac intern that wouldn't give up. Normally after 3 shots of the defibrillator they pronounce a person dead. Dad had 5 shots to bring him back. They also froze him with some new temperature regulation procedure to try to buy them more time. By the time I got into the hospital and into ER, I walked right by my Dad and didn't even recognise him he looked so different - charred from the shocks, and blue from the freezing! He had been dead for awhile before they got his heart going again, which is why they froze him I would think. They gave him some cutting edge drugs which also helped save his life and mitigate some of the damage which had been very extensive. He was in the hospital for quite some time and they put him on the heart transplant list.
Then began the waiting for the word that there was a replacement heart. One never came, and the system was going to let him die waiting on that list. So we had to fight to get treatment because he didn't want to give up, he didn't feel it was his time. No doctor wanted to attempt the needed repair surgery because it was complicated and chances of survival not good. Finally a doctor was found who thought he could be successful, he came out of semi-retirement to do it and Dad had to fly across the country to get the surgery as no one in his home province would take the case. The surgery turned out to be a quadruple by-pass and a repair of an aneurysm the size of a fist on the backwall of his heart. He arrested and died on the table there several times during the surgery and shortly thereafter, but still they managed to get him back. His case wasn't behaving at all like other ones like his and the medical staff were beginning to learn alot from him. He managed to make it home after the surgery and began his convalescence. After the first initial heart attack, he wasn't quite the same person as we knew before, and each arrest experienced took it's cognitive toll on him being without oxygen for so long each time.
After being home for months, i'm not sure how many now, as they told us he only had about 6 months to live initially, there were more cardiac problems. Arrhythmias and tachycardia began to occur, and more heart attacks occurred landing us in emergency with him each time to bring him back. It was decided with his cardiologist that having a defibrillator/pacemaker unit installed would manage these episodes and reboot him automatically. So travel again for more surgery. Normally this type of surgery was only supposed to last maybe a couple hours, it dragged out to 6 hours and we knew things had gone wrong. There was a code blue called, and we waited, and waited. Eventually, someone came out and told us he was out of surgery, and sure enough he had arrested on them in the middle of it. We'd been told a 60% chance of survival so we were ready for whichever way it would go. We'd been on edge every day waiting for the next episode that would take him out for good. the surgery had actually been successful, though difficult because a 3 lead model of the device was required. By now his medical file must've been a couple feet thick worth of paper. He spent a good deal of time recovering from this surgery too, but was less the person we knew again. Though he was still not done by any means, he still wanted to be here. He improved his diet and was a regular in the congestive heart failure exercising group. People were stunned when they heard what he'd been through and that he was still around and able to walk with the group too. Most people in his situation were bed-ridden and didn't last long.
After more time passes recovering at home, he had a period where things seemed relatively stable, and regular readings were taken from his device. It was working and managing to zap his heart back into normal rhythms when needed. Usually it worked without anyone really noticing. But as time wore on the long downward curve of congestive heart failure was apparent. He began to have more episodes where the device had to shock him so hard it would take him to his knees, this resulted in ambulance trips to the hospital, and some high speed driving trips for my family to make it from 9 hours away to meet him in ER. To control these episodes, it was decided that a procedure called an ablation be done, which was to burn the electrical pathways that were firing off badly. so travelling for more surgery occurred.
I think it was this particular trip where they gave him a drug called Atavan which is a common thing in these scenarios, but he took a bad reaction to it. It was fortunate I got to the hospital when I did since he was up trying to find his shoes and clothes to go home and was hallucinating severely as well as looking for my mom who was still on the road travelling there. The surgery this time was becoming the typical thing with Dad, ie not normal at all. It turned out to be way more complicated and the mapping of the pathways was very difficult. Then another code blue and he died on the table, again! Then they brought him back. We thought holy crap, how much can a body take? At the time I think the total heart attack count was now about 11. He recovered from this surgery too and it seemed to stabilize things for awhile.
More convalescence at home happened, and then things began sliding more, both cognitively and cardiac-wise. He was now dealing about 9% blood flow through his heart compared to a healthy person, so he got tired fast and everything had a slow pace of life to it. We began to really see effects of dementia, induced by so many episodes without oxygen. The scariest was the wandering, especially just before his license and car keys were taken away. One day he had another episode, so bad that we got the call to come right away because he likely wouldn't make it out of ER, and he was asking that his defibrillator be turned off, because he didn't want the pain of it anymore. Since he had filled out an advance directive, we had to abide by that knowing that he wouldn't last long without it. the doctors thought he would die within minutes of it being turned off. So we turned it off. and he survived, but in terrible condition. A bed opened up in the local hospice so he was moved there. He was there 3 months! Then he wanted to walk around and he was eating better! So we wound up moving him to a long term care facility, because he wasn't dying "fast enough" to remain qualified to stay in hospice. He did wander out of the hospice and got himself locked out one day, no one expected that because hospice patients are not usually ambulatory!
The long term care facility wasn't all it was cracked up to be. the level of care was not good, and mom had to be there with him everyday to see he got what he needed, now she was losing sleep with commuting back and forth from home and doing the same level of care she was before the hospice! At this stage in the game we are up to 2015 and the frequency of cardiac episodes is now about 1-2 times per month, and he's down to about 6% blood flow. Then some more bad stuff happened at the long term care home and get assaulted (apparently twice) by another patient. this nearly killed him since it induced immediate cardiac episodes and alot of psychological and emotional stresses on him, making him no longer feeling safe around men at all. Needless to say we moved him to a new facility immediately on discovery of the incidents. The move and everything surrounding it saw his condition degrade further, and now his body doesn't recognise it's own signals for everyday things like 'I'm hungry/tired/thirsty/need to goto the bathroom" etc and he's lost the use of both of his hands and can no longer move around without a wheelchair.
Last month we were informed that his pacemaker battery is due to run out within 2-3 weeks and that he is not a surgical candidate anymore. that was a blow as it's expected he won't last long without the battery providing power. So they took him off his meds, and now we're a month after being told the battery would die. next week if he makes it that long, we find out if the pacemaker really is dead no since we're all like What? He's still here!? On his own, no meds or pacemaker? How does this work that he has survived all this for 16 years solid and is still here? the only thing I can think of is that he's either not decided he's done, or his purpose in life is to be teaching the many medical students he has been. Despite the huge amount of family stress it has been awaiting that bad call everyday saying he's gone, he's been teaching every medical person who he encounters a great deal about just how non-standard a case can be. Nothing has happened by the books and here he is just keeping on keeping on. they'll be using his medical history in the schools for years now teaching new people! A big thing learned from his case is that if the patient wants to keep going, it's worth fighting for, no matter the cost. If a skill or procedure can help, use it. the efforts and support also put in by family and friends can also make all the difference to improve quality and quantity of life.
