I am a completely different person, for the better, having him in my life, than I otherwise would have been - it has been a very humbling experience - although for his sake I wish things could have been different.
Exactly, same here for my daughter.
Sethery, it does matter. Sometimes, a caregiver has a “low” day, when just one kind word can make the difference.[/maudlin]
Angtro, I don’t care what any source says about this site, I will vouch for it and it’s members, there is compassion here.
My daughter doesn’t talk much, but just yesterday, she said “why me?” It was painful,like a shock to my heart, and I had no good answer.
I do know how heartwrenching that must have been - the other day we were watching “The Wedding Singer” and there is a part in the movie where Adam Sandler is left standing at the alter on his wedding day - he goes back to work singing at a wedding and in the midst of his depression over what happened he says to the crowd “some of us will never find true love - take the fat guy there, lady with the sideburns, the mutants at table 9........” Jason turned to me (he speaks well enough for those close to him to make out simple statements) and said: “that is me” - I can not even begin to explain the sinking feeling in my stomach, and have never been more at a loss for words.....
Sethery, it does matter. Sometimes, a caregiver has a “low” day, when just one kind word can make the difference
That is so true - goes to show how even the smallest amount of kindness can go a long way.......
My point is that if Michael Moore had a real crisis like his wife having Cancer, I can’t picture JimK gloating about it or setting Moore up somehow. He seems to have more character than that, and I would be disappointed in him if he did.
With the topic of healthcare at the forefront I want to share my own experience in regard to when Dr’s decide who lives and who dies:
My son was born with multiple, congenital heart defects. Was followed at the same Children’s Hospital through the age of 22 - because his problems are congenital will always be followed at a Children’s heart center. At 18 he developed congestive heart failure(CHF), was put on diuretics to control the water retention. At age 22 he developed atrial flutter. He was 20 pounds overweight from water retention, a direct result of the atrial flutter. His doctor put him on a medication to regulate the heart rhythm and increased the diuretic, 3 months later, he again had the atrial flutter. The doc increased the diuretic once again, was not getting rid of the excess water. He was severly swollen, had no energy and felt miserable. His doc then said, “there is nothing else we can do - the time has come where all we can do for him is make him as comfortable as possible”.....that was a friday - his doc sent him home with no change in his medications.
That to me was unacceptable. The following Monday I contacted another cardiologist at another children’s hospital. They got us in that Wednesday. The new doc was optimistic that a change in meds would again control the CHF as well as the atrial flutter. He also discussed some possible surgical options that could possibly prolong his life. He put him on a heart rhythm medication called Amioderone and another diuretic called Spironolactone and said that within a few days the water would be gone and he would feel much better. You can imagine my scepticism - I asked, “but what if it’s not”, his answer was, I will never forget his confidence, was, “it will be” I then asked, “but, what if it’s not” he then said “then bring him in to the ER”. By friday the water was gone and he was back to normal. That was 5 years ago - he has been stable since - and no atrial flutter.
He had been followed his entire life at what is considered the best place for care for his condition in the state where we lived and it completely escapes me that his docs did not do the same as his new doc did so simply. Had I done nothing and accepted their word, he not only would not be with us today, but his last years would have been miserable. With those that develop CHF, over 50% die within 5 years from the lack of keeping it under control with medications - when CHF is out of control, i.e. swelling , your heart has to work harder to supply oxygen to your major organs and with the water retention the risk increases that your lungs will fill with water - and because it is unable to adequetly supply oxygen to your major organs, it first cuts off oxygen to the kidneys and victims die from kidney failure.
The first time he had the atrial flutter at age 22 we were on vacation in Pennsylvania. I knew something was wrong because he was swelling up - on the road we stopped at the first hospital we could find. Within minutes of arriving they identified the atrial flutter and because of the complexity of his heart problems put him in an ambulance and transported him to Pittsburgh Children’s hospital, 1-1/2 hours away by ambulance to perform a surgical version of defibulation - they put you to sleep and send a shock to the heart to get it back to a normal rhythm. They were expecting him and upon arrival they explained the procedure had to be done immediately because while in atrial flutter the blood is pooling in the heart which increases the risk of clotting and can lead to a stroke. Within 45 minutes of arrival he was in recovery.
3 months later back home in Indiana he again had the atrial flutter - we arrived at the hospital at 10:30 PM. I expected the same treatment received in Pennsylvania. To my astonishment they did not defibulate him until 2:30pm the next day, claiming that they were waiting for an available surgeon. Mind you, we were at the major children’s hospital in the state of Indiana, a specialty hospital that other hospitals send you to for his type of condition. Had I not had the experience in Pennsylvania I would not have known any better. He spent a day in the hospital afterward and his regular doc never stopped in to see him once.
To this day I am at a loss as to why the treatments by the 2 different doctors were so radically different - one not only saved his life but radically improved his quality of life as opposed to the other who,supposedly the best in the state of Indiana, made no effort whatsoever to do anything at all - as well as the radical difference between Pittsburgh and Indiana in surgical treatment received at the time he had the atrial flutter. I only thank god that he is still with us, and still feeling better than ever.
I heard an interesting interview on the radio a week or so back with a doctor who’d written a book about the healthcare industry. He basically argued that the medical profession as a whole makes more mistakes then most people would think, but it is somehow systematically organised to constantly reassure the public about the wonders of modern medicine. He also kind of argued that the best thing you can do, if you or a family member has a serious illness, is to take control of the process - learn all you can about the condition, seek 2nd opinions, keep an open mind, and so on.
He more or less said that there’s a strange hierarchy in the doctor/patient relationship. The doctors have all the expertise, but at the end of the day, they work for you, so you need to assert yourself and keep control of the overall process.
Anyway, it sounds like both of you have done that. And I know Rapid, that your decision to send your daughter to China is a perfect example of this - be informed, keep an open mind, explore alternatives, and put your daughter first.
Wow, that is indeed amazing angtro. Thanks for sharing something that’s obviously very personal. Sounds to me like you’ve made some excellent choices for your family.
If anything happens to me or somebody in my family, I’ve certainly heard enough to convince me not to just accept the 1st or even the 2nd opinion. Your story is a perfect example of that. Rapid R also has found qualified people telling him completely different things. I know he’s found that incredibly frustrating, as anyone would (however of course not many of us are in the position that you two are in).
And I have no doubt that this happens all over the world, where different jurisdictions develop different cultures and policies, and obviously where the professional opinion at the highest level (the doctor/specialist) differs so much based on their own experience and training.
EDIT: I’ve got this heart issue but it’s never caused me any problems and was only detected by accident.
The Dr in Florida seemed to think we were on the recovery phase and he got some improvement out of her. The Dr in Canada, said the condition was still there and getting worse. We said “But she is talking more and acting better” and she said “Yes, that wouldn’t fit the diagnosis.” She meant well but nobody understands well enough to ensure recovery from a brain trauma. We figure she needed mass for new gray and white matter, so stem cells seemed a viable treatment. We shall see.
She was quiet which makes my wife quiet by default, and then we found out she had a sinus infection. After a few days of medicine, she was very verbal tonight at bedtime.
Quote:
“Michael Moore tells the world that he gave JimK the money and that right-wing bloggers should give him a break. JimK reasserts his right to criticise Moore’s politics (and fair enough, you have to be an idiot to expect him to change his views). But further to that, he basically argues that Moore’s gift was a political “tactic” - like the one used against Charlton Heston - to set him up to look like an idiot no matter what he does or says.”
Didn’t JimK set himself up to look like an idiot? - although I personally don’t view him as such - don’t you really control your own destiny?
If that were true, wouldn’t it make “Sicko” a moot point as we’d all be responsible for our own healthcare? Afterall, moore recently stated that he wants the movie to be responsible for getting *free* universal healthcare.
I haven’t followed the entire thread, but all my best wishes to you and your family angtro. On a side note, my aunt was cleared for heart surgery in Indiana but not here in Michigan. Go figure.
You will find that many of us here are or have been primary care givers to sick and infirmed relatives and friends and are quite understanding. Some of us were born into that service, others learned it from other family members. For example, my family got together today to have lunch and watch the Detroit Tigers beat the Angels. My Mom was looking forward to spending time with her children, grandchildren and great grandchildren. About half an hour before the game, she got a call from a neighbor’s daughter who had been in the emergency room all night and day with my Mom’s neighbor. The daughter needed a break but her mother didn’t want to be left alone, so my Mom went to the hospital and spent a couple of hours with the woman so the daughter could take a much needed break. My Mom gave up most of her family time so that another’s family member could get some relief from a stressful situation. And so it goes…
The Dr in Florida seemed to think we were on the recovery phase and he got some improvement out of her. The Dr in Canada, said the condition was still there and getting worse. We said “But she is talking more and acting better” and she said “Yes, that wouldn’t fit the diagnosis.” She meant well but nobody understands well enough to ensure recovery from a brain trauma. We figure she needed mass for new gray and white matter, so stem cells seemed a viable treatment. We shall see.
She was quiet which makes my wife quiet by default, and then we found out she had a sinus infection. After a few days of medicine, she was very verbal tonight at bedtime.
I heard an interesting interview on the radio a week or so back with a doctor who’d written a book about the healthcare industry. He basically argued that the medical profession as a whole makes more mistakes then most people would think, but it is somehow systematically organised to constantly reassure the public about the wonders of modern medicine. He also kind of argued that the best thing you can do, if you or a family member has a serious illness, is to take control of the process - learn all you can about the condition, seek 2nd opinions, keep an open mind, and so on.
He more or less said that there’s a strange hierarchy in the doctor/patient relationship. The doctors have all the expertise, but at the end of the day, they work for you, so you need to assert yourself and keep control of the overall process.
Anyway, it sounds like both of you have done that. And I know Rapid, that your decision to send your daughter to China is a perfect example of this - be informed, keep an open mind, explore alternatives, and put your daughter first.
Was that on National Radio? The Kathryn Ryan Nine-to-Noon show? Or Kim Hill?
(Edit: Will Hutton is on the Kim Hill show tomorrow morning)
My daughter doesn’t talk much, but just yesterday, she said “why me?” It was painful,like a shock to my heart, and I had no good answer.
angtro - 24 May 2007 06:34 PM
Jason turned to me (he speaks well enough for those close to him to make out simple statements) and said: “that is me” - I can not even begin to explain the sinking feeling in my stomach, and have never been more at a loss for words.....
I can’t imagine how painful it must be to hear those kinds of words. A lot of people (myself included, at times) take a lot of things for granted. You both have a much clearer view of what’s important than most of the rest of the population.
Thanks for sharing your story, angtro. As crichton mentioned, there are a few other caretakers here. I’m not one, but my wife and I have been talking about our parents’ futures. They’re all relatively healthy now, but we’re keenly aware of how well they took care of us (and still do, at times :) ), and feel a strong desire to take care of them if they ever come to need it.
I generally don’t even look in the ‘All about Mikey’ section anymore. I stumbled on this thread by accident due to a reference in another thread. I too, am somewhat grateful to Applepie, but for a different reason. This was a very entertaining thread to read, and it served to again show that the cruelest thing you can do to most liberals is to give them a forum in which to make their views known. I’m also glad that I didn’t stumble upon it until it was pretty well wrapped up. I would have spent too much time that I really don’t have free to contribute to it, and I would have been nowhere near as patient with AP’s asinine positions and circular logic as y’all were. Instead, it made for entertaining reading when I took breaks from doing some much needed upkeep around the estate.
Also, its nice that this thread has ended up on such an uplifting note. Angtro, know that there are now more people who will keep you, your son and the rest of your family in their prayers. Its always encouraging to see the positive effects from such stresses as you and RapidR have endured. I have a nephew, who was near genius, athletically superb, and a gifted musician, that had a motorcycle accident that left him severely crippled and brain damaged. This was twenty years ago, and my sister has been dealing with it for all that time, and she has done so wonderfully. The most profound positive was the effect it had on my late brother-in law. He was always a great guy, but not always the most mature and selfless of persons. When Troy got injured, however, he stepped up and became the man he was destined to be. Its hard now to describe all the differences in him, but suffice it to say that the man he became as a result of that awful accident was far superior to the less mature man he was before it. I daresay that both you and RapidR are better men than you would have been in the absence of such stresses. Such trials tend to either destroy you or make you better. I’m glad the latter is the case with you two.
