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- WildcatYXU
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Mixed Emotions - my rant topic
Oh...it looks like the waiting time is over and my health problems will be finally addressed. The endocarditis that I was treated for in late 2016 left permanent damage on my aortic valve. It is something one can live with for same time, but the lost energy due to blood regurgitation is massive and annoying. i was told almost a year ago that to only way to address this is surgery. And indeed, I signed the consent on May 7. But this is Canada, and if you're not dying, you have to wait. Now, i finally have a date. Friday, March 2. On one hand I'm happy that the wait is over, on the other hand I'm getting more and more afraid. It is an open heart surgery with heart lung bypass after all. So many things may go wrong...but then, I'm fed up with shortness of breath, palpitations, being limited to lift 20 lbs only and the whole other bunch of stuff. While I'm not looking forward to waking up with cut chest, intubated, with a catheter up to my (you know what), I wish it would be already March 2, about 15:00 hours...
Re: Mixed Emotions - my rant topic
Best wishes. I have multiple medical problems and although I don't live in Canada, I do understand the "hurry up and wait" aspect of health insurance approval and managed care.
For example, I was diagnosed with psychogenic non-epileptic seizures (PNES) and when I went for a second opinion the doctors at the second hospital came to the same conclusion. They offered me outpatient psychological counseling, which I did but found ineffective, and the doctors also refused to talk with me about any of the specifics of my EEG or video recordings. So only after two hospitals, four neurologists, twelve weeks of counseling, a psychiatrist who wanted to put me in a psych ward, insurance review, and worst of all, eight months of "PNES," I finally found my way into a third epilepsy monitoring unit where the neurologist examined the video and EEG carefully, added EMG (muscle monitoring), and diagnosed me with a very rare condition called hyperekplexia, which means I have an exaggerated startle response. How quickly my episodes went away after we got me on the right dose of clonazepam! Now I can drive safely and I can wake up without startling so badly that I cry out, go stiff, and then shake as if having a real seizure. We also discovered that I may - may - be having true simple partial seizures that make me smell smoke and also aphasic seizures that make me temporarily lose the ability to speak. However, those two were not seen in the monitoring unit, so there's no confirmation yet.
I'll keep you in my prayers.
For example, I was diagnosed with psychogenic non-epileptic seizures (PNES) and when I went for a second opinion the doctors at the second hospital came to the same conclusion. They offered me outpatient psychological counseling, which I did but found ineffective, and the doctors also refused to talk with me about any of the specifics of my EEG or video recordings. So only after two hospitals, four neurologists, twelve weeks of counseling, a psychiatrist who wanted to put me in a psych ward, insurance review, and worst of all, eight months of "PNES," I finally found my way into a third epilepsy monitoring unit where the neurologist examined the video and EEG carefully, added EMG (muscle monitoring), and diagnosed me with a very rare condition called hyperekplexia, which means I have an exaggerated startle response. How quickly my episodes went away after we got me on the right dose of clonazepam! Now I can drive safely and I can wake up without startling so badly that I cry out, go stiff, and then shake as if having a real seizure. We also discovered that I may - may - be having true simple partial seizures that make me smell smoke and also aphasic seizures that make me temporarily lose the ability to speak. However, those two were not seen in the monitoring unit, so there's no confirmation yet.
I'll keep you in my prayers.
Re: Mixed Emotions - my rant topic
My father has had a couple of heart surgeries (including one open heart) that were supposed to improve his heart function but the results are not that great. I guess him being older and not taking enough care of his health (including a sport allergy) didn't help though. He wasn't that bad (unlike what you describe) to begin with so there is basically no difference.
Despite how traumatic you would think open heart surgery to be, the recovery from the operation seemed quick enough to me.
Despite how traumatic you would think open heart surgery to be, the recovery from the operation seemed quick enough to me.
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- bennett123
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Re: Mixed Emotions - my rant topic
Have you discussed the risks with your Surgeon?.
You also did not reveal your family circumstances, so I assume you are also single.
My take on this would be short term pain, long term gain.
If this will restore you to full fitness then a moderate level of risk is worth taking.
You also did not reveal your family circumstances, so I assume you are also single.
My take on this would be short term pain, long term gain.
If this will restore you to full fitness then a moderate level of risk is worth taking.
Re: Mixed Emotions - my rant topic
I don't have any advice or experience with this sort of thing, just wishing you well & speedy recovery.
Re: Mixed Emotions - my rant topic
So, amongst people I know who have had heart surgery, it seems they tell people the worst case scenario for what needs to be done, but when they go in, sometimes they don't actually have to go as far as they said, and the patient wakes up to good news.
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- WildcatYXU
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Re: Mixed Emotions - my rant topic
Thank you all for your best wishes.
I don't think I'm all that much younger than your dad and I made some questionable lifestyle choices too, but in my case the problem developed fairly quickly and therefore i didn't get used to the loss of energy. So I really hope to see a difference once I recover. After all, the preliminary tests are suggesting that other than the valve damage due to infection my heart is healthy.
And I hope it will be a similar case as with your dad - fast recovery
Yes, I did. We discussed my options starting with doing nothing through all available surgical options. I had several discussions with him, basically after every test he prescribed (angiography, MRI). I realize the risks involved, including the 1% risk of death. To be honest, I'm not afraid of dying. What I'm rather afraid of are possible complications and being a drag on my family due to them. That said, I have my family's full support.
I'm married for quite a time - it will be 30 years in July. Two of our children are still living with us.
That's what I'm hoping for.
Well, the doctor said that there is a small chance to fix the damaged valve. I can always hope
Aesma wrote:My father has had a couple of heart surgeries (including one open heart) that were supposed to improve his heart function but the results are not that great. I guess him being older and not taking enough care of his health (including a sport allergy) didn't help though. He wasn't that bad (unlike what you describe) to begin with so there is basically no difference.
Despite how traumatic you would think open heart surgery to be, the recovery from the operation seemed quick enough to me.
I don't think I'm all that much younger than your dad and I made some questionable lifestyle choices too, but in my case the problem developed fairly quickly and therefore i didn't get used to the loss of energy. So I really hope to see a difference once I recover. After all, the preliminary tests are suggesting that other than the valve damage due to infection my heart is healthy.
And I hope it will be a similar case as with your dad - fast recovery
bennett123 wrote:Have you discussed the risks with your Surgeon?.
Yes, I did. We discussed my options starting with doing nothing through all available surgical options. I had several discussions with him, basically after every test he prescribed (angiography, MRI). I realize the risks involved, including the 1% risk of death. To be honest, I'm not afraid of dying. What I'm rather afraid of are possible complications and being a drag on my family due to them. That said, I have my family's full support.
bennett123 wrote:You also did not reveal your family circumstances, so I assume you are also single.
I'm married for quite a time - it will be 30 years in July. Two of our children are still living with us.
bennett123 wrote:My take on this would be short term pain, long term gain.
If this will restore you to full fitness then a moderate level of risk is worth taking.
That's what I'm hoping for.
Jouhou wrote:So, amongst people I know who have had heart surgery, it seems they tell people the worst case scenario for what needs to be done, but when they go in, sometimes they don't actually have to go as far as they said, and the patient wakes up to good news.
Well, the doctor said that there is a small chance to fix the damaged valve. I can always hope
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