Dear Richard: I am sorry to hear about your near constant discomfort and swelling. I hope you are seeing a cardiologist in your area who might be able to tune up or improve the medicines you are on. With the heart ejecting 43 to55% of the blood, the forward flow of blood to your body may not be bad. However, if the heart is stiff, the blood may be backing up and causing the swelling you are experiencing. I hope they can arrange for a cardiologist to see you, or for you to get to a cardiologist soon. I hope you get to feeling better! Mike
I am 57 years old, diagnosed with stage 4 CHF & stage 4 CAD stage 4 angina, as per the canadian and NYHA charts.
I have has 2 open heart surgeries, 32 stent implants, breachy therapy, a TMR, a pacer/defibulator implant, on oxygen 24/7 confined to bed or wheel chair.when I stand my feet turn purple/black my stools are dark brown but mostly black mud
I have angina 24/7 on a scale of 1-10 even at rest I have almost a consistant 5, with any activity the pain level rises. I am unable to walk without increased pain and ability to beath is seavearly decreased with activity.
My ejection fraction is 43-55 it ranges from test to test, my heart is extremely large, and ischemic. I do not have the usual signs of edema( my stomach is enlarged about 4 times the normal size, it feels like it is full of water, and I have a hydra seal in my testicles. ( I assume that is where the fluid retention is ). I take lasix 80 mls each day, I am alergic to nitro,When I stand my feet turn purple/black I was recently turned down for heart transplan and stem cell reasearch( they claim I am unable to undergo any invasive proceedures unless it is life threatening. I have taken all the prescription medications available and the cardiologists say there is nothing more that can be done for me.
here is the question and presenting problem, I was admitted to hospice in Nov of 07, when admitted I met the criteria . Now they are threatening me with discharge for the following reasons
1. I did not die yet
2. My ejection fraction rate is to high
3 I have not lost weight
4 I do not show the normal signs of edema
5 i have not shown a rapid decline.
My understanding is Ejection fraction is not a good indicator
the amount of fluid retained in my groin and stomach would account for the way my fluid is been retained ( not the normal legs, feet ankles arms ect. ) I do break out in swets and water pours out of my body like a faucet. when standing my feet turn purple/black
is it possable that with the above mentioned, I am not a stge 4 and should not get end of life care or is hospice just playing games. What kind of rapid decline are they expecting ? I am in bed and in pain 24/7 and in need of oxygen constant not on demand.
How do you determine when and if a stage 4 CHF patient is hospice appropriate and how do you decide how long a patient has to live ?
At 1:53pm on December 10, 2007, Wayne Powell said…
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C. Michael Gibson, M.S., M.D.'s Comments
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I have has 2 open heart surgeries, 32 stent implants, breachy therapy, a TMR, a pacer/defibulator implant, on oxygen 24/7 confined to bed or wheel chair.when I stand my feet turn purple/black my stools are dark brown but mostly black mud
I have angina 24/7 on a scale of 1-10 even at rest I have almost a consistant 5, with any activity the pain level rises. I am unable to walk without increased pain and ability to beath is seavearly decreased with activity.
My ejection fraction is 43-55 it ranges from test to test, my heart is extremely large, and ischemic. I do not have the usual signs of edema( my stomach is enlarged about 4 times the normal size, it feels like it is full of water, and I have a hydra seal in my testicles. ( I assume that is where the fluid retention is ). I take lasix 80 mls each day, I am alergic to nitro,When I stand my feet turn purple/black I was recently turned down for heart transplan and stem cell reasearch( they claim I am unable to undergo any invasive proceedures unless it is life threatening. I have taken all the prescription medications available and the cardiologists say there is nothing more that can be done for me.
here is the question and presenting problem, I was admitted to hospice in Nov of 07, when admitted I met the criteria . Now they are threatening me with discharge for the following reasons
1. I did not die yet
2. My ejection fraction rate is to high
3 I have not lost weight
4 I do not show the normal signs of edema
5 i have not shown a rapid decline.
My understanding is Ejection fraction is not a good indicator
the amount of fluid retained in my groin and stomach would account for the way my fluid is been retained ( not the normal legs, feet ankles arms ect. ) I do break out in swets and water pours out of my body like a faucet. when standing my feet turn purple/black
is it possable that with the above mentioned, I am not a stge 4 and should not get end of life care or is hospice just playing games. What kind of rapid decline are they expecting ? I am in bed and in pain 24/7 and in need of oxygen constant not on demand.
How do you determine when and if a stage 4 CHF patient is hospice appropriate and how do you decide how long a patient has to live ?
Wayne Powell
SCAI
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