August 21, 2006
Today is my wedding Anniversary, and sick again. I have been diagnosed with acute pancreatitis again. My husband had to take me to the ER yesterday as the medications I have at home were not helping and all I could do was scream. I was however given the option of admission to which I declined. It took 12 mgs of IV morphine to stop the screaming. Once home I was able to finally lay down and get some sleep. I have called my pcp requesting to stop the j-tube for a few days and go with home care and go straight IV's to rest things. The pain is so much worse when the tube feeding is going.
I did talk with the nurse case manager and she agreed with the home care. I can take care of the IV myself as I am a nurse. She did have some postive things to tell me, but I won't post them as of yet, as they may fall through. I am begging any one who reads this blog to take action and stand up for those of us with this disease. The following link will take you to the Patient Advocacy Foundation that helps people like me, who have issues with there insurance.
www.patientadvocate.com then at the top where it says different things. Go to AAA this is where you can join and they give you the chance to say something. Tell them you want to see total pancreatectomy with islet cell transplant as standard of care for those of us with chronic pancreatitis. And that you want it to be Medicare payable. Making our representatives in local and state and government aware of our situtation is the only way they will ever know about us. As Dr.Sutherland say's if you have had symptomatic pancreatitis for more than 6 months the pancreas needs removed, it will never heal, it will just keep getting worse. Pancreatitis is a progressive disease, no matter what you have been told, it is progressive. ERCP's will not help, neither will stenting and opening of the ducts or anything else that is standard of care at this time. It makes more sense to pay for the surgery than to have people on SSD and medicare for the government to pay for them, fix them and make them tax paying citizens. I have no problem working, but I can't work like this. I have not worked since 2000, I had no idea that this surgery was even available until earlier this year; since then I have been attempting to get it done. I need to go to bed now, as I am fighting the demon that lives within my body. One last thing, I calculated what the insurance company pays for pain meds for me it is almost $45,000 a year plus having my pump filled every 50 days is another $1200.00 which makes more sense spend the $19,000 and be done with this or continue on until I have used up all of my insurance on pain meds, and the real problem has not been addressed.
Lisa Atwell
Today is my wedding Anniversary, and sick again. I have been diagnosed with acute pancreatitis again. My husband had to take me to the ER yesterday as the medications I have at home were not helping and all I could do was scream. I was however given the option of admission to which I declined. It took 12 mgs of IV morphine to stop the screaming. Once home I was able to finally lay down and get some sleep. I have called my pcp requesting to stop the j-tube for a few days and go with home care and go straight IV's to rest things. The pain is so much worse when the tube feeding is going.
I did talk with the nurse case manager and she agreed with the home care. I can take care of the IV myself as I am a nurse. She did have some postive things to tell me, but I won't post them as of yet, as they may fall through. I am begging any one who reads this blog to take action and stand up for those of us with this disease. The following link will take you to the Patient Advocacy Foundation that helps people like me, who have issues with there insurance.
www.patientadvocate.com then at the top where it says different things. Go to AAA this is where you can join and they give you the chance to say something. Tell them you want to see total pancreatectomy with islet cell transplant as standard of care for those of us with chronic pancreatitis. And that you want it to be Medicare payable. Making our representatives in local and state and government aware of our situtation is the only way they will ever know about us. As Dr.Sutherland say's if you have had symptomatic pancreatitis for more than 6 months the pancreas needs removed, it will never heal, it will just keep getting worse. Pancreatitis is a progressive disease, no matter what you have been told, it is progressive. ERCP's will not help, neither will stenting and opening of the ducts or anything else that is standard of care at this time. It makes more sense to pay for the surgery than to have people on SSD and medicare for the government to pay for them, fix them and make them tax paying citizens. I have no problem working, but I can't work like this. I have not worked since 2000, I had no idea that this surgery was even available until earlier this year; since then I have been attempting to get it done. I need to go to bed now, as I am fighting the demon that lives within my body. One last thing, I calculated what the insurance company pays for pain meds for me it is almost $45,000 a year plus having my pump filled every 50 days is another $1200.00 which makes more sense spend the $19,000 and be done with this or continue on until I have used up all of my insurance on pain meds, and the real problem has not been addressed.
Lisa Atwell
posted by Lisa Atwell | 2:39 PM
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