OMG I am sitting here shaking. I sent the appeal letter with my doctors great letters and they told me, don't worry it will get approved. I am in shock just got off the phone with Medicare. She said that my appeal has been denied even with the letters and all the paper work. I cant cry, she said to call the 2nd level appeal on Monday and see what the next step is. I'm so tired of fighting for everything. I don't want to live like this but trying to except and going through all this is just to much. So they Pay for valium supp. at 2000.00 a month but wont pay for Belladonna/Opium supp. at 1500.00. I'm in the donut hole and now tell me I have to pay 4895.00 out of pocket now on covered medicine and after that then I'm in the catastrophic coverage.
The reason I have been on the medicine is my j pouch is about 15 years old and had tons of cases of pouchitus. Then about 4 years ago starting having horrible pains that would last about a few minutes and then had no control. My GI doctor who has since retired got me into Cleveland Clinic the next day with a specialist. He scoped my and said that my pouch has become very week due to all my infections and the pains where it having spasms that cause me to loose control. He put me on the Belladonna/Opium and it so strong but after 4 years used to it but it did change my whole life.
Does anyone have this problem and take anything for it? The doctor when I went in and explained that Medicare would not cover it he said that there was only one other thing he could recommend and that was Valium supp. and about 8 lamotil a day. I leaked about 95 percent of the day and we all know what happens to rear when that happens. So I cant afford to take the 2000.00 valium now till I pay about 5000.00 out of pocket and no coverage for Belladonna/Opium.
I want some quality of life not quienity . I have not told anyone and moved from my chair. I cant tell my husband he is retired and on fixed income and what I get from Medicare is hardly anything.
I'm so sorry for unloading but I am truly at a loss now. My hashimoto is getting worse and we know what happened with that I have to find another one that takes my rotten insurance. I have to go to a retina specialist on wed something is happening with my vision. I try so hard to stay positive and put on my brave face by boys are 27 and 30 and they live near us and they don't have a clue and that is the way I want it. The only option I think I have is take them till they run out and see what happens. I might write to the manufacture of the medicine to see if they can help me.
Thank you from the bottom of my heart for listening to me. It means more than you will ever know.
Frances