tag:blogger.com,1999:blog-5214462278620754350.post7254779183382134113..comments2023-10-06T07:02:10.816-05:00Comments on Interstitial Cystitis & Lung Transplant: My Life Battling Disabling Illness: WELCOME!Anonymoushttp://www.blogger.com/profile/04409857351733070787noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-5214462278620754350.post-69928621010586159052013-03-07T08:44:38.729-06:002013-03-07T08:44:38.729-06:00Sound like what they were telling you after your c...Sound like what they were telling you after your cystoscopy with hydrodistention was that you have classic Hunner's Ulcers (a hallmark symptom of IC). I have some but not as many as some iC patients. It sounds like yours are severe. <br /><br />I am on Disability due to my IC and I am on Medicare. Your instillations at the doctors office should not cost you anything! I pay nothing for mine. Do you have a Supplemental Policy to cover what Medicare does not? If so, you need to find out why they are not covering your instillations. The general rule of thumb is, if Medicare covers something at their standard 80% level, then your Supplemental Policy will cover the remaining 20%. Does your doctor NOT accept Medicare assignment and is charging you for what Medicare and your Supplemental are not covering? If that's the case then you should find a different doctor that will accept Medicare assignment because you should NOT have to pay for your instillations! <br /><br />Elmiron is a whole different story. If your Part D Prescription Drug Plan only covers it at the highest co-pay, there is not much you can do about that. There are Patient Assistance Programs you could look into and see if you qualify. If you are retired with little income, you very well might. So I would check into that. I'll post a link.<br /><br />http://www.ichelp.org/page.aspx?pid=380<br /><br />Be sure when you click on this link, you scroll down to the "Programs Offered by the Distributors of Elmiron" section; there are other links to several different assistance programs just for Elmiron.Anonymoushttps://www.blogger.com/profile/04409857351733070787noreply@blogger.comtag:blogger.com,1999:blog-5214462278620754350.post-82314245564289649122013-03-06T20:47:12.923-06:002013-03-06T20:47:12.923-06:00I am 65 years old and have suffered from UTI infec...I am 65 years old and have suffered from UTI infections for about 15 years +...finally I counted 16 uti infections in 2 years so I went to a uro dr. He cystiscoped me and said he saw nothing but diverticulous (excuse spelling) I couldn't see how that would have anything to do with my bladder. In a few weeks I was in pain again and went to the Nurse Prationer at the Uro dr and she said she thought I had IC so she set me up with the Dr to go in and look at my bladder. He came out and told my daughter that I didn't have cancer but I did have IC and explained that my bladder was covered in scabs and bloody places. I just wonder how long I had this and was being treated for UTI infections. It has been 6 years and I occasionally have flare ups and have to take 6 weeks of Instills and supposed to take Elmiron 3 times a day but it is so expensive and now I am on Medicare and AARP RX and I have to go pick up some tomorrow and it is $195 and the instill is $112. I never expected to retire and have to lay in bed with a heating pad for days. I was taking Loratab that my internist gave me for headaches and for my knees where I had double knee replacement. I also took it for the IC...well...she told me that the Loratabs was worse that anything on my bladder. Why when they have copies of all you medicines do they not tell you this. Well...sorry...have to run to the potty. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5214462278620754350.post-15152702896677109672012-09-29T09:46:38.228-05:002012-09-29T09:46:38.228-05:00Val; Thank you for such wonderful,kind and support...Val; Thank you for such wonderful,kind and supportive comments. I am pleased to know you feel I have helped; that's why I do this and if I've helped just one other IC patient, it's all worth it! Thank you for following me and I will do my best to continue to come up with positive, supportive posts.Anonymoushttps://www.blogger.com/profile/04409857351733070787noreply@blogger.comtag:blogger.com,1999:blog-5214462278620754350.post-82163189473228289352012-09-25T10:22:29.507-05:002012-09-25T10:22:29.507-05:00I think that this is a wonderful idea Catherine, I...I think that this is a wonderful idea Catherine, I also love the fact that your parents are so loving and supportive of you. The picture of the 3 of you is beautiful. I will look forward to your e-mails. You have always been my inspiration ! The first day of my diagnosis you were the first person to respond to me and lead me into an unknown world. You have helped educate me and you have supported me. I have a lot of respect for you for not letting this disease rule you. Good Luck on all of your new adventures, sending message of hope to help people with this dreaded disease.<br />Thank you for everything<br />Sincerely Val <3Anonymousnoreply@blogger.com