Guest guest Posted February 9, 2012 Report Share Posted February 9, 2012 BTW, Dr. Grim, read up on it and yes, I have been dashing since 2007. > > Just thought I'd update my saga...and a bit of success of late. I was able to convince Doc 1 (endo) to write a letter of referral to NIH where they are providing free evaluation and treatment of PA and other endocrine issues if you participate in their clinical trial protocol. I read about it and signed on. None of my other drs. wanted to write the letter or work with NIH, so that was a minor miracle to get one to write the letter, and I did. Yippee! > > The day prior to NIH calling to invite me to particpate, I took a dose of Epler and within 24 hours, my BP had a below normal reading. First I've seen in months. > > However, the dr. at NIH wanted me to discontinue Epler and start verapamil and hydralazine until the eval since it will mess with the labs. So, I called the referring doc and asked her to write it since NIH can't since I am not yet their patient. She said since she wrote the letter, she transferred my care of BP to them and she did not want to write the script. So I called the cardiologist, who was confused, but finally called me back and called the NIH doctor, called me back in full support of the NIH plan and called in the scripts. > > So, now, I am set to get a good evaluation, and have a doctor willing to work with them and I am sooo relieved. I obviously have PA, even have the official diagnosis with cardio, but have no good labs and no eval of tumors. Now I will and soon can have a treatment plan. A miracle and bit of success, I think. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2012 Report Share Posted February 9, 2012 1 50 mg. tablet. > > > > > > Just thought I'd update my saga...and a bit of success of late. I > > was able to convince Doc 1 (endo) to write a letter of referral to NIH > > where they are providing free evaluation and treatment of PA and other > > endocrine issues if you participate in their clinical trial protocol. > > I read about it and signed on. None of my other drs. wanted to write > > the letter or work with NIH, so that was a minor miracle to get one to > > write the letter, and I did. Yippee! > > > > > > The day prior to NIH calling to invite me to particpate, I took a > > dose of Epler and within 24 hours, my BP had a below normal reading. > > First I've seen in months. > > > > > > However, the dr. at NIH wanted me to discontinue Epler and start > > verapamil and hydralazine until the eval since it will mess with the > > labs. So, I called the referring doc and asked her to write it since > > NIH can't since I am not yet their patient. She said since she wrote > > the letter, she transferred my care of BP to them and she did not want > > to write the script. So I called the cardiologist, who was confused, > > but finally called me back and called the NIH doctor, called me back > > in full support of the NIH plan and called in the scripts. > > > > > > So, now, I am set to get a good evaluation, and have a doctor > > willing to work with them and I am sooo relieved. I obviously have PA, > > even have the official diagnosis with cardio, but have no good labs > > and no eval of tumors. Now I will and soon can have a treatment plan. > > A miracle and bit of success, I think. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2012 Report Share Posted February 9, 2012 That's great! I sent my PCP an e-mail and she responded that she would be happy to do the referral as long as I understood it was on my dime! (I told her it was cheaper to do it in Bethesda than locally! $96 copay & milage for each visit X 3 vs $202 R/T air unless I decide to drive!) Read the fine print if the government offers you " free healthcare " - It cost me over $400 to get Eplerenone approved! > > Just thought I'd update my saga...and a bit of success of late. I was able to convince Doc 1 (endo) to write a letter of referral to NIH where they are providing free evaluation and treatment of PA and other endocrine issues if you participate in their clinical trial protocol. I read about it and signed on. None of my other drs. wanted to write the letter or work with NIH, so that was a minor miracle to get one to write the letter, and I did. Yippee! > > The day prior to NIH calling to invite me to particpate, I took a dose of Epler and within 24 hours, my BP had a below normal reading. First I've seen in months. > > However, the dr. at NIH wanted me to discontinue Epler and start verapamil and hydralazine until the eval since it will mess with the labs. So, I called the referring doc and asked her to write it since NIH can't since I am not yet their patient. She said since she wrote the letter, she transferred my care of BP to them and she did not want to write the script. So I called the cardiologist, who was confused, but finally called me back and called the NIH doctor, called me back in full support of the NIH plan and called in the scripts. > > So, now, I am set to get a good evaluation, and have a doctor willing to work with them and I am sooo relieved. I obviously have PA, even have the official diagnosis with cardio, but have no good labs and no eval of tumors. Now I will and soon can have a treatment plan. A miracle and bit of success, I think. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2012 Report Share Posted February 9, 2012 If I read things right once you get a disability rating then no more copays. Will even get travel pay for some visits. > > > > Just thought I'd update my saga...and a bit of success of late. I was able to convince Doc 1 (endo) to write a letter of referral to NIH where they are providing free evaluation and treatment of PA and other endocrine issues if you participate in their clinical trial protocol. I read about it and signed on. None of my other drs. wanted to write the letter or work with NIH, so that was a minor miracle to get one to write the letter, and I did. Yippee! > > > > The day prior to NIH calling to invite me to particpate, I took a dose of Epler and within 24 hours, my BP had a below normal reading. First I've seen in months. > > > > However, the dr. at NIH wanted me to discontinue Epler and start verapamil and hydralazine until the eval since it will mess with the labs. So, I called the referring doc and asked her to write it since NIH can't since I am not yet their patient. She said since she wrote the letter, she transferred my care of BP to them and she did not want to write the script. So I called the cardiologist, who was confused, but finally called me back and called the NIH doctor, called me back in full support of the NIH plan and called in the scripts. > > > > So, now, I am set to get a good evaluation, and have a doctor willing to work with them and I am sooo relieved. I obviously have PA, even have the official diagnosis with cardio, but have no good labs and no eval of tumors. Now I will and soon can have a treatment plan. A miracle and bit of success, I think. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2012 Report Share Posted February 9, 2012 I have not calculated the copays, time off work, and other costs of my journey up to this point...money wise. The cost of the struggle, frustration, anger, outrage, confusion, etc. is immeasurable. And the toll taken on my heart and other organs due to the unmanaged and dangerously high blood pressure over the past few months is yet to be measured. When that's measured, I'll add up the costs and may seek damages. > > > > > > Just thought I'd update my saga...and a bit of success of late. I was able to convince Doc 1 (endo) to write a letter of referral to NIH where they are providing free evaluation and treatment of PA and other endocrine issues if you participate in their clinical trial protocol. I read about it and signed on. None of my other drs. wanted to write the letter or work with NIH, so that was a minor miracle to get one to write the letter, and I did. Yippee! > > > > > > The day prior to NIH calling to invite me to particpate, I took a dose of Epler and within 24 hours, my BP had a below normal reading. First I've seen in months. > > > > > > However, the dr. at NIH wanted me to discontinue Epler and start verapamil and hydralazine until the eval since it will mess with the labs. So, I called the referring doc and asked her to write it since NIH can't since I am not yet their patient. She said since she wrote the letter, she transferred my care of BP to them and she did not want to write the script. So I called the cardiologist, who was confused, but finally called me back and called the NIH doctor, called me back in full support of the NIH plan and called in the scripts. > > > > > > So, now, I am set to get a good evaluation, and have a doctor willing to work with them and I am sooo relieved. I obviously have PA, even have the official diagnosis with cardio, but have no good labs and no eval of tumors. Now I will and soon can have a treatment plan. A miracle and bit of success, I think. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2012 Report Share Posted February 9, 2012 Phyllis, why won't insurnce pay for Inspra? > > > > > > > > > > Just thought I'd update my saga...and a bit of success of late. I > > > > was able to convince Doc 1 (endo) to write a letter of referral to > > NIH > > > > where they are providing free evaluation and treatment of PA and > > other > > > > endocrine issues if you participate in their clinical trial protocol. > > > > I read about it and signed on. None of my other drs. wanted to write > > > > the letter or work with NIH, so that was a minor miracle to get > > one to > > > > write the letter, and I did. Yippee! > > > > > > > > > > The day prior to NIH calling to invite me to particpate, I took a > > > > dose of Epler and within 24 hours, my BP had a below normal reading. > > > > First I've seen in months. > > > > > > > > > > However, the dr. at NIH wanted me to discontinue Epler and start > > > > verapamil and hydralazine until the eval since it will mess with the > > > > labs. So, I called the referring doc and asked her to write it since > > > > NIH can't since I am not yet their patient. She said since she wrote > > > > the letter, she transferred my care of BP to them and she did not > > want > > > > to write the script. So I called the cardiologist, who was confused, > > > > but finally called me back and called the NIH doctor, called me back > > > > in full support of the NIH plan and called in the scripts. > > > > > > > > > > So, now, I am set to get a good evaluation, and have a doctor > > > > willing to work with them and I am sooo relieved. I obviously have > > PA, > > > > even have the official diagnosis with cardio, but have no good labs > > > > and no eval of tumors. Now I will and soon can have a treatment plan. > > > > A miracle and bit of success, I think. > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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