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I'm so grateful, I've finally been granted a referral (TRICARE actually approved it, must have been a great write up for the justification!) to go to the Cleveland Clinic to see some of the top IC specialists in the whole country!
I feel soooo lucky right now. If anyone can help my refractory case of IC, they can! I will be seeing Dr. Rackley (sp?) initially, and I have heard he is really great and also really nice. I'm so excited! I will share anything I learn new about IC with you guys, I'm hoping maybe there are some new experimental treatments or something.
I just feel so leery of staying on the Cyclosporine-A now because of my kidney thing. I was told by one doctor that if I stayed on the CyA, my kidneys would die, period. That doesn't sound very good. So....maybe it would be best for me to try to seek another type of treatment. It's hard to give up the CyA because it's the only thing that's helped me, but if my kidneys can't handle it, I know in my heart that I'm being foolish to stay on it.
Plus I have a really great pain management doctor (civilian) and he seems very willing to help me with the pain, even up to the point of prescribing opioids if needed, etc. So I feel confident that no matter what happens, I will be able to maintain a reasonable level of comfort most of the time.
Oh, and I've been granted the ability to see civilian providers using TRICARE Prime (usually if you go to civilians, you have to choose TRICARE Standard, which means $1,000 a year or sometimes more out of pocket expenses) and I am so relieved and grateful to be given that opportunity. So, I will be finding a primary care manager to start with, and then from there, I probably will need to see an endocrinologist (I was just diagnosed as hypothyroid) and maybe a nephrologist, depends on if the primary care manager feels comfortable ordering labs for me and monitoring my kidneys or not.
Although I've had a lot of great doctors in the military healthcare system, and the doctors all work very hard in the military, I find that many of them are often right out of medical school, without too many years of experience behind them. Sometimes it's beneficial to be able to see a doctor who has had decades of experience and learning, especially if a person has a very complicated disease, like IC that doesn't respond to standard treatments. So anyway I'm just thrilled!
I'm also so grateful for everyone here. This is a family here, it really is. Everyone here is such a kind and caring person, it's really the most wonderful place on the whole internet. I'm so glad the boards are here, I'm grateful for Jill and the rest of the management team/moderators etc. who keep these boards here and safe and who work every day to make things better for us.
Blessings,
Lori
P.S. Oh, it's not that I'm grateful for this bit of info, LOL, but the uro who gave me the referral to the Cleveland Clinic looked at my bladder photos yesterday of my last cysto/hydro and he said I have a Hunner's Ulcer! So I sure do fit all the criteria for having IC! I guess I pretty much have a classic case.
I feel soooo lucky right now. If anyone can help my refractory case of IC, they can! I will be seeing Dr. Rackley (sp?) initially, and I have heard he is really great and also really nice. I'm so excited! I will share anything I learn new about IC with you guys, I'm hoping maybe there are some new experimental treatments or something.
I just feel so leery of staying on the Cyclosporine-A now because of my kidney thing. I was told by one doctor that if I stayed on the CyA, my kidneys would die, period. That doesn't sound very good. So....maybe it would be best for me to try to seek another type of treatment. It's hard to give up the CyA because it's the only thing that's helped me, but if my kidneys can't handle it, I know in my heart that I'm being foolish to stay on it.
Plus I have a really great pain management doctor (civilian) and he seems very willing to help me with the pain, even up to the point of prescribing opioids if needed, etc. So I feel confident that no matter what happens, I will be able to maintain a reasonable level of comfort most of the time.
Oh, and I've been granted the ability to see civilian providers using TRICARE Prime (usually if you go to civilians, you have to choose TRICARE Standard, which means $1,000 a year or sometimes more out of pocket expenses) and I am so relieved and grateful to be given that opportunity. So, I will be finding a primary care manager to start with, and then from there, I probably will need to see an endocrinologist (I was just diagnosed as hypothyroid) and maybe a nephrologist, depends on if the primary care manager feels comfortable ordering labs for me and monitoring my kidneys or not.
Although I've had a lot of great doctors in the military healthcare system, and the doctors all work very hard in the military, I find that many of them are often right out of medical school, without too many years of experience behind them. Sometimes it's beneficial to be able to see a doctor who has had decades of experience and learning, especially if a person has a very complicated disease, like IC that doesn't respond to standard treatments. So anyway I'm just thrilled!
I'm also so grateful for everyone here. This is a family here, it really is. Everyone here is such a kind and caring person, it's really the most wonderful place on the whole internet. I'm so glad the boards are here, I'm grateful for Jill and the rest of the management team/moderators etc. who keep these boards here and safe and who work every day to make things better for us.
Blessings,
Lori
P.S. Oh, it's not that I'm grateful for this bit of info, LOL, but the uro who gave me the referral to the Cleveland Clinic looked at my bladder photos yesterday of my last cysto/hydro and he said I have a Hunner's Ulcer! So I sure do fit all the criteria for having IC! I guess I pretty much have a classic case.
Janie
OFF MY MEDS
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