Relapsing Polychondritis

@becsbuddy

Thank you for your reply.
I had been working with Brigham and Women's Hospital in Boston for the neurological and heart problems for years.

When I moved back to Florida is when a lot of my problems started with getting any Doctor to listen or take me seriously. A good example is my heart. I fought with 2 different cardiology practices to be seen by an electrophysologist for my arrhythmias. Finally in 2019 I saw my first 1 after being in Florida for 4 years. They implanted a ICD. When I had my post op appointment I was told the Doctor had left the practice. When they implanted the device I was a bit confused about it's placement. It's supposed to be in the upper chest around the 4th rib. Mine was placed underneath my left breast where the wire or support for your bra goes. When I questioned the new follow up Doctor he got offended and even though he wasn't an electrophysiolgist he was to take over my care. Come time for my next follow up and my appointment was canceled because the doctor was sick and they didn't know when he'd be back, lol. This went on for 3 years until I got fed up with not being followed up on and basically I was told they couldn't help me and not to come back?

I found a new Cardiologist who was so stunned to see where my device was placed that every time I went to see her, she'd ask if I minded if such and such could come and check it out, lol. Not even kidding. They all agreed it needed to come out and be replaced but sadly had no one in their practice to do it.

Finally last year I got a new electrophysiologist who finally removed my old device and placed a new one in. This was November of last year. By February he was gone and I have been round and round with this practice because I haven't been followed up on in almost a year.
Finally, I am seeing a new Doctor so hopefully he'll stay around. But, I found out when I went to my appointment my new device had failed in March and is completely dead.

My PC Doctor is useless. She does not listen and does not like it when my other Doctors try to tell her anything. When it came to my vasculitis. 2 of my Doctors had suggested I speak to her about referrals and she flat out told me I did not have vasculitis or RP.

My ENT who agreed one of my other doctors that they believed I had either one, the other or if my luck was bad both. She still would not listen to them and send me to anyone. My ENT who is a Professor at USF and part of Tampa General is the Doctor who has been getting me the referrals and setting me up with Rheumatologist and other specialist who are also USF and TGH doctors but they believe I am beyond their scope of care and right now I am told there's maybe 3 specialist that are familiar with the combination of autoimmune problems I have and they are all over the US and not local. So, right now I am trying to figure where and how to go see one while also battling medicare and my advantage provider.

@becsbuddy

Thank you for your reply.
I had been working with Brigham and Women's Hospital in Boston for the neurological and heart problems for years.

When I moved back to Florida is when a lot of my problems started with getting any Doctor to listen or take me seriously. A good example is my heart. I fought with 2 different cardiology practices to be seen by an electrophysologist for my arrhythmias. Finally in 2019 I saw my first 1 after being in Florida for 4 years. They implanted a ICD. When I had my post op appointment I was told the Doctor had left the practice. When they implanted the device I was a bit confused about it's placement. It's supposed to be in the upper chest around the 4th rib. Mine was placed underneath my left breast where the wire or support for your bra goes. When I questioned the new follow up Doctor he got offended and even though he wasn't an electrophysiolgist he was to take over my care. Come time for my next follow up and my appointment was canceled because the doctor was sick and they didn't know when he'd be back, lol. This went on for 3 years until I got fed up with not being followed up on and basically I was told they couldn't help me and not to come back?

I found a new Cardiologist who was so stunned to see where my device was placed that every time I went to see her, she'd ask if I minded if such and such could come and check it out, lol. Not even kidding. They all agreed it needed to come out and be replaced but sadly had no one in their practice to do it.

Finally last year I got a new electrophysiologist who finally removed my old device and placed a new one in. This was November of last year. By February he was gone and I have been round and round with this practice because I haven't been followed up on in almost a year.
Finally, I am seeing a new Doctor so hopefully he'll stay around. But, I found out when I went to my appointment my new device had failed in March and is completely dead.

My PC Doctor is useless. She does not listen and does not like it when my other Doctors try to tell her anything. When it came to my vasculitis. 2 of my Doctors had suggested I speak to her about referrals and she flat out told me I did not have vasculitis or RP.

My ENT who agreed one of my other doctors that they believed I had either one, the other or if my luck was bad both. She still would not listen to them and send me to anyone. My ENT who is a Professor at USF and part of Tampa General is the Doctor who has been getting me the referrals and setting me up with Rheumatologist and other specialist who are also USF and TGH doctors but they believe I am beyond their scope of care and right now I am told there's maybe 3 specialist that are familiar with the combination of autoimmune problems I have and they are all over the US and not local. So, right now I am trying to figure where and how to go see one while also battling medicare and my advantage provider.