Wegener's in my life

[Pete]

If you're in the United States, the HIPPA law grants you full access to your medical records. Both Cleveland Clinic and Ohio State have myChart - an on-line access portal. They don't post imaging, but I go to the imaging center and get a CD of CT scans and x-rays. Works well for me - and my docs!

Key message: They're your records. Review them. Ask questions to be sure you understand everything. Sign the releases (if necessary) so your docs in different facilities can see them. It's to your benefit.

[Birdie]

Both Cleveland Clinic and Ohio State have myChart - an on-line access portal.

Pete, do you know how that works? The doctors in my hospital system have the same/easy access to everything but I've spent a vast amount of effort trying to get my records into the VA system, now that I don't have insurance. I've spent days down there with a mountain of records and no luck. I'm guessing your two systems are already connected to each other and I'll never get the same result.

[annekat]

If you look on the right sites the info on the internet is not bad. Contrary to what everyone was telling me.
Thanks for the support. It feels good to talk about it with people who get it.

As I occasionally remind people, this IS the internet. I don't know what we would do without it. A smart person, which we all are, somehow, can navigate the internet and learn not to get sucked in by sub-standard information. It doesn't take long to figure out where the good sites are.

[Pete]

Pete, do you know how that works? The doctors in my hospital system have the same/easy access to everything but I've spent a vast amount of effort trying to get my records into the VA system, now that I don't have insurance. I've spent days down there with a mountain of records and no luck. I'm guessing your two systems are already connected to each other and I'll never get the same result.

Cleveland and OSU use the same software. I don't think there's a direct connection between them as OSU has more functionality. I signed releases with my PCP at OSU and my rheumy at Cleveland so they could see eachother's treatments. I would guess there's a doctor's only portal so they can communicate.

I don't know how the VA does things. Have you signed any releases so your docs can exchange information? I think HIPPA mandated electronic records for all patients to ensure portability, so there ought to be a way to transfer stuff electronically. If you encounter too many obstacles, you might want to get your congressman involved.

Even though I'm a veteran (Vietnam era), my income was too much to get care from the VA.

[Birdie]

Even though I'm a veteran (Vietnam era), my income was too much to get care from the VA.

Pete, for future reference, in case you get truly desperate at some time, my understanding is that it matters not what your financial situation is. Especially for a Viet Vet. The policies are even better for you. Finances only come into play when it comes time to pay. No money in your pocket and the cost is a token amount. If you have insurance the VA bills them and you do co-pays as you would anywhere else if you can afford it. So if you're not registered with the local VA... do it. It takes a long time to get set up. In in an emergency all you need is an honorable DD214 or proof of your identity, they can look it up and will even if you're holding your DD214.

That's my summary of many, many, many... days, weeks, months... down there and getting giant packets of forms in the mail... over the last three years. By comparison it was like buying a tailored shirt to get approved for Soc Sec Dissability.

[Pete]

Pete, for future reference, in case you get truly desperate at some time, my understanding is that it matters not what your financial situation is. Especially for a Viet Vet. The policies are even better for you. Finances only come into play when it comes time to pay. No money in your pocket and the cost is a token amount. If you have insurance the VA bills them and you do co-pays as you would anywhere else if you can afford it. So if you're not registered with the local VA... do it. It takes a long time to get set up. In in an emergency all you need is an honorable DD214 or proof of your identity, they can look it up and will even if you're holding your DD214.

That's my summary of many, many, many... days, weeks, months... down there and getting giant packets of forms in the mail... over the last three years. By comparison it was like buying a tailored shirt to get approved for Soc Sec Dissability.

Thanks, Gary. I'm happy with the care I'm receiving at OSU and Cleveland. I also have a great Medicare supplement that covers most everything, so I'm in a good spot.

[drz]

I go to several different clinics and learned recently that several of them can access info on the clinics even without my consent, something to do with them all being on same software system, but I still request my lab work be sent to all to update my records and to be sure the info is there when I see them.

[Debbie C]

Hi Raynb, I just wanted to chime in and welcome you to our "sick " family, although a lot of us don't look sick !! Good for you on being so persistent and taking charge of what was happening to you. And also standing up to your drs. The first reumy I had still didn't believe I had wg even after my partial lobectomy came back positive for it. And once I went to the er with the purple rash all over my legs they said I had poison ivy and wrote me a script for antibiatics, I knew what it was and begged them to look it up on their comp but they didn't believe me so I left ,throwing the script away as I left. So the one thing I learned is that we ( this group ) know more about this disease then most docs. Glad you are doing so well now and hope it keeps improving.

[Birdie]

So the one thing I learned is that we ( this group ) know more about this disease then most docs.

I've had several seasoned (not young) ER doctors tell me they'd never heard of it. While another told me it was part of the exam to get your license in AZ. So yes, we (WG patients) may lack the medical comprehension but even before I found the group I knew more about it than all but one of my doctors. In the last few weeks I've more than doubled my understanding. I also now have a vast source of knowledge to help me... thank you one all.

[Pierre42]

One of my first comments after getting out of hospital was "it was like a real-life episode of House MD, I keep wondering where the camera crew were hiding".