Need a good Wegeners rheumatologist in Phoenix.

[Birdie]

Suffering a bad flair after seven years of no symptoms. The Phx VA is finally letting me go to a real doctor. I need to submit names of doctors with experience, immediately! Please reply with names of doctors IN THE PHOENIX AREA who have proven they know what they're doing.

[Pete]

Dirty Don This one’s for you...

[Dirty Don]

Hi Birdie, I'm a golfer here in PHX, thought Pete was offering me a birdie! LOL Seriously, I have been at Mayo PHX for 10 years. The docs are in Rheumatology: Dr. Lester Mertz, MD (head of Rheumy dept.), and Tammy Larson-Cain, APRN, generally his NP for all intentional purposes. She knows her stuff tho...in fact, I'm about ready for another infusion of RTX and she's already on top of it with knowledge and awareness of my numbers...much better about it than I am...I'm golfing...lol. Basically, Banner Hospital saved my life but didn't know what to do next...Mayo did...great medical practice in general. Let me know about any other info you may need or want. Best to you!

PS: getting into Mayo isn't as hard as it may seem, just keep calling them every day and cancellations will pop up quickly. Also, most insurances are taken by Mayo...it's up to the individual docs if they want to treat you or not...keep at them, they'll do you well.

[Birdie]

Thank you for the referral, but the VA says they don't play well with Mayo. A VA patient cannot get into Mayo.

I still need to find a good Wegeners doctor as fast as possible. Must be in Phx area. Can't begin to describe the problem within the VA, but I have no chance of getting appropriate treatment. Urgently needed.

Thank You,
Gary

[Pete]

Birdie

Maybe it’s time to get your Comgressman involved. The VA should be putting you first, not their f****d up bureaucracy.

[Birdie]

I have the number to the White House office charged with solving patient problems. If they can't help...

[Pete]

I have the number to the White House office charged with solving patient problems. If they can't help...

Go for it!! You've got a lot to lose if you don't!! Good luck!!

[Dirty Don]

If VA won't go to Mayo, then call Mayo rheumatology, tell them your situation, ask for recommendations outside Mayo. And, ask Mayo if they play well with VA...may go just one way for them. INSIST on better treatment...

[Birdie]

Most urgent, I need a list of Wegeners capable docs in Phoenix.

Second... read below...

This is hard for people to understand, so I'm writing an explanation.

THE VA IS NOT A HEALTH CARE SYSTEM. It is a very broken beurocracy. It has been catastrophically failed for decades. My memory of it only goes back as far as the post Vietnam era in the 70s, when patients were lined up laying on the floors waiting for medical help. I heard stories then from vets missing limbs who'd been waiting days to be seen, going home each night only to return and lay on the floor again. WWII vets told similar stories going back further.

I have spent the last six years fighting the failed beurocracy. My personal horror stories of it would do nothing but cause you to question my honesty. You would not understand or believe it possible.

The VA only FEEDS ITSELF on the medical needs of vets, those who have no other option for health care. The VA food troughs are the statistics used to baffle and bullshit congress. If it doesn't add to the statistics, you can't get it out of the VA. Example, they do massive numbers of medical procedures. I've been in every imaging machine in the building, most of them many times and most often it was pointlessly done. The VA thrives on procedures because the statistics generated are accepted as proof of providing health care... on a very large scale.

I've been to the VA emergency room about 30 times because it's where you're told to go... when the next available doctors appointment is over 3 months away. The VA ER has never once addressed the problem I presented, but does at least one pointless, and often unrelated procedure. Three times the VA ER LOST ME! They didn't even know I was there for eight hours. All they did when finally finding me, was a quick discharge with no health care provided. Get the embarrassment out of the building as fast as possible before he raises hell.

I even met with John McCain, the self proclaimed veterans best friend. He was a worthless self serving politician who talked big and had no ability to do what he claimed he did every day.

The White house set up a department a few years ago to deal with the problem, while the media was constantly reporting on individual veterans dying from lack of health care. All the White House does is to pass the veterans complaint, to the complaint person at the Phx VA. I can be ignored just fine without help from the White House.

Now... if you think I'm just a lifetime of sour grapes, then read my introduction to this forum. I was (as always for a lifetime) a very upbeat person. I was just getting started on this war for health care. I now know it's impossible. This flair is likely to kill me while the VA watches and worries only about bone density scans they're always wanting to perform. Prescribe vitamins for bones, but send me away from the hospital without treatment for Wegeners. THERE IS NO STATISTIC TO FEED THE VA... FOR ACTUALLY RESPONDING TO HEALTH CARE NEEDS. DOCTORS WHO TRY HAVE SO MANY BEUROCRATIC RESTRICTIONS ON THEM, THAT THEY GIVE UP IN DUSGUST.

https://www.wegeners-granulomatosis.com/forum/threads/4932-Wegener-s-sucks-(in-case-someone-didn-t-already-know)

Sorry... I really needed to say at least this much. It's not one percent of the story.

[Dirty Don]

Understood...keep at it, you'll get what you need...best to you.

[Birdie]

Dirty Don, thanks for listening to me vent.

There's no solution to the problem, but in a small way the head of Rheumatology is admitting the problem, by finally submitting the form to recommend that I get treatment outside the VA.

I just need names of proven Wegeners docs in Phoenix.