@Snake Eyes

Hi Mike,

I'm sad to learn that your union wouldn't go to bat for you. It's bad enough to be sick, but when the people you count on to help you fail, that really sucks.

Where are you getting treated? Did you know that one of the world wide centers of excellence for vasculitis care is a couple hours drive away at Cleveland Clinic? (Yeah, I know it's Browns country, but hey, you're sick, and they can help you.) I was treated there by Dr Alexandra VillaForte. She only treats vasculitis patients. She's an excellent doctor. She treats several other members of this forum.

I'd like to think that with appropriate care and adherence to doctor's orders, you can get back to a good lifestyle.

If you picked up on the word "was" when I mentioned Dr VillaForte, it's because I've been very stable since 2017 and doing well under her treatment regimen. I now have a vasculitis doctor at Ohio State who is following the same protocol. She's less experienced that Dr VillaForte, but she has acquired her vasculitis expertise at Mayo Clinic (another world wide center of excellence) studying with Dr Ulrich Specks. My local doc is only fifteen minutes away instead of two plus hours. (I'm 77 and getting really tired when making the drive to Cleveland during Columbus' rush hour, being examined, sitting for a rituximab infusion, and returning home at the beginning of Cleveland's rush hour.)

I have some kidney involvement (stage IIIb chronic kidney disease), but we keep an eye on things with monthly lab tests. I get a complete blood count, a comprehensive metabolic panel, and sedimentation rate test, and a urinalysis. The metabolic panel tells how my liver and kidneys are doing, the sedimentation rate is a measure of general inflammation, the blood count tells me whether my white blood cells are getting too numerous, and I get the urinalysis because I was on cytoxan as induction therapy for almost two years. (A side effect of cytoxan is bladder cancer, so the urinalysis is for my peace of mind.)

Lifestyle wise, I do ok for a guy my age. I walk 2-3 miles several times a week (weather permitting), play bad golf in the summer, help maintain a household with my wife, do most of the cooking, and enjoy being with my grandkids.

I hope you get effective treatment soon and can return to a more normal lifestyle. Good luck!!