New Member From Pittsburgh

[Snake Eyes]

My name is Mike from pgh pa. I was diagnosed in February 2021. Before my diagnosis I was a mail carrier for 3 years and I had a 9 hour route I had to get done everyday by 4:00. Sometimes including overtime. I had really painful abdominal pains in my stomach so my dr told me to go to the ER right away. My neighbor took me and I was diagnosed with pneumonia. But I kept getting sicker and the doctors told me I was a mystery. My kidneys were shutting down as well and I was dying so I started praying for god to take me I was ready. I could feel myself slipping away and floating in darkness. They did a biopsy of my kidney and realized I had chronic kidney disease and wegeners which attacked my lungs and my kidneys. I also had half of my right lung removed because they thought I had cancer. Thank god I didn’t! I was in the hospital for 5 weeks. I was on dialysis for 7 months. My doctors said I can never deliver mail again. After I was released I had no guidance from my union. I was supposed to have a light duty position per the accommodation committee but instead of helping me they decided to fire me. They wanted to sweep me under the rug and forget I existed. Life’s bad enough when your sick but when you lose your job also for doing nothing wrong well let’s just say I’m lucky to be here today!

[Geoff]

WOW Mike, talk about falling down a lift shaft, yes you are lucky to still be here. First and foremost I do hope you are being well looked after on both the medical and "Home" front. You must be made of tough stuff, a real Weggie Warrior. Living over here in the UK its totally bizarre to think about the way you've been treated on the job front, I hope you can find better fortune this year. How are you doing medically right now? are you able to accomplish any tasks at home or can you walk any distance. I was diagnosed in 2008 and looking back I can resonate with your comment about being lucky to be alive. My employer was quite compassionate about my position and eventually I was able to return to work but even so I decided to retire early (I'm 73 this year) and we get by on my pension. I decided I wanted to spend more time with family as on several occasions my health dipped and I didnt think I would be able to walk our daughter down the aisle on her wedding day; and yet here I am, scheduled to visit the Clinic at Addenbrookes this Friday for my Retuximab infussion, the last one 18 months ago! I cannot wave a magic wand for you Mike but wish you all the very best going forward. This Forum was INVALUABLE to me in the early days and I hope you can strike up helpful friendships on your journey.

[Pete]

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!!