Hello everyone. I tried coming on regularly over the past couple months just to say hello to everyone until I started getting sick again. I just thought it was a typical day for me and overlooked it. Talk about 5 non-stop days of living hell. I felt like I was at the beginning, only this time I'm not waiting for a diagnosis, but a confirmation of active disease or just minor bumps along the road.

Day 1: General aches and pains during flu/Covid times. I continued my days as usual, no complaints made to any doctors.
Day 2: Same as day one but addon the chest discomfort and hearing wheezing sounds every time I inhaled. I started documenting things from this point onward.
Day 3: Everything the same but now my skin was burning below the knees. It felt like somebody threw gasoline on my legs and set them on fire.
Day 4: All of days 1-3, just add on the first minor nosebleed that ended within 3 minutes.
Day 5: All the pain in my skin was gone, chest discomfort gone but had a massive nose bleed that I couldn't stop. This lasted almost 20-30 minutes!!! It poured like a faucet and made the bathroom look like a major crime scene.

I reported all of this to my Rheumatologist. The office did get back to me the next day. They still warned me about prednisone during Covid-19...if I go on it it will double my chances of being hospitalized for Covid. I decided not to go on it based on that information. I did my regular blood & urine tests that were due later on. I had a gut feeling that the nose bleed wasn't the actual problem, but the warning sign that other bad things were happening internally that you can't see just from looking at me. I got the results the next day and boy oh boy... was I ever right! The kidneys took a massive hit compared to where the numbers were previously. At the beginning close to my Wegener's diagnosis, I did get a separate diagnosis of RPGN, rapidly progressive glomerulonephritis. I was wondering if active disease caused this to come back. So far, Rheumatology and Nephrology to this date, have not suggested anything with the results of my lab work. So I thought, no news IS GOOD NEWS! But then today, I had my appointment with the Urologist as my follow-up from 6 months ago. He looked at my most recent blood and urine tests and he was very concerned about the amount of blood and protein leaking into the urine. The only thing that looked normal was my name, date of birth and phone number. LOL We discussed where my creatinine and eGFR levels usually are and they were totally off the charts. He said, "I need to know if it's your bladder or further up in the kidneys." That tells me that he and the kidney doctor need some more blood & urine tests done. I'm ok with that because I'm curious too. I know from my own past experience that kidney involvement often gives off no symptoms until it's too late.

Now that I've spilled the beans.... I know that Wegener's has used up all it's vacation days and it is now back to work trying to destroy me... what do I do from here onwards from a patient's point of view? What is it about my kidneys that this disease loves so much? They were the last to get attacked yet the first that needs to be investigated. Any input from anybody is appreciated. I'm just worn out from all of this but still optimistic. I'm just worried that the road to dialysis is coming up close. If I have to, I have to. But is there a way to get things in check as a preventative measure?