I've talked with everyone I can talk with. I've seen the final pathology report from Stanford. I do NOT have Wegener's Granulomatosis. Which is a great thing! I do not want to constantly live with a dark cloud hovering in the distance waiting to hang over my head and knock me down. However, why would anyone say I had something like that in the first place? I'm telling you ... Doctors do not know everything!!
Stanford says that my granuloma was infectious and they are 99% certain that it is scar tissue from a healing infection like pneumonia. We are back to pneumonia again. When I, and my rheumatologist, stated that I am not feeling better and the pneumonia diagnosis was three months ago, almost 4 now. There's no way I would still be dealing with pneumonia. All the doctors agree, that possibly the high dosage of unneeded Prenisone that I am now tapering off of could have made me run down (it did make me fatigued) and now my body is withdrawing from it as I come down. I am to continue with the lowering taper and see if I start to get back some energy (also when radiation is done) and that these symptoms start to subside.
Yesterday, an old one returned a lot worse. I felt like I was going to pass out. Hot flash, clammy feeling, and everything seemed darker or ... sharper. There was no tunnel but everything was weak and I was certain that I was going down. I ate, still felt it, ate some sugar to see if I needed to spike my blood sugar... no change. However, I wasn't passing out. I got to my radiation appointment and told them this straight up. They got me set up to be zapped and let my doctor know ahead of time. (I meet with the radiation oncologist every tuesday to check in and see what's up). When they left the room to start the radiation, everything started to spin badly. I tried opening my eyes ... no change. I managed to hang in there til they were done and let them know. Of course, they knew right away because I was again as pale as can be.
I had my vitals taken, blood pressure was up, pulse was very rapid. My blood oxygen was good. They could not get my standing blood pressure. I met with the doctor and he ordered new blood work to see if I was possibly dehydrated. I went over to the RP Kaiser offices and had a very hard blood test. My veins disappeared, they were super teeny and not showing up. Then, when they got the needle in, the blood was barely coming out. That was a little scary. They suggested I drink some fluids as soon as I could. But, all that blood work came back perfectly normal. It is the weirdest thing.
I still feel the same way. I saw my rheumatologist first this morning, he did my vitals, didn't like my pulse and also had a very hard time getting my standing blood pressure. I explained that my heart skips all over the place for hours ... and that I had worn a Holter Monitor for 24 hours two years ago but it was broken and didn't get any data. So, he ordered another, I had to have that put on and then talk to my primary doctor, the pulmonologist, my regular oncologist, etc. I even got to speak to a vasculitis specialist, and everything they were saying was confirmed.
No Wegener's. Something else weird is going on. I'll keep pushing them. But, for now, I need to keep track of how I'm feeling ... get off the Prednisone, get done with Radiation and see if things start to bounce back then. I am sure as hell hoping they do ... I would love to have everything back to normal again and start to live life.
I'm gonna do what they say ... maybe something will pop up. But, then again ... wouldn't something have been found in the almost 4 months of this?
My dog is up to no good, I have to get going and figure out what he's doing ....