Not sure this post belongs here, but you guys are always really supportive and I'm scared and stressed right now.
I had my 1st in person nephrologist appt today. It was disappointing, and invalidating. My BK virus is up. He told me to lower my myphoneolate and prednisone to give my body a chance to fight it off and send the virus to sleep again.
I brought all my labs with me and asked him the various questions I had. He answered them but acted like he was trying as hard as possible to get out as fast as possible. He said my low carbon dioxide levels indicate renal tubular acidosis. Which means my kidney isn't doing the best job of balancing the ph of my blood and as a result my blood is slightly acidic. This can be a sign of kidney transplant rejection, and I asked him about it but he didn't seem concerned because my creatinine/protien levels were fine.
I have no faith in this practice or these doctors for so many reasons. Ive given them 3 chances, and I'm not giving them any more.
He wants me to wait 3 months to get blood drawn. Last time my BK was up my previous Dr ordered labs every 2-3 weeks to make sure it the virus levels were decreasing. There is no way in hell I'm waiting 3 months to get labs again, because what if lowering my immunosuppressive drugs doesn't give my body the needed boost to fight it off? And they just want me to wait 3 months before checking it again? By then my BK levels could be in the millions. And by then acute rejection could be taking place. Im going to call my doctor in Az and see if he'd be willing to take a look at my labs. I already called Dr. C 's office but they don't have any apps available till december. Im going to email my transplant team tonight too--maybe they will be able to offer some reassurances or give me a 2nd opinion.
I was talking to my mom about it and I actually started crying. I can't lose this kidney. The idea of going back on dialysis again is terrifying to me....
But I'm going to do everything in my power to get in to see a competent Dr, and make sure my health is being taken care of.
I'm just scared right now, and feeling very frustrated. Its like no one is taking my health as seriously as I am and it makes me want to scream. This is MY body. I am IMPORTANT. I MATTER. And when things just get blown off it feels...bad. Very bad....
HiI jsut wanted to say HAPPY SUNDAY and I hope everyone is doing well. Thinking about you. Whatever is going on. Wherever you are.Happy or sad Please remember thatYou aren't aloneWe are here Fighting back!!!Living!!!Propeling onward with youYes, you!!!
I know I may be over the top with these check-ins.... I like to hear how others are doing so we can check in with one another.how is everyone doing?I started a new med today and I am soooo sensitive. Instantly feel effects. So though I want to go out I have been staying in doing laundry and cooking. The sun is shining but air is crisp. think I'll watch some movies and stay under a...