Well, what a rollercoaster ride for the past 12 months!! Sheesh!!
I was diagnosed with FSGS a year ago....after working in an auto manufacturing plant for nearly 8 years and 3 shoulder surgeries later, I went back to school. I had just received and academic scholarship for nursing and life was looking up for a change. My BP got a little higher (178/75) and my family doc didn't do anything, so I saw a nephrologist. I picked up my latest labs from the doc and just about hit the floor! My creatinine was 1.9 and no one had bother to mention it to me...nice! Come to find out, this had been going on for almost a year without a word from them. No respectable doctor, let alone an internist, should ignore such a red flag on a fairly healthy person in their 30's! Yes, I am a little bitter about it! lol
I get the biopsy confirming FSGS and am in complete panic at this new diagnosis. Of course, they act as though it is just a cloudy day and call the next "number" in. I was going in every 3 months and was not allowed to pick a doctor...you just saw whomever was there that day. Well, as you can imagine, they all had different ideas for treatment, whenever my labs got worse. Well, they gradually got worse, but they still wanted to wait until they saw the next set of labs. Well, that day came and then all of a sudden, my creat. goes from 1.8 to 2.0 and now it is too late to treat me with anything. I am not a mathmetician or a physician, but that hardly seems to be that different, and surely we could try something! NOPE! I have read other's labs on here that are much worse and yet they are being treated now...what gives?
I guess I just need to rant a little, out of agitation and panic. I wish that I could just find a doc that acted a little compassionate / concerned....heck, they could even just pretend and I would be happy! lol
After the internist screwed up so badly, I started seeing another doc. Well, he is aging a bit and getting ready to retire, and I believe I am just too complex for him at this time in his life. They are not responding to my calls asking for a referral to a closer pain clinic. Yes, I have to get the lovely nerve blocks in my back...OMG do they hurt!! The nephs aren't returning my call for a collaborative appt. to understand the difference in opinion among all of them...they suggested this meeting and now are AWOL. So, I am just entirely on my own without anyone monitoring my medical status but me. LOVELY!! Maybe I will go to med school, if I live long enough, and I can just treat myself. LOL
I do have an appt. with a neph at Indiana University-than God, and I am sure everything will work out just fine. Please excuse the venting, but I let it build up. As I always say, and how true it is, so many people have it so much worse!! Always remember that.