Do you have any idea how hard it is to keep everything straight in regards to my health care. I mean, I'm amazed that I'm able to do it as well as I am (which isn't all that great lately).
I just got a call from Mayo for the latest clinical trial that I'll be participating in. Seems like I'll be going on February 21 in order to do a follow-up for the FONT study (which is the 5-year study that I had to back out of due to abnormal pap results), as well as get consented for the newest clinical trial (whatever that means).
Once I'm consented, I'll need to do 2 first-morning voids, as well as have the pharmaceutical company that's sponsoring the study review my biopsy slides to confirm my diagnosis of FSGS.
First of all, do you have any idea how hard it is to get biopsy slides??? It's nearly freaking impossible!!! Annoying that I can't get my own tissue samples, isn't it? Sort of like it's annoying that I can't get lab results through the lab, but rather have to wait for them to be seen by my doctor first before I can get them. IT'S MY BLOOD....MY TISSUE....and always my hassel.
I think Mayo already has my slides from when I started my care there back in March. At least I hope they do, because IU Med Center has them, and they're pretty stingy about releasing them, which equates to more delay.
Today is one of those days that I'm completely tired of it. Tired of keeping it all straight, tired of the hassel, tired of all the work. Just tired. Literally, mentally, physically tired. Do you know that I took a 10 minute nap in my car this morning in the parking lot of work before I went in because I COULD NOT stay awake? I had a full 8 hours of sleep last night...I'm off the melatonin too. UGH.
I gotta be honest....I don't feel much like posting here lately. So many times I start writing the post kind of "in my head"...
It's been a long time since I posted here....I'm not going to even try to catch everyone up, so let's just dive in, ok? Anyo...
I met with the vascular surgeon yesterday and things are moving quickly. I've got a revision surgery scheduled for this Friday morning....