I am back where I started

 So two months of tests and appointments with the hematologist, as well as a renal ultrasound, I am back where I started: I still feel like garbage, lethargic, depressed, and still have this weirdness with my RBC, HCT, HGB. Sadly, from a blood standpoint, no new discoveries were made.

Then I received a "notice of adverse determination" from the insurance company regarding a full panel of genetic tests run--to the tune of $18,000--and the insurance isn't paying.

So imagine my dread and fear of feeling physically awful being compounded by the possibility of having to pay an $18,000 lab fee. 

Despite the fact that I do not have the energy or capacity to deal with dipshits these days, first call I made was the insurance company, in case I needed to start the appeals process. They then referred me back to the hematologist, who was going to suggest I call the lab directly; however, they were super helpful and reached out to the lab on my behalf. The lab called me back, even more helpful than the hematologist's office, and reassured me that I will not end up being responsible for this, that they deal with this all the time, and they even gave me their name and telephone number, so in case I get any other notice about this, they will handle it. 

So, YAY, right?

Well, my last phone call with the hematologist was unsettling. She proceeds to tell me about some remark on the renal ultrasound (which did not show up anything which might play into my RBC, HCT, HGB issue), and she kept saying "perincable." And as best as I could Google, I could not find anything. She kept saying PERINCABLE. It was too much for me to even process, I didn't ask her how to spell it; I waited until later and asked her nurse to scan it as a PDF and email it to me. The new word in my vocabulary now is "parenchymal." She so very casually said "renal parenchymal disease." I've gone some preliminary readings on the topic, and my heart has sunk.

At the time of the ultrasound, I signed a release so a copy of the report would be released to me (I still have not received it), and a copy to be provided to my nephrologist, and I can only assume he never received it. So yesterday, I emailed the PDF to him.

I normally keep my phone on DO NOT DISTURB, so as to keep the telemarketers away; however, I've kept it turned off on the off chance the kidney guy wants to call me and discuss what exactly this new information MEANS--and/or whether it changes anything.

Right now, I'm a practical woman. I've known I had glomerulonephritis, but no other diagnosis to accompany it. I've long suspected what killed my dad was CKD, as mitral valve prolapse is a byproduct of that--and in the end, what killed him was pulmonary and renal failure. I have seen what end stage renal failure looks like. It's terrifying and painful. Dad wasn't on dialysis, though.

So now I'm wondering if that glass of wine I had during lunch before the ultrasound impacted the results all that much. Wondering also if I am going to have to stop drinking entirely--not that it's a lot. There are weeks I go completely without, and then I can go on vacation and lose a bit of control as I did a couple weeks back--and now my energy levels are worse than they've been in a while. 

My proteinuria has improved. My GFR is quite good (for someone my age, and for someone who doesn't have kidney disease). But I wonder how long I'll be in this holding pattern.