Once Again, I'm Medically Bizarre

This post is going to be long. Consider yourself warned!

It's common knowledge that I have kidney disease. I'm sure I've shared most of that journey but I want to step back there for a moment.

I remembe the first day it all started. I was living in Rehoboth Beach, DE, with 2 of my best friends, managing a record store. I wasn't feeling well but no one would work for me, so I went in. At one point I had to pee, so I did, and when I turned around to flush the toilet I noticed that my urine was brown. Like.. BROWN. I knew it was blood. I called my parents right away, as they both have medical backgrounds. They were pretty scared, and I came home to Baltimore to see a doctor. They confirmed it was blood, but it went away with antibiotics, so they weren't concerned. The problem was that over the next few years it kept happening. I kept going back tot he doctor and I kept being told I had a bladder infection. I went to the hospital and they couldn't find anything wrong (obviously peeing blood is a problem, guys). I told my doctor that there had to be a correlation between me getting sick and peeing blood. The response I was met with was "maybe you're just weird". I kid you not. So I got pissed. And I went home and googled "Hematuria and sick" (I'm not making that up. That's all I had to do). The very first link was for IGA Nephropathy - one of the main symptoms being blood in the urine when you get sick.

I printed out all the info and took it to my doctor of 13 years. He looked it over and said to me "Normally I don't pay a lot of attention when people bring things like this to me, because normally they're wrong. I don't think you're wrong". So he sent me to a nephrologist and we confirmed. 4 years after the first episode, because "maybe you're just weird" was good enough for him, and, thank God, it wasn't for me.

My family decided we wanted to see the best doctors, and so we sent all of my information to Johns Hopkins to try to get on their waiting list. The doctor will only accept patients if he reads their notes and deems them.. not critical, but... in need. It took a few months, but they called to set up an appointment, and this is when I met Dr. Choi. Andy and my mom both came to the appointment (my dad was still in Singapore at the time). He wasn't sure how bad my disease was at the time, and he ordered some tests, which confirmed it was indeed a big deal. He also said if we'd caught it sooner we could've dealt with it better.

The good news at the time was that my kidneys were still filtering (still are) but that I was leaking a ton of protein. What happens is the membranes in your kidneys get holes in them that grow, so protein leaks out into your urine. The problem is that when that happens, some of it gets absorbed by the kidney, causing further damage. My creatinine is creeping up, but for now it's doing so slowly. "Normal" people lose no protein at all. Up to  about 100mg CAN be normal. Generally speaking I leak about 6000mg. So 60 times the highest of "normals".

Fast forwarding a little bit... I went through two rounds of steroid treatments that didn't work. Or, they seemed to be helping, but then just... stopped. By some miracle my nephrologist got the high risk OB to let me do  IVF. We did not tell her that the low protein she saw was due to medication and it had gone back up. He basically had to tell her "it's now or never". She and my OB have been expecting my numbers to get worse, though. They've been expecting problems with the pregnancy - high BP, IUGR, etc. A few weeks ago I got a test result saying I was leaking 3000mg of protein. High risk thought it was "the same" but it was down by a lot. So today I saw my nephrologist who knew the truth. And things were interesting.

First, he did not have my lab results, despite the high risk calling specifically to get his info. He is pretty sure it's misfiled, so I told him it was about 3000mg. He didn't seem to believe me. It's not that he thought I was lying, but he's very logical and needs an explanation for things. He suggested perhaps even a lab spillage! The only thing he could come up with was that perhaps the treatments I had just had delayed results; however, he said he's never seen that with my disease, and it would be "bizarre". He asked me what the OBs were expecting of my kidneys and pregnancy and I told him, flat out, that they expected it to get worse. His response was "So did I". He said that pregnancy is hard on your kidneys, and high bp is as well. He asked if they were happy with my bp, and I said no, not really, but they didn't want to up my meds (it was 143/83 at his office). He said those were the parts of pregnancy that they worry about with progression of renal disease. And I think what he wanted to say was "Why the hell are your kidneys getting BETTER!?".

He then explained that he thinks lowering sodium is very important, so I brought up to him that I didn't eat much the first 20 weeks because of nausea, so by default I didn't get a lot of sodium. He said that sounded better than his theory so we'd use that. He also said he thinks everyone else is taking my blood pressure incorrectly. I told him I normally get it done by a machine, but he said he thinks they're using the wrong cuff. He put a cuff on , and it worked, but he said he wanted to try the bigger one to get more "overlap". He did, and my bp was 130/60. Uhm... wow, difference. It's funny because the only other place that always changes the cuff is here at work, and my bp is always good here at work. So maybe he's right!

So what's the meaning of all of this? Well... I'm a medical mystery. By all rights my kidneys should be getting worse, and they're not. There are theories, but he doesn't know why. He's surprised.. I'm surprised... and the OBs keep expecting the worst and for now, it keeps not happening. And the only explanation I have is that God is working on me and through me. Basically, it's a miracle. I'm thankful to have this beautiful little girl growing inside me (24 weeks on Thursday!) and to be healthier than I've been in a long time. It's weird, and I'm just grateful for it.

PS: On a completely unrelated note, my bff had her gender reveal party and she's having a BOY!!! So now we get to go buy boy clothes! I'm totally pumped to have a reason to buy adorable little man sweater vests.