Kidney Problems

Here's some background on my kidney problem, which is going to become apparent in my blog pretty quickly.

Back in the summer of 2004, I was 23 years old and living at the beach in Delaware. I was managing a record store and living with 2 of my best friends. It was kind of awesome. Somewhere along the line I got very sick with what turned out to be a strep infection, and I noticed shortly thereafter that my pee was a weird color. I called my parents, and since they're both biologists in some form or another, they got worried and made me come home to see a doctor. The doctor confirmed blood and protein in my urine, and said the strep was probably in my kidneys, and with antibiotics it cleared up.

And then I got sick again. And my pee was purple again. And I mean purple. Not lilac or lavender or something soft. And the doctor said I had blood and protein in my urine and it was probably a bladder infection.

And then I got sick again. And.. blood, pee.. you get it. The hospital didn't find anything alarming, so I went home, healed, and was fine.

And then... yeah. At this time it's 2008. I go to the doctor and he tells me to pee in a cup, so I do, and it's so purple it freaks me out. I put it on his counter on a nice, white spot for contrast, and wait. He walks in, looks at it, looks at me, and says "Is this yours?". Tempted to say "No it's actually grape juice..." I hold it in and say "yes". He tests it. Blood. Protein. He goes so far as to let me look at the protein in the microscope. I'm fascinated by this, but want to know what's wrong. There have been a few other episodes where he's told me it's a bladder infection, and says the same. And I finally pipe up and say I think it's an interesting coincidence that it happens every time I get a cold. He says (and this is a direct quote) "maybe you're just weird". And sends me on my way. Dr. Google and I have a meeting that night, where I simply type "hematuria and sick" in, and am presented with IGA Nephropathy, a kidney disease that is overwhelmingly discovered when a patient gets blood in the urine with a cold. So I take this to doctor asshole (as I now lovingly refer to him) and he looks it over. This time he says "A lot of patients come to me with things they've found on the internet, and normally they're wrong. I don't think you're wrong". And finally, after 3 YEARS of peeing blood, he sends me to a nephrologist.

The nephrologist orders a kidney biopsy which indicates I do indeed have IGA Nephropathy. But hey, it's cool, right? Most people with IGA don't end up with a ton of issues and don't even know they have it! But I'm not happy with the doctors so I send my records in to Johns Hopkins hospital, who are, in my opinion, the best at pretty much everything (and who US News and World Report just ranked #1 overall, though they're supposedly #3 in nephrology). They screen nephrology patients for entry, and it takes some time, but one of the doctors wants to see me, so I go in for an initial consult and meet Dr. Amazing (in sharp contrast to Dr. Asshole). It was February 2009 when I had my first appointment, and we did some testing over the next few weeks, which provides a key piece of information. That protein in my urine? Yeah, there's a lot of it. As a matter of fact there are 6000mg of it, when normal, really, is about 0. Dr. Amazing informs me that this is a very bad prognostic indicator, and some more blood work shows that my kidney disease is, indeed, progressive (but that, hey, if we'd treated it right away we might have been able to fix it! Ahem. Malpractice anyone?). He tries some medications that help a little, but decides to pull out the big guns - IV steroids - just in time for my wedding. Because that's exactly when I was hoping to gain a ton of weight and grow hair on my face. But I do it, and my protein gets down to 1800. And then goes right back up again.

(I'd like to note here that it's during this time that we discover my husband has a brain tumor. We'd been cleared to start trying for a baby right after the wedding, but it wasn't happening, and we discovered the tumor was causing a lot of problems. This was a pretty low point for A and I. And just when we're about to start fertility treatments, we're told my kidneys were too sucky again).

It's right around this point that Dr. Amazing tells me, my mother, and my new husband during an appointment, that he can't give me 5 years without needing a new kidney. And I made it clear that I wanted a baby, and because currently my kidneys are filtering OK, just losing protein and getting ready to go bad, he makes some calls and gets my high risk OB on board with letting us do IVF. Which fails.

So just to recap, we have A with a brain tumor, me with failing kidneys, and a failed IVF cycle that cost thousands of dollars. Fun, right? I don't even know how we managed to keep going, but we did, and our second cycle worked. Dr. Amazing is excited (in his own way. I'm not sure he actually has emotions) and keeps in touch with the high risk OB who gets serial 24 hour urinary proteins for me... and finds out my protein has dropped to 3000, despite taking me off all my meds.

And that's kind of where we are right now. I'm 33 weeks pregnant today, and shortly after I have the baby I will be going back on blood pressure medicine to protect renal function, with a goal of getting my protein under 1000. If that doesn't work, we'll be headed straight to Cellcept (don't look it up unless you like to read about all sorts of horrible things that can happen to peope who take it). And if that doesn't work, I sit and wait for my kidneys to fail.

I'm a praying type, and so I pray for a miracle... and really, my kidneys should have gotten worse, not better, with pregnancy. So I'm thankful for that. And time will tell us how things will turn out. But Dr. Amazing has assured me that if I need a kidney transplant, I will get one. And I sort of thing he'd be willing to go black market to get one, so I believe him.

Update: So as it turns out, we werent really where I thought we were at 33 weeks. In December, my creatinine was 1.1. In January, it was 1.4, and two weeks later, in early February, it was 1.6. This is a huge, huge jump in creatinine over such a short time. I was actually in the hospital at this point and told that we might have to have the baby that day!! But we decided to wait a week and see what happened, and we discovered some sort of urinary.. kidney... something.. infection. I started on antibiotics and my creatinine was 1.3 at the next test. Right now we're not sure if my kidneys are just.. seriously failing, overworked because of the baby, or superficially troubled due to an infection. So I'll be delivering my baby next week and hoping and praying my creatinine continues to come down, and not go up again!

Update: Wrong again. By the time I got to the induction my creatinine was 1.8. Yikes. I delivered a gorgeous, healthy little girl on 2/22/12. My creatinine at last check was about 1.4, so it's significantly higher than pre-pregnancy. BUT we're still trying some things to see if we can get it down. Right now my tiny tot is 15 months old and we'd love to have another despite all my issues. So we'll see if we can do anything to heal me and pray for guidance in the mean time.