Nephrology Woes

I didn’t know what a nephrologist was until 2008 when I first sent to see one.  They are doctors who specialize in kidneys.  In early 2008, I became suddenly quite ill, and the illness lingered and lingered mysteriously.  After seeing numerous doctors and specialists, it was eventually discovered that I have a rare kidney malformation called Medulary Sponge Kidney.  What that means is my kidneys are in the process of growing tons and tons of tiny, almost microscopic cysts inside them, which are too numerous and small to remove (not to mention they would just come back).

An illustration might help.  Here is a normal kidney:

Here are mine:

The little cysts interfere somewhat with how well my kidneys filter, but more than that, they hurt. A lot.  On bad days it feels like I’m storing shards of broken glass in my abdomen.

The other thing about it is though that while it does impede the filtering function a bit, it’s nothing especially alarming to the nephrologists.  They are far more concerned with their patients who are on dialysis or dying of kidney failure.  They don’t seem terribly interested in doing anything for me, because their focus is on helping those with seriously impaired kidney function.  I might get there in a few decades, but as of now they just want me to send in frequent blood and urine samples and leave them alone.  And, oh, that pesky, unbearable pain?  Too bad.  Not what they deal with.

In late of 2008 I was finally sent to a pain specialist, who tinkered around with various combination of drugs for me to try, most of which left me chained to the toilet in nausea.  Eventually we found a combo which worked fairly well to dull the pain without making me barf every meal I ever ate… but even on this set of meds, I am completely house-bound whenever I’m on it.  I cannot be at work, I cannot drive, I cannot be a passenger in a car or I will get unbearably ill again.  I have to be at home with no plans of leaving for at least 6 hours.  It’s not at all a fair trade, but it’s better than nothing.

Eventually I began getting a series of nerve-blocking injections from my pain specialist.  He puts me under for a short time, then injects the individual nerves who are throwing the pain-fits with a steroid and a numbing agent.  I’ve had this done three times and it’s brought back a lot of quality of life which I had been losing.  It’s an ugly procedure which leaves me feeling like my ribs are all broken for 2-3 days and having weird steroid side-effects for the next month, but it’s better than the alternative.

So today I was set to see the nephrologist again, which I was not looking forward to.  Each time I go in, they find some new way to frighten me, tell me there’s nothing they can do to help me, and that I’m completely alone and fucked.  I already know that.  I don’t want to be reminded of that every six months, just as I’m starting to get my courage back after the last visit.  But my pain had been on the rise again recently, which I thought meant that the injections were starting to wear off and would need to be repeated… in which case seeing him would lead to a referral to the pain specialist again.

I expected that the nephrologist would be in favor of the injections, because having them cuts down greatly on how much pain medication I need to take… and the nephrologists are always scolding me and telling me that the long-term effects of taking lots of pain medication will wreak havoc on my kidneys.  But the nephrologist today threw me a curve ball.  He happily upped my dose of meds to combat the extra pain, and discouraged me from having more injections… because, apparently, repeated injections can lead to scarring around the offending nerves.  And scarring around the nerves can mean that, over time, no amount of pain medication would ever reach them, and no injections would ever help them.

Fuck.

Fuck, fuck, fuck.  If I take loads of pain meds, I’m living as a house-bound recluse, missing out on all sorts of parts of life, except for work, which I have no choice but to go to and simply suffer whatever pain I feel when I’m there.  And with every pill I take, I am causing more damage to my future kidneys.  If I have more injections, I have one awful month dealing with the side effects of it, but eventually start to feel much better and am not nearly so isolated… but apparently, that’s just a ticking bomb for future pain of unimaginable proportions.

It’s a rock and a hard place, isn’t it?  I have no idea what to do about this.  I felt numb with frustration, anger and fear on my way home.   I’ve put a call into my primary care doctor to get her opinion on this, but I feel so stuck, like any move I make will only cause me further harm.

Life is often not fair, I know.  I am not a unique case of this.  I am just at such a loss of what to do, and so full of frustration about it, a venting was necessary.