Nobody Panic

It’s my fault, so nobody panic. Actually, it’s no one’s fault really, it’s more that I just haven’t been able to focus on it until now. Or, that it hasn’t become such an issue until now? Last year it was the tonsils. This year, it’s going to be the kidneys me thinks. Sometimes me thinks I’m mental and a total hypocondriach, it’s hard to dissect. There are considerable health issues that require attention within my own little microcosm of genetics and as much as I’d like to say it ain’t so, it is and as much as I’d like to pretend it ain’t happening, it is. So, here’s the detail, in short and as I understand it.

My recent physical indicates an increase in kidney function, high for even someone with Alports Syndrome. My most recent renal ultra-sound shows that the size and shape of my left kidney has change since the last time I had one (like 10 years ago, not such a big surprise) but it’s also something that is monitored for Alports. It is nothing to get freaked out about right now, my kidneys are still functioning, we aren’t talking dialysis or anything (yet) but it is somewhat cause for alarm because it’s a significant jump since last year and, it is common for the disease to begin progressing around my age. Though, 85% of the time, the progression is in men. Women generally only present 10-15% of the time with anything other than high protein and blood in the urine for the duration of their lifetime. I, however, do have the high blood pressure, cholestoleral, visual and hearing issues in addition to the higher kidney function levels, so…it’s possible I am part of that 10-15% of women who have Alports who may actually experience significant progression. What does this mean? It means my kidneys may gradually (or quickly) stop working, which will require dialysis and eventually transplant. It’s really that simple. The problem is, there is no real way to stop the progression once it is in motion. They can manage my blood pressure and some other things which will help, but the main way to stop it is to lose weight and take uber uber good care of myself. Dammit, I knew these extra lbs were really going to be a problem at some point. Frack.

So, there will be more monitoring, lab work and ultra sounds and office visits where I’ll be lectured about losing weight, getting active and watching my water, caffeine, alcohol and sugar intake. From here on, all we can do it monitor and hope for the best. Sigh…I guess I can do my part too. Though, it is irritating as ALL get out because there’s no real proof that watching all these things carefully and losing a bunch of weight is going to have any real affect at all. It’s sort of one of those “it is what it is” things, but on the flip side, I hardly have any reason not to right? I’m just cranky b/c it means I have to change up my routines a little – poo on that, I’m a creature of habits and rituals my friends and all of my “vices” are included in them, so tghghgbhtttttttttt! Is it terrible that I’m more cranky about the idea of having to give up my Friday night cocktails, coffee and sugar than I am about the thought of what it might do to my health if I do not? What a tangled web we weave indeed.

In the mean time, I also developed a kidney stone (related to the excess proteins) and let me tell you my friends, that is not something I wish to experience again. Promptly followed by a migraine (from the stress and exhaustion of the previous 2 days I’m sure) so I was off work for 2 days. Big big fun. I’d like to note here that for the “average” person, if you wish to avoid kidney stones…drink your water! NO COMPLAINING, just do it. I would rank passing a kidney stone up there with child birth and broken legs, and it was teeny tiny one so…yeah, just drink your water.

The past week of pondering all the implications and resulting discomfort from this new information has been stressful, but I’m managing. I cannot control it and I’m not doing myself any favors by agonizing over it. Of course, you must remember I’ve been dealing with this possibility since I was a young girl and we don’t really know what it means yet, just that we need to start keeping a closer eye on things and as I know more, I’ll let you know more. The first few days my mind did spin out of control, going directly to the most negative possible outcome and panicking and then, panicking about Max because this really causes me to consider him and how this disease will more than likely affect him as well before he’s 40. Again, there is little I can do but share with him the situation. I have offered to pay for him to see a kidney doctor in Casper, he just ignores me. *rolls eyes* STUPID MOMS! What do they know? Friggen kid. It’s like talking to turtle who thinks his shell is totally invincible. For a time, it surely is sturdy and strong, but given the proper circumstances, even a tough turtle shell can become vulnerable. Often, through no fault of the turtle’s at all and no matter what the turtle thinks in his little turtle brain, if he’s not keeping an eye on how strong his shell is, it could suddenly just fail on him and his little wiggly underbody will be totally exposed and vulnerable and needing a lot of support to stay safe. Friggen turtles.

More soon my lovely readers, and you are…lovely I mean. No worries, just prayer and love us like you always have and always do. How blessed are we?