I'm now 'that person'

I remember watching sit-coms where the older people were stereotyped as talking about nothing other than their current (and past) aches and pains. I used to laugh and think 'how ridiculous'.

No more.

I've become that person... and I'm not even that old!

It's so hard when something totally consumes you, whether it be a new hobby, a new beau or a progressing disease. Your mind becomes consumed. And when people ask a single innocent question, it seems like the dam bursts and suddenly this single track of thoughts come gushing out. TMI! Too much information!

So now the question is... how do i balance who I am WITHOUT the disease with the person I am WITH the disease?!?

I don't want to hide anything, but do people really need to know the details of persistent flank pain, the timing difficulties I face due to medications that interact, blood test results and the gut-wrenching, paralyzing FEAR that I experience when I let myself think about things for too long?

I'm not sure yet, but I think that the key is the word I used earlier - BALANCE.

I plan to be open about the fact that I have an incurable, genetic disease. When it affects my day-to-day routine, I will share that I'm facing some challenges.

But all those nitty-gritty details? Yeah... I'll be keeping those to myself unless someone explicitly asks me for more information. I'll also be using this blog to try to offload some of the pressure to share.

Like with anything though, I need the emotional support of family and friends to help see me through this. So when asked how I'm honestly and truly doing, I won't be automatically volunteering 'Fine'. But I'm also not going to start droning on about how annoying it is to have to have multiple pill organizers and an alarm on my phone to make sure I'm taking my meds on time.

But I will be honest. And when I need help and support, I'm going to try to ask for it.

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Round 2 deja vu

My doctor decided to keep me at the initial 45/15 mg dose for another months so I'm anticipating a similar water consumption. Here are the first four of seven (?) or eight (?) five gallon bottles of water. My local grocery store has a water bottle fill station for an extremely reasonable 39 cents a gallon. The frugal side of me thinks I should invest in reusable water bottles and take advantage of the savings. The lazy side of me thinks that it'd be a total hassle to wash the bottles, keep bugs and dust from falling into them before I'm able to refill them, remember to take them with me to the store (I can't even remember those reusable shopping bags) and then stockpile a source of bottle caps. It's just so much easier to buy these recyclable five gallon bottles. Lazy beats frugal.

Artificial kidney

I have a somewhat fanciful thought of what an artificial kidney would look like. I see a device that is shaped like a kidney (of course) but is completely clear so you could see all the blood circulating through it. Granted, once it's implanted no one's going to see it but - hey - it's my vision. The closest picture I can find of what's in my mind's eye is this image. Granted, that's a picture of a kidney-shaped paper weight and it's a little cloudy, but I know you can picture it too. My, oh my. My imagination is not even close to reality. According to a post from the American Journal of Kidney Diseases , there are three new approaches being explored right now: the automated wearable artificial kidney ('AWAK'), the wearable artificial kidney ('WAK') and the implantable artificial kidney ('IAK'). My money's on the IAK and you'll understand why once I show you the concept pictures of the other two. The AWAK is said to ...

A happy liver

I'm two weeks into my Tolvaptan adventure and I'm happy to report that liver tested with no change to the pre-medication levels. A shout out to my liver. Way to go! One of the potential side effects of the medication is liver damage (which has been proven to be reversible as long as it's caught early). Discontinuation of the drug causes the reversal. Fortunately, the reported incidence of liver damage is relatively low at only 4-5%. More recently, in large registration trials of long term therapy in patients with ADPKD, serum aminotransferase elevations occurred in 4% to 5% of patients on tolvaptan, compared to only 1% of controls. Furthermore, clinically apparent liver injury occurred in approximately 0.1% of treated patients. The time to onset of illness ranged from 3 to 7 months (Case 1), but occasionally arose during long term therapy (Case 2: after 3 years of intermittent use). National Institute of Health Crossing my fingers that we'll be able to incr...

Truly blessed

For all the medical issues I have, for all the uncertainty that exists in my future, for all the modifications I need to make to my lifestyle... I feel honestly and truly blessed. Yes. I have an incurable disease that can possibly lead me down a path towards dialysis, organ transplant, lifelong immunosuppressive drugs and early death. But... I don't have diabetes. I don't have a history of aneurysms in my family. My blood pressure is well-managed. My risk for cardiovascular events is low. I work for a company with good healthcare. My job allows me the flexibility to go to doctor appointments and labs. I have friends and family who love and support me. Could be much, much worse.

Test tube kidneys?

While I'm sure that Miromatrix would shudder at my description, it looks like they're developing the equivalent of a test tube kidney which could be used for transplant. While the science and bioengineering behind it is extremely complex, this is how I understand it. Miromatrix uses decellularization and recellularization technology to create a transplantable kidney. Huh? They take an dead organ - it doesn't even need to be human - and using detergents (I'm guessing they're stronger than Dawn ;-) ) they strip away all the cells. What remains is the kidney's extracellular matrix (collagen, enzymes and glycoproteins) and all its chemical cues. Then the "generic" organ is repopulated with the transplant candidate's cells, eliminating the risk it will be rejected upon implantation. Early studies have shown that it takes from four to eight days to culture the transplantable kidney and, even better, the new organ produces urine when tested. B...

My Two Gallon Habit

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