Time to pivot

One of the worst things about living with a chronic illness - ADPKD in my case - is that you wake up one morning and find that suddenly you have limitations.

What? I'm used to powering through things. My dogged determination is my signature!

Sadly, not any more.

I've noticed that I'm tired more often. And when I'm working on things - like gardening - that I start out strong but quickly run out of steam.

Take, for instance, my fire pit. Last year I thought it would be a great idea if I created a landscaped fire pit at my house. I had the perfect place for it and I thought that it would add a great focal point to my backyard. I started digging up the area (yes, by hand. I never said I was particularly smart ;-) ) and barely made a dent.

Then winter came and Wisconsin was buried in snow. Now in May the snow has finally melted (but check back with me next week - it may be back) and I started thinking about that fire pit again. Hand digging didn't seem to be very expedient, the cost of having someone else do it seemed exorbitant but maybe I could rent a backhoe and do it myself...

Whoa, whoa, whoa!

Do I really need that fire pit? Do I really want to dedicate that much time this spring/summer to creating a fire pit?

Honestly, I like gardening a heck of a lot more than creating hardscaping.

Pivot.

So now I'm in the process of filling in the holes I created last year. I'm leveling out the area. And I'm going to... create a small flower garden. There's already a fire pit in the back corner of the yard (but not as pretty as the one I'd engineered in my head) so I'm going to landscape it so it looks less utilitarian and more recreational.

This disease sucks the energy right out of you. It's my choice to decide how I invest that energy. As the Rolling Stones so eloquently said, "You can't always get what you want. But if you try sometimes you might find you get what you need."

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It's getting real...

I looked at my phone messages on Monday night and was excited to find a call from the Mayo Clinic. Would they tell me that I had to wait for further deterioration before I could be evaluated for transplant? Or would they tell me to make the drive to Rochester to go through a battery of tests and meetings? It turned out to be the latter. Yay! They're going to evaluate me for transplant in April! Wait a minute. They're going to evaluate me for transplant... Crap. As they say in the movies (?), shit's getting real. I'm trying to stay positive, telling myself that this way I'll be able to get my name on the transplant list as soon as my eGFR hits 20. I'll be able to maximize my time on the list. But every so often, the positivity slips and the fear and anxiety appear. And the questions. All the questions... Will I be able to keep working? Will I be able to afford this? How will this affect my retirement? Will I be able to retire early? How will I pay...

Truth

The need is real! I don't know if it's because prior to Tolvaptan I routinely used mind over matter to delay my trips to the restroom, but I think I'm doing okay these days. Is it possible that I built up bladder muscles over the years? Don't get me wrong, the need to pee is omnipresent. But it's one of those things where I can make note of it, finish what I'm doing (or finish a couple more things) and then make my way to the facilities without the fear of letting things fly. But I'm not stupid. You'd better believe I'm making the restroom my last stop before starting my 45 to 60 minute commute to/from work. A soggy crotch is NOT becoming.

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.

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...

It's a family affair

Both of my brothers have ADPKD as well. The odds of a PKD parent having a child with PKD are one in two. The odds of having two with PKD are one in four, or 25%. Three? a 12.5% chance. We "beat the odds" (i.e. the PKD is strong in this line). Thankfully - for me - my PKD is less aggressive (although still not good). While I have a bit of a "PKD belly", it's not excessive. And instead of true pain, I only suffer from discomfort. Not so for my little brother. Despite being nine years younger, his kidneys are MUCH larger. You can actually see the outline of them on his belly. And instead of discomfort, he experiences true pain. So much so that he recently went in for surgery to have the size of some of his larger cysts reduced. The surgery is called Percutaneous (through the skin) Sclerotherapy and is an outpatient procedure. Larger cysts are identified through a CT scan or MRI, during which the doctor inserts a needle to aspirate (drain) and then s...

My Two Gallon Habit

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