Skip to main content

A drop isn't always a decline

As I prep for today's nephrology appointment, I thought this might be a good visual for people if they're just entering the world of PKD. 

This is my kidney function over the past year and a half and I've classified the data points into periods of stability and decline. 

 The key takeaway from this is that a single data point doesn't really carry much information - you have to look at the trend over time. And sometimes you have to wait a bit to see what that trend actually is.

 Did I freak out when I hit that period of decline late last summer (2nd decline period)? Without a doubt! But was the decline as bad as I initially thought? No (but it still sucked). And after the initial shock (and denial and grief) wore off, I was okay.

 And when my levels dropped to 23 at the beginning of this year, I'd been through enough to stop and ask myself what was going on. In this instance, I'd been put on a diuretic for five days to take care of some water retention. I should have stopped the meds as soon as I started seeing the effects (a couple days) but I didn't. So I dried out my kidneys, they weren't happy and it showed in my test results. Given time to recover from that, my levels went back to the Stage 3b/4 border.

 This disease sucks. But don't let a single test results ruin you day - or month - or quarter. Wait for the trends to appear.
Labels:

Comments

  1. pkdGirlApril 26, 2019 at 1:26 PM

    Oops! Talked with my doctor and said that the first TWO periods should be considered stable. So the periods in the chart should be stable-stable-decline-stable. Live and learn. :-)

    ReplyDelete

Post a Comment

Most Read

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...
Post a Comment
Read more

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...
Post a Comment
Read more

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.
Post a Comment
Read more

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.
Post a Comment
Read more

Not quite two gallons a day

All I know is that one person lives at my residence (ME!) and I have seven empty five gallon water bottles that are ready to be recycled. So 35 gallons OF WATER over the first 24 days consumed AT MY HOUSE. And that doesn't include all the water and nugget ice consumed at work... or the clear sodas... Actually now that I think about it, I MAY have hit the two gallon a day mark. #feelinggood #hydrated
Post a Comment
Read more