With great (micturition) power comes great responsibility...

Today's $82 word is micturition.

Now there's a word you don't hear often. You might even be wondering what it means. Sure, you could google search it. Or you could just keep reading until I define it for you!

Instead of using the term micturition, you could also call it "voiding". I'll use it in a sentence, one that doctors and nurses have asked Rob before: "How much do you void on a daily basis?" Rob's answer to that question is ZERO. Or, at least it was the answer during the time period when Rob didn't have any kidneys in his body.

Another medical term you could use instead of micturition would be "emiction", although to be fair, I should admit that I've never heard any doctor refer to it as that. I found that term in a medical dictionary online.

Okay, okay, enough with the medical terms! A more common term for today's $82 word is "go pee". Now that Rob has a new kidney in his body, he is able to produce and pass urine. Yay!

Most of you reading this probably take your ability to pee for granted. You probably go numerous times a day and never really sit back and think about where it comes from and why our bodies produce it. But for the people reading this who are in some way affected by kidney disease, you might think about it differently.

Since Rob's giant polycystic kidneys were removed from his body on June 17, 2009, he has not gone pee. All fluids that he took in were just stored in his cells, and then taken off during dialysis treatments. It was not a great time for Rob. The more he drank, the more he had to take off at treatment. And the more you take off, the worse you feel afterward. But not everyone with PKD chooses to remove their kidneys. Some keep them in, despite the pain that comes with having massive football-sized organs squishing every other organ in your abdomen. They keep them in because they still filter out the fluid you drink (just not the waste products). But Rob chose to have his removed, and the ultimate consequence of that was the inability to pee. But he was able to tie his shoes without holding his breath. And he was able to freely play with our dogs without fear of the dog jumping up and bursting a cyst (which leads to a hospital stay sometimes). And he didn't have that awful, aching back pain everyday.

So, the biggest "new life" thing that Rob and I are getting used to is pee-pee. We talk about pee-pee so much around here that you might think we are in the early stages of potty training a toddler! Within a couple hours of the transplant surgery, Rob's kidney started making urine. When I was able to go back into the PACU and see Rob, one of the first things he said to me was, "I'm making pee!" When I looked at the side of his bed and saw the tubes leading out to a bag that was filled with reddish-yellow fluid, I was ecstatic! (It was a little red for about a day or so, but nothing to worry about, it was normal to have a little blood in it)

For the first 5 days of Rob's new kidney, the doctors were perfusing it. There's another $82 word. All it means is that they were loading him up with lots of fluids so as to "jump start" his kidney to work properly. With all the fluid added to his body, he gained quite a bit of weight during his stay. On average, Rob was peeing out about 100mL of fluid every 2 hours. Now that we are home and Rob's new kidney is 8 days old, he is producing much more pee than that. We know this because we have to chart his fluid output every day and record it on a data table that the transplant coordinators gave us. In addition to measuring and recording the amount of pee he makes, we are also measuring these things:

Blood pressure, 1x in the morning and 1x in the evening
Temperature once a day
Blood sugar level before breakfast, lunch, dinner and before bedtime
Fluid input (how much he drinks)



Today's blog title comes from the Spiderman movie, and I chose it specifically because charting all this stuff is like a part-time job! All the new medicines he takes now have to be taken at a certain time, which means that our alarm clock goes off at 8am and we're up at 'em at that time, regardless of what time we went to bed the night before. Rob is nowhere near being a morning person, and if he didn't have to wake up at 8, I assure you, he would still be asleep at 10:30am! Also, Rob prefers to drink his fluid in numerous little trips to the fridge, usually drinking out of the carton for things like juice, milk and 2-liters of soda, and pouring little glasses of water in immeasurable plastic cups. He can't do that anymore, so all fluids are put in a Nalgene bottle or otherwise measured with measuring cups and frequent google searches like "4 ounces equals how many mL?" Hence, with Rob's new great power, comes great responsibility!

Here is a picture of our data since last Friday.



The biggest thing we are having to get used to is monitoring the amount of sugar Rob takes in. Rob is NOT diabetic but a side effect of one of the anti-rejection drugs he's on is an increased blood sugar. One of the big changes related to that is that Rob has to get used to diet soda! Rob loves Coke, Mountain Dew, Sprite, you name it - if it has sugar and is carbonated, Rob will drink it! We made a decision a while back that we would limit the amount of soda in our house. The reason being, of course, that soda is junk and we really shouldn't be drinking it. Water is so much better for us! But there are times where you are at the movie theater, or eating lunch at the food court in the mall, and you just want/crave a soda. If Rob chooses to drink a sugary Coke, his blood sugar would spike and that would not be good. So it's diet Coke for us now!

Here's a picture of Rob checking his blood sugar a couple of nights ago:



One night, his blood sugar spiked pretty high - a 216. Yikes. We quickly found the sheet that the transplant coordinators had given us about following a diabetic diet. Anything above a 200 is bad. It is considered hyperglycemia. We figured out that the high number likely came from a bagel he ate a few hours before. Rob's boss had come by the house to visit with Rob and he brought a bag of bagels and cream cheese from Bruegger's Bagels. Mmmmm, bagels. So now Rob is only going to eat 1/2 of a bagel from now on, and if he does, he'll go for a short walk right away to help metabolize it. We hope to not have to administer insulin (although the doc already has written an Rx for it and it's on file at the pharmacy), so we're trying to stick to the diabetic diet.

Like I said, lots of responsibility!

As for how Rob is feeling 8 days post surgery, I'd have to say "good". He is still very tired, and occasionally has pain near his incision site, but nothing major. He commonly complains about feeling bloated, but it seems to be getting better and is highly dependent on how much food he eats at each meal. We are trying to get some exercise every day because it's good for him (and for me!) Yesterday's exercise was a bit more than he could probably handle, and that's why he's so tired today. We walked for 1 hour with a friend and his dog, and poor Rob, he's on his second nap of the day! He's happily snoring right now, but I will have to wake him soon so that we can eat dinner.