I don't blog here anymore...

I'll let the title of this blog speak for itself.

I am in the midst of starting a new blog. A blog that reflects my new self.

I think Romans 6:1-4 sums it up and hits the nail on the head:

1: What shall we say, then? Shall we go on sinning so that grace may increase?
2: By no means! We died to sin; how can we live in it any longer?
3: Or don't you know that all of us who were baptized into Christ Jesus were baptized into his death?
4:We were therefore buried with him through baptism into death in order that, just as Christ was raised from the dead through the glory of the Father, we too may live a new life.

So if you happened to stumble across this blog of mine, stay tuned. I'll have a new one up soon.

How much does Dialysis cost?

Curious? How much does it cost to keep Rob alive?

Here's proof.

Rob's first full month of dialysis in February.



No, don't fetch your eyeglasses, don't reach for those Visine eyedrops. You read that right. 35,000 dollars. For one month's treatment.

When we first got that "bill" in the mail, I was shocked. I told Rob, "That has to be for more than just your dialysis. Maybe that includes your 5 day hospital stay at Duke in January?"

But no, I was sadly wrong. We ended up getting that one in the mail, separate from the dialysis "bills" - that 5 day stay was around 15K.

So here's the bill for dialysis during the month of March:



WOW-ee!

So a month of dialysis costs as much as Rob makes in a year. No wonder Medicare helps out, for people who don't have insurance. Thank God for our health insurance!

We can't wait to find out how much HOME dialysis will cost in comparison to the IN-CENTER dialysis (which the bills above are for). I'll have to post up when the bills come for that, if it's substantially more or less than 35K a month.

We can't wait for a transplant! And we hope one comes along soon.

We are now doing home dialysis 5 nights a week @ 30 liters of dialysate, instead of the old prescription of 6 nights a week @ 25 liters. This frees up another day/night so that we can feel more normal and less like a dialysis patient/caretaker.

Yay! Things are looking up for us! Now...to find Rob a new job that gives him weekends off, so that we can have more dialysis-free time together. And the ability to go on weekend trips together. Hmmm, someday...I hope.

A fun way to waste time on the internet...

when you're sore, tired, exhausted from riding a very challenging ride at Beaver Dam yesterday.

Check it out. This is our beagle Taylor.


moar funny pictures

I'm addicted now. Gonna go make some more!

I feel like a kid again

HOT! HOT! HOT! I think this is the 5th day in a row with 98+ degree temperatures, with heat indexes in the low 100's, ugh!

I bought one of those blow-up backyard pools from Target yesterday with intentions of using it to cool off/chill out in after a hot bike ride home from work or after completing some yard work. So I mowed half of the backyard (it's a pretty big yard, and it seems even bigger when it's 105 outside!) and then set up the pool. Even with an air compressor, it took about 10 minutes to inflate. I hate to think how long it would take with one of those crappy foot pumps the pools come with!

Here it is, all set up with fresh COLD water from the hose.



It was so cold that I had to inch into it like I was one of those water aerobics ladies at Campus Hills who always complain that the pool is "too cold" even when it's a steamy 84 degrees!

The pool is a nice 10 feet across. That means I can take one-half stroke and reach the other side. I tried to flip turn, but strangely my head hits the bottom. So then I tried an open turn, but my knees scraped the bottom and when I dropped my inside elbow, that too, scraped the bottom - reminding me of the pool we swim at in Greensboro every year!



I can't believe it! Only 528 laps in this pool and I've swum a mile!

I had so much fun swimming my half-stroke laps of freestyle in my new pool, that I decided to try a little backstroke.

Something's a little funky with my backstroke lately. Hummph? It felt like my catch wasn't deep enough or something? Or perhaps something is wrong with my kick? Maybe my swimming friends can check it out and offer suggestions.



Oh well, at least it doesn't hurt when I miss the flags and bump my head into the wall...

I'm so freakin' funny it hurts sometimes! :)

5 years ago today

We said "I do"!

5 years, wow, it's gone by pretty fast. I guess that's just the way it goes - the older we get, the faster time seems to fly by.

To celebrate our 5 year mark, I bought a really nice bottle of wine from Wine Authorities - a 2005 Ladera Cabernet Sauvignon.



I'd been meaning to check out Wine Authorities for a few months now. I drive past it everyday on my way home from work, on University Drive. I was really impressed with the wine selection and the 2 owners who were very friendly and knowledgeable. They had a free wine tasting while I was there, so I sampled 3 great wines. I bought one of them, a wine from Northern Spain that goes well with seafood - 2006 Espelt Saulo.

For dinner, I went to Whole Foods and bought (for the first time in my life) some Veal Rib Chops. GASP! I know there's some controversy about the humanity of raising veal, but....it was on sale, and I found a great recipe for it, so I figured, what the heck, I'm buying it. It's gotta be delicious. And it was. The recipe was called "Wood Grilled Veal Rib Chops With Wild Mushrooms"



Did I say the Ladera wine was excellent? No joke, the wine brought tears to my eyes when I first tasted it at the wine shop, and again, at the first sip at dinner! Here's a pic of our dinner just before we dug in and thoroughly enjoyed every bite.



So now we're watching one of our favorite movies - Sideways. Dialysis will be done in another 90 minutes, then bedtime!

Happy 3-day Memorial Weekend!

Triangle Kidney Walk Report

On Saturday, March 29, Rob and I did the Triangle Kidney Walk. In my last blog post, I wrote about how Rob's kidney disease had finally reached the "end stage" and that he is now on dialysis and waiting for a kidney transplant. On March 1, I finally sent out a mass email to all our friends, coworkers, and family members that said we were going to do the Kidney Walk and that we were raising money for it. We had an overwhelming response to the fundraising email! As of this blog entry, we raised $1243 for the National Kidney Foundation of North Carolina! Words cannot describe how we feel about everyone who donated to our fundraising effort!

We froze our butts off at the walk - it was a whopping 44 degrees, windy and looking like it was going to rain at 9:50. The walk began at 10:05 and a few minutes later, rain started to lightly fall. Rob ran to the car to get our umbrella, as did a bunch of other walkers. But many walkers weren't prepared for the rain. It took me about 10 minutes to "warm up" - my eyes kept watering and my nose was a faucet - but once I warmed up, the walk was much better. We were keeping a pretty fast pace as we had to keep passing slower people.

There were all kinds of people walking in the walk - young enough to be in a stroller, old enough to be retired, fit enough to be runners and/or other active looking people, un-fit enough to consider a 5K walk a substantial workout, and lots of four-legged furry friends (including 2 of the cutest GSP's I've ever seen)!

It was so cold, Rob put his kidney walk t-shirt on over his polartec jacket, then when he went back to the car to get the umbrella, on went another jacket on top of that. It just wasn't fair that the weather was so yucky. The day before the walk, which happened to be Rob's 37th birthday (more on that later), the temp reached 80 degrees. Then a little more than 18 hours later, the weather was a dreary 44. Ugh.

Here's a pic of Rob and I at the end of the walk.

Yes, I know, I look like a big time dork with my kidney walk hat on top of my beanie cap...but that should show you just how cold I was!

After the walk, we all gathered inside the RTP headquarters building where the Foundation's big whigs all got up to talk and thank everyone for coming out and raising money. We were hoping that we'd be recognized for our fundraising efforts because I was ranked in 5th place out of everyone for individual money raised. (See Triangle Kidney Walk home page)

Here's a pic of us standing with the Kidney mascot, who spent the whole walk dancing around to invisible music with hot 80's and 90's dance moves like the Roger Rabbit and the Cabbage Patch (oh those were the days, weren't they?)



I tracked down the director of the walk, Carina Montanari, to ask her about the "reward" we earned for fundraising more than $1000. Straight from the website, it says:

Apple Ipod Shuffle ($1,000.00 +)
Each individual that raises $1000 will receive a free Apple Ipod Shuffle, a Kidney Walk Baseball Cap, and Kidney Walk T-Shirt.

We found out that they will order the iPod rewards (for those who raised $2K or more, the reward is an iPod Nano) in a couple of weeks because they keep the fundraising tools open online for those last-minute donations that always seem to trickle in. So if you're reading this, and you meant to donate, you still have time!

I'm going to give the iPod to Rob when I get it. It will be an extra birthday gift for him. So Rob is 37 now, which puts him in the last year of his "mid 30's", as when he turns 38, he'll be pushing "late 30's"! Psssh, like I should tease...I'm the one who's sadly counting down the months, and eventually, days, until I turn the big 3-0. OH NOooooo! It's all downhill from there, right? ;)

I had to work like normal on Friday, Rob's b-day. It would've been nice to take the day off, but since I have a new nanny job (yes, newer than the one I wrote about 2 blog posts ago) I didn't feel right taking a day off so soon. So my new kids, Ben (will turn 3 in June) and Sophie (will turn 2 in October) and extremely adorable, fun, smart, and all that other cutesy-ness that I could describe, but I'll leave it at that, for your sake.

It's been an extremely trying work week for me as Super-Nanny, as Ben just started potty training and while he has had lots of successes (YAY! You went pee-pee in the toilet! You get a sticker and a high-five!), he's had just about as many accidents (it's okay, everyone has accidents when they're learning - said with a gigantic, warm, ooey-gooey "I love you anyway" smile on my face) So on Friday, I announced to Ben that when Sophie took her nap, that we were going to make cupcakes for Rob, and that he could help me decorate them and eat some. He was pretty excited.

The cupcakes came out awesome! The best I've ever made, I think.



We invited a few friends over to the house later that night for pizza, beer and cupcakes. It was a really fun night. For a present, I got Rob a nice pair of Wireless Headphones from Radio Shack!

With these headphones, he'll be able to watch movies at night after I've gone to bed (he sometimes stays up later than me) and keep the volume up loud enough for him to hear everything, without it waking me up.

Rob starts training for Home Dialysis on April 7, and it lasts 3 weeks. I have to be there for the 2nd week of training because I'll need to learn how to insert the needle and all that ucky bloody stuff that I don't like to look at. I'm sure you'll be reading blog posts about that when the time comes!

Thank you again to all of the wonderful people who donated to our Kidney Walk fundraiser! Have a great week!

1/4 plus 3/4...now you're caught up on my life

...I finally got to the hospital around 10pm. I checked in downstairs, took the elevator up to the 7th floor and then walked around the maze-like floors that led to Rob's room. I was so relieved to finally see Rob.

Here's how he ended up in the hospital: He was supposed to work that day from 1 to 10, but at 10:30am, he'd called his doctor with the same complaints as he had from calling on Friday morning, too. On Friday morning, he was throwing up and just not feeling like himself. Same thing Saturday morning. But this time, the doctor said he'd better come in, to check into the emergency room, just to be sure.

Most of you reading this will know that Rob has PKD, or Polycystic Kidney Disease. But if you didn't know that, it's a genetic disease that he inherited from his Dad's side of the genes that basically makes your kidneys stop working, and then you need dialysis and eventually a kidney transplant. Many of the Newton aunts, uncles and cousins have it. More PKD info.

Here are some images from his MRI scan done on January 26:



So in this picture, you can see how big Rob's kidneys are, and how many cysts he has. This is a transverse view from the bottom. The kidney on the left (his right kidney) is much bigger than the other. When I first saw this scan my first thought was that Rob looked like he had a fetal pig inside him! (hey, if you can't laugh at the rough stuff in life, it's just going to suck more) The other kidney is big, too, you just can't see it in this section cut. Imagine sliding up an inch or so toward his head. Here's an image of that:



What you're seeing here is the result of a burst cyst. That blob above the kidney on the left is fluid from the cyst. The fluid is just floating around in his peritoneal cavity (I think? I was so fascinated seeing these images that I missed a few things the doctor said!) The fluid eventually caused a condition called "ileus", which means that there was a temporary paralysis of his intestines. You can't eat anything when you have this, except ice chips, but then again, when you're in a lot of pain like Rob was, you don't want to eat, you just want to sleep all day because the pain meds are so numbing.

Rob's liver is also enlarged and has a couple of small cysts, too. I don't know why, but many PKD patients also have these effects on their livers? Maybe one of my doctor or nurse friends will know the answer. Here's a view of the largest section of his liver:



Now, here's a view of what a normal kidney, liver, spleen, intestines, should look like.



So you can see that Rob's kidneys are about 4-5 times larger than normal size ones. One doctor told Rob that his right kidney (the big one) is about as big as a football. Yeah, a football. They're supposed to be as big as your fist. Wow.

So to conclude, Rob stayed in the hospital from that Saturday morning until Thursday afternoon. Rob started dialysis while in the hospital, on Wed. Jan 30. He will remain on dialysis until he has a kidney transplant, which could be a few more years. We don't know what caused the burst cyst.

But life is very different now for Rob, and me, too. Rob gets up at 5:45am every Mon, Wed, and Fri, for dialysis, and he's not a morning person, so this is a big deal to him. He drives to the Davita clinic (about 8 miles away) and sits in a chair with a 15 gauge needle in his arm for about 3.5 hours. He usually has Monday and Wednesdays off from work, because dialysis is very tiring for most people. Luckily, Rob hasn't felt that extreme tiredness, and he uses those days off for projects around the house or working extra hours with Scott. The dialysis diet has been the biggest change for me. I am cooking more, and cooking healthier, less-processed foods. Rob is losing weight, and that's a good thing. We hope to be able to transition to the at-home-dialysis soon. That will definitely free up some time on Rob's schedule, and he won't have to be around all those annoying people at the Davita clinic!

Well that's all for now. I have a feeling I won't be writing much about swimming, cycling and other fun adventures. And I'm okay with that. More updates later. Be sure to check back soon!