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!

Three-Quarter Catch-Up....no, not the drill

Wow, 6 weeks since my last blog post. Let me catch you up on things since Jan 1.

Jan 3: Started my new 40-hour a week job as a live-out nanny for a little girl who is 13/14 months old. (13 when I started, 14 now...huge difference, for those of you who may be reading this that are inexperienced with children and how they develop). Her name is Ella and she is a real doll, smart, not fussy, fun to play with and watch her learn. The mom, Teresa, works from home, in her office, door shut most of the day. The dad, Jason, works for the railroad as either a conductor or an engineer, I don't know exactly. I can use the mom's car to drive Ella around town to run errands or visit a playground, which is very nice. They live in Wake Forest and my 17.5 mile commute to work takes 22 minutes on a good day, 30 minutes if I get stuck behind a slow grading truck or school bus (grrr!) The pay is exactly what I need, and I can sometimes get overtime, which I can elect to either be paid for, or I can save it up and use it as vacation/sick time pay. Yay, I'm happy!

From Jan 3 through Jan 31: Worked anywhere from 60-70 hours a week because I was still "head coach" of DAMA. That's an easy 20 hours a week there (I mean, what I get paid for). Plus my 40 with Ella. And I worked overtime with Ella for about 2 of those weeks, since Teresa had a big work project to complete and she needed me anywhere from an extra half hour to an extra 4 hours. During this time, my house was a complete mess, but I made myself not care about it, knowing that once the month was all over, I'd be able to play catch up.

The extra money was nice. I was able to take a weekend trip with DAMA friends Kim and Jason to Asheville. They had a free pass for me to go to the Biltmore house, which I couldn't pass up, since I'd never been and I've wanted to since we moved to NC. Rob couldn't go with us, since he works pretty much every weekend from now until eternity. We left on Jan 19, around 9am. Started Biltmore tour around 2pm, after we had lunch at some nice cafe on the grounds near the winery, which was surprisingly not too expensive. Jason was my tour guide, as he's been to the house like 9 times before, since he grew up in Lenoir, which is less than an hour east of Asheville. It was amazing! You can't take pictures inside the house. But we got a good one of Kim and I goofing off around this lion statue right out front of the house:



After we finished touring, we found a cheap hotel room near the asheville mall. A couple hours later, we're eating dinner at the Chili's across the street, and we had quite possibly, the worst waiter (or was it Waitress?) on the face of the planet. Oh well, I still tipped "the minimum" (10%), since I have experience here as a server at restaurants in NC. They don't get minimum wage, they make something like $2.50 an hour. So that means, if you don't tip, you're treating them like they're less than a human being, that they're not worthy of at least making minimum wage. And I just can't do that to someone, no matter how bad the service is.

The next morning, we ate our free buffet breakfast, where I enjoyed a waffle, 2 sausages and a few sips of some really gross coffee. Then we drove up north a bit to the town of Mars Hill, where we went to the Wolf Ridge ski resort. I opted to snowboard, while Kim and Jason skied. Now mind you, the last time I went snowboarding was January 1 in the year of 2002. And that was the day I broke my ankle. That was at the Heavenly resort in Tahoe, with Rob. So I've been a bit leery of trying it again. I stuck to the 2 bunny slopes all day. I fell a lot, but nothing too bad. For the first half of the day, I could only snowboard on my toe-side because every time I tried to go heel-side, I'd fall right away. I was getting really pissed about that, but it eventually worked itself out and I could carve a semi-straight path down the bunny slope by switching toe-to-heel and heel-to-toe. I did have a ton of fun though, despite the falling down, and not having the nerve yet to go up on the big ski lift and try to "intermediate" run. Oh well, next time. I did catch a little bit of air off the tiny jump someone made at the bottom of the bunny slope - it was no higher than 9 inches maybe, but it sure was fun. Here I am halfway down the bunny slope:



Jan. 26: I went to the Charlotte Sunbelt Championship meet with a handful of DAMA swimmers - Derek, Marshall, Josh, Dave, Joe, Heidi and Karen. I didn't swim, since I had caught the worst cold after coming home from my Asheville weekend, and I was still on antibiotics. It was fun to go just as a coach instead of a coach/swimmer like I normally do. I left at the crack o'dawn with Heidi because she swam the distance events in the morning. All the others came later, when the afternoon events started. Here's a great pic of Heidi after she finished the 1650:



She swam her event so great. Neg split 5:53, 5:52, 5:51 - wow! Talk about a perfect swim! Then came the 1000, which she swam studly, too. I can't remember those splits. Then everyone else checked in, warmed up and swam great, too. I took some videos of everyone swimming, I'll have to put those up on YouTube later. Derek had a great swim in his 50 Free - he finally broke out of the 25's, so he was happy about that. Marshall's swims were good, all near his best times. And Josh, Joe and Dave all swam well.

Here's 2 more pics - the mens' relay and the mixed relay. Check out the buff-ness:





I was planning on having dinner with everyone and then heading home to Durham, but I finally got a hold of Rob, who had checked himself into the hospital around noon that day. When I first spoke to him, he said, don't worry, don't come home yet, I'm fine...etc. The second time I spoke to him, he said, yeah, I'm staying overnight - so I left as quickly as possible and safely sped as fast as I could to Duke. To be continued on the next blog post...

New Year's Day mountain bike ride

It's been a long time since I went mountain biking. The few rides I have been doing occasionally have been in the Duke Forest or the American Tobacco Trail - pretty easy stuff. All the local trails were wet and therefore closed, and we didn't feel like riding the Umstead fire roads, so we decided to ride the Chapel Hill trails, which never officially close.

Marshall came over to our house and we drove to Chapel Hill in our truck. We still need to get a third bike mount for our truck bed, but with 2 bungee cords, we got Marshall's bike in just fine.

Both Marshall and Rob rode their singlespeeds. It was Rob's first "real" ride on his new build. Marshall built up his SS a while ago, maybe earlier this year? Anyway, here's a pic of the guys with their singlespeed smiles:



We skipped the first trail that starts just over the RR tracks from Seawell school because that trail is usually horribly muddy for a while after rains. So we rode over by that church/daycare entrance and picked up the Beaver Twister trail. Rode all of that in the normal order, passing only 1 other mountain biker the whole time.

On that first steep, rooty, tech climb where you drop in a little creek, climb up that super root-laden, twisty trail for about 20 seconds, then it levels off...get this: I MADE IT! I usually only successfully make that climb when I'm in shape from riding often, which I am so obviously not in right now! I guess I got lucky. But it sure did feel good to make it to the top, and to turn around and see the guys walking their bikes up it!

Most of the trail was in good shape, despite the rains we got a couple days ago. Chapel Hill drains pretty good. I slid out on one log crossing, and also on that 2nd steep climb that's less rooty than the 1st - I made it up until that dang-blasted root near the top made my rear wheel spin out.

We stopped a lot, keeping a pace that was for the most part, slow enough for us to be able to carry a conversation the whole time. Once we were done with all of Beaver Twister, we could've continued on and done that one trail that's super fun, the one that's a slight downhill the whole way...but we were tired and hungry, and as Marshall put it, we wanted a beer and to catch up on the football scores. (well, I don't care about the football scores, but I'll go along for the company - I feign interest pretty well)

Here's a pic of us 3 in the parking lot after the ride.



We tried going to Carolina Brewery for dinner, beer and football, but it was closed. A quick 411 call to track down Tyler's Taproom/Speakeasy and hooray, it was open! But only the Speakeasy side was open, so the menu was limited. Chicken nachos was my dinner (I know, not exactly healthy), but I'll start my healthful New Year-New Me eating/excising routine on Thursday, the 3rd - the day I start my new job. I find it easier to start a new habit during a new job. 2.5 years ago when I was starting my DAMA coaching job, I made flossing my teeth a new habit. I used to hardly ever floss and every time I went to see the dentist, they'd yell at me, and I knew I needed to, I just never made myself do it. So my new "habit" will be eating healthier (more green stuff, a few less carbs, more water, less eating outside of the house) and exercising before and/or after work (swimming, or riding, or working out at the gym we're going to join soon)

Wow, I really went off on a tangent...I'll stop now and write more later about my New Year's goals/resolutions/new job, etc.

But it was a good ride and a good way to start the year. Wow, 2008 already. In 10 months, I'll be turning the big THREE-OH! Yikes.

Christmas Recap

Christmas was really nice this year. I was off work from Dec 24-26, while Rob was unfortunately only off on Christmas Day. I don't like the retail hours, but Rob is happy with his job and it pays the mortgage...so I guess I shouldn't complain.

My favorite part of Christmas is the shopping I get to do for other people. It's so fun to waste away half a day, or even a whole day if my work schedule allowed it, shopping. I shopped for gifts for our nieces Payton and Lauren, gifts for Marshall and Karen, my parents and Rob's mom, and Rob.

We made plans for Marshall and Karen to come over to our house for Christmas. Karen was home in NJ, and flew back into RDU in the early afternoon. Marshall and puppy Dumplin' came over around 2, followed by Karen an hour later. We watched "Superbad" on our new high-def LCD TV - which we love...what a step up from our old TV which my Mom bought for me at the Goodwill while I was a senior in college. Here's the new TV.



After the movie, Rob fired up the grill for these awesome steaks I'd bought at Whole Foods. I got 2 strip steaks and 2 ribeyes, and I made an awesome marinade that the steaks sat in for about 20 hours before cooking. I made some mashed potatoes and steamed some fresh green beans. Pretty easy cooking. But delicious.

Then we played Outburst for a bit, before they left to go home. It was a really nice Christmas.

Rob had to work the opening shift at work the next morning and he had to process a bunch of returns and exchanges, and a lot of people were using their Perf gift cards.

I loved the gifts Rob got me - especially my new purse. Check it out, it matches my laptop bag. I love my new Chrome purse!


The big gift I got Rob was a really nice pair of leather UGG clogs - Rob's been asking for clogs for a long time. He can't wear flip flops outside, at least in the winter, when he just needs to run outside for a quick thing like checking the mail or running to Food Lion for some milk. I had to special order them through Nordstrom - this guy who swims on DAMA, he works in the mens shoe dept there and he hooked me up.

Anyway, it was a really nice Christmas. Next blog: New Year's Eve Eve party Recap.

Now, I'm heading out to go mountain bike with Rob and Marshall. Hopefully I'll get a pic or two, or a video of something cool.