Welcome to Rob and Danielle's Blog!

Rob has PKD and started dialysis in January 2008. He is waiting for a kidney transplant. He currently undergoes nocturnal in-center hemodialysis 3 nights/week. Rob and Danielle are both Christians who strive to live a life of obedience to God's commands. We are praying that the transplant comes from a living donor.

Wednesday, January 13, 2010

Scrabble fans! Now you can play and eat at the same time!

Last Saturday, I visited with a friend of mine in Raleigh. She offered me a snack of some Cheez-Its and I declined at first because Cheez-Its are just not my cup of tea. I'd rather eat some Cheetos if I'm craving some orange-colored salty snack! Well, I changed my mind to the idea of Cheez-Its because I saw that they were a special edition kind - the Scrabble Junior edition!

So we all started picking through the bag and found the letters that made up our names. Then I discovered that the back of the box had a fun little "board" for playing an actual game of Scrabble. I made this for fun:

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I didn't even get a Triple Letter tile for my "K" in kidney! Man, the real Scrabble board for adults gives you Triple points for that spot!

Really though...if you're reading this and you have 2 healthy kidneys, would you consider the possibility of donating one of them to Rob? Please?

Saturday, January 2, 2010

Cute dog...but man, that's a gnarly scar dude!

I took this video 10 days after Rob's double nephrectomy surgery this past summer. We were on Ocracoke Island, just chilling out by the beach for a couple hours. I got in the water for a bit, but Rob didn't, of course...as you'll see by the scar. The scar has healed up very nicely since then.

Attempted mountain bike ride in Virginia

Rob had Monday, Dec. 28 off from work, as did I. The weather was pretty, although bitterly cold, but we decided to get off our lazy bums and go for a mountain bike ride. We chose to go to Occoneechee State Park in Clarksville, VA. I'd been there once before, back in August. They have a nice 7.5 mile multi-use trail called the Panhandle Trail.

On the 55 mile drive there, we played our new favorite road trip game "Counting Baptist Churches". Last time we played it, we drove to the Outer Banks (300 mile round trip), and the total we counted was 24. This trip to Virginia was much shorter, but was driven on more country backroads, which is home to more little country churches. Rob fell asleep through half of the drive, but I motored on, as country drives are one of my favorite pastimes!

Me driving on US Highway 15 North, and probably singing along loudly to whatever song was on the iPod:

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Once we arrived at the trailhead, we got dressed in our cycling gear. We brought many layers of technical cycling clothing, but I forgot one essential piece - my ear warmers! It was about 39 degrees that day, and windy, too! (gusts up to 20 mph) So I had to wear my helmet with my hair over my ears, which looks totally stupid, ask any cycling enthusiast and they'll tell you it's true!

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Rob offered to let me wear his skull cap, but I retorted, "NO, you need it! Your bald head would freeze! At least I have hair on top of my head..." to which Rob smiled and said, "Hey now..." What a nice wife I am! I mean, what a loving husband Rob is!

Here we are about 1 mile into our ride. Not even warmed up yet, but stopping to take a picture anyway...

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We look cold, don't we?

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Because of the big snow storm that had come through this part of Virginia a week before Christmas, there were lots of downed trees and brush in the trail. Like this one, which with my awesome MAD SKILLS on the bike, I tried to bunny-hop over...unsuccessfully, I might add!

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Of course I'm joking, I didn't try to really bunny-hop over that!

Rob and I rode really slow because 1.) we are really out of aerobic shape, 2.) Rob is a dialysis patient and he doesn't expect to be anywhere near as fast as he used to be, and 3.) Rob's low blood pressure and dizzy spells force us to go slow and take it easy. All of Rob's doctors and nurses say they want him to exercise, because it's really good for his heart. Most dialysis patients do little to no exercise, rightfully so because of all the side effects dialysis has. But if a dialysis patient has any sliver of energy, they are encouraged to use that energy aerobically.

So we tried. Slow, cold mountain bike ride on easy fire roads. It wasn't that great of a ride because Rob kept getting dizzy spells. At least he found a cozy bench to lay on for a while:

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This ended up being our turn around point. No worries, we made it back to the truck safely, thank God.

It was the last week of deer hunting season in Virginia, and we were riding on the side of the trail that was OPEN to hunting. Probably a dumb idea, as we don't have any cycling gear that is blaze orange. At the end of our ride, we came across 2 hunters who said, "You should be glad we didn't think you were a deer! Where's your orange?"

Hmmm, I guess we'll have to invest in a 2 blaze orange vests to wear next winter when we ride during hunting season!

Here is Rob smiling at the end of our ride, only because we know we were going to sit in the warmth of our idling truck with the heater turned on full-blast!

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Here's a video of Rob giving a ride report:



After warming up in the car and eating our lunch (PBJ on homemade bread, pineapple and frosted animal cookies!), we drove home the long way. East on US Highway 58 took us through the small town of Boydton, VA, where we ooh'ed and aah'ed at the beautiful historic homes, drove through the quaint historic downtown, and then decided to stop to look around at a cool antique shop.

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They had maybe a thousand oil lamps, big and small, and a couple hundred cookie jars. It was fun to look around and make small talk with the owner and his dog, cutely named "Boo-Boo". After that, we drove home on Highway 1, through small towns like Norlina, which is now officially my favorite town name to say, because it's impossible to say Norlina without sounding like a true southerner! Mind you, we were still playing our car game - Counting Baptist Churches, so we were really keeping our eyes peeled for churches along the road.

We stopped in Kittrell, NC to grab a hot cocoa and to stretch our legs. It became harder and harder to spot the baptist churches as the night sky became darker. So we may have missed a few, but by the end of our drive, we'd counted 28!

It was a great way to spend the afternoon doing something fun and productive!

Christmas 2009 recap

On December 18, Rob went into the ER at Duke for a weird episode he had while at work. He complained of a sort of mental confusion with his speech and auditory processing. When he texted me at work to let me know that he was headed for the ER, my heart dropped into my stomach and I was very worried. I prayed almost the whole drive over to the hospital (I'm so thankful I work so close to Duke). Cast all your anxieties on Him because He cares for you - 1 Peter 5:7 I was crying, too, and anyone who knows me will know and understand that if I'm crying, I'm pretty worried or sad. Thankfully my tears dried up by the time I reached the parking garage. Rob is pretty emotional for a man (I like it!) and if he sees me crying or looking worried, it adds to his emotions and I can't do that.

It was 5pm when Rob was all checked in at the ER. Mainly, it was just lots of back and forth testing and waiting, testing and getting a room, watching dumb shows on the TV, and dozing off in between visits from nurses, ER docs and neurologists. Thankfully, we had 3 great friends who came to the ER to pray, eat and visit with us for a while - Pastor Martie, Heather and Leslie. I ate my Duke Hospital staple: Eel sushi rolls and chocolate/butterscotch pudding. I'm not joking, this is what I eat for dinner every time Rob is in the hospital!

I should note that this night at the ER was supposed to be my second-to-last night working at the Gap. I'd put in notice to my boss earlier in the week that I just had too much on my plate, and I don't know why I agreed to work a PT job in addition to my regular duties. Never again will I try to work more than 45 hours per week. It just doesn't work for me. And if you throw in stress about Rob's health and trips to the ER...you get the picture.

After all the tests were done at the ER, the neurologist concluded that Rob did not have a TIA, or mini-stroke, as they're commonly called. Whew. Big relief. But the docs are concerned about Rob's perpetual low blood pressure. It's been so low lately that he keeps getting dizzy spells at work, around the house, and a few times, he's had to be physically supported by someone (me, or co-workers/customers at work) because his legs will give out while he's working out his dizzy spell. So now we are on a quest to find out why his BP is so low, what he can do to fix it, and how to handle it in the present.

1 week after this ER visit, we celebrated Christmas, which was beautifully quiet and nice. We had a yummy special breakfast that Rob cooked. He made his favorite breakfast recipe, courtesy of his Mom: Eggs Goldenrod. We added bacon to it this time for extra crunch!

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After breakfast, we went to First United Antioch Baptist Church, located in one of the poorer neighborhoods of Durham (1.4 miles west of our house). They were giving a free hot meal to anyone who wanted/needed it. This is not a homeless shelter, just a neighborhood church who decided to serve the poor and needy on the day we celebrate the birth of our Savior. I'd spoken to the reverend earlier in the week and asked if we could help at all. He said he'd be delighted to have us help, as they were in desperate need of more volunteers. When we got there, we were told they had more than enough volunteers, so if we wanted, we could just sit with the people and talk to them as they ate. So that's what we did. In addition to that, I read a few books to a handful of children who attended the dinner with their families.

Here's a pic of me reading to a 3 year old boy named TJ. He listened to me for about 4 minutes, but then picked up the "Story of Jesus" book and started "reading" it to me!

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After the church meal, we went home to open our gifts. I love giving gifts, and this year's big gift for Rob was so exciting it was hard for me to hold it in until Christmas Day! I wrapped his "big" gift in wrapping paper that said Santa was Here. And instead of writing "To: Rob, Love: Danielle", I wrote, "To: Rob, From: God". Kind of cute, but oh so true. Because God is the provider and source of all things, even Christmas gifts. In the pic I took of Rob just moments before he opened his gift, I find it sort of funny that the "R" and "E" was not visible (so it reads "Santa was He"). It didn't dawn on me until this year, that the idea of telling your children that Santa Claus is the one who brings them presents on Christmas Day is really, really dumb. I won't go into all of why I think that, I'll save that for another blog.

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Here's the video I took of Rob opening his big gift. Now that I'm writing this, I remembered that I let him open this gift on Christmas Eve. Sorry it's so dark.



He was so excited about his gift! I love giving good gifts! I can't wait until we have children...it will be so exciting to watch them open their gifts on Christmas (and they won't think that a jolly man wearing a red suit brought them to the house all the way from the North Pole)

Overall, we had a great Christmas and we received and gave many cool gifts. I got some hand-knit socks from Rob's Mom:

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and Rob got a cozy hand-knit beanie from his Mom:

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and lots of good books to read, for us:

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and for the children we'll have in the future:

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My bosses gave me Thursday, Friday and Monday off from work this year. It was such a nice 5 day weekend. Praise and glory go to God for providing us with such a beautiful Christmas experience.

Sunday, December 27, 2009

The man who knows no strangers.

A few weeks back, I had an interesting conversation with a man who came into the shop where I work. I didn't think anything of it at the time, I was cordial to him, like I would be to any customer. He was buying shoes and pedals for his son. As we talked, I spoke of a new pair of shoes I had just purchased for my wife. I was excited for my wife because she needed a new pair of shoes so badly. The shoes we replaced were a $240 pair of Italian Cycling shoes that had grown too small. Her feet have continued to grow into adulthood, they aren't monstrous and manly by any stretch, they are still beautiful and feminine, just a little longer than most women.

This man and I spoke of racing and I mentioned Danielle's accolades and the fact that I was semi-retired from racing myself. You could say I was fishing for my customer to pry as to why I am semi-retired, which he did. I told him I was waiting for a kidney transplant and that I currently do not have any kidneys. (I find it amazing that God made us able to live without vital organs, so I like to share about it.) He and I spoke in more detail about my health issues and he went on his way.

A week or two went by when my Pastor called me and asked if I knew a particular man. He gave me his name and it sounded familiar. I looked him up in our database to verify and told my pastor that the man he asked about and my customer were one in the same. It turned out, he was the editor for a Baptist Newspaper and had written about our interaction, but in vague terms to keep me anonymous. (I would guess.) My Pastor had assumed it was me, how many people without kidneys work in a bike shop anywhere, much less North Carolina?

I thought it was neat that someone would be interested enough in my story to write about our interaction. My Pastor sent a copy of the story to me and I left it at that.

A few days later, my new friend came into the shop with some interesting news. A Reverend from a small church near Wilmington, NC had called the newspaper office and offered to donate a kidney to me, provided we were a match. I responded in a similar manner that I have whenever I have had someone offered in the past, sheer gratitude, near tears, and do what I can to stay standing. I knew it was a long shot, but I felt very blessed. Here was a man who I have never met, offering a kidney to help me live a better, more fulfilling life. My new friend passed along this man's information and left his contact info so he could keep tabs on the story.

I called the Reverend a few days later. We were unsure of his blood type at first. I need type O blood, positive or negative and preferably up to 6 genetic markers. I have had some friends match with upwards of 4 genetic markers, but for one reason or another, it wasn't in God's plan for us to match up. Because of previous disappointment, I did not put a lot of hope in this working out. While I was still grateful, he turned out to have B+ blood.

He said he would bring it to his congregation, if it is to be, then God will make it so. All the while, I plan on keeping faithful to God and if a kidney is in God's plan for me, I will praise him, and I will continue to praise him even if it is not.

Banana Split for dinner

So, the other night, Danielle asked me if I wanted dinner. I said OK, and she whipped off into the kitchen. I heard a flurry of activity, plates clicking against silverware, a cutting board, a spoon in a jar, and then a poof, from what sounded like it came from a can of whipped cream.

Then, I was presented with a beautifully constructed banana split. I devoured it all the while considering why we were eating banana splits for dinner. Danielle had been playing with Play-Doh "Ice Cream Shop" at work and after making a banana and a cherry, she developed a craving for a homemade banana split! Oh well, it was yummy, as you can see.

ice cream craving

Thursday, December 10, 2009

Not that I needed a reminder, but God is AMAZING!

8 days ago, Rob and I received a really cool link in our inbox:

Click here for an article written about Rob

After reading the 2nd sentence of the article, I blushed a little and felt a little embarrassed. Why? Well, I'm not an Expert class racer anymore. I'm far, far, far away from truthfully being labeled an expert in cross country for USA Cycling. In fact, I've even forgotten my old race registration number, so even if I wanted (and I don't, let me be clear on that) to go back in the USA Cycling archives to momentarily puff myself up with how good of a racer I used to be, I can't. The extra 30 pounds I carry around all day is a good reminder of how far I've come since emerging from the darkness of my past - a life lived only for myself, for self-glorification, for others to pat me on the back and to overhear people saying nice things about me. I don't care about those things anymore.

Well, what do I care about now? Whew, that's a huge question, and I'd love to tell you readers, all 5 of them (ha ha ha!), all the specifics and tiny details about the love in my heart that changed my life, but...that'd be getting way off topic here for this post, so I'll leave you hanging for now about that....

Back to the article about Rob. You'll see that the author of the article writes about his encounter with Rob at work (Performance Bike in Cary, NC). After we read the article, Rob immediately recalled the man who wrote it, and said, "I meet lots of customers all day, and some, through the course of our conversation, do find out that I have no kidneys and I'm waiting on a transplant. But I never thought I'd deal with a customer who would then turn around and write an article about me, especially one that points to God as being the true 'Transplant Coordinator'".

The article left me still feeling a little embarrassed about the $300 shoe part...but, to be fair, I should note that the shoes didn't cost us $300, that's the retail cost. We get the cheap "pro deal" which is one of the perks of working in the bicycle industry.

Enough about Expert class, fancy shoes and me being embarrassed. What did the article accomplish for me? Easy answer here: It led me in a new direction towards my prayers for Rob's kidneys. I know prayers are a personal thing, and perhaps I shouldn't be saying this, but I'm going to be honest with you all. My prayer life still falls way short of what it should be and what I want it to be. Sometimes I wait until bedtime to pray and in the middle of praying, I fall asleep, not able to finish it. And other times, I pray silently to myself in the daytime, and then I lose focus (hello ADD?) and start pondering about something rather dumb and boring. Of course, I do have periods of time where my prayer life is feeling super groovy and deeply connected to God, but perhaps this wishy-washiness (wow, that's a real word!) is just something that all newer Christians go through?

As I continue to grow in my faith, so will my prayer life. God wants us to pray, to be in daily conversation with Him, and I admit, I struggle in this area. I typically pray the same kind of prayer every time I pray - a prayer of thanksgiving, thanking Him for my salvation, our jobs, the roof over our heads and the food in our fridge. Then I pray for a family member or a friend who specifically needs my prayer. I tend to finish up each prayer by asking for strength to persevere through the tough spots in the life we live in this world, and to help me live in a way that brings glory and honor to God. You would think that I would be praying specifically for a successful kidney transplant every chance I get, right? Not exactly...I don't know why, but I'd guess that Rob's kidneys (or lack thereof) make it into my prayers about 25% of the time. I know, crazy, huh?

Of course I've read Matthew 7:7 - 8:

"Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened.

Most people interpret this to mean that we can pray for the specific things we want, and because God is our Father and He loves us, He will respond by answering our prayer. It just feels weird because I know that everything I have is a direct gift from God. Therefore, I shall not want anything, because wanting things usually goes hand-in-hand with selfishness and vanity. I should be (and I am) content with my current possessions. To give you an example, I am content with my iPod, it works well holding about 750 songs when fully loaded. But my iTunes library is currently at 1500 songs, which means I have to manually select which songs/artists/playlists to sync to my iPod, which can be a pain in the tushie sometimes. Of course I've thought, "Gee, wouldn't it be nice to have a newer, more colorful, 16 Gig, video-capable iPod that automatically shuffles your songs when you literally shake it? Sure would, but we can't afford it." So, of course I'm not going to pray to God and ask Him to give us a fancy new iPod! But I think you're understanding where I'm going with this.

While there's pretty much no comparison between a new iPod and a new kidney, I still feel like they are sort of equal when it comes to prayer. So when I pray for Rob's health, I ask something along the lines of "God, please encourage Rob today, to stay strong in his faith, despite his current health and his dependency on dialysis to stay alive. Please help him watch his fluid intake and guard his heart from the strain of water weight gain between treatments. And please God, I know you know, in your master plan, you've got it all worked out, you know who and where Rob's new kidney is going to come from, and Lord, I know I cannot expedite the date of Rob's transplant, but God, please help strengthen us both, as we wait for this transplant, however long it takes, but...please let us find ways to continue to give you the glory for the journey that Polycystic Kidney Disease has taken us on."

I feel like there's no point in just praying something that gets right to the point, like "God, Rob needs a kidney, please give him one. Thanks. Amen." That sounds like something a 6 year old would pray. Even though Matt 7:7-8 is pretty clear, it's not like we're going to open our front door one morning to see a wicker basket containing a healthy, pink kidney and a note that says, "Love, God." While that sounds like a slightly funny, slightly possible Scrubs episode plot, we know it won't happen that way. God puts people together and makes circumstances happen for a reason. I guess I'd rather pray for the current situation than to pray for what we hope for in the future, because I know I can't change the future. God is in control. God makes things happen.

So the article made me think about the family of the person who will eventually donate a kidney to Rob. Rob will either receive a kidney from someone recently deceased, or he'll have a kidney donated by a living donor. So it made me think, if Rob gets a deceased donor kidney, that person who just died, will most likely have family and friends and co-workers and neighbors who all knew that person and who will be grieving at their funeral, and probably for weeks afterwards. But do those grieving family and friends know that through their tears of pain and loss, another family will be celebrating and praising God for a miracle? The article ended with the author's statement that he prayed for the donor, and then it dawned on me - I haven't prayed for the donor's family!

So later that night, I prayed for the donor, whether he/she will be living or deceased, and for the donor's family. And you know what? It felt amazing to do so! It didn't feel selfish at all! And it didn't feel weird, praying for a stranger, someone I don't know. I can and do pray for strangers sometimes, like the man I drove by about 3 days ago in the Arby's parking lot; his heart had stopped, and EMT personnel were performing CPR on him. I witnessed the scene for probably 3 seconds, but I prayed out loud in the truck for him, and I prayed for his family for at least a full minute. Tears welled up in my eyes as I did so, and at the time, I didn't know why. Last night, I found out why. I was reading up on WRAL.com on the local news when I saw the top headline was about a fatal accident at a railroad crossing that I'm very acquainted with. It's about 2 miles from our house, and I drive across this specific crossing at least 4 times a week. It was completely accidental, but an SUV holding a mother and her two sons, aged 6 and 9, were stuck on the tracks when the crossing arms came down (because of traffic congestion) and an Amtrack heading for Charlotte plowed into them. The impact injured the mother and killed the 2 boys. I started crying when I read this and I thought, God has a plan, He has his reasons for taking these boys so early, we may not understand it right now, but we will understand it later. God works even in loss, even in midst of disease, disappointment, and heartbreak. Just like when I was robbed and kidnapped in Houston in 2003, I didn't understand why that had to happen then. But years later, now, I do understand why God allowed me to go through that.

When I was reading the comments section below the article about the fatal car-train wreck, I found my answer to why I was crying when I prayed for the guy whose heart had stopped. I wasn't crying tears of loss or grief, because they are strangers, but tears of a sort of joy because God made himself known by this incident. And it makes me happy to see God working in other people's lives, because I know the joy personally of God working in mine.
Everything works for the good of those who love God, who have been called according to His purpose (Romans 8:28). But you wouldn't have known it by reading the comments that some people were posting about this fatal accident. People were blaming the mother for being "so stupid" for stopping on the train tracks, saying that she'll live the rest of her life feeling sorry for her action which caused her 2 boys to die. When I read these comments, I became a little angry at the people behind those mean comments. Thankfully, my anger was short-lived, and my heart felt full suddenly. My heart was telling me, God did this, yes, it was accidental on the mother's part, but the mother isn't to blame. We shouldn't be blaming anyone after a tragedy like this. My apologies to any atheists who may be reading this, but evidence of God is all around us. He does exist and He is wonderfully orchestrating the lives of everyone on earth. Including you, and the person next to you. Have you thanked God for that lately? Maybe you've never even thought about that?

I certainly feel more optimistic than I had been feeling weeks prior to all this happening. I guess I needed a gentle reminder that God is in control, that God is all-powerful, all-knowing, and GOOD. Take a deep breath and say it with me: God is GOOD! :)

Well, to finish my already long blog post, you must click on another article, which further proves God's awesomeness, like totally dude!

Here is a follow-up article from the same guy who wrote the 1st article.

Umm, wow. I am speechless. It may be a long shot, but like the article is titled, What are the odds? Coincidence? No, there's no such thing. Just the way life works out? Perhaps. God's answer to my prayer, the article author's prayer, and the prayer of the guy who wanted to donate his kidney? I think the answer just might be yes to that question. But we'll see. Of course I'll keep you all posted, all 5 of you (ha ha ha!)