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.

Tuesday, April 20, 2010

Learning my limits

Well, last week was an eye opener of sorts. I have found either my physical limits or how far my base has fallen through my illness. I went for a lone mountain bike ride at Lake Crabtree and started out feeling really good, the bike was dialed, my legs felt a little rusty, but strong none the less. As I rode up the trail, I made it out to the main fire road that leads to loops 2-4, the pump track, and the beginner jump line.

I stopped at the jump line and ran through 6 times. It was the first time on my Mt. Vision (my bike). I was also using new tires that were a lot smoother, so they were a lot faster. The first run through on the small line, I over shot the landing on the first two of the three tabletops, but the bike was stable. Granted I am not getting tons of air, just enough to keep it fun.


After getting my fill on the jumps, I started down Loop 2 to connector E, then over to Loop 3 to 4 and while I was on Loop 4, my head started to throb, my back started to ache, and my hearing started to fade. I would focus on shaking it off and saying little prayers to have the strength to overcome it. I headed back to the car, then hung out and revived myself. I noticed that I was at 30 minutes of total riding time.
Hmmph! It is frustrating and encouraging at the same time. I know I am doing more than anyone at my clinic (physically, that is.) We dragged our friend to the Kidney Kare 5K to end up being the only two people on dialysis that showed up to run. The only two in the Triangle! With the way I feel after treatment, I am shocked that not one other patient showed up. What I mean by frustrating is, I used to be able to run well, and I am not even trying to compare myself to when I was in high school or college. Just a few years ago...wow, has it already been 6 years!!! Back in 2004, I had myself back in shape, to the point I was down to the weight and size I was when I was a Junior in High School. (202 lbs. and a 34 inch waist...almost 32).




Anyway, back to my new limits. I made it home, had a shower, then gathered my things for a repeat on Friday with a group from work. We were going to hit a new section of trail that some of the guys built. We left work for a lunch ride, I was already telling myself I needed to break off early to make sure I got back to work on time and not bite off more than I could chew. The pace we started with was manageable for a warmup, then we arrived at the trail head and it was on, it was a great start to the trail, good little climbs, technical decents, lots of fun. I allowed myself to get swallowed up in the fun because I looked at my timer and I was hitting 22 minutes and I was on the backside of a few large climbs to get back to work. I would get off and hoof it up some of the climbs. I wouldn't get as tired walking up the climbs.

By the time 30 minutes rolled around, I was still pretty far from work, and like clock work, my neck and shoulders started to ache, then the small of my back, but the dizzy spells didn't seem to come like normal. I had been praying whenever the weakness would come over me for God to give me the strength I needed to get back to work because I knew I couldn't do it on my own. The guys at work were great, they waited for me at forks in the trail and at the tops of climbs, but I would press them ahead, saying that I was fine and they could move on and don't let me hold them up.

We made it out to the end of the trail and started riding the road back, we are at 40 minutes now. I am cooked, limping back to work. I prayed to God that I would make it back with enough time to stop by Subway before heading back. Then God sent an angel in the form of a coworker, Chris, who came back to ride the rest of the way back to work. Looking at the time, I asked Chris if he would run to Subway for me, so I could get back. (It would probably take the same amount of time.) It took every bit of energy to get back to work. I made it and finished out the day.



On Saturday, I had a great meeting with some of the men from the church where Danielle and I are members. Afterward, I met up with my friend, neighbor, and coworker, Tony and a friend of his for a ride at Lake Crabtree. This time we rode the C connector to the Lake trail to Loop 1. We stopped at the jumps again, played around, then I had to call it a day. It was getting close to the time when my carriage was going to turn into a pumpkin. I was pressing 30 minutes for my ride time, so I bolted back to the car and started to feel the onset of weakness overtaking me. When I arrived at the Corolla, I leaned the bike on the car and plopped down in the driver seat and just listened to music for 20 minutes. I put the bike on the roof rack and had a moment of weakness midway where I had to drop the fork legs on the roof of the car to situate myself and reattempt. The next attempt was good. I sat back down to rest for a few more minutes. Then went and talked to a few guys at my old shop.

When I got home, I packed up my fishing gear and dragged Danielle along with me to go fishing at the West Point on the Eno River in Durham.


We could see 4-5 lbs carp in the river, but they weren't biting. We are going to go above the damn where there are bass and crappie next time.

Sunday was a good day, after church, we came back and made some BBQ...some NC BBQ, I made a homemade rub for it along with a homemade vinegar sauce that was a little hotter than in the past after adding a tablespoon of Habenero Sauce. Oh the fire, it burns! with spicy goodness that is.

While that was cooking I decided to try my hand at breading fish for the first time as well as making hushpuppies for the first time. I had to use store bought fish...grrr! All in all, it came out great.

Sunday evening, we went to the Historic Occoneechee Speedway Trail for a short hike. It is one of the most beautiful and peaceful places I have been in a while. I was planning on stopping by after work today for some quiet time to commune with God. I decided against it, to go home and here about Danielle's interesting day with a neighbor to the club...maybe tomorrow?

Saturday, April 17, 2010

Shameless Animal Videos

Our dogs are so adorable. Don't believe me? Check them out!

Saturday, April 10, 2010

Whoa, sorry! Big update!

I apologize for not blogging at all these past 3 weeks. I have a great excuse, though. What, no excuses, you say? No! Let me explain...please! :)

Okay, so I found employment! Whew. After being unemployed for 5 weeks, you can imagine how relieved both Rob and I were when this job came through! And it's not just any job, it was my "dream job"! I interviewed for this job back in early March and then didn't hear anything back for 3 weeks. I was so sad, thinking, "oh well, I guess that's not the job God had in His plan for me. God will provide something, just not this one..."

But the call finally came through one day, on the last day of March. 2 days later, I'm eating lunch with my future bosses, and they extend an offer of employment to me. 1 day later, I accept it. And 1 more day after that, I find out my job title - Interim Club Manager at Eno Valley Swim and Racquet Club! Hooray! I'm so excited to be working for such a great Club in Durham!

So I've been busy these past 2 weeks, to say the least! As Club Manager, I am in charge of "getting things done". Is that specific enough for you? :) Okay, how about this: I'm in charge of ensuring that daily Club operations run smoothly, addressing anything from broken tennis nets to keeping the Shack snack bar fully stocked. That, and manage a summer staff of about 15 kids with the help of 2 great Assistant Managers.

Yesterday my project was to find a solution and fix this:



Not pretty, huh? Now I don't know much about tennis, as I am mostly a swim girl, with the majority of my working experience coming from the pool deck. At first I thought, "uh oh, looks like this net is done. I better start researching how much a new net will cost and bring the proposal to the next board meeting." While that thought isn't a bad plan in itself, it still doesn't fix the problem for those who want to continue playing on that court. I would've never thought of this on my own, so I'm thankful for the great recommendation from the tennis chair on the Club's Board! He suggested this temporary fix:



Fishing line can be used for more than just fishin'...who knew? :)

I used 80 pound line found at Wal-Mart for a whole $3.75. Now people can continue to play on the court until a better solution can be found.

As I'm sure you can tell by my language and attitude on this blog, I am LOVING my new job!

Enough about me. Rob is doing okay, just hanging in there and trying to stay positive like he always does. He had his fistula maintenance appointment, a "tune-up" of sorts on his veins in his access arm last week. And he saw his fistula surgeon yesterday who explained the mystery behind the "new access sticking point" and his "old one". But first I have to update you on that...

The old one was having major problems about 3 weeks ago. He kept clotting and couldn't get good sticks in to start his dialysis treatments. So they sent him to Vascular Access Center here in Durham. What should have been a quick in-and-out visit ended up being a 5.5 hour "ok, I'm really worried, what's going on in there?" kind of visit. I even had to call Rob's boss and explain that Rob probably wouldn't be back at work that day. Rob came out of the "tune-up" room and wolfed down the sandwich they had provided him. Then the vascular surgeon came out and described/explained what he saw on the fistulagram.

Here's an image from Rob's fistulagram:



See that little, light gray vein in the bottom of that picture...well, that is where Rob has been sticking himself for the past 2 years in dialysis. See how at the top of that light gray vein, there is a little "bulge"? Well, that's where it clotted off, a long, long time ago. But Rob kept sticking there and doing dialysis, with no problems for 2 years.

See that dark gray vein, the one that makes an almost 90 degree right hand turn? Well, that is what the vascular surgeon decided to call Rob's "new access point". He cleaned it out, using instruments that vascular surgeons use, whatever they are called...Rob said he could feel them moving up his arm and poking around near his shoulder. ACK! UGH! Seriously? Ouch. The vascular surgeon was amazed that Rob's veins essentially "fixed themselves" after the clotting happened on the original route. So now Rob has 2 access points. The "old" one and the "new" one.

Here's a hand-drawn pic of Rob's fistula. As you can see, before attending Duke Medical School, this doc went to art school where I think he was given a B+ in Intro to Medical Drawing:



"Ahhh, now I see!" you are probably saying to yourself right now. The place with the dots is where Rob has been sticking himself for 2 years. The "new" location is to the right of that old one. So they stitched up Rob's buttonholes and Rob's been going through the painful process of making new buttonholes on the new access point. Last night was the second time that Rob was able to stick himself on his new access point. So hopefully soon, he'll be able to use blunt needles and it won't hurt as much as using sharps.

So yesterday's visit to the original surgeon who created Rob's fistula, explained a lot. He said that where Rob had been sticking himself for 2 years was originally his "alternate" route, and the "new spot" that was uncovered by the Vascular Access Center wasn't really a new spot at all - it was his original spot, where Rob should have been sticking himself all along. Oops.

One more picture of Rob's new access point:



Well, that's all for now. Hopefully it won't be another 4 weeks before you are updated again.