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, January 25, 2011

The Ache

Ok, I am not a poet, but an idea for this struck me on my way into work this morning.

The Ache
from years of pain
the ache resonates
through my body
at different points
from different trauma






And so on

Each day, I feel each one
one at a time

first, I notice the ache in my arm
the scarring from over 1,000 sticks
from large needles
the clot that remains from the damage
aches like a heart after it breaks

then, I notice the ache in my shoulder
from repeated dislocations
impacts from years ago
the pain is such that a knife has been plunged
deep inside

the ache in my neck
from stingers
bicycle crashes
the compressed spinal column
the slipped disc

the hip that was dislocated years ago
playing football with friends
the doctors reprimand sits in my mind
for playing, when I had been told not to
two years before
now, on long hikes, I need to make repeated stops
to stretch my hip or risk not finishing

the ankles, sprained and strained
now, to the point of not being able to do either
the ache that sets in when it gets cold
the cracks and creaks

my abdomen, rife with scarring
the evidence of five surgeries
the hernias that remain
the hope of repair to come soon
the ache of two more procedures
and the preparation to come.

the aches and pains of life
are showing
as I feel each one
it takes me back to a time
in my life
that through the pain
I remember fondly.

The greatest numbing agent
that gets me through the pain
is the love of my wife
the hope of my daughter to be
and living my life for Christ
knowing what he endured for me
that my pain is minor in compare.

Monday, November 1, 2010

We have a new blog!

Check out our new blog here:


We will have lots of updates on the new kidney.

Wednesday, October 27, 2010

Kidney Transplant - Rob got one!

Just a little update for any of you who happen to be reading this and don't know the news already - but Rob received his kidney transplant at 2:00am this past Sunday, October 24!

We are so excited at this new gift of life, and Rob is doing well in his recovery. The new kidney is producing a decent amount of urine (around 100 ml every 2 hours) and he doesn't have much pain from the incision site.

There is so much I could write about the transplant and the events surrounding the past few days, but I just don't have the time to do so right now. Of course a new blog title and url will be mandatory sometime, too!

Here's a picture of Rob that I took on Monday evening. He is smiling really big because he is eating solid food for the first time in 53 hours!

Friday, October 8, 2010

Not sure what to do

(I'm publishing this post now because I'd never read it until just now. It brought tears to my eyes, remembering this time in our lives. Rob wrote this just a few weeks before his transplant came along.)

It has been an on going problem for the past few months where my fistula has been bothering me. The problem is, it keeps clotting off or becoming inaccessible which makes it hard to do dialysis if I can't access the access. It came to a head on Wednesday night when the tech's had to stick me 6 or so times to no avail. I know they were trying hard, but the thrill was weak and they kept pulling out clots. The disturbing part is when I go to see a Doctor, for some reason, they can feel it and they tell me it feels strong and there shouldn't be a problem sticking it.

I want to ask them to come to my clinic to do my sticks if it is so easy.

Anyway, I went to the clinic that clears out the problem and the entire time, the Doc is telling me how hard my arm is to work on. He had wires and ballons in my arm all the way up to my shoulder, cleaning out different pathways, trying to make something last. He showed me what he was doing on the monitor and nothing wanted to stay open, even after hours of trying to blow them open. Needless to say, my left arm feels like it was crushed in a compactor.

Danielle came back to pick me up and take me to dialysis and we drove on up to Davita. I got set up and ready for the stick. I am not sure if my arm was too tender from all the work that had just been done on it or what, but the sticks felt like they were driving nails into my arm. Even then, then pain normally subsides right after the stick, this didn't. They had trouble keeping pressures at a decent level throughout the treatment and this was the first time my treatment felt like torture for the entire time. In order to be able to run, I had to have my elbow hyperextended and the placement of the needles hurt. I tried to put myself in a happy place and floated in and out of it. The pain kept dragging me back to reality. I tried to sleep, but I never fully went under because of the pain in my arm.

Once the Bataan Death treatment was over, Danielle and I ran over to Green Tango and picked up some dinner to take to Forest Hills park. It was such a beautiful afternoon, we couldn't resist.

The rest of the day, my arm felt like it was clamped in a vice, then I started to really worry. Crazy thoughts started going through my head, like I won't be able to keep proper blood flow to my arm and end up losing it. How am I supposed to hold my wife and my daughter with only one arm?!?

Wednesday, October 6, 2010

Birthday Hike at Umstead State Park: Sycamore Loop Trail

It's someone's birthday today. I'm not going to name any names, so you'll just have to guess who turned another year older.

I had a great day today. I slept in late (until about 11:45am) because I needed to catch up on some lost sleep during the past week. My parents had come to visit for 10 days, and I was staying up late, around 1-1:30am every night, sometimes later, and only getting maybe 6-7 hours of sleep. So I definitely needed a recovery day to catch up on sleep!

The weather was gorgeous today and I just couldn't justify staying inside the house all day. I chose to go to Umstead State Park in Raleigh for a hike because I hadn't visited there in a long time. Lately, I've just been hiking in Hillsborough or North Durham. So a visit to Umstead sounded great. It used to be my favorite training location way back when, you know, when I was a super fit athlete and all I wanted to do was work out.

I parked at the Bike and Bridle trailhead parking area which is in the Crabtree Creek section of the park, which can be accessed by entering the park at the Highway 70 entrance. As soon as I stepped out of the truck, I breathed in a lungful of pure nature. Ahhh, so nice. The sky was a beautiful shade of light blue and there was no one in sight. Pure silence in the middle of nature. Ahhh, double dose of nice. Then a few seconds later, a 747 from nearby RDU roared overhead, disrupting my moment of zen. Ah, boo! Oh well, it beats the constant noise of I-85 you hear when you hike at Occoneechee Mountain in Hillsborough (last week's hike with my parents).

Here's a picture of the beautiful sky just before the loud airplane flew overhead:

I started hiking on the parking loop access road until I reached a locked gate with a brown sign on it. The sign stated who and how to yield to other trail users. I still get a kick out of these signs out here, even though I've been looking at them for 7 years. Back home in California, the hiker is the most important trail user. Cyclists and horseback riders both yield to hikers. But out here in NC, everyone yields to the almighty horseback rider. I don't understand it. How does a hiker walking at a pace of 3 miles per hour threaten a 2000 pound horse walking at about the same rate? Eh, whatever...I walked past the gate and continued walking straight until I hit Graylyn Road.

Okay, here's my route: Turn right on Graylyn (multi-use fire road), then right on Sycamore trail (hiking only trail, I think? Maybe horses are allowed?). When you get to the first fork in the trail, go left. Don't go right, because that would take you back to the parking lot. Stay on Sycamore trail, which is a wonderful trail that will keep you on your toes. Loads of rocks and roots are just waiting to trip you up! After a while, you'll see a creek, and if you look close enough, you can find a little trail that goes off to the right and it parallels said creek. I was amazed at how much water was flowing in this creek. I had to take a picture:

I kept walking along the creek until I found something that really brought some excitement to my hike - a waterfall!

I never knew there was a waterfall in Umstead! Which is surprising, due to the amount of time I've spent out here over the years, riding, hiking and trail running!

Here are some pretty pictures of the little waterfall:

First picture, you can see that the total vertical drop of the fall might be around 3 feet. But hey, it's a waterfall. And the sound of it is so relaxing!

A closer picture of the falling water:

My comfy trail running shoes wanted to be in the picture, too:

If I had a comfy foam padded seat, I could've sat there on the rocks for a long time just enjoying the sound of the water and being in nature, in perfect hiking weather. But I decided to keep moving, being the ever-adventurous person I am.

I climbed up the rocks to see if I could see where the waterfall was coming from. I found out - a little dam of some sort. I guessed that it was overflowing from Sycamore Lake.

I was right. Sycamore Lake was too full from all the rain we got last week. I've heard this is a good lake to go fishing in.

At this point, I decided to turn back and get back onto the Sycamore Loop trail.

I kept my pace steady, but not fast. I took short little breaks whenever I needed. Solo hiking can be a little boring, so I kept myself awake by singing along to whatever song was on the random iPod shuffle, or by talking to myself or to Baby Girl Newton.

Here's a pretty view of the trail:

Finally I reached the almost-halfway point of my hike - Graylyn Road again. There's a nice bridge over the creek at this point, and I sat down to take a picture and stretch my legs a little.

I thought about just cutting my hike short and taking Graylyn Road up to the parking area, but then I thought that would be kind of wussy, so I kept on hiking Sycamore trail, now on the eastern side of Graylyn. Here's a map of my hike. I'm clueless with Photoshop, I could only figure out how to draw my route with a gray paint line...

The hike started at the "P" that I circled. So I've already covered my hike from the start point all the way through the first section of Sycamore Loop trail. Now I'm at the bottom most point on the map, and entering the eastern side of the loop. As you can see, this section of the loop is a little longer than the western side of the loop. But I felt strong enough to finish. Or so I thought...

I bit off a little more than I could chew. I only took 2 more pictures the entire rest of the hike. And they're not even that great, otherwise I'd share them with you.

When I reached the end of the Sycamore Loop trail, I was never happier to see Graylyn Rd. I knew it would only be another 15 minutes until I reached the parking lot!

I had a lot of fun on this hike. Beautiful trail, weather, scenery and solitude. I couldn't ask for a better afternoon on my birthday!

Friday, August 6, 2010

Rapid Blogging - Blog #4: My job, or lack thereof...

I am currently unemployed. And the decision to become unemployed was 100% mine. Yes, I know I wrote a blog post months ago about my "awesome new job" and how much I was loving it. But things change, oh boy, do they ever change!

What started off as a great job in April, soon turned into a mediocre job in late May/early June, which then turned into a "I'm not so sure about this job, but I'll hang in there and see what God has planned for me" in late June. The results of hanging in there? Well, I found out that my job had officially turned BAD, and there was nothing left for me to do except take my experience and leave.

I gave my resignation on July 2. It came as quite a shock to 2 of the Board members. How my resignation was received by the others on the Board, I'll never know. But I sure would like to know...especially from the person who was responsible for the chain of events that led to my choice to leave. When I say "person who was responsible", I don't mean the person or people who I point my finger at and say it was their fault. NO...it wasn't any one person's fault. I really mean the person who is in the leadership position at my old job. Anyone in a leadership position knows that when something goes wrong, there will be some blame assigned to them. That's just the nature of management and leadership. During all of the craziness that led up to my resignation, I never once tried to point the finger at one person and try to give the blame away. I took on some of the blame. I said things like, "I know I could've handled that situation differently. I learned something from that incident and I will not handle future problems this way." I humbled myself. I never once tried to lord my position or title over my employees, yet it seemed as though I did by the interpretation of my actions.

Even when given the chance to tell my side of the story to the Board of Directors and committee members, I told the truth of the matter, which came from my heart and not my head. I'm thankful that I am a Christian, that God has given me grace through faith which led to my salvation. Because of His saving grace, the Holy Spirit lives inside of me and that Spirit is God Himself, who is with me all the time, helping guide me and direct me in the ways I should go. Sometimes we encounter circumstances in our life where we feel deeply troubled. We wonder and ask ourselves, "Is this the right thing for me?" and then we get down and pray and ask "God, what do you want me to do? Show me and lead me to your will in this situation. I cannot do this alone."

I sought counsel from my Pastor on the troubles I was facing on the job. The outcome of the session was that my heart was not in right place. I was trying to fix the problem on my own. (even though I was not aware of it, I thought I was giving it up to God and trusting Him) So I prayed and prayed, and read the Word a lot (the book of James, chapters 1-3 is where I read from for the week leading up to my resignation). I sought after Jesus during these struggles, and He led me to speak with some people who were unrelated to my job who were able to confirm and answer my question about whether to continue in the job or not. The answer was no, you need to get out of there, this job is not right.

So I resigned and immediately, I felt a huge weight lifted off my shoulders. I felt that everything was going to be okay, I had made the right decision and God will continue to take care of us, like He always does and will do.

The Bible verse that helped my decision is James 4:17. It reads, "Therefore, to one who knows the right thing to do, and does not do it, to him it is sin." So if you knew that a co-worker was stealing from the petty cash drawer, and you know that it is wrong (duh), and still did not speak up and tell a manager about it, then you would be in the wrong. You would be sinning.

Well, my situation wasn't about someone stealing. It's about something you'd never find specifically in the Bible... which makes it difficult for some people to understand. Even unbelievers and agnostics know the basics of the major no-no's in the Bible. Thou shalt not commit murder, thou shalt not steal...etc. But for something that is based on professional standards, it's a lot harder to prove right from wrong, or rather, right from acceptable.

As Club Manager of Eno Valley Swim and Racquet Club, I was responsible for managing my staff of lifeguards and snack bar workers. Each worker had a list of standards that I had laid out at the beginning of summer which chronicled my expectations for them. You know, things like, "Be on time for work. If you're going to be late, please call me and let me know." Well, the expectation/standard that I gave to the lifeguards which eventually led to my resignation was this:

On duty lifeguards will sit in the lifeguard stand, attentively scanning their zone of the pool, and wearing the lifeguard rescue tube properly: strap across the chest, and the tube placed on the knees/thighs.

To make a long story short, the lifeguards did not like that standard/expectation. Why? Because they didn't have that as a standard the year before, or any of the 29 years before that either. The Club Manager before me did not care enough to mandate the professional standard of wearing your lifeguard uniform the proper way. The lifeguards resisted, and I reminded them. "Please wear your strap and place the tube on your knees...thank you!" -- I said that at least two times to the majority of my lifeguard staff. Well, the lifeguards finally had enough of me enforcing this standard/policy/rule of mine, and they fought back. They whined and complained to their parents and the Board members. The Board members felt sorry for them. The Board called a closed meeting between them and the lifeguards, and I was not invited. Then the Board wanted to hear my side of things. I presented to them the evidence of my staff not following the standard, along with the professional standards from the American Red Cross.

The end result was my boss telling me to "get rid of that rule and just let them do what they want when they're up in the guard stand." First, it was a directive. Then, the second time he said it during the same conversation, it was a suggestion. Then, when I asked him to put this all in writing, he got mad at me and yelled at me for making his job harder, and how awful that was to even ask because he has taken so much time out of his personal life this past week....

So, to conclude: It is wrong (to me) to allow lifeguards to NOT wear their strap and to let them use the guard tube as a foot rest. So since that is wrong to me, if I do it (because my boss told me, err, I mean, suggested I do it) it is sin. Hmmm, to sin or not to sin? That is the question! A Christian friend of mine put it this way, "If he is asking you to compromise on what you believe is right, then you know what you have to do. When you compromise from righteousness, it only leads to unrighteousness." Well said.

So I have been unemployed since July 2. But a week later, I found out that we were pregnant! So really, I do have a "job". I'm growing and nurturing a baby. And I'm still doing my "job" as wife to Rob. And all the other numerous things that go into it, like cooking, cleaning, grocery shopping, etc. So I'm staying busy, or, as busy as I can, due to the effects of pregnancy on my body. I've dealt with morning sickness twice, general nausea too many times to count, and out-of-this-world tiredness like nothing I've ever felt before!

So I am really very happy to be unemployed right now. Sure, it'd be great to work a little outside of the home, to help pay more towards debts and future bills, but it's okay for now. I applied to a handful of jobs a few weeks ago, and nothing has come of them (and I'm well qualified for them), so I'm just going to be content with what I have that God has continued to bless us with: food, clothing, shelter, Rob's job, the new life growing inside of my womb... and trust that if God has work in my future, that it will come and I will know and be sure of it.

Thanks for reading!

Rapid Blogging - Blog #3: Rob's Health

Rob is still dialyzing 3 times a week at the nocturnal clinic. It works for us. Unfortunately, it didn't work out so well for our dialysis friend, who recently transferred out of the nocturnal clinic to an afternoon shift at a nearby clinic. I'm glad to hear that he is at least a little bit happier at the new clinic and dialyzing at a different time. But I sure do miss being able to say hi and catch up with him whenever I went to visit the nocturnal clinic!

Rob has good days and some bad days. His good days are great, and his bad days are awful. The in-between kind of days are best described as "meh". For those of you who have never heard the term "meh" before, here is the Wikipedia definition of it:

"Meh" is an interjection, often an expression of apathy, indifference, or boredom. However, it can also be used to indicate agreement or disagreement. It can also be an adjective, meaning mediocre or boring.

Well, that definition sure doesn't hit it on the head. How about this definition, from the characters who created it (the Simpson's):

"It was actually spelled out in The Simpsons when Homer is trying to pry the kids away from the TV with a suggestion for a day trip. They both just reply 'meh' and keep watching TV; he asks again and Lisa says 'We said MEH! M-E-H, meh!' "

There, now that one is better. Life on dialysis is a lot like that kind of "meh". Anyone reading this who is or ever was on dialysis at some point in their life (or who is a caretaker or spouse to someone who is/was) will understand that.

Back in the early days of dialysis, way back in 2008, Rob actually did feel better after a session of dialysis. His blood was cleaned out and there weren't a bunch of toxins floating around his body. But as dialysis has continued, and Rob had his double nephrectomy, and the wait on the transplant list continued to click 1 day closer every day, things have gotten tougher.

There are more bad/awful and "meh" days than there are good days. Rob still continues to struggle with low blood pressure. Every time he gets up from the couch, the bed, or stands up from bending over, he has to lean against a wall or a door frame for 10-15 seconds until the dizziness goes away. He sometimes also gets ringing in his ears and his eyesight is affected (gets blurry or shadowy). It does worry me, but what is worry?

Worry is just an emotion. Everyone has worried about something in their life before. Wikipedia (again) says that "Worry is the state of engaging in chains of thoughts and images of a negative and an uncontrollable nature in which mental attempts are made to avoid anticipated potential threats." Worry can sometimes lead to fear, but I have not allowed it to go that far. Most of the time, I try to turn my worry into thoughts and images of a POSITIVE and ever-lasting love that is promised to us from God. Everyday is a gift from God. We are not promised a new day, and there's nothing we can do or say or think that will prove otherwise. If the Lord wills, I will wake up tomorrow and thank Him for the continued breath of life. If the Lord wills, Rob will wake up tomorrow, connected to his dialysis machine, and thank God for His creation, His continued sustainability from a machine that sucks life out of him and pumps it back in, continuously for 8 hours. We have nothing to fear when we learn to put our trust in God. I do trust God every day. I trust that His plan is better than any plan I could create in my mind. And this trust is part of my faith. Faith in God for all the things that have happened in the past, present and those that will happen in the future.

Speaking of the future, faith about the future is usually called "hope". I hope for many things. I hope to have a healthy baby next March. I hope that Rob gets a kidney transplant. Actually, I hope he gets one soon. I hope that our dialysis friend gets a kidney transplant, too. I hope that our church will continue to grow and bring more people to the saving knowledge of Christ, changing their lives and the community around them for the better. I hope for... well, I could go on, but I'll spare you.

What do you hope for?

Rob has been on the transplant list now for around 1130 days. That's about 3 years and 1 month.

In other health related news, Rob had a minor surgery last month for an unrelated-to-dialysis condition. I won't go into details because we don't really want to talk about it. But it's nothing scary, so don't worry!

The most recent "bad" day that Rob had was this past Tuesday. As he was coming off of the machine after treatment all night, the dialysis tech made a mistake. Instead of having Rob's blood pumped back into him with saline (when the machine is turned off at the end of treatment, there is still blood in the tubes and inside the filter/machine, and that has to be returned to Rob's body), the blood was pumped further OUT of him and into the bag of saline. Yeah, backwards... not the right direction. Then, when the needles were being taken out of his arm, I don't know exactly what happened, but there was a blood spill which resulted in more of Rob's blood going where it shouldn't: on to his bed sheets and on the floor. Ugh. Groan. Sigh.

We know accidents happen. That's why Rob isn't holding a grudge on this certain dialysis tech who made the mistake. But mistakes do have consequences. Unfortunately, the consequences aren't paid by the person who made the mistake. Rob felt so horrible due to the amount of blood that wasn't returned to his body, that he took the day off from work. He had zero energy that day. We spent the day on the couch watching multiple movies and eating leftovers from dinner the night before.

Oh, and lately, part of why Rob has been feeling so yucky and low-energy is because his hemoglobin levels are too low. Normal hemoglobin levels should fall somewhere in between 12 and 14 g/dL. Patients with kidney failure have reduced hemoglobin levels (just like cancer patients who are undergoing chemotherapy do, too). That's why they give him EPO during his dialysis treatments. Well, recently, someone at the National Institute for Kidney Whatever decided to lower the acceptable limit for "normal" hemoglobin for patients on dialysis. It used to be 12-14. Now it is acceptable for Rob's hemo to drop into the 10-12 range and be okay. So Rob's last lab results showed that his hemoglobin level is 10.2, which means, "all is good". News flash: no, it's not! Whoever is responsible for lowering this acceptable level should feel shame. Yes, your decision to lower the level is probably saving dialysis companies MILLIONS of dollars every month, because it means they use less Epogen and therefore pay less money to Amgen, the creator of this miracle drug. Woo-hoo. Good for you. I hope you sleep better.

We asked the dialysis nurse if they could give Rob more EPO, since his last hemoglobin level was only 10.2. You can guess what the answer was.

I guess that about sums up Rob's health. I feel bad for ending on such a negative note. But, it's life, and it's our life, and I am compelled to share it with whoever reads it.

Thanks for reading!