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.

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!

Rapid Blogging - Blog #2: The Big News

Okay, most of you that read this blog are either family or friends who are close enough to us to have already heard the "Big News", so I'm sure most of you will not find this blog entry informative. However, I'm sure you'll enjoy reading it.

On Saturday, July 10, Rob and I found out that we are expecting a baby! Wow! :)

It took us completely by surprise. We had it confirmed 3 days later by my family practice doctor, who told us that our due date was February 22, 2011. Then, on July 20, I went to my first OB appointment at Duke Women's Health Associates at Patterson Place, where I had my first ultrasound. Rob came with me to this appointment, and we both got to hear the baby's heartbeat. Super wow! Here is the first picture of our baby:



They measured the embryo in 3 different places and they calculated a new due date for us: March 6, 2011. It's so different than the first due date they gave because my menstrual cycles aren't exactly regular, and so it's more accurate to just measure the baby than it is to ask me the date of my last period.

Rob and I are so excited about this news that it's hard to put into words! We called our parents to share the great news, and then we blabbed it to the world, well, our social network, right after that. We just couldn't hold in the news! I know a lot of people wait until the first trimester is complete before they announce the news to "everyone else"...but we're not those kind of people! You know Rob and I, we both love to talk and share good news!

So as of today, I am 9 weeks and 5 days into the pregnancy. I had my 2nd OB appointment yesterday and it went very well. My doc praised me for healthy weight gain, good blood pressure and for asking good questions. She tried to hear the baby's heartbeat yesterday with a fetal doppler, but couldn't find it, which she said is normal this early in the pregnancy. So she decided to give me another ultrasound where she could check on the baby's heartbeat much easier. Which produced another picture of our baby (this is much higher quality):



I think it's totally amazing to see the difference between the first ultrasound picture and the second one! What an absolute miracle this life is! The 1st picture literally looked like a diagonal blob, and a little over 2 weeks later, it's actually looking like a baby! I see a large head (maybe we will name him Sir Issac...just kidding!), a tiny nose, 2 tiny arms and 2 tiny legs!

God is so wonderful! In the midst of all of our daily suffering through dialysis and polycystic kidneys among other things, God gives us a beautiful, precious gift. Something we've wanted for so long. Something we've been trying and hoping for. Something we thought we weren't going to get, hence all the talk and action in the past year about wanting to adopt children...

God is the creator of this baby and He will get all the glory for it!
Thanks for reading!

Rapid Blogging - Blog #1: I'm a Copy-Cat!

It's been months since the last blog post here, and that's months too long, I know and I'm sorry! So, in attempt to win back the 4 readers who check up on our blog, I am going to bombard this blog with multiple entries tonight. Each blog entry will be about a different topic. Once I'm done, then you 4 readers will be all updated on our life, that is, as of August 6, 2010. Life changes so quickly that tomorrow could be a completely different day.

The purpose of this blog entry is to point out the fact that I am a total copy-cat. Or, as I would say when I was 10 years old, I'm a " total byter". I just read our friend's blog and he came up with the "Rapid Blogging" idea for his blog, since he hadn't updated in oh, a week. Which for him is a long time. But come on, really? The last blog post I did was all about my "new" job. HA! And it was written in April. It is now August and while I'd like to say that time was flying and I had no time to update the blog...I can't, because that would be an outright lie.

So, in an effort to continue being a total byter and copy-cat, let me just say "Meeeeoooww!" and go grab a Keebler oatmeal-chocolate chip cookie from my kitchen...I'm gonna take a giant bite out of it!

Okay, that was a lame joke. Sorry. Will try to be more funny and less stupid in the other blog entries tonight. :(