a portrait of my grandfather

This past Sunday, Julie and I attended the funeral for 91 year-0ld Frank Bales, my grandfather, or "Papa" as we called him. I really liked him, and I wish you could have known him. It seems that just about everybody who did was glad they had, so I'll tell you a bit about him.

For all of my life Papa wore hearing aids, which meant that you had to speak loudly to him. His own voice didn't really need amplification, as it was deep and booming. He smelled like Old Spice and Folgers coffee. He always wore a gold watch face-down on his right wrist. As a child, this made me feel a special kinship with him since I also wore my watch on my right arm. (I don't know what his reason was, but mine was that the cheap watches I wore gave me rashes on my left wrist but not on my right.)

Thanksgiving! Also, gnats.

We spent Thanksgiving with my brother and his family along with some mutual friends of ours at a guest house on Lake Nicaragua. Lake Nicaragua is about 40 miles wide and 100 miles long. In other words, it looks and feels like a fresh-water ocean. It's so big that there are actually towns built on two conjoined volcanoes in the middle. It currently connects to the Atlantic via the San Juan River, and there are plans to connect it to the Pacific as well to give Nicaragua its own canal.

Moving, Geckos and Frogs

Well, we made it! We moved back to Nicaragua one week ago today. We got keys to our new place the next morning and spent much of the last week moving in. This was our 6th move in 6 1/2 years of marriage. Somehow we always manage to forget exactly how much work moving can be. But we are reminded (on average) every year.

Two moves ago, we moved from our shared apartment with Chase’s brother’s family to an apartment we shared with his sister. We discovered not long after moving in that we shared our bedroom/bathroom with an unfortunate gecko whose life came to an end when a previous tenant smushed him in the doorway. Since there are probably at least one million tasks to do when moving to a new place, cleaning the poor gecko out of the door frame just was not priority #1. Thus, he remained…for 6 months. To see a video of us eventually removing said gecko, visit this blog post.

the gospel according to julie's third kidney

This is something I've been kicking around in my head for months now. As with any physical-world metaphor of spiritual-world happenings, it falls short—there are many things about dialysis and transplantation that do not parallel salvation. But while the pitch of the story may be off-key, it hums along with the tune of redemption.

Julie had a condition which would end in death. Externally, this was hard to tell. Even for her, it was frequently hard to believe that anything was seriously wrong inside. It would have been easy to continue to ignore the signs and symptoms since they weren't present all the time. But the simple fact was this: Julie was sick and wasn't getting better.

She tried being good. Per doctors' instructions, she "avoided" foods high in sodium; she "avoided" foods high in cholesterol. She "cut back" on protein consumption in general. Sure—she wasn't always consistent, but nobody's perfect. Besides, it didn't seem that to err in her food choices really changed things one way or another. And in a real sense, it didn't. At best, good dietary choices made her feel a little bit better as the inevitable came.

(Overdue) Update: Bibles for Kids

In May of 2012, we started a fundraiser. Our goal was to raise $5,000 so we could buy about 500 Bibles to give to kids involved in our ministry. The response was overwhelming and we ended up raising $11,460 – over double what we had hoped for! Clearly, God wants to get His word into the hands of His people. We dreamed too small and were amazed by the generosity of the body of Christ. As a result, we were able to give Bibles not only to kids, but also to youth and adults.

Home away: the year in pictures

This past week we finally committed to a date to return to Nicaragua: October 14th! We bought one-way tickets, and now just have to figure out how best to prepare over the next 62 days.
Also noteworthy is the fact that today marks exactly one year of us being back in the States. On August 13th 2012, we arrived at DFW airport more than a little tired, more than a little sad, more than a little uncertain about our future, but also more than a little loved and welcomed by our family and friends. Thank you.
The following is a brief picture tour of the highlights and important events of the last 365 days to recap where we've been and how God has blessed us.
In going through all of our pictures, I realized that we don't tend to take pictures of ordinary things or of all the people who are important to us.

the significance of insignificance: tornadoes, Hur, and non-profits

I want to tell you a story. Some of this story is currently well-known, but I'll add a little bit to it that you may not have known:

On May 20th Moore, OK was hit with a devastating tornado which broke records in wind speed and property destruction. Somewhere between $3-$5 billion was estimated in damage. Educational programs told us that the best of houses collapse to winds of just over 100mph. This tornado had winds of over 200mph. We watched horrified as it struck hospitals, houses, and elementary schools. The 2-3 mile wide strip of damage quickly became referred to as Ground Zero.

In the hours and days afterwards, thousands of people flooded to the disaster area to help in any way they could. Average people were digging through piles of rubble to find survivors and their pets. Others gave rides to those whose houses were obliterated.

But actually, way too many people than were needed went to Ground Zero—so much so that emergency vehicles couldn't enter and exit. First responders had little room to work; police shut down the area and all the news channels pleaded for people to stay away from the disaster area. There were so many helpers (and people wanting pictures) that they were actually causing harm.

Kidney Day +1 month

Since my last post, I have continued to do well. I had a minor setback, which included a fever and an infection, but nothing that a 14 day antibiotic couldn’t take care of. Previously, due to some rashes, I had thought I was allergic to sulfa and cipro, but since the transplant I have taken both without any problems, so maybe I don’t have any allergies after all! Also, after raising my Prograf dosage (one of my immunosuppressant drugs) over the last few weeks, it finally got to the point where it was too high. This drug is the reason I’ve had to get lab tests so often because if the level in my blood is too low, it is not protecting my kidney from my own immune system, and if it’s too high, it is actually toxic for my kidney. It reached that latter point, which caused my creatinine to go up to 1.4 (eek!). As a result, they lowered my dosage from 22 pills to 16 pills per day, and I’ve been feeling a lot better. For several days, I was lacking all energy and motivation and not sleeping well, but I think I am back to normal now, so hopefully I’m a little closer to the right dosage.

In other news, I went in this morning to have a stent leftover from surgery removed from my bladder, so now it all feels officially done. To “celebrate”, we stopped by the dialysis center to turn in my dialysis machine. (We were supposed to do this two weeks ago, but forgot and then the tornado happened last week so we couldn’t get there, so this week it was!) It was a great reminder of how much I like NOT doing dialysis!

Kidney day +16

It’s been 16 days since the transplant and I am so thankful for how well my recovery has been going. I think I took pain meds once after coming home, but really didn’t need it after that. Of course, I have been and am still very sore where the incisions are, but the first few weeks of dialysis were way worse than any pain I have felt since the transplant. Each day, there is something new I can do like stand up straight, sleep on one side, then the other, cough or sneeze without holding a pillow to my stomach, etc.

On the day of surgery, I got to my own room at about 5:00PM and 48 hours later, I was home. Compared to my 12 day hospital stay in Nicaragua in January of 2011, I felt like I was barely even there, especially since the entire time was filled with visits from friends, nurses, doctors, pharmacists, and social workers, all with important, detailed information about life with a transplant. I even left the hospital the day before Amy, my donor, which I think is pretty rare.

Life with a transplant is very different from life with kidney failure. It’s amazing how much a working kidney can change your life.

Kidney day + 5

We'll blog more in-depth in the near future, but we just wanted to let you know that things are still going well. Julie is experiencing normal post-transplant discomfort that comes with healing, but already has seen a lot of kidney-failure problems go away! Amy Whyatt is also home and is doing well. We saw less of her in the hospital than we anticipated since both she and Julie spent a lot of time sleeping and talking with doctors, but Julie has been texting her during their mutual "house arrest," and she seems to be getting better each day.

In my post a few days before the surgery, I mentioned that we would be unavailable for communication for a short time. That time is pretty much over, so don't be afraid to call, Skype, or email if you'd like to talk to us!

Thanks so much for all of your prayers and your encouragement. We are really thankful!

transplant updates

Below are the updates posted during Julie's hospital stay via Twitter:

8:08 AM - 29 Apr 13:

Leaving for the hospital

8:54 AM - 29 Apr 13:

Amy is in surgery now

9:41 AM - 29 Apr 13:

Sitting in pre-op

11:31 AM - 29 Apr 13:

Amy is near the end of surgery and everything has gone well! Julie will start soon.

Kidney Kountdown: questions, schedule, and what to expect

We're still on target for a transplant surgery this Monday, April 29th! We've been counting down the days for a couple of weeks now. The questions we've gotten the most often are 1) "Are you excited?" 2) "Are you nervous?" and 3) "Do you need anything/how can I help?" The answer is a soft "yes" to the first two, and I'll answer the third in a little bit.

It’s for real.

It’s happening. In 17 days. I got a call today that all of Amy’s testing went well and we can move forward with the transplant! They have yet to decide which kidney to take out, but we are set to go for surgery on the 29th. This means only 17 more days of dialysis, 17 more restless nights (for me and Chase), and only about 200 more Tums* during meals. I have to say that I think I’m most looking forward to a full night of sleep and something delicious and chocolate (not followed by Tums!)

I’m so thankful to finally know for sure, to finally have an answer. And I’m so thankful to everyone who has helped us get to this point. There are people who have stored our things in Nicaragua, people who have let us stay in their home in the States, let us use their cars, provided phones for us to use, helped raise funds for our medical costs, taken care of me after surgery, taken me to dialysis appointments, treated us to meals, and hundreds, maybe even thousands of people who have prayed for us over the last 2+ years. It humbles us every time we think about how greatly people have loved and cared for us and how little we have done to deserve it all. And if all those things weren’t more than enough, now God has provided someone to step forward and give me one of their organs!! What an incredible picture of what Christ has done for us through his death and resurrection – mercy and grace for the undeserved.

So in a little over two weeks, I will be getting a third kidney! That’s right, neither of mine will be removed since there is no need to remove them and it would add additional risk, but the surgeons will add a third one in, probably near my right hip.

the best news yet

Yesterday, I heard from my potential donor that we are a match! We both had lab work done last Thursday and the results were negative (no reaction - a good thing) so she can continue with more in-depth testing now! She also said that there was an opening in the surgery schedule for April 29th, so if they can get her testing done before then and if everything looks good, we can do the transplant that day. They’ve penciled us in already! We are so excited to receive this news and so thankful to God for answering our prayers thus far. Please continue to pray for the testing – that all would go smoothly and we would be able to move forward with the transplant at the end of April!

You may be wondering who this “she” is, so I’ll be happy to tell you! Her name is Amy Whyatt and she attends our church in Norman, Oklahoma – Wildwood Community Church. Actually, I think I will let her tell you the story. Here is an e-mail I received from her on February 13th.

What is peritoneal dialysis?

I have this terrible process that I habitually go through with new information: 1) learn it, 2) immediately believe that I've always known it, and 3) wonder what's wrong with everyone else who doesn't seem to know it. This is the process I've gone through with peritoneal dialysis, but I think it's high time that I explain what it is and how it works using the simple layman's terms in which I understand it. If you are a medical professional, please refrain from judging my imperfect education and from harshly correcting any inaccuracies. In fact, maybe you should just stop reading now. For the rest of you, here is what I understand the process to be:

There are essentially two kinds of dialysis: hemodialysis and peritoneal dialysis[1] (hereafter referred to as hemo and PD, respectively).

Hemodialysis. Hemo is what most people have heard of/seen, and it's what they think of when they think of dialysis.

The journey continues…

It’s been a few weeks now since I started doing dialysis overnight and it has definitely gotten a lot better (praise the Lord!), especially in the last couple of days. The day after I wrote my last post, my doctor called and I told him about my strong dislike for dialysis thus far due to pain and lack of sleep. He recommended a few things so we took the dialysis machine back up to the dialysis center so that they could change the settings to something called “Tidal PD”. They also looked at the exit site for my catheter and thought it looked like it was trying to get infected so they had me start an antibiotic. Right before I started the antibiotic, my stomach was really sore for a few days, so much so that I couldn’t really use my abs at all. After I started the antibiotic, that pain went away, so I’m thinking that I had a tunnel infection, which is the area including the first few inches of the catheter underneath the skin. Anyway, the antibiotic is done now and I think my exit site looks and feels a lot better. I even got to take my first shower since the surgery yesterday! After a month without showering, it was kind of fun to wash my own hair! (Thanks to my hair stylist friend Kelly for washing my hair at the salon over the last month…you’ll have lots of free babysitting after little baby Skrap comes in the next week or two!)

Also, since the change to Tidal PD, I am only waking up once or twice in the night from the pain instead of five or six times. Unfortunately, there was air in the line last week, which went inside me and since air rises, it goes straight to the shoulders and is quite painful.

Lows and Highs

Well, the last time I updated the blog was on February 5th, the day I had the dialysis catheter placed. It’s been a little over two weeks since then, and a lot has happened. The rest of that week following the surgery, I continued to get sick. I wasn’t sure if it was related to the surgery and anesthesia or if it was just that my body finally remembered that a pretty crucial part was not functioning properly. In any case, I called my doctor on Friday and he said that on Monday when I was planning to go to the dialysis center to have my bandage changed, he wanted them to go ahead and start me on low-volume dialysis. Saturday and Sunday I ended up feeling great and thought I was “better”, but on Monday morning I was getting sick again.

My sweet friend Kelly ended up taking off work on Monday to accompany me to the dialysis center and Amy took me on Tuesday – I was definitely thankful to have someone there since Chase was still in Nica. I think if I’d gone alone, I would’ve cried the whole time, but instead I had someone to laugh with about the video on how to clean the catheter exit site or to be horrified with at the multiple pictures of infected exit sites. Anyway, Chase came home late Tuesday night and he came with me on Wednesday to the center. That afternoon, we went home with several boxes of supplies and the knowledge of how to do “manual” dialysis at home. So from Thursday to Monday, Chase played PD nurse.

…and then I went to Nicaragua!

I (Chase) just spent the last several days in tropical Managua, Nicaragua. Very few people knew about this beforehand since I wasn't sure if I would be able to go until just a few days before the trip. We didn't know if Julie would need to have the dialysis port put in (she did) and if so, if I would need to be there for it (technically no, but it would have been better if I had).

For several weeks I had been thinking about going and had been talking with our director Jeremy about when would be the best time, and then I found a great deal on Spirit airlines a small number of days before I actually got on the plane.

This was primarily a work trip—I've been working on creating a science lab-based curriculum for use in our kids' program (and in other churches with similar programs), and I wanted to help with designing stage props and other things to help give a sciencey atmosphere (background videos, sound effects, etc.). A lot of my ideas didn't end up working out, but I did paint a couple of large backdrops that I was pretty proud of, one of which broke a few days later.

I also met with Yeril, our  Nicaraguan kids' director to explain some ideas I had, like the use of a large periodic table of elements to talk about attributes of God (that's the thing that broke, but not beyond repair) as well as how to make strong bubbles and fog, and how to burn money without damaging it and stuff.

It’s done. And just beginning.

A lot has happened in the last couple of weeks! My creatinine was 9.6 a week ago, and I had lab work again today but don’t know the results yet. Since it became clear a few weeks  ago that the only realistic way to move forward with the transplant and have it paid for was to start dialysis (so that I would have Medicare), we were trying to figure out the perfect timing to have surgery to put in the PD (peritoneal dialysis) catheter. At that point, I was told there were no potential donors for them to start testing. So we wanted to wait to put in the catheter until they were at a point where they could start testing a donor. Less time on dialysis = better. Well, I called again on Friday (4 days ago) and was told that they had 8 packets turned in and that they thought they had some great candidates. Praise God for providing in such a huge way! (And thank you to everyone who found out your blood type or turned in a packet to be a donor!)

Since they were ready to start testing soon, it seemed it was time to put in the dialysis port. I called Friday but the lady who schedules surgery was gone and I was told to expect a call on Monday. Sunday after church (in Norman), Chase and I drove to Dallas to visit my dad in the hospital and see my mom and brothers for a delayed Christmas. Monday, I dropped Chase off at DFW airport because he is headed to Nicaragua for the week to work with One by One. He has several meetings lined up and plans to help set up and decorate for the new kids curriculum we are using this year. They finished their sailing curriculum last year and are now going with a science theme. Chase has been working really hard to design and write this new curriculum and he is really excited to go down and help them get started. So anyway, I dropped him off and started driving back to Norman. At about 5:30, I got a call back from the schedule lady, and I asked her if she had any availability for Tuesday (the next day) or Wednesday since that is when Amy Frederick (our home host) was able to take me.

One step forward, two steps back

I’ve been feeling really encouraged this week. I had lab work Monday and called in Wednesday for the results, and was pleasantly surprised that my creatinine had gone down slightly (8.9 to 8.81). I also went to see the general surgeon who would put in the dialysis port when and if it becomes necessary. I was encouraged to find out that it won’t be as restrictive as I feared. I won’t be able to swim, but it’s a little cold for that anyways. I’m been sleeping well, and with the exception of Tuesday morning, I’ve been feeling great. Plus, tonight Chase is taking me on a date to see “The Music of Michael Jackson” in OKC.

Then I got a call from the hospital this afternoon, and the insurance problem from last week is not “going to be fine” after all.

Kidney Transplant Update

 

It’s been a discouraging week. After a month without lab work and doctors appointments (due to the holiday season), I went to the doctor on Tuesday. Unfortunately, though I still feel really great most of the time, my kidneys are on the decline. My creatinine went from 7.8 to 8.9. Eek! My doctor said that I should definitely be feeling more symptoms than I do, so I am definitely praising God for how He is sustaining my energy and stamina. However, it’s almost certain that I won’t make it to the transplant without doing dialysis. Next week, I have an appointment with the surgeon who will put in the PD dialysis catheter when it comes time. I need to do weekly lab work and biweekly appointments with my doctor from here on out. So each week, we’ll ask the question again “Is it time yet?”