August 4 updates

Can't believe it's August already. Dan's MELD is 29 and he's still #1 on the hospital waiting list. He's been weaker the past several days, walking and talking a little "hamajang" (not quite right) so Mayo will start checking his red cell count tomorrow, if it's low again he'll get another transfusion. He's also having more bouts of stomach pain after eating, complications from the cirrhosis. We're thankful his legs, still swollen, are not leaking anymore, though we continue to watch a few blisters developing. Per Mayo, on the days he sleeps most of the time (another complication of the encephalopathy from the high ammonia levels), he needs to walk at least 2 times a day for at least 10 minutes each. We've done this, walking laps in the house. Dan is pretty tired these days, so we only get out on Tuesdays and Fridays to Mayo for labs, then breakfast at the cafeteria. When Dan's folks are home, I can run out to Walmart or the mall for a few hours, and when Dan's sister Debbie and the kids come over to swim, I'm out there with them - love it! Praise God for Wally and Lorrie and our Mililani Baptist ohana that continue to love on my Mom in Hawaii.

I've been thinking about this long wait, how I don't get God's timing. God reminded me of an important verse describing an important part of His character: "But do not forget this one thing, dear friends: With the Lord a day is like a thousand years, and a thousand years are like a day. The Lord is not slow in keeping his promise, as some understand slowness. He is patient with you, not wanting anyone to perish, but everyone to come to repentance." 2 Peter 3:8-9 NIV. A good friend reminded us that God is surely continuing His work in and through us, these verses confirmed that. In fact, we've been praying for the donor and family to be Christians, these verses made me think that what seems like God's slowness may actually be His patience and plan to bring the donor and family to Himself before the transplant. At least I pray this is true. So we continue to wait, rejoicing in God's amazing grace and love and His perfect plan for our lives.

Aloha from the desert,
Debbie and Dan

Doctor's Appointment this morning

We met with Dr. Douglas this morning at Mayo. Pretty uneventful - he confirmed Dan's MELD is 31 and no changes to his meds. So it's labs tomorrow and Friday as usual and they will keep us posted on his MELD and if any med changes are needed. Dan's next CT scan will be in August, but as Dr. Douglas said, "we hope you'll get your transplant before then", so Dan is still #1 in the hospital and we continue to wait for God's provision for a liver and pray for the donor and family.

And God is still providing. Just when I was wondering about our finances now that I am on temporary leave of absence from my job, unexpected checks arrived in our mail this weekend. God is good!

Aloha from the desert,
Debbie and Dan

Monday, July 21 doctor appointment is on!

We got a call from Mayo after Dan's morning labs - we DO have a Monday doctors appointment, this time to meet with Dr. Douglas, the director of the liver transplant department. Dan's MELD today is 31, ammonia is around 145 which is high but average for Dan. He also has a few more blisters on his leg that opened up this afternoon, so it's back with the medicated bandages and trying to elevate his legs more often.

For my birthday today, we had portraits taken, since last month was our 30th anniversary and we haven't had portraits made since our wedding. Here is our favorite.

Aloha from the desert - Dan and Deb

MELD score now 30, no doctor appt. on Monday

We spoke to Susan at Mayo today, she's the liver transplant coordinator's assistant. She told us as of yesterday's labs (July 15) Dan's MELD is 30 and she expects it to be even higher by Friday's labs, we're not sure why. For a sick guy, she said his other labs look good and the doctors have decided NOT to schedule the appointment on Monday July 21. She said they discuss Dan at their Wednesday team meetings, he's the first one they talk about, he is #1 on the hospital waiting list, and they don't expect to need to see him for an appointment for 3 months unless something extreme happens like a high fever, bleeding, stuff like that. As Susan told Dan, they don't expect to see him again until (not if, but until) transplant. They still talk like it could be any time now. And they may add one more day a week to come in for labs, we'll find out on Friday, that would make 3 days a week for labs.

So we keep waiting, hopefully not much longer. Thanks, Tracy Turner, for your last comment on Debbie's blog that reminded us to "keep looking up." What a wonderful reminder for all of us.

"I lift up my eyes to the hills—where does my help come from? My help comes from the LORD, the Maker of heaven and earth." Psalm 121:1-2 NIV

Debbie and Dan

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Quick update: Dan's current MELD score is 26, but as you know this can change from day to day. We are not sure anymore where Dan is on the waiting list, 26 is high enough to still be #1 at least on the hospital waiting list we think. Dan's next doctor appt. is July 21, we'll get more updates then. In the meantime, it's labs every Tuesday and Friday morning, medications throughout the day and evening, and walking at the mall or at Walmart several times a week.

This past week, most days were pretty good for Dan, he had a few rough days with more mental blips and leg and hand cramps. We went to church with Dan's folks this morning, first time Dan's been able to go to church in a long time, and it was such a blessing. Made us really miss our church ohana.

What a friend we have in Jesus,
Debbie and Dan

Happy July 4th

Dan is feeling pretty good this week, not very many mental blips lately which is nice. He's still pretty tired but he's able to eat well (hepatic diet-low protein; low sodium; low sugar) and we've been out almost every day this week walking either in Walmart or some other store. We've discovered Sprouts, a fabulous natural food grocery store, and have been eating lots of fresh fruit and veggies (yes, Dan is eating veggies now, though still not eating peas). We're still waiting for that phone call for transplant - Dan's even got his overnight bag packed and by the door so when we get the call, we can fly.

Happy First Birthday to Swen! We were so blessed to be there for his birth, and then to be here for his first birthday on July 1st. Amy, Adam and Swen came to visit on July 1st and we had a little party with a Winnie the Pooh theme. Dan's sister Debbie and her son Josh came over. What a fun time! You can see more birthday photos at http://picasaweb.google.com/dananddebvanalstine/SwenSFirstBirthdayJuly12008.

Aloha from the desert,

Debbie and Dan

June 24 updates

Despite the 110+ heat, it's been a good 2 days. Dan is feeling pretty good, he feels no pain except for nightly leg cramps, and he's feeling happy. It's nice to be back together again after so long. He has labs twice a week still, his MELD is still 34 so transplant could be any time. Dan even started packing a hospital tote bag so when the hospital calls, he'll be ready. Praise God, no infections, no blood clot in the shoulder, and his leg swelling is better, so we plan to start walking a little each day inside the nearby mall (too hot outside) to keep up his strength for recovery after surgery. We also started reading scripture outloud to each other, my good friend Laura is praying Psalm 20 for us, so we've started reading and discussing this one. Dan's folks are looking forward to a trip on Friday for a family reunion in Minnesota, they'll be gone for a little over a week. Amy, Adam and Swen are coming up on July 1st for a few hours before they take off to Texas for a few days to visit Adam's brother and sister-in-law. July 1 is Swen's first birthday, can't wait to hug him. Stay tuned for more updates and we really feel your prayers.



Aloha from Phoenix,

Debbie and Dan