Labs today

Mayo called today for Dan to get new labs done. More waiting to get his current status. "Wait" seems to be all we do these days and appears to be God's answer to our prayers...please pray that we do it honoring God.

Debbie & Dan

Still waiting

Merry Christmas everyone! We've had a great time these past few days visiting with family, church Christmas Eve service, Swen in his Santa suit. We received many nice gifts, one being a web cam for Dan and my computers. No call yet from the hospital, so we still wait for a liver for Dan. FYI, Dan is doing ok, he's having a harder time concentrating and reading, the ammonia level must be really high. I'm waiting for a call back from Mayo to see when his next labs will be and for them to also check his ammonia level and if they need to change his meds.

Dan is still #2 on the waiting list and the hospital told us it could be "any time"...but if "any time" doesn't come soon, we will really need your prayers. Thanks!

Mele Kalikimaka,
Debbie and Dan

Dan is #2 on the list!

Great news! We found out this morning that Dan is #2 on the hospital waiting list and could get called for transplant any time now.

So, thank you for your continued support and prayers, and keep praying for "liver for Christmas" -- more importantly, pray for God's perfect timing. It would be wonderful if Dan would get the call while I'm in Phoenix (Dec. 20-Jan. 1). And please continue to pray for the donor and family, as someone will have to die for Dan to get his transplant. We pray the donor's death will be quick and painless, and that he/she and family are Christians. I am also praying that we will be given the opportunity to personally thank the donor's family (hospitals do not normally allow this).

Soaring like eagles,
Debbie and Dan

Our "viking boy" Swen

Here's some photos from my recent trip to Arizona - Swen is now 4 months old. http://picasaweb.google.com/DanandDebVanAlstine/NovemberVisit4MonthsOld.

What a great daughter I have ... when I opened the door at Dan's parents' house, there was Swen in the doorway in his carseat. Amy planned it all along to be there during my visit. Dan's parents took a well-deserved few days off to travel up north, so it was the 3 of us just like old times, watching Andy Griffith shows, great movies, joking and laughing, and the bonus of getting to spend time with Swen. I even volunteered to change dirty diapers. I can't imagine any other baby loved as much as Swen, except for how much Dan and I love Amy. What a beautiful young lady she is, if I do say so myself :).

Mahalo to everyone who continue praying for us and supporting us. It's been a long wait, but you have made it easier. Much love and aloha to everyone.

Debbie and Dan

Back on the transplant list!

Just got back from the doctor and great news...Dan is back on the transplant list! The kidney stone strangely enough has moved itself back up to the lower part of the kidney. And good news, it isn't that big after all. The urologist also said no more infection! We may have to deal with that stone sometime in the future, but for now we can move forward towards liver transplant. Not sure where Dan is on the list, we hope he can slide back in to his previous placement. The doctor will remove the stent on Wednesday afternoon.

Thank you so much for your prayers!

Soaring on eagle's wings,
Debbie and Dan

Surgery updates

Dan is out of surgery now. The ureter was too narrow to get the stone out, so the doctor inserted a stent to widen the tube. He should be able to go home today, if the bleeding stays under control. Dan needs to see the urologist in 2 weeks to determine the next steps.

So, please pray for Dan:
* He has a bacterial infection - the doctors think it's from the stone.
* Dan's having a lot of pain from the stone.
* Most important: the kidney stone and the infection are both showstoppers for liver transplant. I know you have been praying for a donor liver to come soon, however, now please pray that the donor liver will come AFTER the stone is removed and the infection is gone.

"He makes all things beautiful in His time..."
Debbie and Dan

My guys

Check out my handsome guys! Dan enjoyed the past week with Amy, Swen now 3 months old, and their dog Patch. Adam had a great trip to Omaha, training for his job at Kiewit, and the Lillys are back home in Yuma.

Here's Swen's first Halloween picture:

More pictures are here: http://picasaweb.com/dananddebvanalstine/swenat3months .

Thanks for praying for Dan on Monday, Oct. 22 - he has new labs so we'll find out his current status for transplant. Then he has surgery to remove the kidney stone, and he will be out for the procedure with an airway.

Thanks also to our church family for the lei and gift this morning for Pastor Appreciation Month. Dan will really enjoy the gift certificate to CBD. We love you all. Dan especially thanks you for the cards, which arrive at just the right time and bring loads of encouragement.

Much love and aloha,

Debbie

"Do I Know You?"

Dan visited the Urologist yesterday. He has a kidney stone which is blocking the ureter. The doctors said this could be a showstopper for liver transplant so it needs to come out. So, Dan is scheduled for minor surgery on Monday, October 22. The procedure should be outpatient, but that depends on what the liver doctors say. Under anesthesia, they plan to insert a scope and break up the stone with a laser (sounds like Star Trek to me). He will need to be monitored closely since his platelet count is so low and bleeding is a major concern.

Have you seen "Father of the Bride part 2"? This new adventure reminds us of the scene from that movie where Steve Martin, still groggy from taking sleeping pills, is at the hospital where his daughter is about to give birth, he sits down in the closest chair which is a wheelchair, and is mistaken for a prostate exam patient. He is wheeled in for the exam which I'm sure wakes him up rather quickly, then runs out of the room very offended and saying "Do I Know You?" - hence the title of this blog. I'm sure Dan will be thinking of this scene as they are preparing the "area" for the scope. I tell you the truth, finding humor in all this is part of what keeps us sane! Or as my boss says, we could teach a class on "Laughter 101".

Please be in prayer for this procedure, for the bleeding to be minimal, and for the bacterial infection to be gone. Thanks to everyone for your constant support, prayers, friendship, everything. We love you!

Laughing all the way,
Debbie

Antibiotics and other adventures

Yep, it happened. Dan's transplant coordinator called yesterday to say that one last test from a few days ago revealed a bacterial infection. Not sure where it's from, but we knew he has another kidney stone and will see the urologist next week, so maybe that's it. They don't want to wait until next week, so Dan is taking a strong antibiotic for 1 week. Dan asked for prayer that this treatment will get rid of the infection. Praise God his legs are better, the blisters from previous "leaking" are healed, there are a few other spots they are watching and he continues to wear the compression wraps.

This has been a busy week for Dan and family. Roxanne (Dan's youngest sister) and her husband Joel are moving the Colorado this weekend, and Dan and his folks have been at their house helping them pack. Joel has this great job opportunity and they both are ready to live in cooler weather. I am so thankful for God leading Roxanne and Joel back together after so many years, both of them love the Lord and their dogs, and are crazy about each other. Praise God for cell phones and email to keep everyone connected. R & J, enjoy this new adventure, and I want you to know how much I love you both. Keep a spare bedroom open for us to visit!

"Therefore, my beloved brethren, be steadfast, immovable, always abounding in the work of the Lord, knowing that your toil in the Lord is not in vain." 1 Corinthians 15:58 NIV.

Debbie

More updates

I'm back in Phoenix and having a great time with Dan and family. We saw the new movie "The Game Plan" and we highly recommend it to everyone - no swear words an d a funny, touching movie. We have enjoyed eating out at Olive Garden, and tonight is mexican food at Manuels - yay! It's getting cooler here also, finally out of the 100's. Dan bought a new Timex watch and now he has a new motto: lika a Timex, Dan "takes a licking, but keeps on ticking."

Thursday, Dan had his updated labs and imaging, then we met with the transplant coordinator and the doctor. His labs and MELD score are the same as they were the end of June and he's in about the same place on the waiting list. The urinalysis from the ER trip on Monday showed a slight bacterial infection. The imaging showed another kidney stone, so they think that's what caused the bacterial infection. So they will be referring Dan to the urologist to see what can be done about the kidney stone. The doctor also confirmed that Dan needs to stay here close to the hospital, the doctor's exact words which they said twice were "you are very sick." That's a little sobering to hear from your doctor. So, we continue to wait.

We ask for your continued prayers for Dan:
* The kidney stone and slight infection
* He is experiencing extreme tiredness from the liver disease and also a harder time breathing.
* For strength and endurance to continue waiting and living apart from each other.

"They that wait upon the Lord...shall mount up with wings as eagles...",
Debbie & Dan

Answered Prayer, but keep praying

Thank you so much for praying. Dan just called. ER ran many tests and so far they haven't found any infection. More test results are pending, some will come on Thursday.

Thanks again to our prayer warriors.

Rejoicing,
Debbie

Urgent prayer request

Please pray for Dan today. This past weekend, he ran a fairly high fever off and on. He called his transplant coordinator this morning and she told him to go to Mayo's ER immediately, since his immune system is weak due to the liver disease. He has been fighting a cold for a while, so the fever could be from that, or we fear it could be a sign of infection from the leg problem. I will update everyone later today when Dan calls me back, but in the meantime, we sure appreciate your prayers right now. I will be flying to Phoenix on Wednesday night to join Dan for his Thursday status appointment with the liver doctors. I'll be back in Hawaii Sunday night.

Thanks,
Debbie

New Development - Please Pray

We have a new prayer request, one that will be ongoing now until Dan gets his new liver. The doctors told us this might happen, but I for one thought it could never happen. Never say "never." Dan's legs have been extremely swollen and it appears the skin has stretched as far as it could, because now the fluid is seeping out through about 5-6 places on each calf. "Seeping out" is an understatement, more like puddles of fluid. He went to the doctor at Mayo who confirmed this is what is happening, and may continue until he gets a new liver. Our Kaiser transplant coordinator suggested that he elevate his legs above his heart as much as possible. Mayo gave him 2 medications, one gets put directly into the open blisters on his legs to eat away the dead skin in the blisters. The other med he puts around the wounds to dry out the blisters to keep them from infection. He also has to wear compression wraps on both calfs, which may not be that helpful since the swelling goes up to his thighs.

Please join us in prayer that God will protect Dan from any infection. When a liver becomes available for Dan, he must be in good health with no infections. If he has a bad infection or becomes very ill, he could be put on "Status 7," meaning he will "lose his turn in the waiting line" and once the infection is gone, he "goes to the end of the waiting line." As of today, he's #5 in line, and he'd like to keep his place "in line." Thanks for your prayer support!

God is in control,
Debbie & Dan

Labor Day Visit

I had a great time in Arizona this past weekend. It was so good to see Dan again after 2 months, which seems like a short time when I see it in writing, but feels like 2 years. Dan had new labs last week. His MELD is 19, down from 20 last month, but still #6 on the waiting list. Next labs will be done before the end of September and we asked them to check his ammonia level again. He's taking a new med to reduce the ammonia level which is easier on his stomach, and we hope it is controlling the ammonia as well. Dan said he's feeling about the same and continues to miss everyone at home in Hawaii. He is grateful for all the emails, blog comments, letters and cards from everyone (read his new journal entry on http://www.linesfromdanielsden.blogspot.com/ or click on the link on the right). We enjoyed eating out, going to see the movie "Ratatouille" (great family movie by the way), and just hanging out together. We got to watch some favorite tv shows together like we do at home, shows like Frasier, Andy Griffith Show and Dave Letterman. I got to swim with my niece and nephew and their mom Debbie, Dan's sister. Only when you swim in Phoenix at 110 degrees, the pool water is pretty much like a bathtub, but at least it's wet.

I got to spend time with Amy and Adam and my grandson Swen, still the most beautiful baby on the planet. More pictures are posted at www.picasaweb.google.com/dananddebvanalstine. Adam has a great new job with Kiewit maintaining all the big equipment and also learning purchasing and working with vendors. Adam took us on a drive around the entire job site which is in California right across the border from Yuma, Arizona (where they live now) - what a fun time! Amy is enjoying being a stay-at-home mom for awhile. Once Adam's training is complete, the company is moving them to Portland, Oregon. And Swen is growing like crazy! His eyes are open alot now, gorgeous blue eyes. He now has a double chin (from me, most likely). It was so much fun playing with him, the dog and cat, and my kids Amy and Adam.

It was a short trip, 4 days total, but I enjoyed every minute and hope to visit again in a few months. We are so grateful to our Mililani Baptist ohana for your love and support. And, thanks Roxanne and Vern for the rides from the airport when I get in at midnight and leaving the house at 5:45am for my 8am flight back. Vern, Karen, Roxanne & Joel, Debbie & Tim & Alyssa & Josh (Rick, I miss you)...I love you all. Thanks for taking care of Dan. You're the best.

The joy of the Lord is my strength,

Debbie

New pictures of Swen

Click on the link for some new pictures of Swen. He's almost 2 months old now and he's still the most beautiful baby on the planet. I can't wait to see him (and his mom and dad) this coming weekend.

www.picasaweb.google.com/DanandDebVanAlstine/PicturesofSwen

Gramma Debbie

Here I come!

I am sooooo excited! I am going to spend the Labor Day weekend with Dan! I'm flying out on Friday August 31st and flying back home Tuesday September 4. One of those days, I also hope to drive to Yuma to visit Amy, Adam and the most beautiful baby, Swen. A short trip, but I am grateful for any time I can be with them. Along with a nice visit with family, I am hoping for a dinner at Manuels, our favorite mexican food restaurant. I already know what I want to order...green corn tamales and iced tea, and plenty of chips and salsa. Mahalo to our Mililani church ohana for your gifts so I can visit Dan occasionally.

You might get a kick out of this. I've been enjoying reading my Bible and praying right before bed each night. My cat, Lovey, also enjoys it. She sits right next to me on the bed staring at me while I read out loud and pray out loud. When I'm pau, she is still staring at me, I tell her goodnight and when I turn out the light, she goes to the foot of the bed to sleep. Here is a picture of Lovey, looking like the queen of the house.

Blessings,
Debbie

Visit from the Clay ohana

Dan enjoyed the surprise visit from the Clay ohana from Mililani on July 31st. Here are some great pictures of the Patrick, Annie and the kids with Dan and his parents.

Dan is #6 in line!

I spoke to Dan's transplant coordinator at Mayo today. Dan's new MELD score is 20, same as the end of June. She also told us Dan's place in the transplant "waiting line" - Dan is #6 in line, meaning 5 people are ahead of him as of today August 6th. Lyndsay also told me that if a donor liver became available that was not a good match for the 5 patients ahead of him, that it could be offered to Dan. While no one knows when a liver will be available, Lyndsay confirmed that the wait is in terms of months now, not years. So, our prayer request today is for Dan to get a new liver for Christmas or earlier. But of course, we mostly want God's timing and His will to be done. Lyndsay also said that the hemotologist has given the go-ahead for the Phoenix blood bank to collect the blood needed for Dan's transplant, that the antibody situation is not enough of a factor to be a showstopper, nor is any plasma filtering or any other procedure needed. This is a big praise, we can move forward now to transplant.

Dan has been keeping busy with his laptop and wireless internet connection. He is spending several hours each day listening to online Bible studies from Chuck Swindoll and others. He is also writing. He has posted a number of journal/devotionals now on http://www.linesfromdanielsden.blogspot.com/ with more to come. Dan hopes these will also encourage you in your walk with the Lord. Feel free to click on "comments" at the end of each entry and let us know your thoughts.

Some have asked me (Debbie) how I'm doing. For me, it's one day at a time, some days are better than others. I am being loved through each day by my co-workers, my church ohana, my Mom, and many Christian friends all over. Dan and I talk by cell phone at least once a day. Nights are the hardest, you can pray for both of us to be able to sleep at night. I am amazed at how much I have grown spiritually through all of this. I have so much to share, but that's for the next post, or for having coffee together sometime.

In His Amazing Grace,
Debbie

Test results and a new blog feature

Dan received some good lab test results today from the hematologist. Last week, they did labs for the anemia to determine if the cause is external (like a toxin or poison). Good news, these tests came back negative. So the anemia is probably caused by the spleen/liver disease and we await the hematologist's next steps. This is also good news because if the cause was external, his MELD score would go on Status 7 until the toxin was eliminated, then he would go back on the regular MELD list but be at the bottom of the waiting list. Long story short, Dan remains in the same waiting line as before, pretty close to the top they tell us. Tomorrow (Wed. August 1) he goes for labs to re-MELD, or check his MELD score again. This needs to be done about every 3 weeks now.

Check out our new blog feature "Lines from Daniel's Den", where Dan will be sharing some personal thoughts with you. There is a link on the right side of your screen, or you can go directly to it at http://www.linesfromdanielsden.blogspot.com/.

Blessings,
Debbie

Updates

* Dan thinks the kidney stone has passed, at least the pain is gone!
* The hemotologist confirmed Dan has Hemolytic Anemia (see http://www.nhlbi.nih.gov/health/dci/Diseases/ha/ha_whatis.html). Dan will be having more labs done tomorrow (July 27) in hopes of finding the cause. He should know results sometime next week. Chances are this is from his enlarged spleen. Removing the spleen is a good cure, however, it is risky for Dan due to his liver disease. This condition needs to be figured out before transplant can happen, as Mayo wants to collect the blood needed for the transplant surgery. If you'd like to read about this, here's another good site: http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/Atoz/ency/splenectomy.jsp.

Dan and I want to express our heartfelt mahalo to our Mililani Baptist Church ohana for your generous support and love shown to us at last Sunday's business meeting. Who knew a Baptist church's business meeting could be such a "love fest"? You are a one-of-a-kind, special people and we are honored and humbled by your grace to us.

Dan has lots of time and would love to pray for you - email him at dvanhawaii@yahoo.com (prayer requests will be kept confidential).

"... set your hope fully on the grace to be given you when Jesus Christ is revealed." 1 Peter 1:13b

Debbie

Updates on Dan in Arizona

I wanted to update everyone on Dan's health now that he has temporarily relocated to Phoenix, Arizona awaiting liver transplant. You may already know some of this, but I am telling the whole story for those who may not know.

About 5 or more years ago, Dan was diagnosed with an inherited genetic condition called Alpha-1 Antitrypsin Deficiency (see http://www.alpha1.org/ for more info). This predisposes him to lung and liver disease, and he has both. Dan was the first alpha-1 patient Kaiser Hawaii had seen, now there are several. For the lung disease (emphysema), Kaiser had prescribed a weekly IV treatment called Prolastin, the disease can't be cured but the IV treatment could hopefully slow down the progression of the emphysema. There is also no cure for the liver disease (cirrhosis), the only "cure" would be a liver transplant. You only have 1 liver, and you can't live without it, so transplants are only done on the sickest of patients. Dan insists that God has a sense of humor, because he has liver and lung disease and has never drank or smoked! So Dan has been having regular lab tests, CT scans, ultrasounds, etc. to monitor the progression of the liver disease.

Dan had his gall bladder removed in February 2006. This was the first time the doctor or surgeon got to see Dan's liver. They determined it was time to get on the National Transplant List (see http://www.unos.org/ - it will really open your eyes to the great need of donors). Kaiser informed us that they do not do this surgery and that we would need to go to the mainland. Yes, St. Francis Hospital was the place to go in Hawaii, however at that time the hospital was in the process of being sold and Kaiser would not work with them. We were given hospital choices on the West Coast and also Arizona, which we took in a heartbeat since Dan's parents and sisters live there. Dan's parents live 10 minutes from Mayo Hospital in Phoenix. We were also told that when a liver becomes available, Dan would need to be within 4 hours from the hospital, and with Hawaii being 5+ hours away, he would need to temporarily relocate to Phoenix when he was close to the top of the waiting list. And once again, Dan is the first liver transplant candidate that Kaiser has sent to Mayo Hospital in Phoenix, coincidentally the hospital that first discovered Alpha-1.

The waiting list is determined by the patient's MELD score, made up of 3 different lab tests. The higher the number, the higher you are on the list. Dan's MELD has gone from 13 to 19 in the past. On June 27, 2007 we went to Phoenix for his 6-month checkup at Mayo and his MELD was 20 along with other changes in his labs, indicating his condition is progressing. The doctors informed us that Dan was very close now to the top of the waiting list there, and it was time to consider relocating. After 2 other lab tests to confirm the new MELD score, much discussion and prayer, we decided this was God's timing. Dan would stay in Phoenix and I would return to Hawaii to continue working; praise God for my mom who lives with us; I'll fly to Arizona when he goes into surgery. We don't know when the surgery will take place, Mayo tells us it could be within 6 months. After surgery, if all goes well, he will need to remain in Phoenix for 6-8 weeks until the doctors give him clearance to return to Hawaii. He will then need to return at least once a year for checkups.

So, Dan is now living with his parents, going to various doctor appointments, getting his MELD and other labs checked periodically, and anxiously waiting for his laptop and other personal items to arrive. He is also attending his parents' church, First Southern Baptist Church of Scottsdale (http://www.fsbcs.org/) but he misses Mililani Baptist (especially his MasterLife class).

Here are the most current updates:

* He has a kidney stone, maybe 2, trying to pass.

* Mayo's pulmonary doctor will not be giving him the weekly IV treatments, recognizing that liver transplant is "imminent" and with a healthy liver, these treatments would no longer be needed.

* Mayo did some blood typing and found Dan is greatly anemic, due to some unusual antibodies in his blood which kill off his red blood cells. They gave him a transfusion, 2 units, to quickly get him back on track (or as Dan says "fill 'er up"). He sees the hemotologist Thurs. 7/19 for a status checkup.

Mahalo to our Mililani Baptist and Hawaii Pacific Baptist Convention ohana for your love, prayers, support, hugs, everything. Thanks to both of our families for your never-ending love and support. Thanks also to our Christian family all over the place (we get cards from churches we've never been to or heard of...praise God for His network of believers!)

"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

Debbie

Swen Michael is here!

Isn't this the most beautiful baby on the planet? Welcome to our first grandchild, Swen Michael Lilly, born on July 1, 2007 at 12:46pm, weighing 6 lbs. 8 oz. and 19-1/2 inches long. His mommy Amy did a fabulous job and Swen's mommy and daddy love him so much, not to mention his grandparents.

Swen Michael Lilly!

In 4-6 weeks, we will be grandparents! Our daughter Amy and her husband Adam are soon to be parents of their first son, Swen Michael Lilly. Due date is actually July 28, however Swen is a big baby according to the doctor and will probably come early. Given the heights of both Van Alstine and Lilly families, no one is surprised. He is already cute at 6-months in the womb. Thank you, Swen, for reminding us how precious life is, and how we are "...fearfully and wonderfully made." (Psalm 139:14 NIV) How can anyone, after seeing this photo, think that he is just a "fetus" and not a living human being? Thank you, God that"...like an open book, you watched me grow from conception to birth; all the stages of my life were spread out before you, the days of my life all prepared before I'd even lived one day." (Psalm 139:16 The Message)

Praises and Prayer Requests

Praises!

* Marie, Deb's mom, came home today from the hospital. She had another angiogram and stent put in. Other than soreness and tiredness from the procedure, she feels great! God provided His "peace that passes all understanding" for all of us!
* God provided payment for our airfare for Dan's 6-month checkup coming up in June (see below)!

Prayer Requests: Dan's 6-month checkup is scheduled for June 27 at Mayo Hospital in Phoenix. We'll be there that week. We appreciate your prayers:

* Comfortable travel for Dan
* Good health for Dan that week
* For Dan to be higher on the liver transplant waiting list, which requires him to be sicker.

Ephesians 3:20-21,
Dan & Deb