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.