Beam us up, Scotty...

What a terrific weekend! And a weekend of firsts since Dan's surgeries.

On Saturday, Dan and I along with Debbie and the kids went to the Arizona Science Museum in downtown Phoenix, nearby the Convention Center - we saw Star Trek: The Experience! This is heaven for Star Trek fans like us - memorabilia, props, costumes, sets, shuttlecraft simulator, and more (check out http://www.startrek.com/custom/include/community/tour/virtual). We all took turns sitting in the captain's chair on the bridge set of Next Generation (actually, I took several turns). This was the first big "field trip" for Dan, transporting and using his wheelchair and being around a big crowd of people.

Today, we went with Dan's folks to church, Dan's first time back since his transplant on Aug. 25. It was a wonderful time of worship and thanksgiving, church members were praising God for answered prayer for us. And another first, Dan managed all his morning preparation by himself, with just a little help from me. After church, another first, we went to lunch at The Cheesecake Factory. If you haven't been there, you must go. I don't know if the menu is the same at all locations, but this location's menu was about 40 pages long! So many choices, you could eat here every day and not make it through the menu.

Dan's next Mayo visit is Tuesday at 4pm for outpatient rehab. Thanks for your prayers for Dan to regain all his strength, he is doing better each day. And fyi, his mental challenges are gone, he's back to normal (for those of you who know Dan, I know you are laughing out loud).

Thankfully,
Debbie and Dan

Friday, Nov. 28th updates

It's been a busy week. Dan's had something to do at Mayo every day this week, except for Thanksgiving day. Labs, PT, pacemaker check, and follow-up with the liver doctors and all went very well. Dan's new liver function is about as perfect as can be, his creatinine is up a little and his prograf level is down a little, so meds are being adjusted. Dan may have a intestinal virus, we should hear the test results tomorrow and then get antibiotics. The next think Dan and I want to work on is a thank-you letter to the donor family. We will give the letter to Mayo to send to the family; the family may or may not respond, again via Mayo to us. After a certain amount of time, it is up to them and us if we actually know each other's names and/or meet. We hear that sometimes the donor and donee meet, other times it is too difficult for one or the other family. We'll send the first letter, then trust God with what happens next.

Thanksgiving was truly a time for giving thanks. Dan's sister Debbie and the kids Tim, Alyssa, and Josh were with us and Dan's dad asked Dan to pray. It was emotional as Dan shared in his prayer that God had granted the desire of his heart, to spend the holidays with family. It was particularly poignant since we had been told years ago right after Dan was diagnosed with Alpha-1 that the doctors were not sure if Dan would see his 50th birthday (next week, Dec. 5); then we were told by Mayo doctors the day after his transplant that Dan probably had only a few weeks left to live.

Today was especially productive, Dan and I dove into cleaning our room, tossing a lot of junk we've been holding on to, packing more boxes, clearing out his desk, my nightstand, and the closet shelf and rearranging the stuff to keep that was strewn all over the place. It will be much easier to pack everything for returning home (still planned for January). Tonite we are relaxing and watching 2 great holiday movies - Polar Express and The Family Man - if you haven't seen these, run right out and borrow them.

The cleaning we did today made me think about how our spiritual lives often need cleaning, how we need to confront and confess sin, rearrange priorities, get rid of unhealthy habits to make room for God and His will for us. When we do this, our lives will truly reflect God's glory, people will see Jesus in us, that's what it's all about.

Thankful,
Debbie and Dan

Great Day!

What a great day today was. Except for the early morning. Dan did great, he likes mornings, but I don't do mornings well and found myself racing to get ready and out the door, but we got to Dan's PT appointment on time. Dan's therapist is Richard, and he worked Dan hard. And Dan loved it. Dan's goal is to be able to walk without the walker, so it's a lot of leg lifts, squats, stretches, and just walking. Dan has "homework", exercises he has to do-5 sets twice a day. We'll see Richard twice a week, next time on Wednesday.

We had a little break between PT (8-9am) and Pacemaker check (10:15am) so we had breakfast in the cafeteria. A nice rest, although PT says "rest is rust", yikes.

Pacemaker check went well, Dan's heart is in sinus rhythm and pacemaker is working fine. Dan has 3 more weeks until he can lift more than 8 pounds and lift his left arm above his shoulder.

We boxed up more books to send back home, now we can finally see the carpet in our room. Tonite we're watching the finale of Dancing with the Stars - we think Brooke will win, but we love to watch Warren.

And we got a call from the disability insurance agent today, who told us they will be sending us a sizable check for monies they should have been paying us (it's a long story), and mahalo to Pastor Derrick for all you did to make this happen. God spoke to Dan in the hospital, clearly telling Dan that He would provide for our every expense during this journey, and this unexpected gift looks like the beginning of God's fulfillment of his word to Dan. We can't wait to see how God will provide for the rest of the bills, including the 6-figure charge for Dan's liver transplant.

"God is the one who began this good work in you, and I am certain that he won't stop before it is complete on the day that Christ Jesus returns." Philippians 1:6 CEV

Debbie and Dan

Friday, Nov. 21

Today was a pretty good day, Dan is feeling well and was able to walk out to the dining room table for meals, and he enjoyed reading "The Grand Weaver" by Ravi Zacharias and writing a new blog entry (www.linesfromdanielsden.blogspot.com). We also started packing a few boxes of books to FedEx back home, we figured if we start now a little bit at a time, it will be easier in the long run. We also enjoyed listening to CDs, in particular, Tony Bennett's new Christmas album, and Three Wooden Crosses (inspirational songs by country artists -- thanks for this CD, Karen and Calvin!). Dan's first follow-up appointments are on Monday - 8am outpatient PT and 10:45am pacemaker checkup.

Aloha from the desert,
Debbie and Dan

Home again!

It's Thursday, Nov. 20 and we're home from the hospital again. Sorry for not updating since Sunday, I haven't been home until today.

Dan's heart procedure on Monday went very well. They did the cardiac ablation and then implanted a very high-tech pacemaker. It's called an ICD (implantable cardioverter-defibrillator) and it has 2 leads into the heart and 1 lead on the outside of the right ventricle. It will keep Dan's heart from going too fast or too slow. He's doing very well, he seems to have more strength and is breathing easier. The pacemaker is permanent, along with taking coumaden (a blood thinner).

The liver doctors decided on Tuesday to do the ERCP procedure (removal of the bile duct stent). This procedure also went well, it is done endoscopically so not real invasive. They removed the stent along with a biliary stone and put in another stent which will also have to be removed in a few months. Dan was fine and able to eat a regular dinner that night, he just had a scratchy throat.

Wednesday was a rest day, meaning no procedures, but PT and OT were back to get Dan up and around. He was able to walk a lap around the nurses' station, he hasn't done this in weeks. Yay, pacemaker!

Today was very busy, with doctors' last rounds with Dan, PT and OT getting in a few more exercise times including the rehab gym, removing the PICC line and catheter, discharge instructions, prescriptions for more meds, we ended up leaving around 4:30pm.

Dan now has outpatient OT and PT twice a week, labs twice a week, pacemaker check-ups a few times in the next month, cardiologist follow-up, liver doctor follow-ups, dietician follow-up, you name it. And now we start trying to follow the low sodium diet at home, along with fluid restrictions, he only gets to drink one 16 oz. bottle of water in a 24-hour period. This is sure different from the instructions after transplant, to drink 6-8 bottles of water a day. They tell us it is a different way to get the excess fluid out of his tissues and into the plumbing, he gets a huge amount of diuretics and drinks very little fluid. Go figure. He also has new instructions and restrictions with his pacemaker, like no more MRI's, no airport security systems, cell phone and ipod on the right side, etc. and my personal favorite...no arc welding.

Thanks for your prayers and support. Continue to pray for Dan to regain his strength, and for me and Dan's folks to stay healthy, and for all of us to continue living together in harmony and love...it won't be long now until we hele on home.

Aloha,
Debbie and Dan

Prayer Request

Things change so quickly.

The round-the-clock diuretics seem to be working, fluid is getting through the plumbing much better. They put compression stockings back on Dan's legs to force the fluid up and out, which is working but they are a little painful, so they plan to switch to ace bandages this afternoon. And he is getting used to his low-sodium diet.

Dan's heart went back into afib last night while he was sleeping. This is the first time it's done this during rest, the other times it was during exertion. So, the teams have decided to postpone the ERCP (procedure to remove the bile duct stent) in favor of the cardiology team's recommendation to first do a cardiac ablation and pacemaker implant (www.heartrhythmcenter.com/myweb2/av_nodal_ablation2.htm has a good explanation of this.) Surgery is scheduled for Monday afternoon, we don't know the time yet, and it will take a few hours. This is a fairly common procedure and is minimally invasive, and hopefully once his heart is pumping normally that it will help the kidneys along. And yes, the pacemaker will be permanent, the battery will need to be replaced, usually after 5+ years, depending on the rate it "paces".

Thanks for your prayers for Dan tomorrow, as always. Life is hard, but God is good.

Aloha,
Debbie and Dan

Thursday, Nov. 13 - the saga continues

Dan is still in Mayo. He is breathing better, and his new liver is working well, that's the good news.

Yesterday's chest xray showed his lungs are worse, meaning more fluid surrounding the lungs. This morning's labs showed elevated heart enzymes, elevated creatinine level. So 3 teams are working on this - liver transplant, cardiology, and nephrology (kidneys).

The main problem keeping Dan in the hospital is the fluid that won't go away, resulting in shallow breathing, swelling in his abdomen, legs and feet. Dan's kidneys are not functioning well, and we were told this morning that he has had kidney disfunction even before transplant, which makes sense since he had so much leg and feet swelling for so long. There are several solutions to this problem, one they tried on Sunday, to drain the fluid via thorocentesis and pericentesis. The doctors do not want to continue this, as it is risky for Dan's liver. Another solution is meds, this is the plan now, to give Dan a high dose of lasix round the clock now for 24 hours, along with the metolazone, these work in different parts of the kidney. We also learned that Dan's kidney problem may not be "cured" even after the fluid is under control. Which brings me to another solution - dialysis and kidney transplant - they tell us this would be considered if nothing else worked and it is a decision to be made "way down the road." Let's hope so. The doctor said 5-10% of liver transplant patients need this done, since the liver disease can cause kidney problems.

The echocardiogram showed Dan's heart is only pumping at 35% (normal is 55-60%) so that's not at a danger level but it is a decrease. This could be caused by the anti-rejection meds Dan is taking, along with the stress and trauma of Dan's transplant. The cardiologists will follow on Dan's labs, they are more concerned with getting the fluid moving through the plumbing, and more tests may be needed once this is better, including a nuclear stress test.

The liver doctors changed one of Dan's anti-rejection meds (cyclosporin) to prograf last night, in case the cyclosporin is hurting the kidneys. Both can do so, but prograf is less likely to do so, but it has other side effects including confusion, so I'll be watching this carefully.

Dan and I both were busted yesterday for Dan eating way too much sodium. He needs to be on a low-sodium diet, which means less than 2 grams (2,000 mgs) of sodium a day, or about 600 mgs. per meal. I was eating salad with honey mustard dressing last night and noticed the sodium in the dressing was around 550 mgs. by itself, that puts this in perspective. Or as Dan says, he is allowed to eat air. The dietician gave me a booklet on how to cook and eat with this limitation, and the nurse is examing everything he eats and drinks now. Between this dietary restriction and others for transplant patients, life as we knew it is now over - aloha fast food, pizza, shoyu, soda, salad bars, salsa - and hello to no-salt or low-salt everything, Mrs. Dash seasonings, and homemade meals.

All this to say they are getting Dan healthy enough to do another procedure on Monday, to remove the stent they put in his bile duct about a month ago, and put in another stent if needed. So not sure if Dan will get to come home before that.

This is all pretty depressing, and Dan and I have been praying and trying to encourage each other. Dan occasionally talks in his sleep, most of the time I ignore it, but last night I enjoyed listening to him PRAY in his sleep! He doesn't remember it, but I'll never forget it.

A BIG mahalo to our ohana in Hawaii (Roger, Joy, and Clyde) for the surprise package from Bath and Body Works - bubble bath, here I come!

Aloha,
Debbie and Dan

Still in Mayo

Dan is still in Mayo, we hope he gets to come home tomorrow. Sunday night after he moved to a room back on 3West, they did the thorocentesis and took out a lot of fluid from the lining of the left lung. The rest of the night was miserable for Dan, he coughed all night, apparently the lung was a little compressed from the pressure of the fluid and once it opened up there was plenty of fluid in his bronchial tubes. The pulmonary guy gave him an albuterol breathing treatment to get the tubes opened up. Once he stopped coughing around 6am, he got a little sleep, and later on the morning he felt better and was breathing better.

So now they are trying to figure out why the kidneys are not functioning well. He didn't have any problems pre-transplant other than a kidney stone, so we know it's from the transplant, these organs aren't fully "awake" yet. It's a vicious cycle. The kidneys need plenty of blood flow and lots of fluid from water we drink to work well. Without those, the kidneys get sleepy and fluid we consume needs to go somewhere, so it fills up either the tissues or the blood vessels. Healthy kidneys can get working again when we drink more water, that's why we run to the bathroom more, which is a good thing unless you're stuck in traffic on the H-1. Dan's kidneys aren't healthy so he has swelling in his feet and legs, tummy, around the lungs (which they drained on Sunday), even his scrotum (don't tell him I told you this one). For Dan, they don't want him drinking more than 1 bottle of water a day, they want to treat his swelling with meds, like albumin (draws the fluid from the tissues to the vessels) and then lasix and another diuretic I can't remember the name, that should get the fluids excreted through the kidneys and bladder. Please pray the doctors can figure out why the kidneys and bladder are still sleeping and this will be an easy and quick fix. With his legs and feet so swollen, it's hard for Dan to walk and he needs to do this daily to get stronger.

Aloha,
Debbie and Dan

Back at Mayo

Dan has had a hard time breathing the past 2 days, more swelling, and drinking a lot of water without much output. So we called the transplant coordinator this morning and she spoke to the doctor and told us to go in to the ER. After labs, a bladder ultrasound and a chest xray, they decided to keep him overnight. They are going to do another thoracentesis and parecentesis, but prior to that they will give him blood plasma to amp up his platelet count in hopes of not too much bleeding from those procedures. They put in a foley catheter to help the bladder along to get rid of the large amount of fluid there. The kidney doctor will visit tomorrow also. And his labs showed very low sodium and pretty high potassium, both of which may be caused by the diuretics but they need to watch his electrolites carefully as this could signal a rejection coming on, and don't worry - they would adjust his anti-rejection meds if this happens.

The doctors tell us it is not that unusual for a transplant patient to come back in the hospital a few times after the initial discharge to get things regulated. Hearing that didn't make it any easier on Dan, though. I'm home for a short time now to blog, pick up his contac case and glasses and ipod, and then head back. My heart hurts for Dan that he has to be back there, but he will go back to 3West where we know all the nurses so that will be nice, plus selfishly speaking...I will get a little reprieve from lifting Dan. If anyone knows any good stretching exercises for my back and legs, let me know.

TTFN ("ta-ta for now" as Tigger says to Pooh),
Debbie and Dan

Saturday, Nov. 8

Sorry I haven't blogged in a few days. Having Dan home is great, however taking care of him is an all-day and all-night activity. I'm getting pretty good at helping lift Dan out of a chair to his walker, who'd have thought someone my size (5'3") could deadlift a 6'4" guy, thanks to something called a posey, a sturdy canvas strap that tightly belts around Dan's chest. And a huge thanks to Dan's dad who helps me lift Dan when needed.

Like today, Dan started walking with his walker the length of the lanai, about 100 feet from end to end, and he made it one round trip for 200 feet, probably the longest he's walked in a long while. The rest of the day, his legs were very wobbly and we were so thankful Dan's dad was here to help.

And a special thanks to Dan's mom for "encouraging" him today - "you go, girl!"

I gave Dan his first insulin injection this evening, not really his first but first since he got home. He's only diabetic since transplant, this will go away hopefully after he stops taking prednisone, but until then we check blood sugar before every meal, and if the count is over 150, he gets an injection based on a "sliding scale". We opted for the insulin pen rather than a syringe, my mom uses the pen and it seemed much easier to do and less scary to me than a syringe. Dan said he didn't even feel the needle or the insulin, so I hope I did it right.

By the way, last Thursday's doctor appt. went well and his labs were good, his kidney function is still not 100% so they scheduled a follow-up with the kidney doctor a week from Monday. We go back to Mayo on Tuesdays and Thursdays for the round of labs, doctors, PT and OT, squeezing in meds and blood sugar tests when we can.

Have a wonderful day of worship tomorrow and remember...you can do ALL things through Christ who strengthens you (paraphrase of Philippians 4:13 NKJV, emphasis mine).

Aloha from the desert,
Debbie and Dan

First day home, and LInes from Daniel's Den

Today was Dan's first full day home from the hospital. He enjoyed sleeping in a more comfortable bed with me, his wife (giggle). He really enjoyed getting to eat whatever he wanted, including tacos and bean burrito from Taco Bell for lunch. He tried to start getting on a schedule, one he'll need to follow the rest of his life. There are a few extra chores we need to do for the first few months or so. It was a non-stop day of taking about 15 pills at 8am and 8pm, meals, and a lot of effort just getting to the bathroom with his walker, sometimes it took both Dan's dad and me to get him up from the chair to his walker. We also had lots of phone calls, a rental wheelchair delivered and I had to learn how to get Dan into the chair and then how to fold it up and hoist it into the back of the van. We should only need the chair for going to church, the mall, etc.; it doesn't fit in the house doorways and Mayo has a "garage" of wheelchairs plus volunteers who greet you when you drive up with a wheelchair and a smile. All in all, we survived the first day, with a lot of worrying and nagging on my part, and Dan patting me on the back saying "relax".

Check out Dan's new post on his blog www.linesfromdanielsden.blogspot.com.

Tomorrow we go back to Mayo for a full day of labs, visits with the post-transplant coordinator and doctors, OT and PT. We'll be there from 7:05am thru 2pm, we have short breaks and a lunch break and the cafeteria there is great.

Stay tuned,
Debbie and Dan

Out of the hospital!

It finally happened...Dan was discharged from the hospital today, November 4. It was a very long day of meetings with everyone - doctors, PT, OT, endocrinologist, post-transplant coordinator (3-hrs and more to come on Thursday), then the nurse has to review a 20+page discharge paper and we sign when she's done and most of this was repeat from the previous meetings. The icing on the cake was getting to hear a noon-time concert by Vicki and her combo - she's a professional jazz singer and fellow pastor's wife and she has visited Dan faithfully several times a week to fellowship and sing wonderful jazz numbers with Dan "be-bopping" along with her. Dan is pretty tired but glad to be out of the hospital. He had some strong mixed feelings leaving the hospital, both happy and sad and emotional, as the Mayo staff on 3West and 3East have become family. And just getting around the house with his walker and in and out of chairs takes a lot of energy, more than we realized, so recovery will continue. Dan is also anxious to post a new blog entry to his 'Lines from Daniel's Den', so keep watch!

Soaring again,
Debbie and Dan