It's time for Dan's next big doctor appointment on May 28. He had lots of lab tests the first week of May, and on May 28 will have another set of CT scans and then we see the doctor for Dan's current status. We also get to meet the pre-transplant coordinator, Lindsey, whom we have spoken to but have never met; I suspect Dan is very close to getting a liver now that we are meeting with her. The last time I looked at the hospital waiting list (on the United Network of Organ Sharing website) Dan was #1 or #2. I will be in Phoenix from May 24-31, and I can't wait to spend time with my best friend, Dan. Amy and Swen will be in Phoenix from May 21-26 or so, I can't wait to spend time with my wonderful daughter and grandson. Dan's mom and dad will be taking a well-deserved trip to visit relatives and friends in Wisconsin and Missouri.
"For God...made His light shine in our hearts" (2 Cor. 4:6 NIV),
Debbie and Dan
Wednesday, May 14, 2008
Monday, April 28, 2008
An interesting development
Things that make you say "hmmm.....".
Dan got a call Saturday from the social worker at Mayo. She's the one that makes sure Dan has a support system in place for living arrangements while waiting for transplant and care giver support for after transplant, things like that. Well, she called to be sure all these things are still in place for Dan now that he is "quickly getting to the top of the waiting list." Hmmm....
Adam expected to train his replacement at Kiewit, then he expected to be transferred to his next assignment, probably in another state. Amy told us this weekend that plans have changed, the "replacement" is no longer with the company, and since Adam is the only maintenance engineer with this project (with many compliments from his boss, by the way) they will be staying in Arizona longer. Hmmm...
My good friend, Joy, told me last week that she was praying for Dan recently when she received a "divine revelation" that this will be Dan's year for getting a new liver. Hmmm....
Sounds like God is orchestrating something wonderful, like a transplant soon! Thanks for your prayers for us, and especially for the one who will be giving his/her life to give Dan a liver, and for the donor's family. Father, I pray that they all are Christians and that the donor's death would be quick and painless. I am continually reminded that You gave Your Son to give me life, His death was slow, painful, lonely, shameful, illegal, unjust...but He willingly gave His life for me, for the "joy set before Him" (Heb. 12:2).
One more thing. When you pray for us, please do not pray away the circumstances of our lives, as God is using everything to make us more like Him. Prayers for endurance and courage are most welcome. Always remember, when you pray to be in the center of God's will, Jesus was at the center of God's will, and it led Him to a cross execution, the silence of God, abandoned by His friends, even his Mom experienced helplessness and despair...but only for a short time as it says "weeping may remain for a night, but rejoicing comes in the morning." (Ps. 30:5) I am utterly convinced that everything happening to Dan and me is not even about us, but for others, someone alive now or years down the line. This brings such freedom, such release from worry, an awakening to abundant possibilities, an abundant life in the midst of pain and uncertainty.
Soaring still,
Debbie and Dan
Dan got a call Saturday from the social worker at Mayo. She's the one that makes sure Dan has a support system in place for living arrangements while waiting for transplant and care giver support for after transplant, things like that. Well, she called to be sure all these things are still in place for Dan now that he is "quickly getting to the top of the waiting list." Hmmm....
Adam expected to train his replacement at Kiewit, then he expected to be transferred to his next assignment, probably in another state. Amy told us this weekend that plans have changed, the "replacement" is no longer with the company, and since Adam is the only maintenance engineer with this project (with many compliments from his boss, by the way) they will be staying in Arizona longer. Hmmm...
My good friend, Joy, told me last week that she was praying for Dan recently when she received a "divine revelation" that this will be Dan's year for getting a new liver. Hmmm....
Sounds like God is orchestrating something wonderful, like a transplant soon! Thanks for your prayers for us, and especially for the one who will be giving his/her life to give Dan a liver, and for the donor's family. Father, I pray that they all are Christians and that the donor's death would be quick and painless. I am continually reminded that You gave Your Son to give me life, His death was slow, painful, lonely, shameful, illegal, unjust...but He willingly gave His life for me, for the "joy set before Him" (Heb. 12:2).
One more thing. When you pray for us, please do not pray away the circumstances of our lives, as God is using everything to make us more like Him. Prayers for endurance and courage are most welcome. Always remember, when you pray to be in the center of God's will, Jesus was at the center of God's will, and it led Him to a cross execution, the silence of God, abandoned by His friends, even his Mom experienced helplessness and despair...but only for a short time as it says "weeping may remain for a night, but rejoicing comes in the morning." (Ps. 30:5) I am utterly convinced that everything happening to Dan and me is not even about us, but for others, someone alive now or years down the line. This brings such freedom, such release from worry, an awakening to abundant possibilities, an abundant life in the midst of pain and uncertainty.
Soaring still,
Debbie and Dan
Friday, April 25, 2008
Life goes on
Life continues to go on for us as we wait on the Lord to provide that precious but elusive liver transplant.
Dan has had a number of weeks now where his legs are no longer forming blisters and leaking. He saw the wound nurse this week and she said his legs are "healed". Most of the sores are gone and the skin looks much better. Dan says the swelling is greatly reduced in his legs also. Thank you Lord!
Other complications continue, the most annoying right now is the muscle tremors and cramps, particularly at night. Reducing the water pills have not helped and we fear this may be one of those things Dan will have to live with until he gets a new liver. Dan is pretty tired most of the time due to very little sleep, except for falling asleep uncontrolably during the day (due to the high ammonia level). Dan is even having a hard time talking on the phone due to muscle tremors in his hands and arms, so I will be sending him his cell phone headset and Bluetooth. Please pray that the tremors and cramps will ease up and allow him to sleep a little at night.
Dan is enjoying visiting with Pat today, Pat attended a conference on the mainland and he was able to stop over in Phoenix to visit Dan. Pat is wanting to watch the Lakers game with Dan's Dad, Dan (a Celtics fan) is not too excited to have 2 Laker fans in the house!
Soaring and waiting,
Debbie and Dan
Dan has had a number of weeks now where his legs are no longer forming blisters and leaking. He saw the wound nurse this week and she said his legs are "healed". Most of the sores are gone and the skin looks much better. Dan says the swelling is greatly reduced in his legs also. Thank you Lord!
Other complications continue, the most annoying right now is the muscle tremors and cramps, particularly at night. Reducing the water pills have not helped and we fear this may be one of those things Dan will have to live with until he gets a new liver. Dan is pretty tired most of the time due to very little sleep, except for falling asleep uncontrolably during the day (due to the high ammonia level). Dan is even having a hard time talking on the phone due to muscle tremors in his hands and arms, so I will be sending him his cell phone headset and Bluetooth. Please pray that the tremors and cramps will ease up and allow him to sleep a little at night.
Dan is enjoying visiting with Pat today, Pat attended a conference on the mainland and he was able to stop over in Phoenix to visit Dan. Pat is wanting to watch the Lakers game with Dan's Dad, Dan (a Celtics fan) is not too excited to have 2 Laker fans in the house!
Soaring and waiting,
Debbie and Dan
Tuesday, April 15, 2008
Update
Just a quick update. Dan's gone a few weeks now without any leg sores draining, that's a big praise. And his voice sounds stronger today. He did see the doctor yesterday for the constant leg and body cramps, the doctor thinks it may be dehydration from the high dosage of water pills they prescribed, so they decreased them slightly. If this doesn't help, the doctor said Dan may have to live with this until he gets a new liver. His MELD score is still 20. And Dan got the transfusion a few weeks ago and as predicted, he is quite jaundiced with a higher bilirubin count.
In His Time,
Debbie
In His Time,
Debbie
Thursday, March 27, 2008
Easter and doctors
We enjoyed all being together for Easter. Worship at Dan's parents' church (First Southern Baptist Church, Scottsdale) and then Dan's sister Debbie and the kids came over for a big dinner. Swen was very happy in the church nursery.
Dan continues to battle all the same side effects, which can change during the day or night. Dan's days consist of medication, leg wound care twice a day (or sometimes more), and sitting with his legs elevated. It's nice to visit him along with Amy and Swen. He enjoys the cards and letters from home, and REALLY enjoyed the Zippys portuguese bean soup and Hawaiian soda crackers gift from Janice.
Dan had labs on Wednesday and then we saw the doctor. Labs are pretty much the same, ammonia level was 185 (normal is 10-40). The doctor increased the amount of water pills again for the swelling, along with a new prescription of magnesium for the muscle cramps. The doctors at Mayo are so compassionate, particularly Kelly, the doctor Dan sees regularly. She told us the liver transplant team meets every week to discuss patients and they review Dan's condition each week. The one change in labs is his red blood cell count is very low again, so Dan will get another transfusion on Monday. This will protect his heart mostly. Due to that antibody condition he has, the count won't stay high very long. We think of the antibodies eating the red blood cells and it reminds us of Pacman eating the energy packs.
I am relaxing a lot. Just hanging around the house with family and playing with Swen, very relaxing!
Debbie
Dan continues to battle all the same side effects, which can change during the day or night. Dan's days consist of medication, leg wound care twice a day (or sometimes more), and sitting with his legs elevated. It's nice to visit him along with Amy and Swen. He enjoys the cards and letters from home, and REALLY enjoyed the Zippys portuguese bean soup and Hawaiian soda crackers gift from Janice.
Dan had labs on Wednesday and then we saw the doctor. Labs are pretty much the same, ammonia level was 185 (normal is 10-40). The doctor increased the amount of water pills again for the swelling, along with a new prescription of magnesium for the muscle cramps. The doctors at Mayo are so compassionate, particularly Kelly, the doctor Dan sees regularly. She told us the liver transplant team meets every week to discuss patients and they review Dan's condition each week. The one change in labs is his red blood cell count is very low again, so Dan will get another transfusion on Monday. This will protect his heart mostly. Due to that antibody condition he has, the count won't stay high very long. We think of the antibodies eating the red blood cells and it reminds us of Pacman eating the energy packs.
I am relaxing a lot. Just hanging around the house with family and playing with Swen, very relaxing!
Debbie
Thursday, March 6, 2008
Another week
Dan once again visited doctors and the dentist this week. More labs were taken and praise God, the new infection in his leg is gone. Seems the new treatments using silver have helped draw out the infection. His MELD is the same, his bilirubin and ammonia are high again so the doctor increased the dosage on his 3 different meds. Dan also visited his parents' dentist for a toothache, thankfully it was just a cavity and he got it filled. Turns out this dentist enjoys periodic vacations on Molokai.
Another complication or side effect from the high ammonia: Dan is having difficulty walking, often bumping into things or tripping over rugs, often forgetting where he is, like this week he needed help finding his way from the exam room to the waiting room. We hate his health getting worse, yet we know it must progress like this for him to get to the top of the waiting list, which the doctor confirmed he's just about there. Mayo has been getting more livers and the doctor told Dan she thinks Dan is close to getting one.
We are anxiously awaiting God's provision, sometimes feeling well, often times, like now, pretty depressed, but always knowing God is in control.
As Easter approaches, we pray you will understand just how much God loves you:
"I asked Jesus how much He loved me He answered "this much" Then He stretched out His arms and died for me."
Deb & Dan
PS: More photos of Swen here (or go to www.picasaweb.google.com/dananddebvanalstine)
Another complication or side effect from the high ammonia: Dan is having difficulty walking, often bumping into things or tripping over rugs, often forgetting where he is, like this week he needed help finding his way from the exam room to the waiting room. We hate his health getting worse, yet we know it must progress like this for him to get to the top of the waiting list, which the doctor confirmed he's just about there. Mayo has been getting more livers and the doctor told Dan she thinks Dan is close to getting one.
We are anxiously awaiting God's provision, sometimes feeling well, often times, like now, pretty depressed, but always knowing God is in control.
As Easter approaches, we pray you will understand just how much God loves you:
"I asked Jesus how much He loved me He answered "this much" Then He stretched out His arms and died for me."
Deb & Dan
PS: More photos of Swen here (or go to www.picasaweb.google.com/dananddebvanalstine)
Monday, March 3, 2008
Updates
A few updates from recent trips to the doctor:
* The sore on Dan's face is not cancerous, not even pre-cancerous, and the doctor decided it did not even need to be removed. A big praise for this!
* The dietician did not make any real changes to Dan's diet. However, he is watching his diet closely, along with all those meds he has to take.
* The wound care nurse changed the treatments for the ulcers and infection in his legs, this time using bandages and medicine with silver, this should draw out that infection. Dan has been talking with Lindsay, his transplant coordinator at Mayo, hopefully they won't put him on Status 7 during this infection (Status 7 is off the transplant waiting list, he's been in that status before).
We praise God for our friend Wanda Soares in Hawaii who received her liver transplant after many years of waiting.
Debbie
* The sore on Dan's face is not cancerous, not even pre-cancerous, and the doctor decided it did not even need to be removed. A big praise for this!
* The dietician did not make any real changes to Dan's diet. However, he is watching his diet closely, along with all those meds he has to take.
* The wound care nurse changed the treatments for the ulcers and infection in his legs, this time using bandages and medicine with silver, this should draw out that infection. Dan has been talking with Lindsay, his transplant coordinator at Mayo, hopefully they won't put him on Status 7 during this infection (Status 7 is off the transplant waiting list, he's been in that status before).
We praise God for our friend Wanda Soares in Hawaii who received her liver transplant after many years of waiting.
Debbie
Subscribe to:
Posts (Atom)
