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
Tuesday, April 15, 2008
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
Monday, February 18, 2008
Fighting those side effects
Dan went back to Mayo today for more labs and a visit with the doctor. His MELD score is close to what it was last week. His bilirubin count is higher and the doctor said Dan looked pretty yellow and even a little ash grey today. The good news is his red cell count is higher so he won't need a transfusion. His ammonia level is lower and the swelling looks a little better around his ankles. So hopefully the new meds are helping with all of these. However, there are a few new pukas (holes) in his leg that are leaking fluid, and at least one is infected. The doctor is referring Dan to 3 different doctors for this and a few other side conditions; he has appointments this week on Wednesday, Thursday, and Friday.
Here are a few prayer requests for this week:
* For healing of the leg infection.
* For the nausea to go away (this may or may not be caused by the meds)
* Dan had one basil cell carcinoma removed from his nose a few years ago, now there is a suspicious looking sore on his face, that's one of the appointments he has this week to check this out; we pray this will not be a serious thing and can be removed easily like the carcinoma.
* Dan will also be seeing a Mayo dietician this week. Dan's mom is a fantastic caregiver and cooks very healthy and I am so very grateful for her love and care of Dan. His doctor thinks the dietician can help even more with keeping Dan's protein low and getting him even healthier. I think Dan's mom will be going to this appointment with Dan.
So, it's looking to be a very busy week. Thanks for your prayers.
Debbie
Here are a few prayer requests for this week:
* For healing of the leg infection.
* For the nausea to go away (this may or may not be caused by the meds)
* Dan had one basil cell carcinoma removed from his nose a few years ago, now there is a suspicious looking sore on his face, that's one of the appointments he has this week to check this out; we pray this will not be a serious thing and can be removed easily like the carcinoma.
* Dan will also be seeing a Mayo dietician this week. Dan's mom is a fantastic caregiver and cooks very healthy and I am so very grateful for her love and care of Dan. His doctor thinks the dietician can help even more with keeping Dan's protein low and getting him even healthier. I think Dan's mom will be going to this appointment with Dan.
So, it's looking to be a very busy week. Thanks for your prayers.
Debbie
Wednesday, February 13, 2008
Updates
On Monday, Feb. 11th, Dan had new labs and imaging and we met with the doctor.
For the past 6 months, Mayo has done very few, if any, liver transplants because of a shortage of livers available. New patients have been added to the list with fewer organs available. So, although Dan’s MELD number went up, he’s lower on the waiting list. This probably means our wait will easily be a number of months longer, and will continue testing our patience and prayers.
In the meantime, we will be working more aggressively through additional medications to treat the side effects mentioned in the previous blog entry. As the doctor told us, the hope is to get Dan as healthy as possible while he’s sick.
We continue to be thankful to Mililani Baptist Church and Hawaii Pacific Baptist Convention for your love and support, and for you who read these blog entries and have lifted us in prayer.
Still soaring (most of the time),
Dan and Deb
PS: If you are wondering how to leave us a comment, look at the white box right below and click on "0 comments" (or it might have a number then comments). You'll get a pop-up screen where you can type in a comment, then for "Choose an Identity" click the box next to "anonymous" or use your Blogger account, then click "Publish" or "Preview". You can also send an email to us.
For the past 6 months, Mayo has done very few, if any, liver transplants because of a shortage of livers available. New patients have been added to the list with fewer organs available. So, although Dan’s MELD number went up, he’s lower on the waiting list. This probably means our wait will easily be a number of months longer, and will continue testing our patience and prayers.
In the meantime, we will be working more aggressively through additional medications to treat the side effects mentioned in the previous blog entry. As the doctor told us, the hope is to get Dan as healthy as possible while he’s sick.
We continue to be thankful to Mililani Baptist Church and Hawaii Pacific Baptist Convention for your love and support, and for you who read these blog entries and have lifted us in prayer.
Still soaring (most of the time),
Dan and Deb
PS: If you are wondering how to leave us a comment, look at the white box right below and click on "0 comments" (or it might have a number then comments). You'll get a pop-up screen where you can type in a comment, then for "Choose an Identity" click the box next to "anonymous" or use your Blogger account, then click "Publish" or "Preview". You can also send an email to us.
Wednesday, February 6, 2008
Prayer Request and New Photos of Swen
I'm looking sooooo forward to my upcoming visit with Dan. I fly out Friday night (Feb. 8) and fly back Tuesday night (Feb. 12). Monday Feb. 11 is Dan's next labs, imaging, and doctor's appointment and we'll let you know what happens. In the meantime, we'd sure appreciate prayers for Dan right now. His legs are "leaking" again from the extreme swelling, this time from new pukas (holes). And he's starting to have dizziness, often after trying to read for any length of time, along with nausea and throwing up. For sure we will tell the doctor about all this on Monday.
Aloha,
Debbie and Dan
PS: If you are wondering how to leave us a comment, look at the white box right below and click on "0 comments" (or it might have a number then comments). You'll get a pop-up screen where you can type in a comment, then for "Choose and Identity" click the box next to "anonymous" or use your Blogger account, then click "Publish" or "Preview". You can also send an email to us.
Aloha,
Debbie and Dan
PS: If you are wondering how to leave us a comment, look at the white box right below and click on "0 comments" (or it might have a number then comments). You'll get a pop-up screen where you can type in a comment, then for "Choose and Identity" click the box next to "anonymous" or use your Blogger account, then click "Publish" or "Preview". You can also send an email to us.
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