John Baker update 01/21/12 10:34 PM

Well things seem to be looking good. Friday morning creatinine was 1.4, B.U.N. was 31, Hematocrit was up to 38.3, Hemoglobin was up to 12.2, White cell count is 6.4.

He will be getting another eculizumab treatment on monday.

His arm is still in a lot of pain but is progressing slowly.

With prednisone as one of the anti rejection medications eating seems to be a priority in his life. we are thinking about changing his name to Kirby

We are still at two visits a week to Seattle and hopefully can taper down to one in mid February.  God is good. We are greatful.

John Baker Update 1/14/2012 1:20 pm

Hello everyone,

It’s  probably past time to give you an update. We have been busy with driving to and from Seattle and making sure John gets his pills on time etc. This is a good thing. We were up to Children’s on Monday for Labs. His creatinine was slightly higher than it had been. It was 1.5 when it had been staying around 1.3. He had an ultrasound done of his kidney, which showed nothing significant, and then labs again on Tuesday morning.  His creatinine was back to 1.3. We were thankful.  As you can see, he is being very closely monitored. So far everything is going in the right direction. He is no longer getting plasmapheresis  but he is still getting the eculizumab every other week for a total of nine weeks. He gets to be home all weekend. He will go back up on Monday night for labs on Tuesday morning. His left arm is still pretty much useless, however his chiropractor has high hopes of helping relieve some of the nerve damage. We will try to keep posting more current, every two to three days or if anything significantly changes. Meanwhile we just keep smiling and singing "Go Johnny Go, Johnny pee good tonight." Thank you for keeping us in your prayers….God is so good!

John Baker Update. 12/29/2011. 7:45 PM

John is happy to be out of the hospital however we are still part of the frequent visitors club. We were there most of Wednesday, and will be most of Friday, and most of Sunday. His creatinine is still holding at 1.4. We need to see 1.0 or less. His B.U.N. is down to 22. We want 20 or less. His hemoglobin is up to 8.7. We would like at least 11.0. Friday and Sunday will include plasmapheresis and a dose of eculizumab for antigen therapy. The hope is that the liver will began to absorb the antigens that attack the kidney thus protecting the kidney. We still need your continued prayers.
Thank you.

John Baker Update 12/26/2011 1:45 PM

John had an ok night. His creatinine and B.U.N. is same as was the 24^th. His hemoglobin is up to 7.7 from 7.2 on the 24^th. He is getting plasmapheresis today and eculizumab following. He has three more treatments after today and then they will re-evaluate the treatment plan. They are discharging us today and John will sleep in his own bed tonight. We will come up Wednesday and Friday for treatments.  

Your continued prayers are appreciated.

Thank You very much.

John Baker Update 12/25/11. 10:15 AM

Last night was about the same as the night before. They did not draw labs this morning except for tacro levels. They will draw labs tomorrow when they do plasmapheresis. They removed his central line about an hour ago so we are free to go out on a four hour day pass. That means we are close to discharge. I suspect Monday or Tuesday we will be discharged. Take notice that I did update the blog yesterday evening. Please continue to pray for John. We love you all and Thank You for your prayers.
Merry Christmas Everybody.

John Baker Update 12/24/2011. 6:45 PM

Hmm. Well good evening. It seems I neglected to update the post this morning.
Well John had another fairly restful night.his arm is perhaps slightly better. His creatinine is down it 1.4 and his B.U.N. is down to 25. He did have plasmapheresis today a will have every other day for four more treatments with antigen therapy to follow.
Gabe, Lizzy, and the kids are here this eve for our traditional Christmas eve time together.
God is so good to us. We are greatful for our friends and family and all your prayers.
Thank you.

John Baker Update 12/23/2011 10:15 AM

Good morning.
John had a reasonably good night and slept well.
His arm pain is decreasing for the most part and motor movement is increasing.
His creatinine is back down to 1.6 from 1.8 yesterday. His B.U.N. went down to 34 which is an awesome move in the right direction.
His hemoglobin is up to 7.3 from 7.2 westerday. Yesterday they started him on darbepoetin alfa, (commonly called darbe and otherwise known as aranesp,) instead of epoetin.  Darbe is a synthetic version of epo.
We will not be discharged till at least Monday as he still has to many things that need watched.

We love you all and Thank You for your support and prayers.