Update From Barb - 1220 PM CDT

[Guest guest]

Ken was napping when we came in this morning (for the first time in over a

week,) but it didn't last more than a few minutes. During rounds, as the doctor

spoke, Ken would say 'Check' (he cracked the doctors & us up.) When they were

finished, Ken asked if he could go to 'Sonic' (for Northeners, that's a

hamburger joint) Ken hates Sonic, so that surprised me. Wish we had a tape

recorder, Ken will never believe some of the things he has said. At one point

Kim was writing them down, because they were so funny. The nurses enjoy taking

care of him, because he hasn't turned mean like so many others that are

'confused' (that word really doesn't do his mental status justice.) He doesn't

know he has had a transplant, let alone 2and has no idea what has been going on.

For that, I am very thankful.

Now for the good news......

Ken's LFTs (Liver Function Tests) are down, his Bilirubin is 2.4 (both are the

lowest they have been since surgery!) His amylase & lipase (pancreas) are both

lower, not a bunch, but hey, they are lower. Urine output hasn't increased much,

but it isn't black any more. (The other day they had to take 2 samples, because

the lab had never seen urine that black before and thought it was a mistake.)

His platelets are up a little. Dr said he was really surprised to find Ken

breathing on his own and not back on the vent. So, some good news today!

They will be continuing the plasmapheresis (exchange of bad plasma, for good)

keeping an eye on his LDH and watching his ammonia, because that hasn't gone

down. 24 hour kidney dialysis will continue for weeks/months.

Today they are starting the immune suppressant 'Thymoglobulin', as he has been

off Prograf since the TTP started. It isn't the immune suppressant of choice by

any means. As it has a lot of very nasty, nasty adverse reactions and side

effects, but no way are we going to lose this liver, so we'll cope the best we

can. It's made with the help of rabbits (Ken will enjoy that part.)

They are going to move him back to a private ICU room (right now he is an ICU

room with 3 others) in the hope of his getting some sleep. The doctor also left

orders for a sleep aid or two tonight. They haven't been giving him anything to

force sleep so he could continue to breath on his own.

So today, rest easy prayer warriors, he's doing better. Remember the PSC group

motto - Together in the fight, whatever it takes!

(Shameless plug coming)..... If you would like to help us find a cure for PSC,

please check out this link - http://www.pscpartners.org/

With love, Barb in Texas

[Guest guest]

Barb Henshaw wrote:

>

> So today, rest easy prayer warriors, he's doing better. Remember the PSC

> group motto - Together in the fight, whatever it takes!

From years of experience as a minister's wife, let me beg all the

prayer warriors NOT to rest easy!!! Keep those prayers going strong and

steady until Ken is home!!! Please don't stop now!!!!!

Regards,

Carolyn B. in SC

[Guest guest]

To the Fantastic Four:

Prayer Warriors still fighting the fight of whatever it takes.

dee

[Guest guest]

Dear Barb,

Hurray for a bit of good news today! We're all rooting for Ken. It's great

that you can still find some humor in all of this. Here's hoping that Ken's

condition will continue to improve.

Ricky

>

>Reply-To:

>To: < >

>Subject: Update From Barb - 1220 PM CDT

>Date: Thu, 5 Jul 2007 12:25:42 -0500

>

>Ken was napping when we came in this morning (for the first time in over a

>week,) but it didn't last more than a few minutes.