Update from Barb - 1:00 PM CDT

[Guest guest]

Sorry about the lack of updates this week….nag, nag, nag. There has been no progress this week and we seem to be at a complete stand still, so nothing to write about.

Ken’s grandmother (TJ’s mom) came for a visit this week (Tuesday-Thursday) and it was great to see her. We took in a movie one day, had lunch out another (Ken’s first visit to a restaurant since tx) and unfortunately on the last day she caught a glimpse of prednisolone in action. (The PSCer’s know what I’m talking about.) I honestly thought (silly me) because we had made it to this point without much fuss, we wouldn’t have to deal with this “nasty” side effect. I should have known better, Ken hasn’t been able to dodge anything else.

His latest CT was unchanged from the first (except they could see all his black & blue marks from the Lovenox shots. I had no idea a CT could show that.) Labs on Friday - kidneys are doing ok, platelets are down to the 500s, and all cultures from earlier in the week were negative. GGT & another liver marker (I forgot which one) are both up.

Of interest to the group – Friday’s tx surgeon was the second one to tell us, that “young men with PSC were especially prone to rejection during the first 6 months.” I haven’t had a chance to check out any studies, (but I will) to see if that statement applies to all or if it’s just their experience at Baylor.

Yesterday marked 66 days at Baylor or TB House. Ken is markedly depressed and we can’t seem to lift his spirits even one tiny bit. So I packed up a few things and called TJ to come get us. We’ll spend today and tomorrow here at home, then we’ll head back for Monday’s appointment with the wound doc.

I love TJ, I do, and he did (and will continue to do) a wonderful job of keeping things going here at home, but…….nothing says welcome home like two ugly mutts going ape over seeing their momma!

Have a great weekend everyone.

http://www.caringbridge.org/visit/ken