Update from Barb (Caringbridge site)

[Guest guest]

TUESDAY, SEPTEMBER 04, 2007 06:47 PM, CDT

CMV is a virus, most people are exposed to it sometime during their life with little or no trouble, most of the time people don't even know they have it. But, in an immunocompromised person, it can turn quite ugly (even life threatening, but we won't go there!) It's a member of the herpes family. I think it's also called herpes 5 or 6 (who can keep track of all these buggers?) Other members of the family are Herpes 1 (cold sores) Herpes 2 (genital), chickenpox, shingles and Epstein-Barr virus. For Ken, it's likely his donor had it and because he's immune suppressed, it decided to say Howdy. They gave him ganciclovir after his transplant, and no doubt that held it off for a while, but nothing gets passed Ken!

Funny that 'the group' has been talking about Mono this week, do ya think you guys spread it to Ken though his guestbook? I've been talking about Herpes possibly being a trigger for PSC since 2000. I even talked to Dr Lindor about it, who said it was 'an interesting idea, but no studies had been done looking for it'. Maybe it would make an interesting topic for next years conference.

When we got to the hospital last night at 5, they told us Ken didn't have to stay over night. They put in the PICC line and gave him the first dose and at 10:30 said we could go. Ken had already fallen asleep and I wasn't happy about waking him that late at night, but as Ken would say Oh Well.

We got to see Dr McKenna this morning in clinic, the first time in quite a while. He was so happy to see Ken and once again he said he couldn't believe that Ken had something else go wrong. Ken told him he wasn't happy about how slow his recovery was going. Doc told him he thought just the opposite - he couldn't believe how well he was doing. He called Ken's survival a 'sheer miracle' and said 7 of 10 people in Ken's shoes would have died by now. He said only 1% of post transplant patients get TTP and only .05 get pancreatitis. He said when Ken got the pancreatitis, he felt certain he wouldn't survive it. Hopefully this pep talk will inspire Ken (it did me) and help him get through the next 2 - 3 weeks of CMV. The coordinator messed up his morning dose of meds for the CMV, so we had to go up to 14 after clinic and get it. Another 4 hours of waiting. UGH. Because it took them so long this afternoon, he is going to miss tonight's dose. Now we just heard that Medicare won't pay enough for a home health care worker to do the IV here, so we'll have to go to the hospital twice a day to do it. Whatever It Takes - right?

***, I've wanted to thank you and Fred and haven't had a chance to write you privately. It was so nice of you to think of Ken and make a donation in his honor to:

PSC Partners Seeking a Cure Foundation

5237 So. Kenton Way

Englewood, CO 80111

Wouldn't it be GREAT if someday soon a cure for PSC was found?

Barb

[Guest guest]

Barb,

I was bummed to hear that Ken has to deal with CMV on top of everything

else. My husband has been fighting this little monster on and off for a

while now. However after the first round of IV meds they put him on

oral medications. As for the IV meds, and the reason for my post.

Darryll was given these tennis ball sized objects that hooked into the

pic-line and administered his medication. Here is a " link " (not sure it

will connect you may have to cut and paste) where Darryll talks about

his first round of CMV and the bulb of IV meds. Maybe you and Ken could

ask about it.

http://www.delivermyliver.com/2007/02/25/why-does-everything-sound-

really-bad/

Good Luck and know your both in my prayers.

Litsa

Wife to Darryll UC/PSC and transplanted 01/04/07