Maureen.................

[Guest guest]

Mike was weaned down to 2 mgs a day -

his Dr. - not his original transplant surgeon in London Ontario, but the new

guy in Halifax, Dr. Nashan (who, from what we are told is a genius both in

the operating room and out) - talked to us about the risk of it returning -

I don't remember any specific numbers, but I do remember him saying the

slight chance it may return............

We have been doing alot of renovations on our house and Mike is tired this

week and I know what you mean by always wondering if it's just simply being

tired or something else - his liver functions remain normal, his colour is

wonderful and so far, over a year later there hasn't been one little glitch

- sometimes I worry that it all went TOO well........anytime I have a

concern or fear, like when he had a nosebleed a few weeks ago (after

drywalling a room) I call the transplant centre and they calm me down - as

one nurse said - you know he's going to have things like 'normal' people,

not everything points to his liver - the nosebleed - simply irritated

sinuses from the drywall- I of course, had him rejecting with platelets in

his shoes - not the case afterall.........congrats on the wedding and all

the good things that have happened in your life - I don't always post, but I

do read and keep up with everybody....

Patti

" never let fear or common sense hold you back "

>

>Reply-To:

>To: < >

>Subject: Patti -- RE: recurrence?

>Date: Sun, 10 Jul 2005 21:40:05 -0700

>

>Oh gosh, Patti, I can relate (“still always there in the back of my mind

>though................”) because every time Jim comments he’s tired, my

>heart does this little lurch and my thoughts wonder the same discouraging

>“time bomb” thing. Your post said Mike’s on a low dose of prednisone

>indefinitely… may I ask how much? Jim (3 & ½ years post-tx) is taking

>4mg/day.

>

>

>

>When Mike’s doctors indicated a “low percentage” of PSC recidivism for the

>transplantee, were you able to ask for any specifics? (Thanks to Arne for

>his post on this, by the way!) I’m not sure about prednisone use as “added

>insurance” as that relates to warding off recurrence…?

>

>

>

>Bur here’s the dealio: I also vaguely remember reading somewhere how

>recurrency isn’t necessarily immediate, nor does it necessarily progress as

>fast as it did the first time. You & I might take comfort in that for Mike

> & Jim, sure… but try telling it to members of our 2nd & 3rd-timers

>transplantee club who had to get back on this crazy roller coaster ride way

>early! If recurrency rates were as low as 2%, and you were “part” of that

>2%, well, then, it’s not 2% for you, now, is it? For you, it’s akin to

>100%

>(said Maureen who has long forgotten her high school algebra, faked her way

>through college statistics, & considers herself “illnumerate”)!

>

>

>

>From Jim’s first reported elevated LFTs to official PSC dx took 12 years;

>elevated LFTs to time of transplant, close to 18 years. The occasional

>doctor here & there (whenever we’ve discussed the topic of PSC recidivism)

>has mentioned the greater likelihood that “something else” will take Jim’s

>life way down the road before any recurrent PSC would progress to the point

>of requiring transplant. Hopefully it won’t take years and years to solve

>the organ shortage… or better yet, this would be a non-issue because a cure

>would be discovered.

>

>

>

>Maureen (who is still tired, but happy & thrilled that yesterday’s over,

> & Mindy are on their honeymoon) and Jim (who, just like Maureen, is

>sooooooooooo tired!!!)

>