quickie PS to my last post

[Guest guest]

Jim has *NOW*

decided that he is going to trust the “do-I-biopsy-or-not?”

decision to… (drumroll…….) and me. Whoa! I

guess he figures his donor has some say in the matter – after all, it’s

’s liver – and that all you good people will help us with this

decision?

Man-oh-man, do I love this group (and you

haven’t even written back yet!)

Love, Maureen

[Guest guest]

Lordy Maureen.

Having not gone through this yet…I can’t tell you what I would do

in your shoes, but I am fairly certain that I would go for the biopsy. I

thought once you gave him some time…that he would come around. THAT is a

man for you. So you got a yes to all of the above, but none of them

specifically or did I misunderstand that the fatty liver was the way they were

leaning?

You are all in

our prayers. Is he still going on his trip? Life should not be put on hold

but I think I would want to know ASAP.

Blessings,

P.S. Sorry to

freak out on you. I just was worried and love you to bits. Your posts always

make me smile, even this stressful one was written with your usual humor. That

is what gets me through and I see that in you.

Mom of Zoe (13) My very normal (teenager normal) soccer player;

Noah (8 1/2) Indeterminate colitis, PSC, Osteopenia (1-4

lumbar vertebrae), Enthesopathy;

Aidan (4 1/2) Moderately-severe SNHL bilaterally

Recycle

Yourself

Become an

Organ Donor

[Guest guest]

Lordy Maureen.

Having not gone through this yet…I can’t tell you what I would do

in your shoes, but I am fairly certain that I would go for the biopsy. I

thought once you gave him some time…that he would come around. THAT is a

man for you. So you got a yes to all of the above, but none of them

specifically or did I misunderstand that the fatty liver was the way they were

leaning?

You are all in

our prayers. Is he still going on his trip? Life should not be put on hold

but I think I would want to know ASAP.

Blessings,

P.S. Sorry to

freak out on you. I just was worried and love you to bits. Your posts always

make me smile, even this stressful one was written with your usual humor. That

is what gets me through and I see that in you.

Mom of Zoe (13) My very normal (teenager normal) soccer player;

Noah (8 1/2) Indeterminate colitis, PSC, Osteopenia (1-4

lumbar vertebrae), Enthesopathy;

Aidan (4 1/2) Moderately-severe SNHL bilaterally

Recycle

Yourself

Become an

Organ Donor

[Guest guest]

Lordy Maureen.

Having not gone through this yet…I can’t tell you what I would do

in your shoes, but I am fairly certain that I would go for the biopsy. I

thought once you gave him some time…that he would come around. THAT is a

man for you. So you got a yes to all of the above, but none of them

specifically or did I misunderstand that the fatty liver was the way they were

leaning?

You are all in

our prayers. Is he still going on his trip? Life should not be put on hold

but I think I would want to know ASAP.

Blessings,

P.S. Sorry to

freak out on you. I just was worried and love you to bits. Your posts always

make me smile, even this stressful one was written with your usual humor. That

is what gets me through and I see that in you.

Mom of Zoe (13) My very normal (teenager normal) soccer player;

Noah (8 1/2) Indeterminate colitis, PSC, Osteopenia (1-4

lumbar vertebrae), Enthesopathy;

Aidan (4 1/2) Moderately-severe SNHL bilaterally

Recycle

Yourself

Become an

Organ Donor

[Guest guest]

, thanks for your response, I

appreciate it more than I can say (especially your prayers).

Yes, Jim’s going on his Mt. Whitney

climb, and while that’s totally fine by me, I don’t entirely

understand it, because if it were me, I’d be like “been there, done

that, got the t-shirt.” He and made this same climb already,

with his brother & nephew along to boot, back in ‘04. But it’s

Jim conquering the mountain again, not me, and a (transplanted) man’s

gotta do what a man’s gotta do, I s’pose? My two bits,

though, especially after reading about Barb’s Ken catching such whopping

bass (what does he use for bait?!)…? Jim, let’s both of us go

bass catch-and-release fishing, instead! ;-)

As you said, life should NOT be put on

hold. It didn’t take the transplant for Jim to learn this; we

ascribe to this philosophy, Jim and I, having been taught this by his local

hepatologist (and friend), who does not believe PSCers should sit on the

sidelines and just passively watch life pass them by… the doctor was

fully in favor of Jim & I vacationing in Ireland (by way of England, at Jim’s

request) in the summer of ’01, while Jim was a very sick man (roughly 6

months before the transplant, but prior to ascites becoming a real issue).

Before our departure, Jim got supercharged with a couple of transfusions, and

with the doctor’s blessing, I planned a trip that Jim would love using

his AAA travel gift certificates (equivalent of the 25 and 30-year awards from

the family business). The travel agent worked with our physical

issues/needs, Jim’s and mine, and the itinerary allowed for some

delicious napping in the most wonderful places! It was a sad but sweet

time, with priceless memories. It shocks Jim now, to look at his gaunt

face compared to his robust appearance now. Don’t think this is

morbid, but we had the most bittersweet conversations in Shakespeare’s

garden… while all the tourists did their tourist thing, Jim shared with

me all his favorite hymns he wanted sung if he was ever to have a memorial

service. It broke my heart, but at the same time, it was a milestone for

the man who told his doctor no, no, no, he’d never need a transplant, and,

furthermore, the only reason he got colitis 12 years prior is because his wife didn’t

cook right.

Jim’s no stranger to denial, but

this time (to your question), “fatty liver” is MY being in denial

about suspected recurrent PSC… if elevated Alk Phos has to be due to

anything, I much prefer fatty liver as the culprit, not PSC recidivism. Jim

deluded himself into thinking our daughters would be there for me leading up

to, during, and after the transplant, but the truth is, most family members (friend

or foe, close or distant) just sucked me bone dry. Thank God for this

amazing group, because criminy, post transplant, I’ve craved a simple,

simple life, probably because I’ll always feel toasted from the stress

leading up to Jim & ’s ’01 transplant… since, in a

perfect world, no wife and mother should have to stand between 2 hospital

gurneys, 1 holding her husband and the other, her son. The same can be

said for

But we don’t live in a perfect

world, illness sucks, and we do the best we can to trudge on and fight the

fight, under whatever circumstances God allows to fall our way – of this

I have become convinced. ’s only prayer request was that God

be glorified in the process, and he feels that happened. Sometimes I can

hardly believe Jim allowed and accepted The Gift from our son, because my gosh…

it’s such a sacrifice, and our son had his whole life ahead of him!

Sometimes I think I’m a lousy Christian witness to the medical miracle

that took place between our son and his dad, because although do I know and do trust

that God doesn’t allow us the unbearable burden, back then, judging from

how shell-shocked I was afterward, it all sure seemed unbearable. They

say hindsight is 20-20, so, going with that, I’m looking back, and I tell

you, I was licking my wounds for a good while. Perhaps that wouldn’t

have been quite the case, had a few members of Jim’s family (oldies in

this group will remember “Catbert,” I am sure) not become

overly-involved & added to our stress the way they did.

In case I still didn’t answer your

question, yes, I believe it does appear that the transplant center wants the

biopsy to rule out recurrent PSC.

Love,

Maureen (who smiled upon learning she makes

smile)

[Guest guest]

, thanks for your response, I

appreciate it more than I can say (especially your prayers).

Yes, Jim’s going on his Mt. Whitney

climb, and while that’s totally fine by me, I don’t entirely

understand it, because if it were me, I’d be like “been there, done

that, got the t-shirt.” He and made this same climb already,

with his brother & nephew along to boot, back in ‘04. But it’s

Jim conquering the mountain again, not me, and a (transplanted) man’s

gotta do what a man’s gotta do, I s’pose? My two bits,

though, especially after reading about Barb’s Ken catching such whopping

bass (what does he use for bait?!)…? Jim, let’s both of us go

bass catch-and-release fishing, instead! ;-)

As you said, life should NOT be put on

hold. It didn’t take the transplant for Jim to learn this; we

ascribe to this philosophy, Jim and I, having been taught this by his local

hepatologist (and friend), who does not believe PSCers should sit on the

sidelines and just passively watch life pass them by… the doctor was

fully in favor of Jim & I vacationing in Ireland (by way of England, at Jim’s

request) in the summer of ’01, while Jim was a very sick man (roughly 6

months before the transplant, but prior to ascites becoming a real issue).

Before our departure, Jim got supercharged with a couple of transfusions, and

with the doctor’s blessing, I planned a trip that Jim would love using

his AAA travel gift certificates (equivalent of the 25 and 30-year awards from

the family business). The travel agent worked with our physical

issues/needs, Jim’s and mine, and the itinerary allowed for some

delicious napping in the most wonderful places! It was a sad but sweet

time, with priceless memories. It shocks Jim now, to look at his gaunt

face compared to his robust appearance now. Don’t think this is

morbid, but we had the most bittersweet conversations in Shakespeare’s

garden… while all the tourists did their tourist thing, Jim shared with

me all his favorite hymns he wanted sung if he was ever to have a memorial

service. It broke my heart, but at the same time, it was a milestone for

the man who told his doctor no, no, no, he’d never need a transplant, and,

furthermore, the only reason he got colitis 12 years prior is because his wife didn’t

cook right.

Jim’s no stranger to denial, but

this time (to your question), “fatty liver” is MY being in denial

about suspected recurrent PSC… if elevated Alk Phos has to be due to

anything, I much prefer fatty liver as the culprit, not PSC recidivism. Jim

deluded himself into thinking our daughters would be there for me leading up

to, during, and after the transplant, but the truth is, most family members (friend

or foe, close or distant) just sucked me bone dry. Thank God for this

amazing group, because criminy, post transplant, I’ve craved a simple,

simple life, probably because I’ll always feel toasted from the stress

leading up to Jim & ’s ’01 transplant… since, in a

perfect world, no wife and mother should have to stand between 2 hospital

gurneys, 1 holding her husband and the other, her son. The same can be

said for

But we don’t live in a perfect

world, illness sucks, and we do the best we can to trudge on and fight the

fight, under whatever circumstances God allows to fall our way – of this

I have become convinced. ’s only prayer request was that God

be glorified in the process, and he feels that happened. Sometimes I can

hardly believe Jim allowed and accepted The Gift from our son, because my gosh…

it’s such a sacrifice, and our son had his whole life ahead of him!

Sometimes I think I’m a lousy Christian witness to the medical miracle

that took place between our son and his dad, because although do I know and do trust

that God doesn’t allow us the unbearable burden, back then, judging from

how shell-shocked I was afterward, it all sure seemed unbearable. They

say hindsight is 20-20, so, going with that, I’m looking back, and I tell

you, I was licking my wounds for a good while. Perhaps that wouldn’t

have been quite the case, had a few members of Jim’s family (oldies in

this group will remember “Catbert,” I am sure) not become

overly-involved & added to our stress the way they did.

In case I still didn’t answer your

question, yes, I believe it does appear that the transplant center wants the

biopsy to rule out recurrent PSC.

Love,

Maureen (who smiled upon learning she makes

smile)

[Guest guest]

, thanks for your response, I

appreciate it more than I can say (especially your prayers).

Yes, Jim’s going on his Mt. Whitney

climb, and while that’s totally fine by me, I don’t entirely

understand it, because if it were me, I’d be like “been there, done

that, got the t-shirt.” He and made this same climb already,

with his brother & nephew along to boot, back in ‘04. But it’s

Jim conquering the mountain again, not me, and a (transplanted) man’s

gotta do what a man’s gotta do, I s’pose? My two bits,

though, especially after reading about Barb’s Ken catching such whopping

bass (what does he use for bait?!)…? Jim, let’s both of us go

bass catch-and-release fishing, instead! ;-)

As you said, life should NOT be put on

hold. It didn’t take the transplant for Jim to learn this; we

ascribe to this philosophy, Jim and I, having been taught this by his local

hepatologist (and friend), who does not believe PSCers should sit on the

sidelines and just passively watch life pass them by… the doctor was

fully in favor of Jim & I vacationing in Ireland (by way of England, at Jim’s

request) in the summer of ’01, while Jim was a very sick man (roughly 6

months before the transplant, but prior to ascites becoming a real issue).

Before our departure, Jim got supercharged with a couple of transfusions, and

with the doctor’s blessing, I planned a trip that Jim would love using

his AAA travel gift certificates (equivalent of the 25 and 30-year awards from

the family business). The travel agent worked with our physical

issues/needs, Jim’s and mine, and the itinerary allowed for some

delicious napping in the most wonderful places! It was a sad but sweet

time, with priceless memories. It shocks Jim now, to look at his gaunt

face compared to his robust appearance now. Don’t think this is

morbid, but we had the most bittersweet conversations in Shakespeare’s

garden… while all the tourists did their tourist thing, Jim shared with

me all his favorite hymns he wanted sung if he was ever to have a memorial

service. It broke my heart, but at the same time, it was a milestone for

the man who told his doctor no, no, no, he’d never need a transplant, and,

furthermore, the only reason he got colitis 12 years prior is because his wife didn’t

cook right.

Jim’s no stranger to denial, but

this time (to your question), “fatty liver” is MY being in denial

about suspected recurrent PSC… if elevated Alk Phos has to be due to

anything, I much prefer fatty liver as the culprit, not PSC recidivism. Jim

deluded himself into thinking our daughters would be there for me leading up

to, during, and after the transplant, but the truth is, most family members (friend

or foe, close or distant) just sucked me bone dry. Thank God for this

amazing group, because criminy, post transplant, I’ve craved a simple,

simple life, probably because I’ll always feel toasted from the stress

leading up to Jim & ’s ’01 transplant… since, in a

perfect world, no wife and mother should have to stand between 2 hospital

gurneys, 1 holding her husband and the other, her son. The same can be

said for

But we don’t live in a perfect

world, illness sucks, and we do the best we can to trudge on and fight the

fight, under whatever circumstances God allows to fall our way – of this

I have become convinced. ’s only prayer request was that God

be glorified in the process, and he feels that happened. Sometimes I can

hardly believe Jim allowed and accepted The Gift from our son, because my gosh…

it’s such a sacrifice, and our son had his whole life ahead of him!

Sometimes I think I’m a lousy Christian witness to the medical miracle

that took place between our son and his dad, because although do I know and do trust

that God doesn’t allow us the unbearable burden, back then, judging from

how shell-shocked I was afterward, it all sure seemed unbearable. They

say hindsight is 20-20, so, going with that, I’m looking back, and I tell

you, I was licking my wounds for a good while. Perhaps that wouldn’t

have been quite the case, had a few members of Jim’s family (oldies in

this group will remember “Catbert,” I am sure) not become

overly-involved & added to our stress the way they did.

In case I still didn’t answer your

question, yes, I believe it does appear that the transplant center wants the

biopsy to rule out recurrent PSC.

Love,

Maureen (who smiled upon learning she makes

smile)

[Guest guest]

Maureen,

Keep us posted

as to how things go. You are all in our prayers and even in your posts

today had me cracking up. Jim is lucky to have you. We are lucky

too. Hopefully we will meet soon when my brother and I finally share a

visit out in San Diego.

I have yet to get out there although the kids were out there last summer.

He really likes this new girl he is dating…so who knows. (Long

story there on how they met…worth sharing too…she is a relay

operator for the hearing impaired…--my bro is profoundly deaf—and the

way the new system works he uses a screen and signs to her and vice versa so

they see each other and she speaks to the third party on the phone…well I

guess completely against regulations they planned a meeting with operator # 659

(I don’t know what # she really is) and the rest is history.)

Hopefully she will continue to make him happy. He is 30 and deserves to

be.

Let us know

when you all schedule things for Jim so we can focus some prayers on him.

I know that helps.

Let me know how

the Devil Wears Prada was? That looks so good.

Sincerest

Blessings,

Mom of Zoe (13) My very normal (teenager normal) soccer player;

Noah (8 1/2) Indeterminate colitis, PSC, Osteopenia (1-4

lumbar vertebrae), Enthesopathy;

Aidan (4 1/2) Moderately-severe SNHL bilaterally

Recycle

Yourself

Become an

Organ Donor

[Guest guest]

Maureen,

Keep us posted

as to how things go. You are all in our prayers and even in your posts

today had me cracking up. Jim is lucky to have you. We are lucky

too. Hopefully we will meet soon when my brother and I finally share a

visit out in San Diego.

I have yet to get out there although the kids were out there last summer.

He really likes this new girl he is dating…so who knows. (Long

story there on how they met…worth sharing too…she is a relay

operator for the hearing impaired…--my bro is profoundly deaf—and the

way the new system works he uses a screen and signs to her and vice versa so

they see each other and she speaks to the third party on the phone…well I

guess completely against regulations they planned a meeting with operator # 659

(I don’t know what # she really is) and the rest is history.)

Hopefully she will continue to make him happy. He is 30 and deserves to

be.

Let us know

when you all schedule things for Jim so we can focus some prayers on him.

I know that helps.

Let me know how

the Devil Wears Prada was? That looks so good.

Sincerest

Blessings,

Mom of Zoe (13) My very normal (teenager normal) soccer player;

Noah (8 1/2) Indeterminate colitis, PSC, Osteopenia (1-4

lumbar vertebrae), Enthesopathy;

Aidan (4 1/2) Moderately-severe SNHL bilaterally

Recycle

Yourself

Become an

Organ Donor