Re: Transplant worries -

[Guest guest]

-----Original

Message-----

His worry is will his new liver be rejected

I can understand the

worry. I think it stems from years

of hearing “rejection” is the most evil thing that can happen to

people. As we grew up we heard about

it in movies, TV and from people who in the old days

believed it (and actually heard of it) killing people. Most people never gave it a second

thought because it wasn’t something we ever had to worry about. Then along came PSC and the ball game changed, now our ears perk up when we hear it.

I’d suggest your

husband talk to his doctor and learn more about it. Yes it can be nasty, but with the

invention of a whole line of different immune suppressants the meaning and

depth of “rejection” has forever changed! “Rejection” happens to

almost everyone, not just folks who’ve had a liver transplant, but to everyone

whose had a transplant. When it happens the doctors merely

increase the immune suppressant until the episode clears. Can it kill you, yup, but now a days it very

rarely gets to that point. Why? Because after you’ve had a

transplant the doctors will tell you this, they can tell by your blood work –

long before you know it, that you’re having an episode. That’s why for the rest of your

life every patient must get their blood work done on a regular basis. It usually follows a regular course post

transplant, first it’s twice a week, then weekly,

then every 2 weeks, once a month, etc. They do this so they can catch rejection long

before it does any permanent damage.

After your first year (and every year following) the chance of rejection

goes down. Once your husband

understands this, he’ll feel much more comfortable. HTH

Barb in Texas - Together in the Fight, Whatever it Takes!

Son Ken (34) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas

__

[Guest guest]

-----Original

Message-----

His worry is will his new liver be rejected

I can understand the

worry. I think it stems from years

of hearing “rejection” is the most evil thing that can happen to

people. As we grew up we heard about

it in movies, TV and from people who in the old days

believed it (and actually heard of it) killing people. Most people never gave it a second

thought because it wasn’t something we ever had to worry about. Then along came PSC and the ball game changed, now our ears perk up when we hear it.

I’d suggest your

husband talk to his doctor and learn more about it. Yes it can be nasty, but with the

invention of a whole line of different immune suppressants the meaning and

depth of “rejection” has forever changed! “Rejection” happens to

almost everyone, not just folks who’ve had a liver transplant, but to everyone

whose had a transplant. When it happens the doctors merely

increase the immune suppressant until the episode clears. Can it kill you, yup, but now a days it very

rarely gets to that point. Why? Because after you’ve had a

transplant the doctors will tell you this, they can tell by your blood work –

long before you know it, that you’re having an episode. That’s why for the rest of your

life every patient must get their blood work done on a regular basis. It usually follows a regular course post

transplant, first it’s twice a week, then weekly,

then every 2 weeks, once a month, etc. They do this so they can catch rejection long

before it does any permanent damage.

After your first year (and every year following) the chance of rejection

goes down. Once your husband

understands this, he’ll feel much more comfortable. HTH

Barb in Texas - Together in the Fight, Whatever it Takes!

Son Ken (34) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas

__

[Guest guest]

-----Original

Message-----

His worry is will his new liver be rejected

I can understand the

worry. I think it stems from years

of hearing “rejection” is the most evil thing that can happen to

people. As we grew up we heard about

it in movies, TV and from people who in the old days

believed it (and actually heard of it) killing people. Most people never gave it a second

thought because it wasn’t something we ever had to worry about. Then along came PSC and the ball game changed, now our ears perk up when we hear it.

I’d suggest your

husband talk to his doctor and learn more about it. Yes it can be nasty, but with the

invention of a whole line of different immune suppressants the meaning and

depth of “rejection” has forever changed! “Rejection” happens to

almost everyone, not just folks who’ve had a liver transplant, but to everyone

whose had a transplant. When it happens the doctors merely

increase the immune suppressant until the episode clears. Can it kill you, yup, but now a days it very

rarely gets to that point. Why? Because after you’ve had a

transplant the doctors will tell you this, they can tell by your blood work –

long before you know it, that you’re having an episode. That’s why for the rest of your

life every patient must get their blood work done on a regular basis. It usually follows a regular course post

transplant, first it’s twice a week, then weekly,

then every 2 weeks, once a month, etc. They do this so they can catch rejection long

before it does any permanent damage.

After your first year (and every year following) the chance of rejection

goes down. Once your husband

understands this, he’ll feel much more comfortable. HTH

Barb in Texas - Together in the Fight, Whatever it Takes!

Son Ken (34) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas

__

[Guest guest]

Tim, I really appreciate you posting this. I was just diagnosed this

past fall and have been in a funk since. Mild depression, perhaps. I

have been assuming that I'd be dead before my children learn to drive

(in spite of what so many others here have said). I have two small

kids, and this disease and the prognosis has been on my mind so much

so that it affects my whole attitude about everything. I'm living

like there is no hope, unable to find my way out. Your post gives me

hope that I can live to see my kids grow up. I really need to hang on

to that hope. Thank you!

Suzanna

[Guest guest]

Tim, I really appreciate you posting this. I was just diagnosed this

past fall and have been in a funk since. Mild depression, perhaps. I

have been assuming that I'd be dead before my children learn to drive

(in spite of what so many others here have said). I have two small

kids, and this disease and the prognosis has been on my mind so much

so that it affects my whole attitude about everything. I'm living

like there is no hope, unable to find my way out. Your post gives me

hope that I can live to see my kids grow up. I really need to hang on

to that hope. Thank you!

Suzanna

[Guest guest]

Tim, I really appreciate you posting this. I was just diagnosed this

past fall and have been in a funk since. Mild depression, perhaps. I

have been assuming that I'd be dead before my children learn to drive

(in spite of what so many others here have said). I have two small

kids, and this disease and the prognosis has been on my mind so much

so that it affects my whole attitude about everything. I'm living

like there is no hope, unable to find my way out. Your post gives me

hope that I can live to see my kids grow up. I really need to hang on

to that hope. Thank you!

Suzanna

[Guest guest]

Thank you again for writing Tim, I cannot wait for my husband to read all of the posts in this group. Everyone has been so helpful and kind. has been in the hospital since last Wednesday and I've told him about this group. A lot of the members with PSC sound so much like him, as far as how they feel, the depression etc. I think it will do him a lot of good to relate to people who really know how he feels. I try to relate, but I feel like he needs something more. This is by far the best group regarding PSC that I've found!!! Thanks again

Transplant worries -

> Hi Tim, I am new to this group and was wondering about your> transplant. I see that you are now having problems with the bile> ducts, my husband was diagnosed with PSC in 2003 and is now debating> on a transplant. His worry is will his new liver be rejected, and> what if the is UC will harm the new liver. ...,I was 33 when evidence of liver problems appeared, 42 when I wasdiagnosed with PSC and 51 when I had a liver transplant. Recurrent PSCwas diagnosed 4 years later and 9 1/2 years after my first transplantled to another last June. There were complications (hepatic arterythrombosis) that led to another in July. Since then I have been doingvery well.Fears of rejection and

other complications are natural to have beforeand after transplantation, I certainly did! I believe they are vastlyoverblown, primarily because the transplant team has a difficult timecommunicating how effective they are at controlling rejection and howmany options they have to do it. When they try to keep it simple it ishard to believe it is effective as they say and when it is explainedin detail I just get lost. Suffice it to say I have had rejectionepisodes and do believe others could have been handled easily.Recurrent PSC is another concern. There is evidence that it happensmore frequently in males with intact colons. Both strikes against me.There are some doctors that recommend prophylactic colectomy eitherbefore or with transplant surgery, but the majority do not advisethis. Recurrent PSC seems to be as unpredictable and uncontrollable asthe original and I try to be philosophical about it and

handle it thesame way.Do not fear a transplant when one becomes necessary and available.Tim R, tx #3 7/7/07

[Guest guest]

Tim: I would recommend tht you try to attend the PSC conference next

year in Chicago around the first of May. I did this year for the

first time and you could not believe all the wonderful people that I

met that all have the same problems. You ould ask any question of

the other PSC'er or of the doctors that were there. anyway good luck

and everyone on this site will be thinking of you.

LEE G

>

> Thank you again for writing Tim, I cannot wait for my husband Chris

to read all of the posts in this group.  Everyone has been so helpful

and kind.  has been in the hospital since last Wednesday and

I've told him about this group.  A lot of the members with PSC sound

so much like him, as far as how they feel, the depression etc.  I

think it will do him a lot of good to relate to people who really

know how he feels.  I try to relate, but I feel like he needs

something more.  This is by far the best group regarding PSC that

I've found!!! Thanks again

>

>

>

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