Can there be a third transplant ???

[Guest guest]

I write my first post in here with a somewhat heavy heart.

My daughter was born in 1982. In 1985 she was diagnosed with PSC and a

bowel disease. In 1992 after 10 years of constant Ulcerative Colitis

the doctors suggested a pelvic pouch. By 1993 and many bowel surgeries

the pelvic pouch was completed and working.The next 3 years were

wonderful other than a few bouts of pouchitis. In 1996 her liver

function tests started going crazy. Within 6 months she had problems

with bleeding esophageal varices. The psc rapidly put us on the

transplant list. She got her first transplant in March 1997. It was a

wonderful uneventful fast recovery. However it went downhill quickly 2

months later when she became jaundiced and itchy. She had hepatic

artery thrombosis.

How do you tell a 15 year old that she is facing the WAITING GAME of

will I,and if I do when will I get another transplant. Well we

received that miracle in Dec of 1997.

Life eventually went back to normal and she enjoyed life and started

speaking at schools and to medical students about organ donation.

During these years she struggled with bowel obstructions and a lot of

bouts of pouchitis. Other than adjusting her tacrolimus and other

meds her liver did well until 2006 when her liver function tests

started going a bit crazy. After some testing we were told her PSC was

back but only mildly and they started her on ursidol. This was a huge

shock and hard to swallow but eventually we accepted it and hoped for

many more years before it would get worse.

In 2006 she had emergency bowel surgery for a perforated bowel. This

actually turned out to be a blessing in disguise as the surgeries that

followed seemed to have solved years of problems.

For the last 12 months she has had her best year yet...no surgeries,

no illness, no exhaustion just a wonderful year. She was finally well

enough to work full time and put a lot of effort into her favorite

past time of horse back riding and competing in dressage. She moved

to another province and got a fantastic job. This is the first time in

25 years that she has not lived in the same city as me and it has

taken some getting used to.

Well two Fridays ago I got a phone call that broke my heart. She was

crying and said she had just had a special kind of Ultra sound of her

liver. They told her the PSC was really bad and it was time to talk

about her options. My heart was breaking as I tried to console her

and talk about her options. Three phone calls later she told me she

really felt she could not go through with another transplant. The

waiting,the pain,the not knowing if she would get a liver. Knowing

that her chance of a successful third transplant were not great were

the overwhelming thoughts consuming her. I told her I would be there

for her no matter what she decided. I told her I would try and find

out any new info as i could about PSC and a third liver transplant.I

know I have no right to try and tell her what to do. This is a

decision which only she can make.

As I struggle to face the news I get another call from her 1 week

later. Mom the doctor just called and they found a mass on the right

lobe of my liver.I listen tears pouring down my face as she tells me

they don't think it is cancer. They are pretty sure its scar tissue

and they are going to do laproscopic laser surgery hopefully next

week. I am devastated and she sounds fine about it. I want to come and

be there for her But she says no, this is no big deal just day

surgery. She doesn't want to discuss much other than to say she is

going to continue to live her life and deal with this when it makes

her so ill she has no choice. I worry, I cry and have a constant sick

feeling in my stomach.

I have spent many hours in the last 2 weeks reading hundreds of posts

in this group as well as trying to find out any information on the

chances, risks and if there are any people that have had a third liver

transplant.

I apologize for writing such a run on lengthy post. My intention was

only to ask for any info on a third liver transplant. Some how I

ended up writing a dam story....I guess I needed to get it off my chest.

Winnipeg,MB, Canada

ps She also mentioned something about a new or experimental drug

that is very strong and you take it one week on and one week off. I

believe she said they have tried it in Pittsburgh. Does anyone have

an idea what drug this might be?

[Guest guest]

,

Welcome to this forum. I am sorry you need

us, but I am very happy you found us.

[Guest guest]

Dear ,Hang in there, yes people on this site have had 3 transplants. I hope they see your post and answer you.My son was also born in 82 and we have almost lost him twice due to a pulmonary embolism and a septic event.Then he had a total colectomy and now deals with pouchitis and rising LFT's. My heart goes out to you as I know the emotional bad place you are in too well.Somedays it scares me to death to know that a transplant or transplants might or very likely will also be on our journey.It's why I fight so hard to back research for an effective treatment.I know it is hard, but try to think positive thoughts and know that this situation too can be overcome.My prayers will be added to yours that your daughter will keep moving on her journey past this obstacle.LeeI have spent many hours in the last 2 weeks reading hundreds of postsin this group as well as trying to find out any information on thechances, risks and if there are any people that have had a third livertransplant. Winnipeg,MB, Canada

[Guest guest]

,

There have been a few people here that have had three transplants. I

myself have had two. Since your daughter's first two were realitively

close together I would think that her situation would be more similiar

to mine where I went 7 years between transplants and had the second one

because of recurrent PSC. What the doctors told me was that the

surgery was more intense because they had to deal with all the old scar

tissue. My surgery went fine and I was back to work full time in 3

months and have been doing fine since. I understand your daughters

concerns about waiting. To me the waiting was much worse then the

surgery and recovery. I'm not sure how transplants are determined in

Canada, but things have changed her in the states. They now have a

MELD system to determine transplant needs. This reduced my wait time

for the second one greatly. Tell your daughter to stay strong and

positive, there will be life after her next transplant.

Take Care,

PSC 89, TX1 97, TX2 04

>>> I have spent many hours in the last 2 weeks reading hundreds of

posts

> in this group as well as trying to find out any information on the

> chances, risks and if there are any people that have had a third liver

> transplant.

> Winnipeg,MB, Canada

[Guest guest]

never be sorry for writing or venting to this group...I cant help with your ???? I am still on the list waiting...But it always hurts to read about the kids and what they have to go thru and the family to...Ami Fox is a fine example with her son... God Bless you and your daughter (hope you can find some help) Jeannefurnishsusan wrote: I write my first post in here with a somewhat heavy

heart. My daughter was born in 1982. In 1985 she was diagnosed with PSC and abowel disease. In 1992 after 10 years of constant Ulcerative Colitisthe doctors suggested a pelvic pouch. By 1993 and many bowel surgeriesthe pelvic pouch was completed and working.The next 3 years werewonderful other than a few bouts of pouchitis. In 1996 her liverfunction tests started going crazy. Within 6 months she had problemswith bleeding esophageal varices. The psc rapidly put us on thetransplant list. She got her first transplant in March 1997. It was awonderful uneventful fast recovery. However it went downhill quickly 2months later when she became jaundiced and itchy. She had hepaticartery thrombosis. How do you tell a 15 year old that she is facing the WAITING GAME ofwill I,and if I do when will I get another transplant. Well wereceived that miracle in Dec of 1997.Life eventually went back to normal and she enjoyed life and

startedspeaking at schools and to medical students about organ donation.During these years she struggled with bowel obstructions and a lot ofbouts of pouchitis. Other than adjusting her tacrolimus and othermeds her liver did well until 2006 when her liver function testsstarted going a bit crazy. After some testing we were told her PSC wasback but only mildly and they started her on ursidol. This was a hugeshock and hard to swallow but eventually we accepted it and hoped formany more years before it would get worse.In 2006 she had emergency bowel surgery for a perforated bowel. Thisactually turned out to be a blessing in disguise as the surgeries thatfollowed seemed to have solved years of problems.For the last 12 months she has had her best year yet...no surgeries,no illness, no exhaustion just a wonderful year. She was finally wellenough to work full time and put a lot of effort into her favoritepast time of

horse back riding and competing in dressage. She moved to another province and got a fantastic job. This is the first time in25 years that she has not lived in the same city as me and it hastaken some getting used to.Well two Fridays ago I got a phone call that broke my heart. She wascrying and said she had just had a special kind of Ultra sound of herliver. They told her the PSC was really bad and it was time to talkabout her options. My heart was breaking as I tried to console herand talk about her options. Three phone calls later she told me shereally felt she could not go through with another transplant. Thewaiting,the pain,the not knowing if she would get a liver. Knowingthat her chance of a successful third transplant were not great werethe overwhelming thoughts consuming her. I told her I would be therefor her no matter what she decided. I told her I would try and findout any new info as i could about PSC and a

third liver transplant.Iknow I have no right to try and tell her what to do. This is adecision which only she can make.As I struggle to face the news I get another call from her 1 weeklater. Mom the doctor just called and they found a mass on the rightlobe of my liver.I listen tears pouring down my face as she tells methey don't think it is cancer. They are pretty sure its scar tissueand they are going to do laproscopic laser surgery hopefully nextweek. I am devastated and she sounds fine about it. I want to come andbe there for her But she says no, this is no big deal just daysurgery. She doesn't want to discuss much other than to say she isgoing to continue to live her life and deal with this when it makesher so ill she has no choice. I worry, I cry and have a constant sickfeeling in my stomach.I have spent many hours in the last 2 weeks reading hundreds of postsin this group as well as trying to find out any

information on thechances, risks and if there are any people that have had a third livertransplant.I apologize for writing such a run on lengthy post. My intention wasonly to ask for any info on a third liver transplant. Some how Iended up writing a dam story....I guess I needed to get it off my chest. Winnipeg,MB, Canadaps She also mentioned something about a new or experimental drugthat is very strong and you take it one week on and one week off. Ibelieve she said they have tried it in Pittsburgh. Does anyone havean idea what drug this might be? Jeanne

[Guest guest]

my thoughts and prayers are with you and your daughter.-rachel

>

> I write my first post in here with a somewhat heavy heart.

> My daughter was born in 1982. In 1985 she was diagnosed with PSC and a

> bowel disease. In 1992 after 10 years of constant Ulcerative Colitis

> the doctors suggested a pelvic pouch. By 1993 and many bowel surgeries

> the pelvic pouch was completed and working.The next 3 years were

> wonderful other than a few bouts of pouchitis. In 1996 her liver

> function tests started going crazy. Within 6 months she had problems

> with bleeding esophageal varices. The psc rapidly put us on the

> transplant list. She got her first transplant in March 1997. It was a

> wonderful uneventful fast recovery. However it went downhill quickly 2

> months later when she became jaundiced and itchy. She had hepatic

> artery thrombosis.

> How do you tell a 15 year old that she is facing the WAITING GAME of

> will I,and if I do when will I get another transplant. Well we

> received that miracle in Dec of 1997.

> Life eventually went back to normal and she enjoyed life and started

> speaking at schools and to medical students about organ donation.

>

> During these years she struggled with bowel obstructions and a lot of

> bouts of pouchitis. Other than adjusting her tacrolimus and other

> meds her liver did well until 2006 when her liver function tests

> started going a bit crazy. After some testing we were told her PSC was

> back but only mildly and they started her on ursidol. This was a huge

> shock and hard to swallow but eventually we accepted it and hoped for

> many more years before it would get worse.

> In 2006 she had emergency bowel surgery for a perforated bowel. This

> actually turned out to be a blessing in disguise as the surgeries that

> followed seemed to have solved years of problems.

> For the last 12 months she has had her best year yet...no surgeries,

> no illness, no exhaustion just a wonderful year. She was finally well

> enough to work full time and put a lot of effort into her favorite

> past time of horse back riding and competing in dressage. She moved

> to another province and got a fantastic job. This is the first time in

> 25 years that she has not lived in the same city as me and it has

> taken some getting used to.

> Well two Fridays ago I got a phone call that broke my heart. She was

> crying and said she had just had a special kind of Ultra sound of her

> liver. They told her the PSC was really bad and it was time to talk

> about her options. My heart was breaking as I tried to console her

> and talk about her options. Three phone calls later she told me she

> really felt she could not go through with another transplant. The

> waiting,the pain,the not knowing if she would get a liver. Knowing

> that her chance of a successful third transplant were not great were

> the overwhelming thoughts consuming her. I told her I would be there

> for her no matter what she decided. I told her I would try and find

> out any new info as i could about PSC and a third liver transplant.I

> know I have no right to try and tell her what to do. This is a

> decision which only she can make.

> As I struggle to face the news I get another call from her 1 week

> later. Mom the doctor just called and they found a mass on the right

> lobe of my liver.I listen tears pouring down my face as she tells me

> they don't think it is cancer. They are pretty sure its scar tissue

> and they are going to do laproscopic laser surgery hopefully next

> week. I am devastated and she sounds fine about it. I want to come and

> be there for her But she says no, this is no big deal just day

> surgery. She doesn't want to discuss much other than to say she is

> going to continue to live her life and deal with this when it makes

> her so ill she has no choice. I worry, I cry and have a constant sick

> feeling in my stomach.

> I have spent many hours in the last 2 weeks reading hundreds of posts

> in this group as well as trying to find out any information on the

> chances, risks and if there are any people that have had a third liver

> transplant.

> I apologize for writing such a run on lengthy post. My intention was

> only to ask for any info on a third liver transplant. Some how I

> ended up writing a dam story....I guess I needed to get it off my

chest.

> Winnipeg,MB, Canada

>

> ps She also mentioned something about a new or experimental drug

> that is very strong and you take it one week on and one week off. I

> believe she said they have tried it in Pittsburgh. Does anyone have

> an idea what drug this might be?

>

[Guest guest]

{{{{{}}}}} My thoughts and prayers are with you, your daughter,

and family as well. I'm so sorry to hear you are watching her go

through this.

Genevieve

UC 1983, J-Pouch 1999, PSC 12/07

>

> I write my first post in here with a somewhat heavy heart.

> Winnipeg,MB, Canada

>

>

[Guest guest]

You've already heard that others have had three transplants so I will

tackle another part of your message. One Mom to another, my guess is

that both of you would feel better if you were together as she

undergoes the next procedure if you have the ability to go.

Penny

>I am devastated and she sounds fine about it. I want to come and

> be there for her But she says no, this is no big deal just day

> surgery. She doesn't want to discuss much other than to say she is

> going to continue to live her life and deal with this when it makes

> her so ill she has no choice. I worry, I cry and have a constant sick

> feeling in my stomach.

[Guest guest]

Thank you all so much for your replies to my posting

Penny I wish she would let me come up to be with her but as it sits

right now she does not want me to.

Jeanne,Genevieve and thank you for your kind words and prayers.

thank you for sharing tx info. It is great to hear how well you

are doing.

Chaim thank you for your welcome and kind thoughts.

Lee I know you understand what I am going through even though I wish

no one would ever feel how I have felt. This is the first time in

years that I feel the need to talk to people that understand what I am

going through. My friends are wonderful but it seems this time is just

too much for anyone to handle.

I know I have to find a way of not worrying too much. The past has

proved to me that worrying ahead of time does nothing but suck away at

my strength that I am going to need to support my daughter.

Thank you again for the caring posts.

[Guest guest]

There are at least three members of the Triple-Tx club in this group (and 13 Double-Tx) - it does happen. In each of the 3x cases, two of their transplants were very close together (graft failure). Unless there's a medical reason against it (or something in the Canadian protocol), there doesn't appear to be anything preventing another Tx.

Arne

56 - UC 1977, PSC 2000

Alive and well in Minnesota

[Guest guest]

,

There certainly can be! I received my third 7/7/07 after an arterial

thrombosis block the hepatic artery of my second transplant which I

received 6/19/07 (3 weeks earlier). I was on the waiting list a little

over 2 years because of recurrent PSC when I got the call for my

second transplant. So if Barbara does get a third transplant it will

be for the same reasons that I had, just in a different order.

Second, third and subsequent transplants are all going to be based on

medical necessity and patient viability. I am 60 and except for my

liver, relatively healthy with no co-morbidities that would be

contraindicative of a transplant. I'm sure that Barbara, being a young

26, would also be a good candidate for another transplant.

Welcome back to the group . I recall some of your post from 8

years ago. Barbara seemed like a very caring person, starting a

support group for teens with transplants (I thought at the time that

it might be difficult to get make that work). I am sorry to hear that

she has recurrent PSC, and hope that she leans on you closely for

advice and support as she faces this new medical challenge.

Tim R, ltx 4/4/98, 6/19/07 & 7/7/07

[Guest guest]

>

> Welcome back to the group . I recall some of your post from 8

> years ago. Barbara seemed like a very caring person, starting a

> support group for teens with transplants (I thought at the time that

> it might be difficult to get make that work). I am sorry to hear that

> she has recurrent PSC, and hope that she leans on you closely for

> advice and support as she faces this new medical challenge.

>

> Tim R, ltx 4/4/98, 6/19/07 & 7/7/07

>

WOW Tim I am embarrassed to say that I had totally forgotten about

belonging to this group back in 1999. I know I am old and forget lots

but wow this is strange. I searched our last name in the posts and got

to read through many posts from Barbara and myself. Oh my I cried when

I read some of the posts. I had forgotten what a fighter and advocate

Barb had become at such a young age. I read a post where I was telling

a mom of a newly diagnosed child how Barb and I lived our lives and

got through the WAITING GAME. Funny how I have been feeling so lost

and desperate when I have already been through this twice before. Now

I remember this group and I must say thank you to Tim and all the

others that answered so many of my questions back then.

I am so glad I have found you all again Thank You