Happy re-birthday!

[Guest guest]

Wonderful news.....Good luck to you and enjoy your new healthy

life....I talked with a friend of mine the other night that had a

transplant in January of 1991 and he is doing great.......

>

> To B - 03/16/05

>

> From the archives of 2005 (10 days after tx!)

>

> Dear psc group this is b i just had my liver transplant the

> wednesday before last. Im 26 ive had psc ffrom when i was 15 and so

far i

> feel ok . I was fortunate to get a 68 year old woman's liver in great

> condition rip to her she had died of a brain hemmorage. Recovery has

been an

> ordeal but not as bad as i thought. (message 70667)

>

[Guest guest]

Wonderful news.....Good luck to you and enjoy your new healthy

life....I talked with a friend of mine the other night that had a

transplant in January of 1991 and he is doing great.......

>

> To B - 03/16/05

>

> From the archives of 2005 (10 days after tx!)

>

> Dear psc group this is b i just had my liver transplant the

> wednesday before last. Im 26 ive had psc ffrom when i was 15 and so

far i

> feel ok . I was fortunate to get a 68 year old woman's liver in great

> condition rip to her she had died of a brain hemmorage. Recovery has

been an

> ordeal but not as bad as i thought. (message 70667)

>

[Guest guest]

Wonderful news.....Good luck to you and enjoy your new healthy

life....I talked with a friend of mine the other night that had a

transplant in January of 1991 and he is doing great.......

>

> To B - 03/16/05

>

> From the archives of 2005 (10 days after tx!)

>

> Dear psc group this is b i just had my liver transplant the

> wednesday before last. Im 26 ive had psc ffrom when i was 15 and so

far i

> feel ok . I was fortunate to get a 68 year old woman's liver in great

> condition rip to her she had died of a brain hemmorage. Recovery has

been an

> ordeal but not as bad as i thought. (message 70667)

>

[Guest guest]

Happy re-birthday!

>

> This is , athan's sister, writing to let you know that athan

> has a new liver! The transplant took place during the night last night and

[Guest guest]

Happy re-birthday!

>

> This is , athan's sister, writing to let you know that athan

> has a new liver! The transplant took place during the night last night and

[Guest guest]

Happy re-birthday!

>

> This is , athan's sister, writing to let you know that athan

> has a new liver! The transplant took place during the night last night and

[Guest guest]

HOORAY! Happy 1 year, !!

Ami - Migraines, FMS

mom to - 10 yrs - Double Lung Tx 2/26/2006, PSC - Tx 7/16/2007, Diabetes, Hypothyroid, GERD, ADHD, Osteopenia http://caringbridge.org/visit/seanfox

mom to Emma - 14 yrs - Migraines

stepmom to - 15 yrs - ADHD, ODD

~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~

athan G's transplantDear friends,This is , athan's sister, writing to let you know that athan has a new liver! The transplant took place during the night last night and took about 7 hours. He came into the recovery room about 6:00 this morning and the surgeons said the whole procedure went extremely well. They said the new liver was a good one and the old one was terrible - completely worn out. He went downhill rapidly in the weeks before the transplant, with this MELD score jumping to 32 and his bilirubin to 20.1 the day of the transplant.His breathing tube came out this morning and his nasogastric tube soon after that. He was able to eat a whole meal of clear

liquids this evening. He was in great spirits throughout the day and said that he is hurting some but doesn't feel sick anymore. In fact, he said he could tell right after waking up after the surgery that he didn't feel sick anymore.He asked me to send this update to his support group. Please keep him in your thoughts and/or prayers this week! He has done really well but it is only the first day. We, his family, appreciate your support of him through the years. He will probably type the next update himself, as soon as he is able to get on a computer.Blessings, (for athan)

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

HOORAY! Happy 1 year, !!

Ami - Migraines, FMS

mom to - 10 yrs - Double Lung Tx 2/26/2006, PSC - Tx 7/16/2007, Diabetes, Hypothyroid, GERD, ADHD, Osteopenia http://caringbridge.org/visit/seanfox

mom to Emma - 14 yrs - Migraines

stepmom to - 15 yrs - ADHD, ODD

~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~

athan G's transplantDear friends,This is , athan's sister, writing to let you know that athan has a new liver! The transplant took place during the night last night and took about 7 hours. He came into the recovery room about 6:00 this morning and the surgeons said the whole procedure went extremely well. They said the new liver was a good one and the old one was terrible - completely worn out. He went downhill rapidly in the weeks before the transplant, with this MELD score jumping to 32 and his bilirubin to 20.1 the day of the transplant.His breathing tube came out this morning and his nasogastric tube soon after that. He was able to eat a whole meal of clear

liquids this evening. He was in great spirits throughout the day and said that he is hurting some but doesn't feel sick anymore. In fact, he said he could tell right after waking up after the surgery that he didn't feel sick anymore.He asked me to send this update to his support group. Please keep him in your thoughts and/or prayers this week! He has done really well but it is only the first day. We, his family, appreciate your support of him through the years. He will probably type the next update himself, as soon as he is able to get on a computer.Blessings, (for athan)

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Thanks to all who wished me a happy re-birthday! Things are going well

for me (in spite of fighting some sort of infection right now), and I'm

very greatful for the gift that was given me. My church threw a

re-birthday party for me complete with cake a couple weeks ago.

Thanks again!

athan

[Guest guest]

Thanks to all who wished me a happy re-birthday! Things are going well

for me (in spite of fighting some sort of infection right now), and I'm

very greatful for the gift that was given me. My church threw a

re-birthday party for me complete with cake a couple weeks ago.

Thanks again!

athan

[Guest guest]

Thanks to all who wished me a happy re-birthday! Things are going well

for me (in spite of fighting some sort of infection right now), and I'm

very greatful for the gift that was given me. My church threw a

re-birthday party for me complete with cake a couple weeks ago.

Thanks again!

athan

[Guest guest]

Happy 10th, Aubrey!

Colleen

[Guest guest]

Happy 10th, Aubrey!

Colleen

[Guest guest]

Happy 10th, Aubrey!

Colleen

[Guest guest]

Happy re-birthday Aubrey. Wow 10 years!!!

Love to you and Caroline.

Joanne (mom of Todd)

Sent from my Verizon Wireless BlackBerry

[Guest guest]

Happy 10th Aubrey !!!As I said to you at the conference you look marvelous !!!So do you Caroline, but to see Aubrey looking so hale and hearty is wonderful.It was great to see you guys,LeeTo Aubrey (and Caroline!) 05/10/98From the archives of 1999:From: Aubrey Date: Mon Nov 15, 1999 12:37 pm Subject: Introduction

[Guest guest]

you amaze me at how you remember every year for everyone of us....thank you.....our thoughts continue to be with the donor family on this day and every day....

Mike and Patti'tough times don't last - tough people do'

To: From: stonehollow@...Date: Sat, 17 May 2008 11:15:43 -0500Subject: Happy re-birthday!

To Mike (and Patti!) 05/17/04

From the archives of 2004

From: "* *" <gemini_0306@h...>Date: Mon May 17, 2004 8:08 pmSubject: update on Mikeokay folks, here's the scoop......... Mike is out of surgery, he is in intensive care......the liver they took out of him was far worse than expected and they felt that he wouldn't have survived much longer with it. I guess to put it bluntly, he was dying in front of me and I didn't know it.

There is a small problem with one hepatic artery, they are watching blood flow and if they aren't happy they will go back in and reconstruct it, but they assured me that's no big deal.

They felt that they found a small, low grade cancerous tumour on his intestinal wall, but last word on that was that it was benign. It was resected and removed and the surgeon was not concerned about it at all.

I am so tired, I haven't slept since we got the call at midnight last night. Please pray for Mike and the donor families, who gave this incredible gift in the face of tragedy. Until you are on the receiving end of this miracle there is no way to comprehend what it means.

good night and I'll update tomorrow Patti"I used to have a handle on life - but it broke off"

[Guest guest]

you amaze me at how you remember every year for everyone of us....thank you.....our thoughts continue to be with the donor family on this day and every day....

Mike and Patti'tough times don't last - tough people do'

To: From: stonehollow@...Date: Sat, 17 May 2008 11:15:43 -0500Subject: Happy re-birthday!

To Mike (and Patti!) 05/17/04

From the archives of 2004

From: "* *" <gemini_0306@h...>Date: Mon May 17, 2004 8:08 pmSubject: update on Mikeokay folks, here's the scoop......... Mike is out of surgery, he is in intensive care......the liver they took out of him was far worse than expected and they felt that he wouldn't have survived much longer with it. I guess to put it bluntly, he was dying in front of me and I didn't know it.

There is a small problem with one hepatic artery, they are watching blood flow and if they aren't happy they will go back in and reconstruct it, but they assured me that's no big deal.

They felt that they found a small, low grade cancerous tumour on his intestinal wall, but last word on that was that it was benign. It was resected and removed and the surgeon was not concerned about it at all.

I am so tired, I haven't slept since we got the call at midnight last night. Please pray for Mike and the donor families, who gave this incredible gift in the face of tragedy. Until you are on the receiving end of this miracle there is no way to comprehend what it means.

good night and I'll update tomorrow Patti"I used to have a handle on life - but it broke off"

[Guest guest]

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. As we speak my husband

is in the hospital going on day #4, and we were told that it is time

to go talk to a transplant team. My prayers are with you!!!

> > - to Tim R! 4/4/98, by my records (hopefully, someone will say

if

> I'm

> > wrong!).

> >

> >

> > Arne

> > 52 - UC 9/77 - PSC 4/00

> > Alive and (mostly) well in Minnesota

>

[Guest guest]

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. As we speak my husband

is in the hospital going on day #4, and we were told that it is time

to go talk to a transplant team. My prayers are with you!!!

> > - to Tim R! 4/4/98, by my records (hopefully, someone will say

if

> I'm

> > wrong!).

> >

> >

> > Arne

> > 52 - UC 9/77 - PSC 4/00

> > Alive and (mostly) well in Minnesota

>

[Guest guest]

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. As we speak my husband

is in the hospital going on day #4, and we were told that it is time

to go talk to a transplant team. My prayers are with you!!!

> > - to Tim R! 4/4/98, by my records (hopefully, someone will say

if

> I'm

> > wrong!).

> >

> >

> > Arne

> > 52 - UC 9/77 - PSC 4/00

> > Alive and (mostly) well in Minnesota

>

[Guest guest]

Congratulations ,

On your first re-birthday. Can you give us an update on how you and your brother are doing?

Ian (52) PSC 89

To (and Danny) - 05/24/07!

From the archives of 2007:

From: On Behalf Of kmart11561

Sent: Sunday, October 07, 2007 6:23 AM

I totally understand what your going through. I hated those ERCP's but the truth of the matter is that its the only way to diagnose this disease. Are you seeing Tom Schiano at

Mount Sinai? I met with him for a second opinion after I was diagnosed. Great guy, very supportive. My PSC was diagnosed at North Shore Manhasset Hospital. I was rejected for

a life insurance policy because of high liver enzymes thats why I went to get it checked. I went to a GI doc named Ira Goldman, he first gave me a Sono, then MRCP. Although they

were both abnormal no one thought it was PSC. I then got an ERCP from McKinley at North Shore Hospital (he was very good as well). I didn't believe any of them

so I went searching all over Manhattan for second opinions. They all confirmed PSC. My wife set an appointment with Dr. Lindor at the Mayo Clinic in Rochester. I didn't want to

go because I felt fine I was totally asymptomatic. I would cancel the appointment and she would just reschedule it. I finally went. He ran all the same test everyone else did. First

MRCP. He then called me and said he saw something suspicious and would like to do an ERCP, he said he didn't think it was anything but wanted to do the ERCP to be on the safe

side. When they do a ERCP they take brushings and biopsy samples from your bile ducts. At the time 10/06 everyone was doing regular histology to check for abnormal cells

except Mayo. Lindor told me they were also testing the cells with an assay called FISH (much more sensitive then regular hist) and they were the only hospital doing it. My FISH

came back positive for cholangiocarcinoma. I couldn't believe it! I'm 37 years old and I have cancer. I went back to the Mayo and started a Chemo and radiation protocol that

again no one else had. I had a Liver TX on May 24th, my older brother Danny donated half

his liver to me. We did the surgery at New York Presbyterian. You are correct it is a long wait for a Liver. I didn't want my brother to go through that surgery but he wanted to do it

more then anything and the doctors at Columbia thought it was the best thing for me so they really pushed it. Both livers regenerate. Since the surgery I have played Volleyball

and went surfing. Don't worry! Everything is going to be ok. I know your scared, so was I. The ERCP is not that bad, I had five or six of them. The Cancer is gone. Thats my journey

with PSC. I hope I didn't scare you, not everyone with PSC gets cancer or even needs a liver transplant

-- Ian Cribb former P.Eng. (resigned in good standing)

[Guest guest]

Thanks, Arne. Here's an update on what's been going on.

He's been in the hospital three times this year. The first one was

for fever of unknown origin. He was having severe fever and

chills, but they couldn't determine what was causing it.

He went back to the ER in early April with the same thing, but they

wouldn't admit him (too many germs in the hospital). A few days

later then ended up admitting him for severe dehydration. After a

couple bags of fluids (pumped through the biggest needle we've every

seen), he was admitted for observation.

After three days, he was dismissed. A week later, he was back in

because the IV got infected. They did an ultrasound of his arm,

shoulder and neck and determined that the cause was a large blood

clot in the neck (from the central line put in FOUR years ago during

transplant) and the propofol that they gave him during his upper and

lower gi scan irritated it and caused all the infection in the

secondary iv.

He's now on coumidin for at least 6 months and lovenox for the past

two weeks to get the coumidin levels high enough. He left this

morning for another blood draw and hopefully will be able to stop

the lovenox.

Late last year, he was denied continuance of disability, but we

appealed and got it reinstated in early April. That's something

that I wouldn't wish on any PSC/liver patient. It's just ridiculous!

We're now fighting his Union for access to his pension.

All in all, we wouldn't change our minds about accepting the liver

four years ago. He's been a great stay-at-home-dad and the kids

love that.

Kathy

>

> To Lonnie (and Kathy!) 06/02/04

>

[Guest guest]

Arne,

I want to thank you ahead of time for the happy re-birthday. We're going to the lake tomorrow morning so I would have been late thanking you. I'm doing great, liver counts are really good, but at 65 other parts seem to be slowing down. To all of you, there is hope so keep up the fight. Tim L

Happy re-birthday!

..

[Guest guest]

Arne,

I want to thank you ahead of time for the happy re-birthday. We're going to the lake tomorrow morning so I would have been late thanking you. I'm doing great, liver counts are really good, but at 65 other parts seem to be slowing down. To all of you, there is hope so keep up the fight. Tim L

Happy re-birthday!

..