RE: Welcome

[Guest guest]

, welcome; this is a great list! Love, n

[Guest guest]

Hi Karyn. It's wonderful being apart of this Org. About my story please

feel free to place it in the stories file on the home page. Where in New

Orleans did you grow up? I lived in different areas of the city. I grew up

in midcity and eastern New Orleans. I presently live in Eastern New

Orleans. What part of New Orleans does your mom live in? I hope all your

plans for visiting here runs smoothly. Please let me know when when you are

coming I would love to get together. Yes, I will consider submitting a

request for one of the positions after I've been with Org. a while. Thnx

for telling me about this. Thnx for your weclome, again I'm glad to be

here. Take care and talk to you soon. Nan.

Welcome

Hi Nan,

I wanted ti welcome you to the Org. In your post you pretty well told your

story. Excerpts of it. Would it be okay if I place it in the stories file

on

the home page: www.pancassociation.org

I also wanted to let you know that I grew up in New Orleans. My mother

still

lives there. We are actually planning a visit in the next few months. God

willing.

At present we do not have a representative for New Orleans or Louisiana.

After you have been here for a while, you may want to consider submitting

a

request for one of the positions.

Good luck, I am glad you are here.

Karyn E.

KarynWms@... " >Karyn , RN/Founder/President

http://www.pancassociation.org " >Pancreatitis Association

International

Phone 1- /

[Guest guest]

Hi Karyn. It's wonderful being apart of this Org. About my story please

feel free to place it in the stories file on the home page. Where in New

Orleans did you grow up? I lived in different areas of the city. I grew up

in midcity and eastern New Orleans. I presently live in Eastern New

Orleans. What part of New Orleans does your mom live in? I hope all your

plans for visiting here runs smoothly. Please let me know when when you are

coming I would love to get together. Yes, I will consider submitting a

request for one of the positions after I've been with Org. a while. Thnx

for telling me about this. Thnx for your weclome, again I'm glad to be

here. Take care and talk to you soon. Nan.

Welcome

Hi Nan,

I wanted ti welcome you to the Org. In your post you pretty well told your

story. Excerpts of it. Would it be okay if I place it in the stories file

on

the home page: www.pancassociation.org

I also wanted to let you know that I grew up in New Orleans. My mother

still

lives there. We are actually planning a visit in the next few months. God

willing.

At present we do not have a representative for New Orleans or Louisiana.

After you have been here for a while, you may want to consider submitting

a

request for one of the positions.

Good luck, I am glad you are here.

Karyn E.

KarynWms@... " >Karyn , RN/Founder/President

http://www.pancassociation.org " >Pancreatitis Association

International

Phone 1- /

[Guest guest]

Karyn,

I love New Orleans, it is so beautiful and alive. I hope I get to go back there

sometime. I drove a " big truck " for 10 years from 1973-1983. I got to see so

much of the U.S.

I drove again from 1996-1998 and really got to see a bunch more. Here I go

again, rambling.

Joy

Welcome

Hi Nan,

I wanted ti welcome you to the Org. In your post you pretty well told your

story. Excerpts of it. Would it be okay if I place it in the stories file on

the home page: www.pancassociation.org

I also wanted to let you know that I grew up in New Orleans. My mother still

lives there. We are actually planning a visit in the next few months. God

willing.

At present we do not have a representative for New Orleans or Louisiana.

After you have been here for a while, you may want to consider submitting a

request for one of the positions.

Good luck, I am glad you are here.

Karyn E.

KarynWms@... " >Karyn , RN/Founder/President

http://www.pancassociation.org " >Pancreatitis Association

International

Phone 1- /

[Guest guest]

Dear Nann, Thankyou very much for the welcome. I am glad I joined. I am

realizing how serious this is and that my pain is nothing that I am being a

coward about. I really thought I was a cry baby when I went to the ER the

other day. Boy, was a I wrong. But, I am hoping to get rid of the pain

right now. It is not that bad cuz I just took another vicadin but, if it

keeps up I will be back in the ER again. Thanks again. HUGS,

[Guest guest]

Hello All,

I'm new to the group and here's my story....

I was diagnosed with ulcerative colitis in 1985 and PSC in 1996. After

fighting PSC for ten years, my liver failed and I was very close to death. I

received a liver transplant in March 2006 in Edmonton, Alberta and I've had

an essentially trouble-free recovery since then.

I currently mentor Calgary patients waiting for transplant and

I'd be happy to answer any questions about my PSC and transplant experience

with you.

Regards,

_______________________________

Jeff

Calgary, Alberta, Canada

[Guest guest]

Jeff,

I have a question for you. I am currently listed because I have both psc,

and Hepato pulmonary syndrome (my po2 levels are hopeless, I so I get very

short of breathe on any exertion). I am a social skier, and am wondering

about your physical recovery from transplant, when do you think you would

have been able to ski again (or maybe never) or handle low oxygen levels at

altitude. I only ask this because you are Canadian. Currently I couldn't

manage either the exercise or altitude.

Thanks,

Penny T (in Australia)

[Guest guest]

Penny,

I am not Jeff, but I would advise you to

read the book " To the edge and back " by Klug. He did not only

go back to snowboarding after transplant, but won a bronze medal in the Salt Lake

City Olympics 18 months after his liver transplant for PSC.

Regards,

Chaim

Boermeester, Israel

From: [mailto: ] On Behalf Of Penny

Sent: Friday, November 16, 2007

07:58

To:

Subject: RE: RE:

Welcome

Jeff,

I have a question for you. I am currently listed because I have both psc,

and Hepato pulmonary syndrome (my po2 levels are hopeless, I so I get very

short of breathe on any exertion). I am a social skier, and am wondering

about your physical recovery from transplant, when do you think you would

have been able to ski again (or maybe never) or handle low oxygen levels at

altitude. I only ask this because you are Canadian. Currently I couldn't

manage either the exercise or altitude.

Thanks,

Penny T (in Australia)

[Guest guest]

Penny,

I am not Jeff either, but felt I should share the experience of my son Rendall, who has undergone three psc related liver transplants since 1996 (2 in '96 and the last in '05 due to recurrent psc).

He has since gone back to his passion of big game hunting and has harvested several bull elk and mule deer, which requires considerable climbing/hiking at 7,000-9,500 ft. He does experience some knee and leg pain, but has somehow learned to deal with it and get passed it somehow. He truly amazes me at what he can do considering what he has been through. He just turned 32. Klug book is definetly a good source of inspiration.

Best of luck.

Regards,

Bill

RE: RE: Welcome

Penny,

I am not Jeff, but I would advise you to read the book "To the edge and back" by Klug.

Messages in this topic (0) Reply (via web post) | Start a new topic

..

[Guest guest]

Hi Jeff ... That is nice to know that you are doing very well. Our 9 year old son, Tyler, was diagnosed in January w/PSC.... It happened a few weeks after his 1st colonoscopy when they diagnosed the UC. He ended up in the hospital with triple antibiotics a week after the colonoscopy but then they said his liver was fine. A couple of weeks later, he was complaining of this ache/dull pain in his right side. He was in soo much pain day in and day out. The team of doctors then kept saying it was the colitis. We knew it was different then the UC pain and thought perhaps they did something to him during the colonoscopy as everything went down hill after it. We saw a new team of doctors and out of nowhere, his liver enzymes were drastically elevated.with a GGT in the high 900's....Urso was started and the pain and liver functions tests/GGT stabilized. His liver function tests are fine now, just slightly off from time to time but his Sed rate remains 4 times higher then it should be and they attribute this to the UC and are wanting to do a colonectomy as he struggles with anemia/low hemoglobins too and osteoporosis (from the year of steroids which he is off now). He is doing Remicade now and as far as the bloody stools , they are gone. One time a day he goes a normal one. so, we do not believe that the inflammation (high sed rate) is truly the UC. He continues to be fatigued, sometimes very pale and we feel he is yellow but the bilirubin levels have been fine. It is kind of like, he is just getting by but gives it his all....Do you think they are missing something? Could the inflammation be the liver without the liver blood tests indicating so? A couple of times his CA-19 tumor marker was over 100 and children's hospital was not too concerned about it as they say it goes hand in hand with UC...The liver doctor we see Dr. Whittington in Chicago at Children's Hospital is suppose to be one of the best in the nation. but, we are still thinking of going to Mayo in January but I am hesitant to put him thru all the tests again at Mayo as he has been thru so much. We are thinking they can do a head to toe full battery check before we decide to do a colonectomy......Also, if in Jan/Feb he was so very ill with the PSC, started URso and now it appears quiet, how do you kow when it will spark again?. Could it be and the doctors are missing it? I was doing some research about Adrenal dysfunction and my doctor dismissed it stating we are reading too much....Anything you can tell me, help me with would be great. We are devastated because he is not normal health wise but is such a trooper.

thanks in advance for any suggestions..

Ostos

(tyler age 9, McKenna age 5)

[Guest guest]

,

If he were my son I think I'd ask to see an infectious disease doc for the high sed rate, which shows there's an infection. I'd also probably opt for the Mayo clinic, since you still have lots of questions that aren't getting answered. I particularly don't like the doc who said you were reading too much.

If the UC is controlled with meds I'm not sure why they want to do a colectomy. You need to know where he's bleeding from before you make that decision.

Marie

To: From: SGEDGAUD@...Date: Fri, 16 Nov 2007 08:56:03 -0600Subject: Re: RE: Welcome

Hi Jeff ... That is nice to know that you are doing very well. Our 9 year old son, Tyler, was diagnosed in January w/PSC.... It happened a few weeks after his 1st colonoscopy when they diagnosed the UC. He ended up in the hospital with triple antibiotics a week after the colonoscopy but then they said his liver was fine. A couple of weeks later, he was complaining of this ache/dull pain in his right side. He was in soo much pain day in and day out. The team of doctors then kept saying it was the colitis. We knew it was different then the UC pain and thought perhaps they did something to him during the colonoscopy as everything went down hill after it. We saw a new team of doctors and out of nowhere, his liver enzymes were drastically elevated.with a GGT in the high 900's....Urso was started and the pain and liver functions tests/GGT stabilized. His liver function tests are fine now, just slightly off from time to time but his Sed rate remains 4 times higher then it should be and they attribute this to the UC and are wanting to do a colonectomy as he struggles with anemia/low hemoglobins too and osteoporosis (from the year of steroids which he is off now). He is doing Remicade now and as far as the bloody stools , they are gone. One time a day he goes a normal one. so, we do not believe that the inflammation (high sed rate) is truly the UC. He continues to be fatigued, sometimes very pale and we feel he is yellow but the bilirubin levels have been fine. It is kind of like, he is just getting by but gives it his all....Do you think they are missing something? Could the inflammation be the liver without the liver blood tests indicating so? A couple of times his CA-19 tumor marker was over 100 and children's hospital was not too concerned about it as they say it goes hand in hand with UC...The liver doctor we see Dr. Whittington in Chicago at Children's Hospital is suppose to be one of the best in the nation. but, we are still thinking of going to Mayo in January but I am hesitant to put him thru all the tests again at Mayo as he has been thru so much. We are thinking they can do a head to toe full battery check before we decide to do a colonectomy......Also, if in Jan/Feb he was so very ill with the PSC, started URso and now it appears quiet, how do you kow when it will spark again?. Could it be and the doctors are missing it? I was doing some research about Adrenal dysfunction and my doctor dismissed it stating we are reading too much....Anything you can tell me, help me with would be great. We are devastated because he is not normal health wise but is such a trooper. thanks in advance for any suggestions.. Ostos(tyler age 9, McKenna age 5) Boo! Scare away worms, viruses and so much more! Try Windows Live OneCare! Try now!

[Guest guest]

Hi Penny,

It is my opinion that your physical condition

pre-transplant will largely determine your recovery period post-transplant. Other

factors such as transplant complications, age, other illnesses etc. may also prolong

your recovery period.

My physical recovery from the liver transplant

was slow for the first two months but then accelerated to full recovery 6-8

months post-transplant. I was very emaciated having lost considerable muscle

mass, so my recovery took longer than most. I was hiking at altitude within 6

months and playing ice hockey within 7 months post-transplant.

If you are active now, you can be just as

active, or more so, after a liver transplant.

I hope this helps.

Regards,

_______________________________

Jeff

Consultant and Partner

TechWest Consulting Inc.

123 Valencia Rd. NW

Calgary, AB, T3A

2B7

email: jpdonald@...

voice:

cell:

From:

[mailto: ] On Behalf Of Penny

Sent: November-15-07 10:58 PM

To:

Subject: RE: RE:

Welcome

Jeff,

I have a question for you. I am currently listed because I have both psc,

and Hepato pulmonary syndrome (my po2 levels are hopeless, I so I get very

short of breathe on any exertion). I am a social skier, and am wondering

about your physical recovery from transplant, when do you think you would

have been able to ski again (or maybe never) or handle low oxygen levels at

altitude. I only ask this because you are Canadian. Currently I couldn't

manage either the exercise or altitude.

Thanks,

Penny T (in Australia)

[Guest guest]

Thanks everyone for your input about transplant recovery. I suppose

it makes sense really, I am just going through a rough patch about what’s

going to happen to me in the next ten years. The last probably 4 years have

been pretty horrific in terms of QOL, in terms of the sport I used to do etc.

Lymphoma and the chemo knocked me a whole load more than I thought, thinking of

myself as a relatively fit young mother. Now I feel like an old bag! I guess it

depends how much I want something, only I can get it!

Thanks,

Penny T

[Guest guest]

Hi ,

I agree with Marie 100%. I would definitely get a second opinion before a

colectomy. I know your son has been through a lot and the thought of more tests

is tough. Sometimes Mayo can use the previous tests done. If you do choose to go

to Mayo, Dr. Deborah Freese is wonderful in the pediatric GI department. I wish

you all the best of luck on your road to getting answers for your son.

Together in the fight, whatever it takes!

Joanne (mom of Todd, 21, PSC 01, Crohns 02, TX Twice 03, rPSC 05, Diabetes 06,

living life to the fullest 07)

Sent from my Verizon Wireless BlackBerry

[Guest guest]

This sounds a lot like Pearl (age 3), except it is her platelets that

continue to be high, not her sed rate (also indicates inflammation).

She is also on Remicade and her bloody stools are almost gone but she

is fatigued and has joint pain. We were told that the high platelets

are probably just going to be normal for her now. I have also been

told that the sed rate isn't necessarily a very accurate marker but

just indicates something is going wrong. He could have a normal sed

rate with lots of bleeding or a high sed rate with no bleeding. As

one doctor told me, it just indicates that there is a disease process

there. Hope that sheds some light on your situation.

[Guest guest]

Jeff,Welcome to the group - it's great to have you here. And your story sounds amazing. Altitude hiking and ice hockey so soon after a liver transplant!!! Amazing.Marie

To: From: jpdonald@...Date: Fri, 16 Nov 2007 21:12:55 -0700Subject: RE: RE: Welcome

Hi Penny,

It is my opinion that your physical condition

pre-transplant will largely determine your recovery period post-transplant. Other

factors such as transplant complications, age, other illnesses etc. may also prolong

your recovery period.

My physical recovery from the liver transplant

was slow for the first two months but then accelerated to full recovery 6-8

months post-transplant. I was very emaciated having lost considerable muscle

mass, so my recovery took longer than most. I was hiking at altitude within 6

months and playing ice hockey within 7 months post-transplant.

If you are active now, you can be just as

active, or more so, after a liver transplant.

I hope this helps.

Regards,

_______________________________

Jeff

Consultant and Partner

TechWest Consulting Inc.

123 Valencia Rd. NW

Calgary, AB, T3A

2B7

email: jpdonald (AT) shaw (DOT) ca

voice:

cell:

From:

[mailto: ] On Behalf Of Penny

Sent: November-15-07 10:58 PM

To:

Subject: RE: RE:

Welcome

Jeff,

I have a question for you. I am currently listed because I have both psc,

and Hepato pulmonary syndrome (my po2 levels are hopeless, I so I get very

short of breathe on any exertion). I am a social skier, and am wondering

about your physical recovery from transplant, when do you think you would

have been able to ski again (or maybe never) or handle low oxygen levels at

altitude. I only ask this because you are Canadian. Currently I couldn't

manage either the exercise or altitude.

Thanks,

Penny T (in Australia)

Your smile counts. The more smiles you share, the more we donate. Join in!

[Guest guest]

Hi Marie,

Thanks for the kind words.

If you want to read more about my transplant

experience, check out:

http://members.shaw.ca/jpdonald/

Regards,

_______________________________

Jeff

From:

[mailto: ] On Behalf Of Marie Nilsson

Sent: November-17-07 12:45 PM

To:

Subject: RE: RE:

Welcome

Jeff,

Welcome to the group - it's great to have you here. And your story sounds

amazing. Altitude hiking and ice hockey so soon after a liver transplant!!!

Amazing.

Marie

To:

From: jpdonald (AT) shaw (DOT) ca

Date: Fri, 16 Nov 2007 21:12:55 -0700

Subject: RE: RE: Welcome

Hi Penny,

It is my opinion that your physical

condition pre-transplant will largely determine your recovery period

post-transplant. Other factors such as transplant complications, age, other illnesses

etc. may also prolong your recovery period.

My physical recovery from the liver

transplant was slow for the first two months but then accelerated to full

recovery 6-8 months post-transplant. I was very emaciated having lost

considerable muscle mass, so my recovery took longer than most. I was hiking at

altitude within 6 months and playing ice hockey within 7 months

post-transplant.

If you are active now, you can be just as

active, or more so, after a liver transplant.

I hope this helps.

Regards,

_______________________________

Jeff

Consultant and Partner

TechWest Consulting Inc.

123 Valencia Rd. NW

Calgary, AB, T3A

2B7

email: jpdonald (AT) shaw (DOT) ca

voice:

cell:

From:

[mailto: ]

On Behalf Of Penny

Sent: November-15-07 10:58 PM

To:

Subject: RE: RE:

Welcome

Jeff,

I have a question for you. I am currently listed because I have both psc,

and Hepato pulmonary syndrome (my po2 levels are hopeless, I so I get very

short of breathe on any exertion). I am a social skier, and am wondering

about your physical recovery from transplant, when do you think you would

have been able to ski again (or maybe never) or handle low oxygen levels at

altitude. I only ask this because you are Canadian. Currently I couldn't

manage either the exercise or altitude.

Thanks,

Penny T (in Australia)

Your smile counts. The more smiles you share, the more we donate. Join in!

[Guest guest]

Hi, yes it does shed light and thank you. The thing is for me I do not believe that high platelets or large platelets are normal (every single blood test he has shows a side note comment " Large Platelets " but no one seems to think it matters. Not that I want something else to be wrong but I do not want them to miss anything...

" jyniffrec "

" jyniffrec "

Sent by:

11/17/2007 12:52 PM

Please respond to

To

cc

Subject

Re: Welcome

This sounds a lot like Pearl (age 3), except it is her platelets that

continue to be high, not her sed rate (also indicates inflammation).

She is also on Remicade and her bloody stools are almost gone but she

is fatigued and has joint pain. We were told that the high platelets

are probably just going to be normal for her now. I have also been

told that the sed rate isn't necessarily a very accurate marker but

just indicates something is going wrong. He could have a normal sed

rate with lots of bleeding or a high sed rate with no bleeding. As

one doctor told me, it just indicates that there is a disease process

there. Hope that sheds some light on your situation.

[Guest guest]

You may be right. It was her pediatrician who told me that the

elevated platelets could just be her new normal. I have been unable

to get any satisfactory answers out of anyone after questioning

everyone from her GI doctor to people on all the lists I'm on. If

anyone knows anything different, I would be very pleased to hear it.

Even when I read about platelets in general information, there is

never a listing for what high platelets might mean (except

inflammation), only for low platelets. Large platelets may be a

different story though from high platelets - maybe someone else can

comment on this.

>

>

> Hi, yes it does shed light and thank you. The thing is for me I

do not

> believe that high platelets or large platelets are normal (every

single

> blood test he has shows a side note comment " Large Platelets " but

no one

> seems to think it matters. Not that I want something else to be

wrong but

> I do not want them to miss anything...

>

>

>

>

>

> " jyniffrec "

>

<paulandjenniferc

>

@gmail.com> To

> Sent by: psc-

support

> psc-

support@yahoo cc

>

groups.com

>

Subject

> Re:

Welcome

> 11/17/2007

12:52

>

PM

>

>

> Please respond

to

> psc-

support@yahoo

>

groups.com

>

>

>

>

>

>

>

>

>

>

>

> This sounds a lot like Pearl (age 3), except it is her platelets

that

> continue to be high, not her sed rate (also indicates

inflammation).

> She is also on Remicade and her bloody stools are almost gone but

she

> is fatigued and has joint pain. We were told that the high

platelets

> are probably just going to be normal for her now. I have also

been

> told that the sed rate isn't necessarily a very accurate marker

but

> just indicates something is going wrong. He could have a normal

sed

> rate with lots of bleeding or a high sed rate with no bleeding.

As

> one doctor told me, it just indicates that there is a disease

process

> there. Hope that sheds some light on your situation.

>