Re: Transplant Info Needed

[Guest guest]

-----Original

Message----- Please don't spare me any of the " painful "

details. The doctors keep saying that their other

patients have been very successful with their transplants and some have gone

back to work in a matter or weeks following the surgery. This sounds kind of

far-fetched to me and I need to know the facts How long were you hospitalized?

How long did

the actual surgery take? How bad was the pain and the length of the recuperation

period?

Hi Janice,

No two people are

alike, so it’s hard to answer your questions with any hard cold facts. The recovery process depends on so many

things….. how sick were they before surgery….how old are they, were

there any complications before or after surgery etc, etc.

The best way (in the best

light, if everything goes as planned) is to look at this surgery like any other. The surgery itself can take from 4 -12

hours or more, (depending on patients condition when going in and what they

find while in there). Most go to

the ICU for a day and then get transferred to a regular room. “Average or Normal” hospital

stays can be from 5-7 days – to months if complications arise. They try and get patients up and walking

in 24 – 48 hours. They do try and get you home ASAP, if you don’t live

near the hospital you’ll probably have to stay in an apartment for 6-12

weeks. “Normal recovery” after any surgery is 6 weeks, I think you

can count on 8 weeks to 6 months – depending on if everything goes well. Some people work up to the very day they

get the call for surgery, others are off work for years before. Some return to work ASAP, others don’t.

Take a look at your

hospitals web site for information on recovery and I’m sure your husband

can join one of their support groups, where he’ll actually be able to

talk to patients that have just gone through the process at your hospital. Everyone is so very different that you

can’t really compare their experiences to what your husband might go

through. We had one group member

who went back to work 6 weeks after his third transplant!!

Keep your chin up,

expect the very best for your husband and remember we’re all here for you

should you need anything or have any questions. Do everything you can to keep you and your

husband as fit as you can before surgery. I’m sure other members will chime

in, many of whom have had their transplants.

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

Son Ken (32) UC 91 - PSC 99 Listed 7/21 @ Baylor Dallas

[Guest guest]

-----Original

Message----- Please don't spare me any of the " painful "

details. The doctors keep saying that their other

patients have been very successful with their transplants and some have gone

back to work in a matter or weeks following the surgery. This sounds kind of

far-fetched to me and I need to know the facts How long were you hospitalized?

How long did

the actual surgery take? How bad was the pain and the length of the recuperation

period?

Hi Janice,

No two people are

alike, so it’s hard to answer your questions with any hard cold facts. The recovery process depends on so many

things….. how sick were they before surgery….how old are they, were

there any complications before or after surgery etc, etc.

The best way (in the best

light, if everything goes as planned) is to look at this surgery like any other. The surgery itself can take from 4 -12

hours or more, (depending on patients condition when going in and what they

find while in there). Most go to

the ICU for a day and then get transferred to a regular room. “Average or Normal” hospital

stays can be from 5-7 days – to months if complications arise. They try and get patients up and walking

in 24 – 48 hours. They do try and get you home ASAP, if you don’t live

near the hospital you’ll probably have to stay in an apartment for 6-12

weeks. “Normal recovery” after any surgery is 6 weeks, I think you

can count on 8 weeks to 6 months – depending on if everything goes well. Some people work up to the very day they

get the call for surgery, others are off work for years before. Some return to work ASAP, others don’t.

Take a look at your

hospitals web site for information on recovery and I’m sure your husband

can join one of their support groups, where he’ll actually be able to

talk to patients that have just gone through the process at your hospital. Everyone is so very different that you

can’t really compare their experiences to what your husband might go

through. We had one group member

who went back to work 6 weeks after his third transplant!!

Keep your chin up,

expect the very best for your husband and remember we’re all here for you

should you need anything or have any questions. Do everything you can to keep you and your

husband as fit as you can before surgery. I’m sure other members will chime

in, many of whom have had their transplants.

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

Son Ken (32) UC 91 - PSC 99 Listed 7/21 @ Baylor Dallas

[Guest guest]

-----Original

Message----- Please don't spare me any of the " painful "

details. The doctors keep saying that their other

patients have been very successful with their transplants and some have gone

back to work in a matter or weeks following the surgery. This sounds kind of

far-fetched to me and I need to know the facts How long were you hospitalized?

How long did

the actual surgery take? How bad was the pain and the length of the recuperation

period?

Hi Janice,

No two people are

alike, so it’s hard to answer your questions with any hard cold facts. The recovery process depends on so many

things….. how sick were they before surgery….how old are they, were

there any complications before or after surgery etc, etc.

The best way (in the best

light, if everything goes as planned) is to look at this surgery like any other. The surgery itself can take from 4 -12

hours or more, (depending on patients condition when going in and what they

find while in there). Most go to

the ICU for a day and then get transferred to a regular room. “Average or Normal” hospital

stays can be from 5-7 days – to months if complications arise. They try and get patients up and walking

in 24 – 48 hours. They do try and get you home ASAP, if you don’t live

near the hospital you’ll probably have to stay in an apartment for 6-12

weeks. “Normal recovery” after any surgery is 6 weeks, I think you

can count on 8 weeks to 6 months – depending on if everything goes well. Some people work up to the very day they

get the call for surgery, others are off work for years before. Some return to work ASAP, others don’t.

Take a look at your

hospitals web site for information on recovery and I’m sure your husband

can join one of their support groups, where he’ll actually be able to

talk to patients that have just gone through the process at your hospital. Everyone is so very different that you

can’t really compare their experiences to what your husband might go

through. We had one group member

who went back to work 6 weeks after his third transplant!!

Keep your chin up,

expect the very best for your husband and remember we’re all here for you

should you need anything or have any questions. Do everything you can to keep you and your

husband as fit as you can before surgery. I’m sure other members will chime

in, many of whom have had their transplants.

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

Son Ken (32) UC 91 - PSC 99 Listed 7/21 @ Baylor Dallas

[Guest guest]

Janice,

I would suggest that you read the transplant stories in the psc-

support group's Links > Transplant Stories folder

(http://health.groups.yahoo.com/group/psc-

support/links/Transplant_Stories_001067522118/). The seven stories

reflect a wide range of paths through the transplant experience. Some

are day by day accounts posted to this group, others are the collected

thoughts composed after the fact. Your experience will almost surely

be different, but the knowledge that these stories impart will give

you the confidence to step in as an advocate when you must, the

strength to face anything that comes your way and understanding to

savor the achievements along the way.

Tim R

[Guest guest]

Tim, Thank you for the advice and the kind words. I will read through the archives and prepare myself for whatever comes our way! JaniceTim Romlein wrote: Janice,I would suggest that you read the transplant stories in the group's Links > Transplant Stories folder (http://health.groups.yahoo.com/group//links/Transplant_Stories_001067522118/). The seven stories reflect a wide range of paths through the transplant experience. Some are day by day accounts posted to this group, others are the collected thoughts composed after the fact. Your experience will almost surely be different, but the knowledge that these stories impart will give you the confidence to step in as an advocate when you must, the strength to face anything that comes your way and understanding to savor the achievements along the way.Tim R

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[Guest guest]

Tim, Thank you for the advice and the kind words. I will read through the archives and prepare myself for whatever comes our way! JaniceTim Romlein wrote: Janice,I would suggest that you read the transplant stories in the group's Links > Transplant Stories folder (http://health.groups.yahoo.com/group//links/Transplant_Stories_001067522118/). The seven stories reflect a wide range of paths through the transplant experience. Some are day by day accounts posted to this group, others are the collected thoughts composed after the fact. Your experience will almost surely be different, but the knowledge that these stories impart will give you the confidence to step in as an advocate when you must, the strength to face anything that comes your way and understanding to savor the achievements along the way.Tim R

All-new Yahoo! Mail - Fire up a more powerful email and get things done faster.

[Guest guest]

Tim, Thank you for the advice and the kind words. I will read through the archives and prepare myself for whatever comes our way! JaniceTim Romlein wrote: Janice,I would suggest that you read the transplant stories in the group's Links > Transplant Stories folder (http://health.groups.yahoo.com/group//links/Transplant_Stories_001067522118/). The seven stories reflect a wide range of paths through the transplant experience. Some are day by day accounts posted to this group, others are the collected thoughts composed after the fact. Your experience will almost surely be different, but the knowledge that these stories impart will give you the confidence to step in as an advocate when you must, the strength to face anything that comes your way and understanding to savor the achievements along the way.Tim R

All-new Yahoo! Mail - Fire up a more powerful email and get things done faster.

[Guest guest]

Janice, Sorry to hear that your husband is getting worst. Hopefully some of this information will help. When I was waiting for my liver transplant all I wanted to do was get my hand on as much information as possible. I didn't know about this web-site at the time so I just started looking for liver transplant success stories. In my search I came across a web-site that contained a personal account of one guys experience. What I like so much about this site was the fact that the guy had actually had two liver transplants (not due to PSC). His first transplant went very wrong and he had all sort of complications. Because of all of this he needed a second one. This one went extreamely well. In his web-site he describes in detail how both of them went. Reading this helped me to better prepare myself for all the possabilities. The website is: http://www.awakenings.com/ltxp/ I also read a very good book that really inspired me. It's called "To the edge and back" by Klug. This is about a young man who had PSC and two years AFTER his liver transplant went on to win the bronze medal in the Olympics for snowboarding. In case you were wondering my transplant went very well. I was in surgery for about seven hours (and that was with the difficulty they had removing my old liver which was huge). I spent 2 1/2 days in ICU and was up and walking around in 4 days. The one thing you have to remember is that I was well enough to walk into my surgery. From what the nurses told me patients recover faster if they are still doing OK before surgury. I will keep you and your husband in my prayers. Pat (CA) PSC 2000 tx 2005Janice

wrote: Hi Everyone,I haven't posted in a while. Things here have been difficult and very tense. My husband had his ERCP two weeks ago and, as the doctor predicted, his PSC has progressed. His doctor estimates him to be approximately 1-1/2 years away from needing a transplant (pure speculation since things can change at any time). His common bile ducts (particularly the right side) are almost completely constricted. He is extremely fatigued and showing signs of

depression.I want to prepare myself as well as him for the prospects of a transplant and would really appreciate hearing all the details of what to expect when the time comes. Please don't spare me any of the "painful" details. The doctors keep saying that their other patients have been very successful with their transplants and some have gone back to work in a matter or weeks following the surgery. This sounds kind of far-fetched to me and I need to know the facts from the patients. How long were you hospitalized? How long did the actual surgery take? How bad was the pain and the length of the recuperation period? Has anyone had the surgery at the Hospital of Pennsylvania in Philadelphia? I want to know what to expect and how do I prepare my husband for this unfortunate adventure.Thank you in advance for all your help and support and best of health to

all.Janice

Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

[Guest guest]

Janice, Sorry to hear that your husband is getting worst. Hopefully some of this information will help. When I was waiting for my liver transplant all I wanted to do was get my hand on as much information as possible. I didn't know about this web-site at the time so I just started looking for liver transplant success stories. In my search I came across a web-site that contained a personal account of one guys experience. What I like so much about this site was the fact that the guy had actually had two liver transplants (not due to PSC). His first transplant went very wrong and he had all sort of complications. Because of all of this he needed a second one. This one went extreamely well. In his web-site he describes in detail how both of them went. Reading this helped me to better prepare myself for all the possabilities. The website is: http://www.awakenings.com/ltxp/ I also read a very good book that really inspired me. It's called "To the edge and back" by Klug. This is about a young man who had PSC and two years AFTER his liver transplant went on to win the bronze medal in the Olympics for snowboarding. In case you were wondering my transplant went very well. I was in surgery for about seven hours (and that was with the difficulty they had removing my old liver which was huge). I spent 2 1/2 days in ICU and was up and walking around in 4 days. The one thing you have to remember is that I was well enough to walk into my surgery. From what the nurses told me patients recover faster if they are still doing OK before surgury. I will keep you and your husband in my prayers. Pat (CA) PSC 2000 tx 2005Janice

wrote: Hi Everyone,I haven't posted in a while. Things here have been difficult and very tense. My husband had his ERCP two weeks ago and, as the doctor predicted, his PSC has progressed. His doctor estimates him to be approximately 1-1/2 years away from needing a transplant (pure speculation since things can change at any time). His common bile ducts (particularly the right side) are almost completely constricted. He is extremely fatigued and showing signs of

depression.I want to prepare myself as well as him for the prospects of a transplant and would really appreciate hearing all the details of what to expect when the time comes. Please don't spare me any of the "painful" details. The doctors keep saying that their other patients have been very successful with their transplants and some have gone back to work in a matter or weeks following the surgery. This sounds kind of far-fetched to me and I need to know the facts from the patients. How long were you hospitalized? How long did the actual surgery take? How bad was the pain and the length of the recuperation period? Has anyone had the surgery at the Hospital of Pennsylvania in Philadelphia? I want to know what to expect and how do I prepare my husband for this unfortunate adventure.Thank you in advance for all your help and support and best of health to

all.Janice

Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

[Guest guest]

Janice, Sorry to hear that your husband is getting worst. Hopefully some of this information will help. When I was waiting for my liver transplant all I wanted to do was get my hand on as much information as possible. I didn't know about this web-site at the time so I just started looking for liver transplant success stories. In my search I came across a web-site that contained a personal account of one guys experience. What I like so much about this site was the fact that the guy had actually had two liver transplants (not due to PSC). His first transplant went very wrong and he had all sort of complications. Because of all of this he needed a second one. This one went extreamely well. In his web-site he describes in detail how both of them went. Reading this helped me to better prepare myself for all the possabilities. The website is: http://www.awakenings.com/ltxp/ I also read a very good book that really inspired me. It's called "To the edge and back" by Klug. This is about a young man who had PSC and two years AFTER his liver transplant went on to win the bronze medal in the Olympics for snowboarding. In case you were wondering my transplant went very well. I was in surgery for about seven hours (and that was with the difficulty they had removing my old liver which was huge). I spent 2 1/2 days in ICU and was up and walking around in 4 days. The one thing you have to remember is that I was well enough to walk into my surgery. From what the nurses told me patients recover faster if they are still doing OK before surgury. I will keep you and your husband in my prayers. Pat (CA) PSC 2000 tx 2005Janice

wrote: Hi Everyone,I haven't posted in a while. Things here have been difficult and very tense. My husband had his ERCP two weeks ago and, as the doctor predicted, his PSC has progressed. His doctor estimates him to be approximately 1-1/2 years away from needing a transplant (pure speculation since things can change at any time). His common bile ducts (particularly the right side) are almost completely constricted. He is extremely fatigued and showing signs of

depression.I want to prepare myself as well as him for the prospects of a transplant and would really appreciate hearing all the details of what to expect when the time comes. Please don't spare me any of the "painful" details. The doctors keep saying that their other patients have been very successful with their transplants and some have gone back to work in a matter or weeks following the surgery. This sounds kind of far-fetched to me and I need to know the facts from the patients. How long were you hospitalized? How long did the actual surgery take? How bad was the pain and the length of the recuperation period? Has anyone had the surgery at the Hospital of Pennsylvania in Philadelphia? I want to know what to expect and how do I prepare my husband for this unfortunate adventure.Thank you in advance for all your help and support and best of health to

all.Janice

Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.