being listed and living normally

October 26, 1999

From what you say, I think that the odds of getting called soon are pretty

low. So the risk of " missing out " on a transplant call may not be a big

factor in the short term.

You can get a beeper pretty cheap. Cell phones are pretty cheap too but

you have to keep the battery charged and they are a little more bulky to

carry.

The bigger question is the risk of having a health complication while in

Italy.

I think health care is pretty good in Western Europe. But this is something

that

you might want to discuss with your doctor or with the transplant center.

rarely travelled anywhere while listed. She had to change jobs at her

work

so she could stay at the office (they were very cooperative). Her biggest

fear was

having a GI bleed somewhere, especially if she were by herself, and not

getting

medical treatment in time. This can be very life threatening but I don't

know whether

your PSC has progressed to the point where this is a risk for you. Another

thing

to ask your physician about.

Not going on vacations for 3 years was a bummer but really, the least of our

problems!

I think mostly used her vacation days as sick days anyway.

Thanks, Roy T.

PS I have met Dr. Jeff Punch of UofM on the internet...he has been a

wonderful source of information on the TRANSPLANT message group.

being listed and living normally

> I have a few questions for those of you who have

> been listed and/or

> have had your transplants. I recently was listed

> as a status 3, I am suppose to call the transplant

> coordinator with all my phone numbers where I can

> be reached and I am not suppose to go out of town

> with out telling them either. I don't have a cell

> phone that I carry with me. (Wondering if I should

> get one or a beeper of my own.)

> UofM where I will go for transplant did only one

> transplant last year on a status 3 patient. I

> imagine I am the last one on the list even in my

> blood type.

> Patients at status 2b wear beepers from the

> hospital. I very much want to go to Italy this

> summer, especially if I am feeling well.

> (although my last two downdslides happened very

> suddenly and that would be scary in a foreign

> country to get sick....I went to France and

> Germany on business last April and got a sinus

> infection, that was an experience I won't forget.

> Fortunatley the Dr. spoke english all though the

> paramedics didn't)

> Can I? Should I? I just got called for Jury Duty,

> my family thinks I should ask for a medical

> release. All of a sudden I feel tied to my house

> phone and tied to the Ann Arbor, Michigan area.

>

> When I feel good, I want to do everything I can.

> When I am feeling bad

> I do not want to go anywhere. Soooo while things

> are good I want to be

> normal, but what is normal when you are waiting

> for a phone call that

> probably won't happen for years anyway.

>

> I feel like I am eighteen again and waiting for

> that boy I dated last night to call me today. Gosh

> I hated that dating crap!!!

>

> ------------------------------------------------------------------------

> Get the most popular downloads on the Web. They¹re new!

> They¹re hot! They're FREE! Utilities, drivers, games.

> It's all here. http://clickhere./click/1158

>

> eGroups.com home: /group/

> - Simplifying group communications

>

October 26, 1999

From what you say, I think that the odds of getting called soon are pretty

low. So the risk of " missing out " on a transplant call may not be a big

factor in the short term.

You can get a beeper pretty cheap. Cell phones are pretty cheap too but

you have to keep the battery charged and they are a little more bulky to

carry.

The bigger question is the risk of having a health complication while in

Italy.

I think health care is pretty good in Western Europe. But this is something

that

you might want to discuss with your doctor or with the transplant center.

rarely travelled anywhere while listed. She had to change jobs at her

work

so she could stay at the office (they were very cooperative). Her biggest

fear was

having a GI bleed somewhere, especially if she were by herself, and not

getting

medical treatment in time. This can be very life threatening but I don't

know whether

your PSC has progressed to the point where this is a risk for you. Another

thing

to ask your physician about.

Not going on vacations for 3 years was a bummer but really, the least of our

problems!

I think mostly used her vacation days as sick days anyway.

Thanks, Roy T.

PS I have met Dr. Jeff Punch of UofM on the internet...he has been a

wonderful source of information on the TRANSPLANT message group.

being listed and living normally

> I have a few questions for those of you who have

> been listed and/or

> have had your transplants. I recently was listed

> as a status 3, I am suppose to call the transplant

> coordinator with all my phone numbers where I can

> be reached and I am not suppose to go out of town

> with out telling them either. I don't have a cell

> phone that I carry with me. (Wondering if I should

> get one or a beeper of my own.)

> UofM where I will go for transplant did only one

> transplant last year on a status 3 patient. I

> imagine I am the last one on the list even in my

> blood type.

> Patients at status 2b wear beepers from the

> hospital. I very much want to go to Italy this

> summer, especially if I am feeling well.

> (although my last two downdslides happened very

> suddenly and that would be scary in a foreign

> country to get sick....I went to France and

> Germany on business last April and got a sinus

> infection, that was an experience I won't forget.

> Fortunatley the Dr. spoke english all though the

> paramedics didn't)

> Can I? Should I? I just got called for Jury Duty,

> my family thinks I should ask for a medical

> release. All of a sudden I feel tied to my house

> phone and tied to the Ann Arbor, Michigan area.

>

> When I feel good, I want to do everything I can.

> When I am feeling bad

> I do not want to go anywhere. Soooo while things

> are good I want to be

> normal, but what is normal when you are waiting

> for a phone call that

> probably won't happen for years anyway.

>

> I feel like I am eighteen again and waiting for

> that boy I dated last night to call me today. Gosh

> I hated that dating crap!!!

>

> ------------------------------------------------------------------------

> Get the most popular downloads on the Web. They¹re new!

> They¹re hot! They're FREE! Utilities, drivers, games.

> It's all here. http://clickhere./click/1158

>

> eGroups.com home: /group/

> - Simplifying group communications

>

October 26, 1999

From what you say, I think that the odds of getting called soon are pretty

low. So the risk of " missing out " on a transplant call may not be a big

factor in the short term.

You can get a beeper pretty cheap. Cell phones are pretty cheap too but

you have to keep the battery charged and they are a little more bulky to

carry.

The bigger question is the risk of having a health complication while in

Italy.

I think health care is pretty good in Western Europe. But this is something

that

you might want to discuss with your doctor or with the transplant center.

rarely travelled anywhere while listed. She had to change jobs at her

work

so she could stay at the office (they were very cooperative). Her biggest

fear was

having a GI bleed somewhere, especially if she were by herself, and not

getting

medical treatment in time. This can be very life threatening but I don't

know whether

your PSC has progressed to the point where this is a risk for you. Another

thing

to ask your physician about.

Not going on vacations for 3 years was a bummer but really, the least of our

problems!

I think mostly used her vacation days as sick days anyway.

Thanks, Roy T.

PS I have met Dr. Jeff Punch of UofM on the internet...he has been a

wonderful source of information on the TRANSPLANT message group.

being listed and living normally

> I have a few questions for those of you who have

> been listed and/or

> have had your transplants. I recently was listed

> as a status 3, I am suppose to call the transplant

> coordinator with all my phone numbers where I can

> be reached and I am not suppose to go out of town

> with out telling them either. I don't have a cell

> phone that I carry with me. (Wondering if I should

> get one or a beeper of my own.)

> UofM where I will go for transplant did only one

> transplant last year on a status 3 patient. I

> imagine I am the last one on the list even in my

> blood type.

> Patients at status 2b wear beepers from the

> hospital. I very much want to go to Italy this

> summer, especially if I am feeling well.

> (although my last two downdslides happened very

> suddenly and that would be scary in a foreign

> country to get sick....I went to France and

> Germany on business last April and got a sinus

> infection, that was an experience I won't forget.

> Fortunatley the Dr. spoke english all though the

> paramedics didn't)

> Can I? Should I? I just got called for Jury Duty,

> my family thinks I should ask for a medical

> release. All of a sudden I feel tied to my house

> phone and tied to the Ann Arbor, Michigan area.

>

> When I feel good, I want to do everything I can.

> When I am feeling bad

> I do not want to go anywhere. Soooo while things

> are good I want to be

> normal, but what is normal when you are waiting

> for a phone call that

> probably won't happen for years anyway.

>

> I feel like I am eighteen again and waiting for

> that boy I dated last night to call me today. Gosh

> I hated that dating crap!!!

>

> ------------------------------------------------------------------------

> Get the most popular downloads on the Web. They¹re new!

> They¹re hot! They're FREE! Utilities, drivers, games.

> It's all here. http://clickhere./click/1158

>

> eGroups.com home: /group/

> - Simplifying group communications

>

October 27, 1999

I have a few questions for those of you who have

been listed and/or

have had your transplants. I recently was listed

as a status 3, I am suppose to call the transplant

coordinator with all my phone numbers where I can

be reached and I am not suppose to go out of town

with out telling them either. I don't have a cell

phone that I carry with me. (Wondering if I should

get one or a beeper of my own.)

UofM where I will go for transplant did only one

transplant last year on a status 3 patient. I

imagine I am the last one on the list even in my

blood type.

Patients at status 2b wear beepers from the

hospital. I very much want to go to Italy this

summer, especially if I am feeling well.

(although my last two downdslides happened very

suddenly and that would be scary in a foreign

country to get sick....I went to France and

Germany on business last April and got a sinus

infection, that was an experience I won't forget.

Fortunatley the Dr. spoke english all though the

paramedics didn't)

Can I? Should I? I just got called for Jury Duty,

my family thinks I should ask for a medical

release. All of a sudden I feel tied to my house

phone and tied to the Ann Arbor, Michigan area.

When I feel good, I want to do everything I can.

When I am feeling bad

I do not want to go anywhere. Soooo while things

are good I want to be

normal, but what is normal when you are waiting

for a phone call that

probably won't happen for years anyway.

I feel like I am eighteen again and waiting for

that boy I dated last night to call me today. Gosh

I hated that dating crap!!!

October 27, 1999

Beth Ann,

You probably can guess what I'm going to say, but I'll say it

anyway. If you health allows you to do it, do it. Go to Italy if

you can. What could happen? You miss a call that a liver is

available? Indicates you're near the top of your list and

another is likely to be available again. Stay home and what

happens? 999 times out of 1000 the call doesn't come and you

will regret not going.

As for beeper and cell phones, how long are you and others you

designate as contacts (friends, neighbors, relatives) ever

unreachable by phone. To and from work? while shopping? at some

event (you probably could be paged)? on vacation backpacking in

a state park? Except for the last, its unlikely that you & your

friends would be totally out of contact more than 2 hours. In my

case, from the time I was first contacted until surgery began

was about 15 hours. I didn't go to the hospital until about 8

hours after being contacted. Yes there is an urgency, but its

not like being in a burning house, where you may not want to

finish the last of the chapter before putting the book down and

leaving.

All this assumes that you are still out and about. If you are

confined to your house or a hospital bed, all this stuff about

living as much as you can is moot. You are doing the best you

can just getting by.

Hope you're living and not just getting by.

Tim ltx 4/4/98 UofM

--- beth ann dalrymple wrote:

> I have a few questions for those of you who have

> been listed and/or

> have had your transplants. I recently was listed

> as a status 3, I am suppose to call the transplant

> coordinator with all my phone numbers where I can

> be reached and I am not suppose to go out of town

> with out telling them either. I don't have a cell

> phone that I carry with me. (Wondering if I should

> get one or a beeper of my own.)

> UofM where I will go for transplant did only one

> transplant last year on a status 3 patient. I

> imagine I am the last one on the list even in my

> blood type.

> Patients at status 2b wear beepers from the

> hospital. I very much want to go to Italy this

> summer, especially if I am feeling well.

> (although my last two downdslides happened very

> suddenly and that would be scary in a foreign

> country to get sick....I went to France and

> Germany on business last April and got a sinus

> infection, that was an experience I won't forget.

> Fortunatley the Dr. spoke english all though the

> paramedics didn't)

> Can I? Should I? I just got called for Jury Duty,

> my family thinks I should ask for a medical

> release. All of a sudden I feel tied to my house

> phone and tied to the Ann Arbor, Michigan area.

>

> When I feel good, I want to do everything I can.

> When I am feeling bad

> I do not want to go anywhere. Soooo while things

> are good I want to be

> normal, but what is normal when you are waiting

> for a phone call that

> probably won't happen for years anyway.

>

> I feel like I am eighteen again and waiting for

> that boy I dated last night to call me today. Gosh

> I hated that dating crap!!!

=====

__________________________________________________

October 27, 1999