RE: Starting to freak out a little

[Guest guest]

Hi Bobbi - my sister in law received a liver transplant on Christmas Day (!!) at Mayo in Rochester due to PBS. All went well during surgery and although I was not there with my family, I saw pictures of her (soon after!) and was getting regular updates on the Caring Bridge website, which you can set up so that all of your friends/family can stay as updated as possible. My sister in law looked absolutely beautiful, really, within hours of the surgery, was up walking the next day and giving the camera thumbs up for all of her support network. I spoke with her by phone within 48 hours and she sounded like she was at home doing a yakathon with me like usual. Prior to transplant, she got herself in the healthiest and most positive state she could and it paid off. She

went home last Friday and is doing awesome. She was the strength that kept everybody going! I think that your mere presence, not matter what state you're in, will be a welcome site to when he wakes up. Stay strong! Look into getting the Caring Bridge set up. It was a wonderful tool for not only all her friends/family, but she got to get on it once able and it was a huge source of strength for her too! To: Sent: Friday, January 23, 2009 4:11:30 PMSubject: Starting to freak out a little

I think everything is starting to sink in. I just talked to Chris's pre transplant coordinator a few minutes ago. She scheduled him for all of his pre transplant work up evaluations. We'll be spending ALL day at the hospital Feb 12. She said they're wanting to get him listed ASAP because when he was in the hospital last week his MELD score was 18-23 which is when they like to transplant their patients. It's all starting to feel so real now and honestly I am freaking out a bit. I know he'll be ok. I know they'll take good care of him. He's at one of the best transplant centers in the country. I don't worry about those things so much. What I worry about is, what to expect when I see him for the first time after the transplant. What should I expect? How do I stay calm and keep it together for him even though I'm terrified on the inside? Honestly I think he's coping better with all of it than anyone else around him. He's

just tired of being sick. Anyway, help calm a first time pregnant mama's anxieties please. ------------------------------------

[Guest guest]

I can only tell you what I looked like at

about hour 12 post surgery, but I can give you what my wife and daughter told

me when I got to ICU. I had multiple IV’s , some drain tubes, and I

was still intubated. They immediately did an ultrasound to make sure

there were no leaks and then they removed the intubation. Also, I had a

catheter, a nasogastric tube, heart monitor, and a central line. While I

remember a little a little about the first night, I started remembering the

next morning when I went to a regular hospital room. They removed the catheter

when I arrived at the regular room. I got out of bed and walked about 40

feet. I called my mother and my boss and talked briefly to them that

morning. The remainder of the tubes and IV’s were removed before I

left the hospital three days later. On day two I walked around the

nursing station and went to therapy to make sure I could get in and out of a

car.

I think that you would benefit from

talking to my wife regarding how to keep it together…….. I do

think that the caregiver has a much different level of stress and I think that

it is a much more difficult position to be in than a patient. If you like,

I can forward my wife’s email. She is not a member of this group.

Joe

PSC & UC -

1990; Liver Transplant - 2007

What I worry about is, what to expect when I see him

for the first time after the transplant. What should I

expect? How do I stay calm and keep it together for him even though I'm

terrified on the

inside? Honestly I think he's coping better with all of it than anyone else

around him.

[Guest guest]

Thank you. I am so glad to hear your sister-in-law is doing well. One thing that

Chris

keeps saying is " I don't even remember what normal feels like. " I think feeling

GOOD will

be a shock to him, although in a good way. I already have a Caring Bridge page

set up for

him although I need to update it.

And you know, he does tend to be the one that sort of holds everybody else up. I

think

he's been dealing with it so long and is SO tired of being sick, he's like

whatever, bring it

on! Know what I mean?

Although if he doesn't start listening to me when I tell him to come home if he

starts

feeling bad, he's gonna end up being a DONOR! LOL He got out of the hospital

Sunday,

went back to work Wednesday. Would have gone back Tuesday if I'd let him but I

absolutely forbid him to go. I've told him ALL week " if you start feeling bad,

come home. "

Fortunately he has the type of job where he can pretty much do that. Heck he can

even

catch up on emails and what not at home. So he gets home tonight and says he

thinks he

has a fever and that he's pretty sure he's had one all day! I wanted to beat him

with the

pillow he was laying on! I called the on call coordinator and they told me to

give him some

Tylenol and make sure he's getting plenty of fluids and if his fever wasn't done

in an hour

and a half, take him to the ER. Well it did go down. It was 101.2 the first time

he took it.

When we took it again an hour and a half later, it was 100. He got up and asked

me to

make him some hash browns....wanted french fries but they have WAY too much

sodium.

Hash browns have none as long as you don't add any. He was asleep when I got

home

from picking our daughter up from a school function. Hopefully some rest will do

him

good.

Why are men so darned stubborn? Sometimes I wanna clobber him!

[Guest guest]

> ... What I worry about is, what to expect when I see him

> for the first time after the transplant. What should I

> expect? How do I stay calm and keep it together for him

> even though I'm terrified on the inside? ...

Bobbi,

One of the best ways to prepare yourself is to read some of the

transplant accounts located in the Links section of the PSC-Support

website in the " Transplant Stories " folder.

http://health.groups.yahoo.com/group//links/Transplant_Stories_001067\

522118/

Dr. Bingo has a well documented account of his transplant in 1996.

http://ourworld.compuserve.com/homepages/DrBingo/LIVER.htm

It includes photos, one while he was in intensive care with ventilator

and NG tube (and probably 4 or 5 other lines attached but out of

view). His mother view of the process is reported in her diary of the

transplant. http://ourworld.compuserve.com/homepages/DrBingo/diary.htm

Some of the stories are retrospective accounts, other are links to

updates written to this group on a daily (or more frequent basis). All

are eyeopening and different. There is no single transplant

experience, but these accounts will prepare you for what to expect and

leave you feeling confident that you can find the strength to cope

with whatever happens - even if you say as you read, " I sure hope we

don't go there during Chris's transplant. "

Tim R, ltx 4/4/98, 6/18/07 & 7/7/07

[Guest guest]

> ... What I worry about is, what to expect when I see him

> for the first time after the transplant. What should I

> expect? How do I stay calm and keep it together for him

> even though I'm terrified on the inside? ...

Bobbi,

One of the best ways to prepare yourself is to read some of the

transplant accounts located in the Links section of the PSC-Support

website in the " Transplant Stories " folder.

http://health.groups.yahoo.com/group//links/Transplant_Stories_001067\

522118/

Dr. Bingo has a well documented account of his transplant in 1996.

http://ourworld.compuserve.com/homepages/DrBingo/LIVER.htm

It includes photos, one while he was in intensive care with ventilator

and NG tube (and probably 4 or 5 other lines attached but out of

view). His mother view of the process is reported in her diary of the

transplant. http://ourworld.compuserve.com/homepages/DrBingo/diary.htm

Some of the stories are retrospective accounts, other are links to

updates written to this group on a daily (or more frequent basis). All

are eyeopening and different. There is no single transplant

experience, but these accounts will prepare you for what to expect and

leave you feeling confident that you can find the strength to cope

with whatever happens - even if you say as you read, " I sure hope we

don't go there during Chris's transplant. "

Tim R, ltx 4/4/98, 6/18/07 & 7/7/07

[Guest guest]

In speaking with my sister-in-law about the account of it all, she did indicate that she was just so ready after all these years that she was the most calm of everybody there with her pre-surgery and not at all nervous. Is this your husband? You can totally clobber your husband!!! To: Sent: Friday, January 23, 2009 9:00:58 PMSubject: Re: Starting to freak out a little

Thank you. I am so glad to hear your sister-in-law is doing well. One thing that keeps saying is "I don't even remember what normal feels like." I think feeling GOOD will be a shock to him, although in a good way. I already have a Caring Bridge page set up for him although I need to update it.And you know, he does tend to be the one that sort of holds everybody else up. I think he's been dealing with it so long and is SO tired of being sick, he's like whatever, bring it on! Know what I mean? Although if he doesn't start listening to me when I tell him to come home if he starts feeling bad, he's gonna end up being a DONOR! LOL He got out of the hospital Sunday, went back to work Wednesday. Would have gone back Tuesday if I'd let him but I absolutely forbid him to go. I've told him ALL week "if you start feeling bad, come home." Fortunately he has the type of job where he can pretty much do that.

Heck he can even catch up on emails and what not at home. So he gets home tonight and says he thinks he has a fever and that he's pretty sure he's had one all day! I wanted to beat him with the pillow he was laying on! I called the on call coordinator and they told me to give him some Tylenol and make sure he's getting plenty of fluids and if his fever wasn't done in an hour and a half, take him to the ER. Well it did go down. It was 101.2 the first time he took it. When we took it again an hour and a half later, it was 100. He got up and asked me to make him some hash browns....wanted french fries but they have WAY too much sodium. Hash browns have none as long as you don't add any. He was asleep when I got home from picking our daughter up from a school function. Hopefully some rest will do him good. Why are men so darned stubborn? Sometimes I wanna clobber him!

------------------------------------

[Guest guest]

In speaking with my sister-in-law about the account of it all, she did indicate that she was just so ready after all these years that she was the most calm of everybody there with her pre-surgery and not at all nervous. Is this your husband? You can totally clobber your husband!!! To: Sent: Friday, January 23, 2009 9:00:58 PMSubject: Re: Starting to freak out a little

Thank you. I am so glad to hear your sister-in-law is doing well. One thing that keeps saying is "I don't even remember what normal feels like." I think feeling GOOD will be a shock to him, although in a good way. I already have a Caring Bridge page set up for him although I need to update it.And you know, he does tend to be the one that sort of holds everybody else up. I think he's been dealing with it so long and is SO tired of being sick, he's like whatever, bring it on! Know what I mean? Although if he doesn't start listening to me when I tell him to come home if he starts feeling bad, he's gonna end up being a DONOR! LOL He got out of the hospital Sunday, went back to work Wednesday. Would have gone back Tuesday if I'd let him but I absolutely forbid him to go. I've told him ALL week "if you start feeling bad, come home." Fortunately he has the type of job where he can pretty much do that.

Heck he can even catch up on emails and what not at home. So he gets home tonight and says he thinks he has a fever and that he's pretty sure he's had one all day! I wanted to beat him with the pillow he was laying on! I called the on call coordinator and they told me to give him some Tylenol and make sure he's getting plenty of fluids and if his fever wasn't done in an hour and a half, take him to the ER. Well it did go down. It was 101.2 the first time he took it. When we took it again an hour and a half later, it was 100. He got up and asked me to make him some hash browns....wanted french fries but they have WAY too much sodium. Hash browns have none as long as you don't add any. He was asleep when I got home from picking our daughter up from a school function. Hopefully some rest will do him good. Why are men so darned stubborn? Sometimes I wanna clobber him!

------------------------------------

[Guest guest]

Down to

100 wouldn’t be down enough in my book. 100 is where my transplant

coordinator and Dr. told me to come in. Next time they tell you to raise a red

flag if it’s not “down,” I’d ask how far down…

Take

care,

Anita

Well it did go down. It was 101.2 the first

time he took it.

When we took it again an hour and a half later, it was 100.

[Guest guest]

Down to

100 wouldn’t be down enough in my book. 100 is where my transplant

coordinator and Dr. told me to come in. Next time they tell you to raise a red

flag if it’s not “down,” I’d ask how far down…

Take

care,

Anita

Well it did go down. It was 101.2 the first

time he took it.

When we took it again an hour and a half later, it was 100.

[Guest guest]

Down to

100 wouldn’t be down enough in my book. 100 is where my transplant

coordinator and Dr. told me to come in. Next time they tell you to raise a red

flag if it’s not “down,” I’d ask how far down…

Take

care,

Anita

Well it did go down. It was 101.2 the first

time he took it.

When we took it again an hour and a half later, it was 100.