Re: Question @ TP

[Guest guest]

I understand Suzie's stand..I have a friend with whom I correspond with on a regular basis..It took 4 times before the treatment worked..She has now been clear for 2 1/2 years..Why give up when there is a chance!! Kathy Boo

RE: Hi Ya Suzie and Everyone --Good Night People

Gail , Calm down honey, I'm not on any list yet. I'm going to keep on trying tx as many times as they'll let me but I just don't want to go through major major surgery for just another 3 to 5 years of life spent chained to anti rejection drugs which have some nasty side effects themselves. From what I've read, it's just too much for me but who knows, I may change my mind when the time comes - if in fact it does come. I should have kept my big mouth shut. Love you all, SuzieGail Deveaux <gaila@...> wrote:

I totally agree with you Deb.I almost fell through the floor when Suzie said that last night.I value life so much.I worked in the health care field for a long time and my patients and I both knew when it was time to stop going any further but it had to be their choice and I kept my mouth shut and I respected and understood what they were saying.They were already very advanced in cancer and were going to die to matter what the medical profession did.Suzie you have options and you still have a lot of things to do.You can't take your name off the list.I think God does the pickin and choosing on who gets it to a degree.Listen to Deb cause she is saying what you need to hear.The list is only good if they get the right match and if they get the right match it was meant to be.Take care both of you girls and Suzie please listen to Deb.

Gail

http://deveauxkennels.tk

mailto:gaila@...

-----Original Message-----From: Deb [mailto:posttransplant@...]Sent: February 8, 2005 1:25 AMHepatitis Cfordummies Subject: Hi Ya Suzie and Everyone -- Good Night People

Suzie you deciding not to have a transplant now scares the hell out of me for you and for others that many be making that life or death decision to soon.

If I had made the decision to not go for a transplant I would have missed these precious years with my family, friends and loved ones.

I would have missed knowing all of you.

If someone is in need of a transplant in a few years than has added years in return that may buy them enough time for new and better after care and treatment options to hit the market that will extend their lives for many many years.

All of us were afraid that if we did tell it all in group it may sway someone in making the wrong decisions for themselves by our statements.

Everyone needs to realize Boo - Me - and Jon all did have a transplant fought like hell for life and continue to do so now. Jon - and I because of our situations tried everything post transplant and are still searching. and I were pulled off the treatment meds and had no choice - Jon is still on maintenance doses. Kathy - Thank God has not reached that stage.

We all gained very precious years in return and all still going strong.

At this time I do not want a second transplant but have always said I will make that important final decision when the times comes not now. I have no way of knowing now how I will feel about everything in the future or what medical science will come up with in time.

I hope everyone keeps all their options open and makes the final decisions that is best for them.

Have A Good Night.

Love and Hugs.

Deb

[Guest guest]

I have a question about TP...how long after the transplant do you require the care of someone else? The recovery time?until you can take care of yourself on your own......Good Question...PattyPooh

Great question Patty Pooh !!!!!!!!

We need to stop calling you Batty Patty.

It's a hard question to answer because it depends on the individual their medical problems before and after transplant or if you had drive-thru service like someone we know and love.

It can run from a short time to an extended period of time depending on any post transplant additional complications or medical history.

All transplant teams and centers have their own personal criteria for patients to met.

A person is actually being observed and judged by their treating physician's and than the transplant team before actually becoming eligible for a transplant work-up by their standards.

For me I had to have a primary care giver in-house with me prior to becoming eligible and for all of my post-op care however long it took and to show than that I and my PCG and family support system could physically and emotionally handle it all and the outcome.

Meetings with all of us and the TP Team including a Psych Evaluation for my PCG by med personnel at meetings prior to me signing and becoming eligible for a transplant.

I didn't have a very strong husband emotionally to be my PCG so we faked it. I coached him on what to say and do especially for his evaluation and even had Mel sitting on the side of him reminding him to blink and also coaching him.

See if there is a will there is a way !!!!!!!!

At ESLD a person is very sick and usually in need of a primary care giver than and through all post-op care.

It is not something a person can or should do alone without a proper support team for their own safety.

Of course I didn't do ESLD, transplant and post transplant by the book. I added officially many new problems and complications to transplant and post transplant medical possibilities.

I lost count of how many firsts and unusual medical articles that are posted and I still come up with some doozies.

I had to stop driving and ESLD knocked me on my butt and with encephalopathy for sometime for about a year before being listed. I had a very rough transplant 3 1/2 week stay discharged and 3 re-admits for short stays after that. In 6 months I started to feel a lot better even with every complication you can think of and new ones. By 1 year I was determined to get my life back giving it hell again and traveling to Florida jet skiing and all as much as I could.

I was hard and still is trying to convince my kids, family and friends that I am fine and OK enough to live and do things alone.

Every now and than I still need to escape from it all take a few days off from everyone alone, escape from HCV and anything medical to regroup, recharge and feel like a normal person again.

How's that. I think I rambled on again.

Someone help me out here and come up with a clearer short version.

Love and Hugs.

Deb

[Guest guest]

I still have six bottles of the stuff in the kitchen pantry..So if any body needs some e mail me and I will gladly ship the guk to them.. I hear peole talking out side the window and one night I thought I could fly!!! Kathy b.. <kcmija@...> wrote:

Hey Patty,

For me I required the most care pretransplant when I had encephalopathy.

I was very lucky Janet worked at home.

They have something called Lactulose that helps control the confusion,but I didn't like it much.

I guess I liked seeing a run away girl in the closet,having a family reunion in the stairwell,checking all the neighbors mail at 2 in the morning and on and on.

I was in the hospital 7 days,and came home weak,but walked and got up the stairs.I pretty much sat for six weeks,I had problems with one of my drain sites,it leaked for a long time,and we had to change the bandage every few hours,can't drive for six weeks,and weekly labs.

You definitely need someone to help,but I was probably a little spoiled.

Remember,most people with Hep C never need a transplant.

We seem to have several at this site.

I visit another Hep C site twice this big and I am the only one who has had a transplant.

Re: Question @ TP

I have a question about TP...how long after the transplant do you require the care of someone else? The recovery time?until you can take care of yourself on your own......Good Question...PattyPooh

Great question Patty Pooh !!!!!!!!

We need to stop calling you Batty Patty.

It's a hard question to answer because it depends on the individual their medical problems before and after transplant or if you had drive-thru service like someone we know and love.

It can run from a short time to an extended period of time depending on any post transplant additional complications or medical history.

All transplant teams and centers have their own personal criteria for patients to met.

A person is actually being observed and judged by their treating physician's and than the transplant team before actually becoming eligible for a transplant work-up by their standards.

For me I had to have a primary care giver in-house with me prior to becoming eligible and for all of my post-op care however long it took and to show than that I and my PCG and family support system could physically and emotionally handle it all and the outcome.

Meetings with all of us and the TP Team including a Psych Evaluation for my PCG by med personnel at meetings prior to me signing and becoming eligible for a transplant.

I didn't have a very strong husband emotionally to be my PCG so we faked it. I coached him on what to say and do especially for his evaluation and even had Mel sitting on the side of him reminding him to blink and also coaching him.

See if there is a will there is a way !!!!!!!!

At ESLD a person is very sick and usually in need of a primary care giver than and through all post-op care.

It is not something a person can or should do alone without a proper support team for their own safety.

Of course I didn't do ESLD, transplant and post transplant by the book. I added officially many new problems and complications to transplant and post transplant medical possibilities.

I lost count of how many firsts and unusual medical articles that are posted and I still come up with some doozies.

I had to stop driving and ESLD knocked me on my butt and with encephalopathy for sometime for about a year before being listed. I had a very rough transplant 3 1/2 week stay discharged and 3 re-admits for short stays after that. In 6 months I started to feel a lot better even with every complication you can think of and new ones. By 1 year I was determined to get my life back giving it hell again and traveling to Florida jet skiing and all as much as I could.

I was hard and still is trying to convince my kids, family and friends that I am fine and OK enough to live and do things alone.

Every now and than I still need to escape from it all take a few days off from everyone alone, escape from HCV and anything medical to regroup, recharge and feel like a normal person again.

How's that. I think I rambled on again.

Someone help me out here and come up with a clearer short version.

Love and Hugs.

Deb

Kathy Brunow

[Guest guest]

I've heard people talkinf outside the window -- oh, yeah, never mind, that's when I was on speed. LOL

De

Faith is the ability to not panic.

-----Original Message-----From: kathy brunow [mailto:kathy-boo@...] Sent: Thursday, February 10, 2005 11:34 AMHepatitis CSupportGroupForDummies Subject: Re: Re: Question @ TP

I still have six bottles of the stuff in the kitchen pantry..So if any body needs some e mail me and I will gladly ship the guk to them.. I hear peole talking out side the window and one night I thought I could fly!!! Kathy b..

[Guest guest]

Suz and de, speed was not my drug of choice..Kathy b.suzie <suzieandsandy@...> wrote:

Been there, heard that. My those people get around.

Suzie Motley <dmotley@...> wrote:

I've heard people talkinf outside the window -- oh, yeah, never mind, that's when I was on speed. LOL

De

Faith is the ability to not panic.

-----Original Message-----From: kathy brunow [mailto:kathy-boo@...] Sent: Thursday, February 10, 2005 11:34 AMHepatitis CSupportGroupForDummies Subject: Re: Re: Question @ TP

I still have six bottles of the stuff in the kitchen pantry..So if any body needs some e mail me and I will gladly ship the guk to them.. I hear peole talking out side the window and one night I thought I could fly!!! Kathy b..Kathy Brunow

[Guest guest]

I was one of those barb freak turned speed freak people. Wth other stuff mixed in over the years.

De

Faith is the ability to not panic.

-----Original Message-----From: kathy brunow [mailto:kathy-boo@...] Sent: Friday, February 11, 2005 11:47 AMHepatitis CSupportGroupForDummies Subject: RE: Re: Question @ TP

Suz and de, speed was not my drug of choice..Kathy b.

[Guest guest]

I was one of those barb freak turned speed freak people. Wth other stuff mixed in over the years.

De

Faith is the ability to not panic.

-----Original Message-----From: kathy brunow [mailto:kathy-boo@...] Sent: Friday, February 11, 2005 11:47 AMHepatitis CSupportGroupForDummies Subject: RE: Re: Question @ TP

Suz and de, speed was not my drug of choice..Kathy b.

[Guest guest]

But that was a separate reality..long long ago..Kathy B Motley <dmotley@...> wrote:

I was one of those barb freak turned speed freak people. Wth other stuff mixed in over the years.

De

Faith is the ability to not panic.

-----Original Message-----From: kathy brunow [mailto:kathy-boo@...] Sent: Friday, February 11, 2005 11:47 AMHepatitis CSupportGroupForDummies Subject: RE: Re: Question @ TP

Suz and de, speed was not my drug of choice..Kathy b.Kathy Brunow

[Guest guest]

long, long, LONG ago! over 20 years for me.

De

Faith is the ability to not panic.

-----Original Message-----From: kathy brunow [mailto:kathy-boo@...] Sent: Friday, February 11, 2005 9:01 PMHepatitis CSupportGroupForDummies Subject: RE: Re: Question @ TP

But that was a separate reality..long long ago..Kathy B