Re: How do I help my wife - Support group?

[Guest guest]

My husband HATES doctors/hospitals. But he went with me for my

transplant evaluation and it was very beneficial for both of us. I

don't know about your transplant center, but mine requires you have a

support person with you. Part of the transplant evaluation is who will

be your support person before/during/after. One person came without a

support person and was sent home before process was even started.

My husband did not go to all the test with me (I could tell he was

feeling overwhelmed so he just dropped me off for some of the test). I

was required to have a support person for the first day of

information, the sessions on living wills etc, meetings with the

doctors, and a meeting with a social worker that discussed the support

needed during this time and discussed it I really had the support that

was going to be needed.

My husband is very glad he went, he was able to ask questions and talk

about his concerns. Also he know my doctors, his way around the

hospital, and my pre transplant nurse. IF you wife is not able to

cope with this now I suggest another family member or close friend go

with you.

i will be praying for you and your wife coping with PSC. I know she

cares about you.

[Guest guest]

My husband HATES doctors/hospitals. But he went with me for my

transplant evaluation and it was very beneficial for both of us. I

don't know about your transplant center, but mine requires you have a

support person with you. Part of the transplant evaluation is who will

be your support person before/during/after. One person came without a

support person and was sent home before process was even started.

My husband did not go to all the test with me (I could tell he was

feeling overwhelmed so he just dropped me off for some of the test). I

was required to have a support person for the first day of

information, the sessions on living wills etc, meetings with the

doctors, and a meeting with a social worker that discussed the support

needed during this time and discussed it I really had the support that

was going to be needed.

My husband is very glad he went, he was able to ask questions and talk

about his concerns. Also he know my doctors, his way around the

hospital, and my pre transplant nurse. IF you wife is not able to

cope with this now I suggest another family member or close friend go

with you.

i will be praying for you and your wife coping with PSC. I know she

cares about you.

[Guest guest]

Boy or boy have I been there.

My husband had illeostomy in 60's, psc dx 1999 the same time as Walter Payton

died.

We were fortunate to have friends who flew us to Mayo, Rochester after months of

hospitalization here in Peoria,IL. What a nightmare for both of us but we took

our son who kept me grounded and gave us strength and was the best advocate

anyone could ask for. He taught me to keep copious notes, really a daily

journal, all brochures and contacts, and even insisted on accompanying Bob into

most procedures and tests. I guess because he carried a briefcase and wore a

suit everyday they thought he was important. It could also be because he is

charming like his mother. lol

The suggestion that someone else accompany you is a wonderful idea and maybe you

wife will come here for support or I am willing to talk to her if she wishes.

Please feel free to email me back and I will give you my phone # if she wishes.

An additional note: We have been married for over 40 yrs. ,Bob has had a miriad

of symptoms and we have gotten thru, it is a bumpy road but as medical science

get better and better there are more options than ever. Bob is still in denial

and I do the info gathering here in this wonderful group and pass it on as

needed. Whatever it takes.

[Guest guest]

Boy or boy have I been there.

My husband had illeostomy in 60's, psc dx 1999 the same time as Walter Payton

died.

We were fortunate to have friends who flew us to Mayo, Rochester after months of

hospitalization here in Peoria,IL. What a nightmare for both of us but we took

our son who kept me grounded and gave us strength and was the best advocate

anyone could ask for. He taught me to keep copious notes, really a daily

journal, all brochures and contacts, and even insisted on accompanying Bob into

most procedures and tests. I guess because he carried a briefcase and wore a

suit everyday they thought he was important. It could also be because he is

charming like his mother. lol

The suggestion that someone else accompany you is a wonderful idea and maybe you

wife will come here for support or I am willing to talk to her if she wishes.

Please feel free to email me back and I will give you my phone # if she wishes.

An additional note: We have been married for over 40 yrs. ,Bob has had a miriad

of symptoms and we have gotten thru, it is a bumpy road but as medical science

get better and better there are more options than ever. Bob is still in denial

and I do the info gathering here in this wonderful group and pass it on as

needed. Whatever it takes.

[Guest guest]

Boy or boy have I been there.

My husband had illeostomy in 60's, psc dx 1999 the same time as Walter Payton

died.

We were fortunate to have friends who flew us to Mayo, Rochester after months of

hospitalization here in Peoria,IL. What a nightmare for both of us but we took

our son who kept me grounded and gave us strength and was the best advocate

anyone could ask for. He taught me to keep copious notes, really a daily

journal, all brochures and contacts, and even insisted on accompanying Bob into

most procedures and tests. I guess because he carried a briefcase and wore a

suit everyday they thought he was important. It could also be because he is

charming like his mother. lol

The suggestion that someone else accompany you is a wonderful idea and maybe you

wife will come here for support or I am willing to talk to her if she wishes.

Please feel free to email me back and I will give you my phone # if she wishes.

An additional note: We have been married for over 40 yrs. ,Bob has had a miriad

of symptoms and we have gotten thru, it is a bumpy road but as medical science

get better and better there are more options than ever. Bob is still in denial

and I do the info gathering here in this wonderful group and pass it on as

needed. Whatever it takes.

[Guest guest]

Hi Jeff,

That's a good question and a tough situation. I suppose every person is

different and might respond differently to different tactics. However,

I would think that for a lot of people, playing up the positives of

having a liver transplant might help. I don't have the advantage of

being on that side of the coin yet, but from the accounts I've read of

transplants, a lot of people seem to find their energy return, their

jaundice clear up, their thinking getting clearer, etc. Heck, maybe

making post TX plans would help. Plan that vacation you'll now have the

energy for! Just an idea. Let us know if something works. I think most

of us will be in similar situations at some point.

[Guest guest]

Hi Jeff,

That's a good question and a tough situation. I suppose every person is

different and might respond differently to different tactics. However,

I would think that for a lot of people, playing up the positives of

having a liver transplant might help. I don't have the advantage of

being on that side of the coin yet, but from the accounts I've read of

transplants, a lot of people seem to find their energy return, their

jaundice clear up, their thinking getting clearer, etc. Heck, maybe

making post TX plans would help. Plan that vacation you'll now have the

energy for! Just an idea. Let us know if something works. I think most

of us will be in similar situations at some point.

[Guest guest]

Hi Jeff,

That's a good question and a tough situation. I suppose every person is

different and might respond differently to different tactics. However,

I would think that for a lot of people, playing up the positives of

having a liver transplant might help. I don't have the advantage of

being on that side of the coin yet, but from the accounts I've read of

transplants, a lot of people seem to find their energy return, their

jaundice clear up, their thinking getting clearer, etc. Heck, maybe

making post TX plans would help. Plan that vacation you'll now have the

energy for! Just an idea. Let us know if something works. I think most

of us will be in similar situations at some point.

[Guest guest]

Jeff,

Hi. I'm not sure where you're located or if your hospital is in the town you

live in/work in, but you may want to try contacting whatever hospital your wife

is nearest or you're at and ask them about spousal/family support groups. Most

hospitals have them, but even if they don't, they may be able to give you the

name of a family who is experiencing or has experienced what you're going

through and may be willing to talk/offer support, etc.

I think your wife is very lucky to have you looking out for her.

Keep us updated on your progress and good luck at your TX meetings!

Sandi in VA