Re: Dan (Post Tx Status, Marriage)

[Guest guest]

,

I've been doing well, very well. I go in for annual check-ups and

get bloodwork done every 3 months. Other than the fact that I have a

large scar on my belly, no one would ever know I had a transplant.

My sleep is affected by the anti-rejection meds (Prograf), my body

jerks at night, sometimes almost constantly. I think this makes my

sleep too light.

Restoril (sleeping pill) a couple of times a week keeps me sane.

Had some major marriage issues post tx. I'm not sure if that is from

me taking back my role in the family due to increased endurance /

strength or something else. Have you heard anyone experience similar

issues?

Dan

>

> So great to " see " you again! How have you been doing? You're

right as far as pregnancy goes. From what I was told, the same thing

that keeps the body from seeing the baby as a " foreign object " also

keeps it from attacking the liver. However, because of the risks

from pre-eclampsia this will be my last baby. The " human incubator "

is shutting down business =) I hope you're doing well post

transplant.

>

[Guest guest]

I hope you don't mind, I edited your private e-mail and am responding to it here...

Thanks for the side-bar. My wife and I have been in counseling for four months. Things are getting better, but that death spiral of "I can't give you what you need because I'm getting nothing from you" is quite hard to survive. I made the decision that if we were going to make it, we would NEED outside help. I was so weak and weary that I basically mandated that we would go and go separately. We alternated weeks for a short time until we both had the strength to address things together. Even after that we went back to individual sessions for one round to touch base and add clarification.

This is NOT easy! I was ready to leave and that was saying a lot because of my personal beliefs against divorce.

I pray that you find someone to help you through this. Get out of the death spiral any way you can!!!

Dan

[We have] had major marital issues since the transplant. We both have needed so much more than the other person could give. It has been enormously difficult. I think the stress of such a big event and recovery rocks the world of everyone involved. I'm sorry to hear that I'm not alone in this, but I suspect we're not the only ones who have had problems...It'll be interesting to see if anyone replies to your email on the group.

[Guest guest]

I just want to echo what Tina was written.

I had a lot of people who came along in the weeks after the transplant

who wanted to " give me a break. " But, I was there every day before the

transplant. Every day during the transplant -- during the surgery, the

8 days in ICU, the 9 days in general care. Oh yes, she had her colon

removed two days before the transplant so she had extra needs. I

became possessive. I was there all along, I was going to step aside

anytime post transplant.

It took about 6 months for a return to " normalcy " . It's 2+ years

later, and people will ask how Lori is doing. Oh yeah, she's doing

great. She's as feisty as ever.:-)

For a spouse/child/friend, it may be the hardest thing you ever do in

your life. But wow. it's worth it. Give it time.

>

> " I couldn't imagine leaving my husband before or after transplant.

If anything it should make you all closer than before transplant. You

all have been through so much together. I know the trips to the

hospital and testing can take alot out of you but, things will get

better soon. It takes about six months to a year for things to get

better. Hang in there and wish you both the best of luck. Take care Tina

[Guest guest]

It's been almost 3 years since my transplant. [Thangs ain't gettn no

bettr here...]

I know time heals a lot, but it's just not happening this time. My

thought is that my wife enjoyed being in charge while I was ill, and

now just won't let go. It's like a dance. We both have roles to

play. The leader isn't any better or worse than the partner, but if

both try to lead, there is a whole lot of stumbling on the dance

floor.

Any men out with PSC going through similar issues?

Dan

>

> I just want to echo what Tina was written.

>

> I had a lot of people who came along in the weeks after the

transplant

> who wanted to " give me a break. " But, I was there every day before

the

> transplant. Every day during the transplant -- during the surgery,

the

> 8 days in ICU, the 9 days in general care. Oh yes, she had her colon

> removed two days before the transplant so she had extra needs. I

> became possessive. I was there all along, I was going to step aside

> anytime post transplant.

>

> It took about 6 months for a return to " normalcy " . It's 2+ years

> later, and people will ask how Lori is doing. Oh yeah, she's doing

> great. She's as feisty as ever.:-)

>

> For a spouse/child/friend, it may be the hardest thing you ever do

in

> your life. But wow. it's worth it. Give it time.

>

>

[Guest guest]

Tina, The time in the hospital was probably the best time in our

marriage. I think that was the first time I really felt loved

instead of needed. It brought me to tears for quite some time

afterward just thinking about it. Now, I'm just exhausted by

contention.

Dan (Post Tx - 8/5/04)

> [We have] had major marital issues since the transplant. We both

have needed so much more than the other person could give. It has

been enormously difficult. I think the stress of such a big event and

recovery rocks the world of everyone involved. I'm sorry to hear that

I'm not alone in this, but I suspect we're not the only ones who have

had problems...It' ll be interesting to see if anyone replies to your

email on the group.

>

>

> __________________________________________________

>

[Guest guest]

Hi Dan,

What you

describe sounds very similar to what happens in couples where one person is

shipped off to war. They actually counsel people for this in advance of

their deployment because it is extremely challenging when the spouse

returns. The “home spouse” has no choice but to take charge

while the “war spouse” is absent. Home spouse must run the

entire household in every way. They learn to become “house master”

because their other half of the support system is away. When their

support returns home again, it becomes extremely difficult to snap back in to

old habits of the “the way we were”. If you have kids living

at home it becomes even more complicated because the kids, too, have

learned to depend on, turn to “home spouse” for everything. “War

spouse” returns and is fired up and ready to slip back into his/her

driver’s seat, but the chauffeur is still at the reigns and is resistant

to slide over. My suggestion is that you both seek

counseling. There are many professionals out there that are used to

dealing with this. Don’t let your marriage fall apart! It’s

too important.

You’re

in my prayers!

From: [mailto: ] On Behalf Of Dan Bertles

I know time heals a lot, but it's just not happening this time. My

thought is that my wife enjoyed being in charge while I was ill, and

now just won't let go. It's like a dance. We both have roles to

play. The leader isn't any better or worse than the partner, but if

both try to lead, there is a whole lot of stumbling on the dance

floor.

Dan

[Guest guest]

-----Original

Message-----

My thought is that my

wife enjoyed being in charge while I was ill, and now just won't let go.

I’m not a guy

going through this, but have gone through it with my husband - twice. The first time when he spent 18 months

in Vietnam and the second time when we lived in Georgia, when he got transferred

to Oregon. Because our daughter was

a senior in high school, we decided the kids and I would stay behind until she graduated. My husband came home most weekends.

I sure can’t

speak for your wife, but maybe I can give some female insight. It’s not that we enjoyed being in

charge, after all, we were thrown into the position, whether we wanted it or not. It’s kind of like an 18 year old

who just graduated high school and is forced to take the CEO job

at Bank America. But, once there,

male/female has to do what needs to be done, so we take

the job on, because we have no choice, you can’t do it, so someone must. We do it as best we can and seemly do a fine

job, might be shaky at first, but it gets easier, bills do get paid, the grass

does get mowed, the house is cleaned, groceries get brought, garbage goes out

on time, cars/trucks are repaired, everything

depends on us (you had a partner, but we’re doing it alone!) Before long, the job seems natural and

runs like a well oiled machine – and we did it (surprising even ourselves.)

What we believed all along that we

couldn’t do – we are doing!

Then……you

come home and in a blink of an eye, you want your job back and right now this

minute! All of a sudden someone is

looking over our shoulder saying – I didn’t do it that way, do it

this way…...I don’t do that…..Why are you doing that……I

never…..When I did that….. What we hear is

you’re not capable of doing anything, but…. we have been doing it! Meanwhile we’re saying to ourselves

– look sport, I didn’t ask for this job in the first place, but I did

it and did it well, so back off! That’s

when the trouble starts.

I know how hard it is

for a man, after all - you da man.

The “head of the household” is drummed into your head from

the time you’re a baby. When

you get sick enough that you HAVE to let someone else do what is second nature

to you, it has to be awful painful and close to impossibly hard to let go. No one, man or woman wants to rely on

someone else – for everything, but thanks to PSC, there comes a time,

when we have no choice. Realizing that

reversing the male/female role took time to complete and now it will take even

more time to reverse back will help both of you. Take back your rightful role –

slowly and gratefully, saying things like, you did a super job doing _ _ _ while

I was sick, but I feel so much better now, so let me help you with this. Or, I am so happy I have recovered enough

to help you now. Or, doesn’t

it feel good to be partners helping each other again? By using carefully worded phases, you can

show her how much you appreciated the fine job she did all by herself and that

by taking back over, you aren’t saying she can’t

do things, but that you’re working together once again. She did a really good job while you were

sick and now you can show her how much you appreciate her hard work through

love and patience (on both of your parts.) The enemy isn’t who does what job,

or how well they do or don’t do it.

The enemy now is, and always has been, PSC!

Start dating again,

spend time together doing things you both enjoy, you have a new gift of life

and a new birthday, you both just have to remind each other that you have one

go round and through the miracle of medical wonders, you have a second chance

at love. Just my 2 cents for what

it’s worth, sorry for length,

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

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

[Guest guest]

Hello:

Maybe you could take over some of the non- traditional jobs. Being a caregiver I would gladly give up toilet cleaning, window washing, organizing the income tax folder, talking to my mother-in-law 4 times a day. I don't mean to sound flippant but just to give you some avenues to persue. I think the best for me would be to come home and find that my husband had planted me a vegetable garden and rows of flowers. Wow,,, anyone else have some fantasys they could shoot off here to Dan.

dee

[Guest guest]

Sometimes it's the attitude of the one or the other person..I've known some people who became really mean when they were sick....It's hard enough to deal with let alone someone who acts out...My ex husband became really mean and had a heart condition..He started running around with other women etc. and I was thinking maybe drugs as well..I left him 18 months after the divorce he died..He was his own worse enemy..

Ahhh...imagining that irresistible "new car" smell? Check out

new cars at Yahoo! Autos.

[Guest guest]

Marriage is hard - period. My MIL passed away last weekend - just shy of 70 years together (we're only at 36!). It's a balancing act, especially with two (sometimes hardheaded - on both sides) people who don't necessarily have the same views on everything. I had a similar experience 15 years ago. I spent most of 8 months at work studying and working for a license - 12+ hours/day including weekends. When I finally received it, someone was shocked when I was home at 4:00 every day. As Barb said, when you're used to doing everything, it's kind of hard to revert back.

I suspect that's exactly how " Rosie the Riveter " felt (depending on your age, you may have to look up the reference).

It's not like the fairy tales. Marriage is hard - period; but it my experience, it is worth the effort. I will continue to work at it, as I have no desire to live alone (or train/be trained in by someone new!).

Arne

55 - UC 1977, PSC 2000

Alive and (mostly) well in Minnesota

________________________________

From: [mailto: ] On Behalf Of Dan Bertles

I know time heals a lot, but it's just not happening this time. My

thought is that my wife enjoyed being in charge while I was ill, and

now just won't let go. It's like a dance. We both have roles to

play. The leader isn't any better or worse than the partner, but if

both try to lead, there is a whole lot of stumbling on the dance

floor...

[Guest guest]

Well, I'll take care of planting the vegetable garden (maybe this weekend), but you're on your own with flowers!

Arne

55 - UC 1977, PSC 2000

Alive and (mostly) well in Minnesota

________________________________

From: [mailto: ] On Behalf Of Dee Vinovich

Hello:

....I think the best for me would be to come home and find that my husband had planted me a vegetable garden and rows of flowers...

[Guest guest]

Well, Said Barb. That is the truth. I was laughing when you said "you da man" and it had been drilled in their head all of their life. It was hard for my husband to let go and be dependent on me but, it made us closer and he didn't resent it. Sure he would say things like you can do better than me and that you don't deserve this, and wouldn't be surprised if you wanted to leave. Well, he didn't ask to be sick either, nor could he help it. THE EVIL PSC rawed it's ugly head and there we are doing the best we could do. Be patient and it will all work out!!!! It is rough I'm not going to lie, but we got through it. Take Care and the best of luck Tina

RE: Re: Dan (Post Tx Status, Marriage)

-----Original Message----- My thought is that my wife enjoyed being in charge while I was ill, and now just won't let go.

I’m not a guy going through this, but have gone through it with my husband - twice. The first time when he spent 18 months in Vietnam and the second time when we lived in Georgia, when he got transferred to Oregon. Because our daughter was a senior in high school, we decided the kids and I would stay behind until she graduated. My husband came home most weekends.

I sure can’t speak for your wife, but maybe I can give some female insight. It’s not that we enjoyed being in charge, after all, we were thrown into the position, whether we wanted it or not. It’s kind of like an 18 year old who just graduated high school and is forced to take the CEO job at Bank America. But, once there, male/female has to do what needs to be done, so we take the job on, because we have no choice, you can’t do it, so someone must. We do it as best we can and

seemly do a fine job, might be shaky at first, but it gets easier, bills do get paid, the grass does get mowed, the house is cleaned, groceries get brought, garbage goes out on time, cars/trucks are repaired, everything depends on us (you had a partner, but we’re doing it alone!) Before long, the job seems natural and runs like a well oiled machine – and we did it (surprising even ourselves.) What we believed all along that we couldn’t do – we are doing!

Then……you come home and in a blink of an eye, you want your job back and right now this minute! All of a sudden someone is looking over our shoulder saying – I didn’t do it that way, do it this way…...I don’t do that…..Why are you doing that……I never…..When I did that….. What we hear is you’re not capable of doing anything, but…. we have been doing it! Meanwhile we’re saying to ourselves – look sport, I didn’t ask for this job in the first place, but I did it and did it well, so back off! That’s when the trouble starts.

I know how hard it is for a man, after all - you da man. The “head of the household” is drummed into your head from the time you’re a baby. When you get sick enough that you HAVE to let someone else do what is second nature to you, it has to be awful painful and close to impossibly hard to let go. No one, man or woman wants to rely on someone else – for everything, but thanks to PSC, there comes a time, when we have no choice. Realizing that reversing the male/female role took time to complete and now it will take even more time to reverse back will help both of you. Take back your rightful role – slowly and gratefully, saying things like, you did a super job doing _ _ _ while I was sick, but I feel so much better now, so let me help you with this.

Or, I am so happy I have recovered enough to help you now. Or, doesn’t it feel good to be partners helping each other again? By using carefully worded phases, you can show her how much you appreciated the fine job she did all by herself and that by taking back over, you aren’t saying she can’t do things, but that you’re working together once again. She did a really good job while you were sick and now you can show her how much you appreciate her hard work through love and patience (on both of your parts.) The enemy isn’t who does what job, or how well they do or don’t do it. The enemy now is, and always has been, PSC!

Start dating again, spend time together doing things you both enjoy, you have a new gift of life and a new birthday, you both just have to remind each other that you have one go round and through the miracle of medical wonders, you have a second chance at love. Just my 2 cents for what it’s worth, sorry for length,

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

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

Ahhh...imagining that irresistible "new car" smell? Check out

new cars at Yahoo! Autos.

[Guest guest]

I understand. It is very exhausting and stressful running back and forth to the hospital all hours of the night, doctor appointments, everyday chores, taking care of three kids and working full-time during all of this. Although he worked full-time right up until tranplant and went back to work six months after transplant. I don't know really what else to say but, hang in there, it will all workout. Stay strong!!!!! Take Care of yourself Tina

Re: Dan (Post Tx Status, Marriage)

Tina, The time in the hospital was probably the best time in our marriage. I think that was the first time I really felt loved instead of needed. It brought me to tears for quite some time afterward just thinking about it. Now, I'm just exhausted by contention.Dan (Post Tx - 8/5/04)> [We have] had major marital issues since the transplant. We both have needed so much more than the other person could give. It has been enormously difficult. I think the stress of such a big event and recovery rocks the world of everyone involved. I'm sorry to hear that I'm not alone in this, but I suspect we're not the only ones who have had problems...It' ll be interesting to see if anyone replies to your email on the group.> > > ____________ _________ _________ _________ _________ __>

[Guest guest]

Amen to that!!!!!!!!!!!!!!!

RE: Re: Dan (Post Tx Status, Marriage)

Marriage is hard - period. My MIL passed away last weekend - just shy of 70 years together (we're only at 36!). It's a balancing act, especially with two (sometimes hardheaded - on both sides) people who don't necessarily have the same views on everything. I had a similar experience 15 years ago. I spent most of 8 months at work studying and working for a license - 12+ hours/day including weekends. When I finally received it, someone was shocked when I was home at 4:00 every day. As Barb said, when you're used to doing everything, it's kind of hard to revert back.

I suspect that's exactly how "Rosie the Riveter" felt (depending on your age, you may have to look up the reference).

It's not like the fairy tales. Marriage is hard - period; but it my experience, it is worth the effort. I will continue to work at it, as I have no desire to live alone (or train/be trained in by someone new!).

Arne 55 - UC 1977, PSC 2000 Alive and (mostly) well in Minnesota

____________ _________ _________ __

From: @ yahoogroups. com [mailto:@ yahoogroups. com] On Behalf Of Dan Bertles

I know time heals a lot, but it's just not happening this time. My thought is that my wife enjoyed being in charge while I was ill, and now just won't let go. It's like a dance. We both have roles to play. The leader isn't any better or worse than the partner, but if both try to lead, there is a whole lot of stumbling on the dance floor...

Ahhh...imagining that irresistible "new car" smell? Check out

new cars at Yahoo! Autos.