RE: 's Dr. visit - The cold facts

[Guest guest]

I am so sorry...that is so sad, you and your family HANG IN THERE...it

has to be so very difficult!!!

Bobby & Anne

's Dr. visit - The cold facts

To misquote a line from " Apocalypse Now " I wanted an estimated

survival time, and for my sins, they gave me one. went to the

doctor on Thursday. After examining him, the Dr. ordered more blood

tests, and talked to my wife without in the room. He said that

he would authorize Hospice care whenever she felt she needed it. He

said we were looking at less than 6 months, and could be a lot less

if he had any catastrophic problems such as bursting of the spleen or

ascites.

One of our other concerns is with his open sores. tends to pick

at the sores he has as a result of itching. It is one of those things

that would take 24x7 attention to stop him from doing it. The

problem comes when he moves about the house touching light switches,

dishes etc. We are concerned about staff infection with the rest of

the family, which he gave himself a couple of months ago. The Dr.

said this is a serious concern, and he shouldn't be sharing a

bathroom with anyone, and should be washing his hands often. These

are difficult things to control, but a serious staff infection could

be fatal to my father-in-law and of course protecting our kids is

important to us. Any comments or suggestions?

Another question I have for the group. doesn't know the

seriousness of his disease. I am wondering if telling him is the

right thing to do, or would it be a selfish thing to do to make us

feel better or something? Remember, he just lost his mom last year.

The last time I took him to the doctor, (after he was released from

the hospital from his staff infection) we had a conversation, one of

the deepest ones that didn't involve asking for food or puzzles; it

went something like this.

: Mom die!

Me: Yes, she did. What are you thinking about that?

: Hospital.

Me: Yeah, you were in the hospital. What about that?

: I die?

Me: Your not going to die now. We all are going to die some time

though. You are sick and that is why we have to go to the doctor and

we need to take the medicine he give you just how he tells us.

: Strawberry shake on the way home?

Me: Yes, I told you we would stop for a shake on the way home.

Thanks,

Mark. Resident, Brother-in-law with stage 4 PSC

[Guest guest]

Mark,

My

thoughts are with you and your family.

Deb (mother of Sam (10); PSC 8/04)

-----Original

Message-----

From: mark_airplane

Sent: Friday, October 15, 2004

9:41 AM

To:

Subject: 's Dr.

visit - The cold facts

To misquote a line from " Apocalypse Now " I wanted an estimated

survival time, and for my sins, they gave me one. went to the

doctor on Thursday. After examining him, the Dr. ordered more blood

tests, and talked to my wife without in the room. He said that

he would authorize Hospice care whenever she felt she needed it. He

said we were looking at less than 6 months, and could be a lot less

if he had any catastrophic problems such as bursting of the spleen or

ascites.

One of our other concerns is with his open sores. tends to pick

at the sores he has as a result of itching. It is one of those things

that would take 24x7 attention to stop him from doing it. The

problem comes when he moves about the house touching light switches,

dishes etc. We are concerned about staff infection with the rest of

the family, which he gave himself a couple of months ago. The Dr.

said this is a serious concern, and he shouldn't be sharing a

bathroom with anyone, and should be washing his hands often. These

are difficult things to control, but a serious staff infection could

be fatal to my father-in-law and of course protecting our kids is

important to us. Any comments or suggestions?

Another question I have for the group. doesn't know the

seriousness of his disease. I am wondering if telling him is the

right thing to do, or would it be a selfish thing to do to make us

feel better or something? Remember, he just lost his mom last year.

The last time I took him to the doctor, (after he was released from

the hospital from his staff infection) we had a conversation, one of

the deepest ones that didn't involve asking for food or puzzles; it

went something like this.

: Mom die!

Me: Yes, she did. What are you thinking about that?

: Hospital.

Me: Yeah, you were in the hospital. What about that?

: I die?

Me: Your not going to die now. We all are going to die some

time

though. You are sick and that is why we have to go to the doctor and

we need to take the medicine he give you just how he tells us.

: Strawberry shake on the way home?

Me: Yes, I told you we would stop for a shake on the way home.

Thanks,

Mark. Resident, Brother-in-law with stage 4 PSC

[Guest guest]

,

I found it difficult enough to tell my husband Larry about the PSC

diagnosis (he was still out from his ERCP when the dr. told me) -- I

can't imagine what you are going through and my heart goes out to

you.

I think you've already brought up the real issue re: telling ,

which is the reasoning behind the decision. Do you think would

be better for knowing? Do you think it would cause him any distress?

I certainly wouldn't lie to him if he asked, and I think you handled

it very well from your recounting of the earlier conversation

following his mother's death.

Maybe you could make a list of the pros, the cons and the reasons

for telling or not telling him, and then look into your heart for

the right decision.

My thoughts and prayers are with you and your family in this hard

time.

Nellie

Wife of Larry (31), PSC 09/04 UC 10/04

[Guest guest]

Mark,

Would he even comprehend what you were telling him? I hope that you can

work things out.

Rob, (Mr. Itch)

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