Re: Candy

[Guest guest]

MaC....

I'm so sorry...what a tragedy for you and your wife. I'm so grateful

you shared that with me. This board has so many compassionate people

willing to help others. It renews my belief in humanity.

I didn't know where to turn for help. I found it.

(((Hugs)))

Candy

>

> Candy,

> Just to touch base on what Bob posted about being evaluated. My

wifes doctors told me flat out she couldn't have a liver transplant

until she participated in an inpatient facility. Later, after she

passed away, I found out it wasn't their decision to make, it was the

transplant doctors at a transplant center which she never got the

chance to see. So my point is, he shouldn't be ruled out of a

transplant evaluation, especially if that advice is coming from an

internist. An internist may also not know the transplant procedures

and at the very least should be consulting with a hepatologist.

>

> MaC

[Guest guest]

Hi Jan,

They told you that you were too old? I'm speechless, I don't know

what to say. How can they be so cold, detached and cruel, and sleep

at night?

I understand, though, that you're content. (((Hug)))

Your last paragraph is right on the money. That's me, the leader. I

always want to make everything right again. You haven't offended me,

quite the opposite. My husband has told me something similar - Let it be.

I'm so used to being the oldest and my brothers coming to me to

straighten out problems, that I'm having difficulty giving up that

role. I'm always the first one that they call, even before my Mom.

I've just had a " light bulb moment " .

Candy

>

> My definitive diagnosis was done by a gastroenterologist after

ordering a

> biopsy. At that point he told me I had 3 years to live. That was

about 6

> years ago now, so even some lower level specialists don't know what

they are

> talking about. He also told me to plan on transplant. When I went

for my

> first transplant evaluation I was told I would not be given a

transplant,

> but the good news was that I would have more than those 3 years to

live, by

> that point I think I had already gone through the first 2 of those 3

years.

> I was very upset, so I asked to be referred to the Mayo Clinic

transplant

> center. I am originally from Minnesota and the Mayo Clinic there is

next to

> God, so I felt I could believe what they told me, even though the

one I went

> to was in Phoenix <S> They told me that I did have longer to live,

and that

> I couldn't get a transplant here in Arizona, but it might be

possible to go

> to another state and qualify. Well, I didn't deteriorate fast

enough and

> now I am too old in most states to qualifty. I will be 65 in June

and still

> a matter of years I would think before I would need to have one unless I

> start going downhill quickly. Right now I have three years of life

in my

> mind. Not sure why, could be less, but I don't expect more. And I am

> content with that.

>

> One thing I wanted to say to the lady who just discovered her brother is

> really ill and has no real information on his condition, or even

about the

> treatment he is getting. It is difficult not to have any say in what

> happens to those we love. My father signed a dnr order when he was

in the

> hospital with heart and kidney failure. I felt abandoned by the

fact that

> he chose not to fight to the last ounce of strength and medical care

> available. Just recently, a dear aunt, his oldest sibling, only one

of his

> family left decided that at almost 96 and with gallbladder problems,

heart

> problems and other problems, she had lived as long as she wanted to

live.

> She took to her bed, became severely dehydrated and eventually died

which is

> what she wanted. She refused any treatment. I don't think I could

ever do

> that, but I had to tell her that I loved her and let her know it was her

> decision. Her son had talked her out of non treatment many times

before,

> but this time he just left it up to her. I think what the rest of

us need

> to do in these circumstances over which we have no control is to

admit that

> we don't have control. And as someone said, make sure that the patient

> knows that we love them regardless of how reckless we think their

actions

> are, how uneducated about the possibilities for treatment they are.

We can

> only let them know gently what we know from our experience and then

leave it

> up to them, pray for them. Then you don't have the memories of the

> frustration and possible fights occurring after the loved one has

died. You

> are probably right in saying that they are embarrassed by not

changing or

> trying to change the behavior before. But, even though the

information was

> out there that this might be the outcome, they didn't believe it

then. I

> hope you can come to a place where you feel comfortable within yourself

> since you will be the one who will be left. I hope I am not

offending you

> by what I am saying. Jan H