Re: Diane-more on fentynyl

[Guest guest]

Sharon took Fentynyl for 6 years before being rotated off of it in favor of oral

dilaudid. It worked very well in her case. Hers was in the form of a lolipop. I

believe that my trial with it was negatively affected by a severe cold, which

included the really high fever, and looking back, I remember that he had started

me on the lowest possible dose, which was at the time brand new, and very very

slight. So they do now have a really small dose patch which they previously did

not. My best advice is to not give up if it doesnt set well with him. I have

been on fentynyl, oxycodone, oxymorphone, and now I am on morphine. The morphine

works for me better than any of the others did. I believe that it is because

the morphine is most like my own body chemistry, because it does not even feel

like I am taking a drug. There is no " high " feeling at all. The only thing I

will say is that if I do not eat a little snack with my medicine, I will get the

super bad

nausea. This makes NPO tests really really hard. My endoscope was a " nothing

after midnight " kind of thing, and I did get sick after taking morphine on an

empty stomach. I hope the fentynyl helps Terry. I am so happy you now have

hospice to help you. I was told by the nursing home people that after Ardis got

on hospice she might very well have a rebound because a lot of time the medical

treatment makes people really sick, while keeping them from dying. Like

spironolactone, and other betablockers. They made her really really dizzy,

because they made her blood pressure loooow. This was the goal to prevent her

varicies from bleeding. The Hospice goal of easing suffering is so different and

refreshing for those who cannot go on with curative care, and in the case of

Ardis, after a long long journey down a road of endless doctor visits, and

illness. I guess I really kind of envy those who are in the running for

transplants and on the oppisite side, those

who are qualified to be on hospice. I am kind of stuck in the middle right now.

Last night was the worst night in a long long time. Despite really good pain

meds, I got myself the grandaddy of all liver aches. oooooooooweeeee did it

hurt. I dare not take an extra pill, or two for fear of starting an escalation

without the doctors approval, and possiblly leading to the dreaded " tolerance " .

Good for Terry and good for you! BIG HUG. love, Bobby

long life, old age, everything good-Apache prayer

________________________________

To: livercirrhosissupport

Sent: Friday, January 9, 2009 1:49:27 AM

Subject: Re: Diane

Thank you abijann. It is a huge relief to know that the hospice team are only a

phone call away. I did read the article on Fentanyl and I am aware of the

problems. I talked to the Case Manager about it today and she told me we could

try it and, if there are problems, our doctor will simply change it. It is due

to arrive tomorrow. They wanted to give him morphine, but he can't take

morphine, so they're going to try the Fentanyl. I would never have been

comfortable doing it without the presence of the hospice team. My world is

feeling much more manageable now.

____________ _________ _________ __

From: abijann <no_reply@yahoogroup s.com>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Thursday, January 8, 2009 10:02:02 PM

Subject: Diane

I'm so glad you will have help now and be able to relax a little...

you truly deserve it. I was kind of hoping that Terry would change

his mind about the transplant option, though.

I don't know if you read the article on those Fentanyl patches that

I posted. You have to be extremely careful with those things.

My husband didn't want to use the fentanyl button much in the hospital

after the operation... it can cause the patient to hallucinate.

The nurses are not suppose to click it for the patient...but many of

them did.

[Guest guest]

Bobby, thank you so much for the encouragement!  As always, you know exactly the

right thing to say!  I too am so thankful that we now have Hospice.  I have

already been visited by our Case Manager, have spoken on the telephone with our

Nurse and just finished a wonderful conversation with our Chaplain.  I have felt

nothing but love, support and encouragement from either of these wonderful

people.  The consistently tell me I'm doing the right thing and offer

suggestions for making Terry's life better and my life easier.  What else could

I ask for than all of that?!  I am praying for you Bobby.  I am so sorry your

pain was so bad last night.  I pray you are feeling better today.  To this

point, Terry's pain hadn't been really bad, but just over the past couple of

weeks it has really gotten much worse.  I'm so thankful to have a source of

relief for him.

Hugs...........

Diane

________________________________

To: livercirrhosissupport

Sent: Friday, January 9, 2009 12:03:09 PM

Subject: Re: Diane-more on fentynyl

Sharon took Fentynyl for 6 years before being rotated off of it in favor of oral

dilaudid. It worked very well in her case. Hers was in the form of a lolipop. I

believe that my trial with it was negatively affected by a severe cold, which

included the really high fever, and looking back, I remember that he had started

me on the lowest possible dose, which was at the time brand new, and very very

slight. So they do now have a really small dose patch which they previously did

not. My best advice is to not give up if it doesnt set well with him. I have

been on fentynyl, oxycodone, oxymorphone, and now I am on morphine. The morphine

works for me better than any of the others did. I believe that it is because the

morphine is most like my own body chemistry, because it does not even feel like

I am taking a drug. There is no " high " feeling at all. The only thing I will say

is that if I do not eat a little snack with my medicine, I will get the super

bad

nausea. This makes NPO tests really really hard. My endoscope was a " nothing

after midnight " kind of thing, and I did get sick after taking morphine on an

empty stomach. I hope the fentynyl helps Terry. I am so happy you now have

hospice to help you. I was told by the nursing home people that after Ardis got

on hospice she might very well have a rebound because a lot of time the medical

treatment makes people really sick, while keeping them from dying. Like

spironolactone, and other betablockers. They made her really really dizzy,

because they made her blood pressure loooow. This was the goal to prevent her

varicies from bleeding. The Hospice goal of easing suffering is so different and

refreshing for those who cannot go on with curative care, and in the case of

Ardis, after a long long journey down a road of endless doctor visits, and

illness. I guess I really kind of envy those who are in the running for

transplants and on the oppisite side, those

who are qualified to be on hospice. I am kind of stuck in the middle right now.

Last night was the worst night in a long long time. Despite really good pain

meds, I got myself the grandaddy of all liver aches. oooooooooweeeee did it

hurt. I dare not take an extra pill, or two for fear of starting an escalation

without the doctors approval, and possiblly leading to the dreaded " tolerance " .

Good for Terry and good for you! BIG HUG. love, Bobby

long life, old age, everything good-Apache prayer

____________ _________ _________ __

From: diane chandler <dianechandler@ att.net>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Friday, January 9, 2009 1:49:27 AM

Subject: Re: Diane

Thank you abijann. It is a huge relief to know that the hospice team are only a

phone call away. I did read the article on Fentanyl and I am aware of the

problems. I talked to the Case Manager about it today and she told me we could

try it and, if there are problems, our doctor will simply change it. It is due

to arrive tomorrow. They wanted to give him morphine, but he can't take

morphine, so they're going to try the Fentanyl. I would never have been

comfortable doing it without the presence of the hospice team. My world is

feeling much more manageable now.

____________ _________ _________ __

From: abijann <no_reply@yahoogrou p s.com>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Thursday, January 8, 2009 10:02:02 PM

Subject: Diane

I'm so glad you will have help now and be able to relax a little...

you truly deserve it. I was kind of hoping that Terry would change

his mind about the transplant option, though.

I don't know if you read the article on those Fentanyl patches that

I posted. You have to be extremely careful with those things.

My husband didn't want to use the fentanyl button much in the hospital

after the operation... it can cause the patient to hallucinate.

The nurses are not suppose to click it for the patient...but many of

them did.

[Guest guest]

Hi Bobby,

I'm sorry you had such pain last night. I can't say that I know how

that is because I was lucky not to have pain. Sure, my liver ached

now and then, even to make me bend over in pain sometimes, but it

would go away as quickly as it came.

Penny

>

> Sharon took Fentynyl for 6 years before being rotated off of it in

favor of oral dilaudid. It worked very well in her case. Hers was in

the form of a lolipop. I believe that my trial with it was negatively

affected by a severe cold, which included the really high fever, and

looking back, I remember that he had started me on the lowest

possible dose, which was at the time brand new, and very very slight.

So they do now have a really small dose patch which they previously

did not. My best advice is to not give up if it doesnt set well with

him. I have been on fentynyl, oxycodone, oxymorphone, and now I am on

morphine. The morphine works for me better than any of the others

did. I believe that it is because the morphine is most like my own

body chemistry, because it does not even feel like I am taking a

drug. There is no " high " feeling at all. The only thing I will say is

that if I do not eat a little snack with my medicine, I will get the

super bad

> nausea. This makes NPO tests really really hard. My endoscope was

a " nothing after midnight " kind of thing, and I did get sick after

taking morphine on an empty stomach. I hope the fentynyl helps Terry.

I am so happy you now have hospice to help you. I was told by the

nursing home people that after Ardis got on hospice she might very

well have a rebound because a lot of time the medical treatment makes

people really sick, while keeping them from dying. Like

spironolactone, and other betablockers. They made her really really

dizzy, because they made her blood pressure loooow. This was the goal

to prevent her varicies from bleeding. The Hospice goal of easing

suffering is so different and refreshing for those who cannot go on

with curative care, and in the case of Ardis, after a long long

journey down a road of endless doctor visits, and illness. I guess I

really kind of envy those who are in the running for transplants and

on the oppisite side, those

> who are qualified to be on hospice. I am kind of stuck in the

middle right now. Last night was the worst night in a long long time.

Despite really good pain meds, I got myself the grandaddy of all

liver aches. oooooooooweeeee did it hurt. I dare not take an extra

pill, or two for fear of starting an escalation without the doctors

approval, and possiblly leading to the dreaded " tolerance " . Good for

Terry and good for you! BIG HUG. love, Bobby

>

> long life, old age, everything good-Apache prayer

>

>

>

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Friday, January 9, 2009 1:49:27 AM

> Subject: Re: Diane

>

>

> Thank you abijann. It is a huge relief to know that the hospice

team are only a phone call away. I did read the article on Fentanyl

and I am aware of the problems. I talked to the Case Manager about

it today and she told me we could try it and, if there are problems,

our doctor will simply change it. It is due to arrive tomorrow.

They wanted to give him morphine, but he can't take morphine, so

they're going to try the Fentanyl. I would never have been

comfortable doing it without the presence of the hospice team. My

world is feeling much more manageable now.

>

> ____________ _________ _________ __

> From: abijann <no_reply@yahoogroup s.com>

> To: livercirrhosissuppo rtyahoogroups (DOT) com

> Sent: Thursday, January 8, 2009 10:02:02 PM

> Subject: Diane

>

> I'm so glad you will have help now and be able to relax a little...

> you truly deserve it. I was kind of hoping that Terry would change

> his mind about the transplant option, though.

>

> I don't know if you read the article on those Fentanyl patches that

> I posted. You have to be extremely careful with those things.

>

> My husband didn't want to use the fentanyl button much in the

hospital

> after the operation... it can cause the patient to hallucinate.

> The nurses are not suppose to click it for the patient...but many

of

> them did.

>

>