Re: New Member searching for answers

[Guest guest]

In a message dated 09/13/2002 12:50:17 PM Pacific Daylight Time,

lungsforben@... writes:

> I was wondering what others use for pain with their pancreatitis and if you

> have any suggestions on how to convense these transplant doctors that Ben

> is in severe pain and this is not an act he is putting on.Thank you for

> your time and sorry for it being so lengthy. Terry/caregiver and wife

> to Ben Terry in Texas

Dear and Ben; First I would like to welcome you to the Pancreatitis

Association International. There are many members that use various pain

management treatments, but if you would like to start research please go to:

http://www.pancassociation.org/links.html#pain

There are several good internet sites that explain pain management. You can

also search archived posts at

http://groups.yahoo.com/group/pancreatitis/messages

I just went into the search box and typed " pain manage " and got found quite a

few posts (You might want to start with #35603 and the replies). The search

engine seems to pull up more than what I ask for, but I am sure other members

will post soon. Many get their email as a daily digest, so you may get many

answers all at once.

Hope this helps in the meantime,

Gail West, Indiana

PS: if you have any questions you want to ask privately you may email me at

gwest1955@...

[Guest guest]

In a message dated 09/13/2002 12:50:17 PM Pacific Daylight Time,

lungsforben@... writes:

> I was wondering what others use for pain with their pancreatitis and if you

> have any suggestions on how to convense these transplant doctors that Ben

> is in severe pain and this is not an act he is putting on.Thank you for

> your time and sorry for it being so lengthy. Terry/caregiver and wife

> to Ben Terry in Texas

Dear and Ben; First I would like to welcome you to the Pancreatitis

Association International. There are many members that use various pain

management treatments, but if you would like to start research please go to:

http://www.pancassociation.org/links.html#pain

There are several good internet sites that explain pain management. You can

also search archived posts at

http://groups.yahoo.com/group/pancreatitis/messages

I just went into the search box and typed " pain manage " and got found quite a

few posts (You might want to start with #35603 and the replies). The search

engine seems to pull up more than what I ask for, but I am sure other members

will post soon. Many get their email as a daily digest, so you may get many

answers all at once.

Hope this helps in the meantime,

Gail West, Indiana

PS: if you have any questions you want to ask privately you may email me at

gwest1955@...

[Guest guest]

>

>Reply-To: pancreatitis

>To: pancreatitis

>Subject: New Member searching for answers

>Date: Fri, 13 Sep 2002 19:49:46 -0000

>>X-Apparently-To: pancreatitis

>]

>

>Hello!My name is Terry(38) and I am the wife and caregiver to my

>husband Ben(36).On January 25,2002 Ben received a double lung transplant,we

>waited 3 1/2 years for these precious lungs so that Ben could start to live

>a somewhat normal life.Ben was diagnosd with a Genetic lung disease 7 years

>ago called Alpha1 Antitrypsen.He has lost 1 older brother and out of the

>remaining 7 siblings 5 have the same disease.Ben has also lost his Mother

>in 1998 from Liver Cancer and his Father in 1995 from a massive

>Heartattack.# weeks after Ben's transplant about 6:00am he woke me up

>complaining of having a heartattack,I called his doctor and she told us to

>come right in and she did an EKG on him but it was normal.She ordered a CT

>where they found his Pancreas was inflammed and that he had 2 pseudocysts

>on the pancreas.One was 9.3cm and the other was 4.7cm so they admitted Ben

>into the hospital and put him on TPN,clear liquids and a Morphine pump.He

>spent 28 days on TPN and 42 days in the hospital.When he was released he

>was put on Duragesic Patches 100mcg but we felt it was suppressing his

>breathing so we asked the Digestive doctor to put him n 50mcg patches and

>that was fine but it did not cut the pain so we asked to go back on 75mcg

>to find a happy medium and now they think he is addicted.His Digestive

>doctor has told his Pulmonologist that this is something that Ben is going

>to have to live with and that they need to find a happy medium for him so

>he live a productive life.Instead they put him on 25mcg patches and he got

>to the point where he could not get out of bed because it hurt to move.We

>are waiting for the Digestive doctor to schedule surgery to drain the

>cysts.Ben had a doctors appoinment with his doctor here at home and he got

>angry because Ben was in so much pain and so he put Ben back on 75mcg

>patches and since then he has been doing great just slight pain but not

>enough to keep him from mowing the yard and trimming trees and walking the

>dogs,but his transplant doctors got mad at Ben's local doctor and told him

>not to perscribe him anymore pain medication.We fee that until the surgery

>they should leave him on 75mcg patches and then after the surgery they can

>taper him off.I was wondering what others use for pain with their

>pancreatitis and if you have any suggestions on how to convense these

>transplant doctors that Ben is in severe pain and this is not an act he is

>putting on.Thank you for your time and sorry for it being so lengthy.

>Terry/caregiver and wife to Ben Terry in Texas

>

:

What a story. Obviously your transplant doctor is clueless to th4e pain

caused from pancreatitis. Many of us use Duragesic patches. I use 75mcg

ones. The problem is the DEA and there " war on Drugs " A doctor that

prescribes a ton of narcotics can be investigated, so rather than buck the

sysytem and stand up for their patients they let their patients suffer. If

this is really an issue maybe he should refer him to a pain management

specialist. SOme are good others are a waste of time but it seems to be the

way to go these days. No one wants to be responsible for a patient becoming

addicted at their hands. Althoug I beleive thir is a huge difference between

taking something to " get high " and using a prescribed medicine in the way it

is ordered. Best of luck. Maybe the PCP just needs to stand up to the

transplant doc and tell him he does not believe in making a patient suffer.

shannon -SC

Tuten

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

>

>Reply-To: pancreatitis

>To: pancreatitis

>Subject: New Member searching for answers

>Date: Fri, 13 Sep 2002 19:49:46 -0000

>>X-Apparently-To: pancreatitis

>]

>

>Hello!My name is Terry(38) and I am the wife and caregiver to my

>husband Ben(36).On January 25,2002 Ben received a double lung transplant,we

>waited 3 1/2 years for these precious lungs so that Ben could start to live

>a somewhat normal life.Ben was diagnosd with a Genetic lung disease 7 years

>ago called Alpha1 Antitrypsen.He has lost 1 older brother and out of the

>remaining 7 siblings 5 have the same disease.Ben has also lost his Mother

>in 1998 from Liver Cancer and his Father in 1995 from a massive

>Heartattack.# weeks after Ben's transplant about 6:00am he woke me up

>complaining of having a heartattack,I called his doctor and she told us to

>come right in and she did an EKG on him but it was normal.She ordered a CT

>where they found his Pancreas was inflammed and that he had 2 pseudocysts

>on the pancreas.One was 9.3cm and the other was 4.7cm so they admitted Ben

>into the hospital and put him on TPN,clear liquids and a Morphine pump.He

>spent 28 days on TPN and 42 days in the hospital.When he was released he

>was put on Duragesic Patches 100mcg but we felt it was suppressing his

>breathing so we asked the Digestive doctor to put him n 50mcg patches and

>that was fine but it did not cut the pain so we asked to go back on 75mcg

>to find a happy medium and now they think he is addicted.His Digestive

>doctor has told his Pulmonologist that this is something that Ben is going

>to have to live with and that they need to find a happy medium for him so

>he live a productive life.Instead they put him on 25mcg patches and he got

>to the point where he could not get out of bed because it hurt to move.We

>are waiting for the Digestive doctor to schedule surgery to drain the

>cysts.Ben had a doctors appoinment with his doctor here at home and he got

>angry because Ben was in so much pain and so he put Ben back on 75mcg

>patches and since then he has been doing great just slight pain but not

>enough to keep him from mowing the yard and trimming trees and walking the

>dogs,but his transplant doctors got mad at Ben's local doctor and told him

>not to perscribe him anymore pain medication.We fee that until the surgery

>they should leave him on 75mcg patches and then after the surgery they can

>taper him off.I was wondering what others use for pain with their

>pancreatitis and if you have any suggestions on how to convense these

>transplant doctors that Ben is in severe pain and this is not an act he is

>putting on.Thank you for your time and sorry for it being so lengthy.

>Terry/caregiver and wife to Ben Terry in Texas

>

:

What a story. Obviously your transplant doctor is clueless to th4e pain

caused from pancreatitis. Many of us use Duragesic patches. I use 75mcg

ones. The problem is the DEA and there " war on Drugs " A doctor that

prescribes a ton of narcotics can be investigated, so rather than buck the

sysytem and stand up for their patients they let their patients suffer. If

this is really an issue maybe he should refer him to a pain management

specialist. SOme are good others are a waste of time but it seems to be the

way to go these days. No one wants to be responsible for a patient becoming

addicted at their hands. Althoug I beleive thir is a huge difference between

taking something to " get high " and using a prescribed medicine in the way it

is ordered. Best of luck. Maybe the PCP just needs to stand up to the

transplant doc and tell him he does not believe in making a patient suffer.

shannon -SC

Tuten

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

>

>Reply-To: pancreatitis

>To: pancreatitis

>Subject: New Member searching for answers

>Date: Fri, 13 Sep 2002 19:49:46 -0000

>>X-Apparently-To: pancreatitis

>]

>

>Hello!My name is Terry(38) and I am the wife and caregiver to my

>husband Ben(36).On January 25,2002 Ben received a double lung transplant,we

>waited 3 1/2 years for these precious lungs so that Ben could start to live

>a somewhat normal life.Ben was diagnosd with a Genetic lung disease 7 years

>ago called Alpha1 Antitrypsen.He has lost 1 older brother and out of the

>remaining 7 siblings 5 have the same disease.Ben has also lost his Mother

>in 1998 from Liver Cancer and his Father in 1995 from a massive

>Heartattack.# weeks after Ben's transplant about 6:00am he woke me up

>complaining of having a heartattack,I called his doctor and she told us to

>come right in and she did an EKG on him but it was normal.She ordered a CT

>where they found his Pancreas was inflammed and that he had 2 pseudocysts

>on the pancreas.One was 9.3cm and the other was 4.7cm so they admitted Ben

>into the hospital and put him on TPN,clear liquids and a Morphine pump.He

>spent 28 days on TPN and 42 days in the hospital.When he was released he

>was put on Duragesic Patches 100mcg but we felt it was suppressing his

>breathing so we asked the Digestive doctor to put him n 50mcg patches and

>that was fine but it did not cut the pain so we asked to go back on 75mcg

>to find a happy medium and now they think he is addicted.His Digestive

>doctor has told his Pulmonologist that this is something that Ben is going

>to have to live with and that they need to find a happy medium for him so

>he live a productive life.Instead they put him on 25mcg patches and he got

>to the point where he could not get out of bed because it hurt to move.We

>are waiting for the Digestive doctor to schedule surgery to drain the

>cysts.Ben had a doctors appoinment with his doctor here at home and he got

>angry because Ben was in so much pain and so he put Ben back on 75mcg

>patches and since then he has been doing great just slight pain but not

>enough to keep him from mowing the yard and trimming trees and walking the

>dogs,but his transplant doctors got mad at Ben's local doctor and told him

>not to perscribe him anymore pain medication.We fee that until the surgery

>they should leave him on 75mcg patches and then after the surgery they can

>taper him off.I was wondering what others use for pain with their

>pancreatitis and if you have any suggestions on how to convense these

>transplant doctors that Ben is in severe pain and this is not an act he is

>putting on.Thank you for your time and sorry for it being so lengthy.

>Terry/caregiver and wife to Ben Terry in Texas

>

:

What a story. Obviously your transplant doctor is clueless to th4e pain

caused from pancreatitis. Many of us use Duragesic patches. I use 75mcg

ones. The problem is the DEA and there " war on Drugs " A doctor that

prescribes a ton of narcotics can be investigated, so rather than buck the

sysytem and stand up for their patients they let their patients suffer. If

this is really an issue maybe he should refer him to a pain management

specialist. SOme are good others are a waste of time but it seems to be the

way to go these days. No one wants to be responsible for a patient becoming

addicted at their hands. Althoug I beleive thir is a huge difference between

taking something to " get high " and using a prescribed medicine in the way it

is ordered. Best of luck. Maybe the PCP just needs to stand up to the

transplant doc and tell him he does not believe in making a patient suffer.

shannon -SC

Tuten

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

Terry,

I take Methadone 3 times a day for my pancreas. Here's

something you might want to tell those transplant doctors. I

got this from another member who was treated by an

oncologist. The oncologist said the pain levels experienced

with chronic and acute pancreatitis is exactly the same as

that experienced by patients with pancreatic cancer and

therefore needed to be treated with the same level of pain

medications.

Maybe that will give him a clue. In addition, your husband

is free to find other transplant doctors who are willing to

work with his local doctor in treating his other conditions

besides the lungs. They are not god. Plus, due to JCAHO

regulations, they are also required to treat his pain or a

complaint can be sent to JCAHO. (http://www.jcaho.com).

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Southwest Representative

Pancreatitis Association, International