New Member searching for answers

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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