To Jean concerning and IU

[Guest guest]

Hi Jean,

Sorry about the complications concerning . I know you were

so hopeful last week that things were finally moving in the right

direction.

It is easy to take the lazy way out once we start to feel better. No

doubt I am guilty of the same thing....that when I am in the middle

of a severe attack, I will tell myself " this is it, I will finally suck up

my pride and ask for help " . but then as soon as things calm

down I get complacent and find myself not following through on

my resolve.

You are right that it is up to the individual to help themselves. You

have tried so hard and have offered so much...I hate to see you

be discouraged and shut out.......

As far as the IU thing, I can only offer generalities as I am not

sure what has had done already or how far along her

diagnosis is. But what I would speculate is that it would be

helpful to make the appointment with Dr Lehman for both an

office visit and the ERCP. His clinic usually recommends that

you do both especially if you are coming from a distance. At the

consultation he will decide whether to go through with the ERCP

or not and cancelling it at short notice is not considered a

no-show in that clinic. Once you get the appointment, I would

have her referring doctor write a letter to Dr Lehman to familiarize

him with 's history. Then what I would do, and this is just my

opinion because of my personality, is to have write a letter

to him outlining where her pain is, what makes it better, what

makes it worse, how it interferes with her daily living, etc. I found

that if she can describe her pain in relation to other painful

conditions that are common to people or that she may have

experienced it helps the doctor to grasp the idea better (for

example I rated my pancreatic pain worse than my gallbladder

surgery, worse than my ruptured ovary and almost as bad as my

abdominal abscesses) Because most physicians have

witnessed and treated some of these more common conditions

that are very painful, they are more apt to appreciate what the

patient is living with. Also she can state clearly what her goals

are for meeting with him. For example: " I need for you to do

whatever it takes to find the cause of the pain and a way to fix

it.....I am at the point of not being able to cope with it using the my

skills. I need your help " . or " I just want to be able to go for a walk

once a day without needing to sleep the next two days:... or

something like that.

I used this approach with one GI that I saw here in the city and it

had pretty amazing effects. Within that consultation he had a

tentative diagnosis (after 3 years of in-depth monkeying around

at a medical school associated hospital) and had the plan of

attack all outlined. After meeting with this doctor, things ran

quickly and the problem was found and treatment was begun all

within a week. After three years of feeling so sick that I was

begging people to tell me how to kill myself, losing weight,

almost losing a marraige, basically losing any self respect, I

had dramatic relief from that first diagnostic and therapeutic

ERCP. Granted, it didn't cure me (by bringing me back to my

pre-sickness days) but it took away the worst pain that I ever had

to live with long term. I still have considerable day to day pain,

and the ERCPs with the stents was very hard on my system, but

after a year and a half now since my last one I am fairly

convinced that I am better than I have been since this whole

thing started in May 2000. I have no idea what will happen in the

next years, but I do not regret undergoing the ERCP, stents etc. It

probably saved my life, definitely my quality of life.

Once she actually meets with Dr Lehman, hopefully he will be

already familiar with her history and can concentrate on the

examination and treatment plan. He will order any blood work or

imaging studies that he requires, to be done that day so that

everything is in place for the ERCP. The only caution that I can

make is that he can be intimidating in the exam room but deep

down I think he is a very caring person. Even if he thinks the

ERCP may not show anything, if the patient is adament about

having it done, he will concede unless he really thinks it is not

the right thing to do. So if really wants it done, don' t let her

be talked out of it easily. Sometimes surprising and unexpected

things can be found.

I absolutely understand her attitude because i am basically the

same way. But I do know in my heart that there is a line that I will

not cross - that is, I know at what point I will no longer go it alone.

Each of us sets it at a different point and sometimes where we

set it is based on erroneous assumptions (like there is nothing

that can be done, or he won't believe me., etc). Hopefully, at

some point she will realize that her problems can be treated and

that it is worthwhile to keep looking for the person who can offer

her help.

Even though I ended up being disappointed in my endoscopist

that found my problem and did the stenting, I do realize that he

was the only one whol was able to figure out what the problem

was and gave me relief from my acute condition. Where we

parted ways was the different expectations that we had. I wanted

to be " cured " , to have my old way of life back; he realized that the

best he could do was to save my life in order to go on, not to give

me back a prior life. Now that I am almost two years out from our

first encounter, I realize that from his point of view, he was

successful and for the most part he was.

laurie