For Chrissy

[Guest guest]

Hello again!

I e-mailed Prof about genetic testing and he hasn't replied. This

usually means he's away as he normally replies quickly. I doubt if

he'd commit himself though.....professional medical etiquette etc!!!

I MIGHT be able to ask him face to face though, at my next

appointment but that's not until July. Prof doesn't do the ICT,

remember. I know he works closely with Pittsburgh where Dr Whitcomb

works but I'm not sure if he's a physician or surgeon. I think their

common interet is inherited diseases of the pancreas, in particular,

although I've read a lot from Pitt on CP in general. Pitt is the

genetic testing centre so it sounds like a good place for 2nd

opinions. (I'm not even thinking about Geo at the moment!) Bert

seemed impressed by the team at Cincinnatti, I seem to remember. I

supppose the most famous is Dr Sutherland at Minnesota.

Shirley, Crystal, (Peg's son) and others I've read about had

their TP/ICTs done by him, or at his hospital. However, he pioneered

the ICT, I believe, so that might be his fame. I'm sure your

specialist will advise you wisely, especially as you work in the

same hospital....am I right about that? I'm sure there are lots of

outstanding pancreatic surgeons throughout the US. I've seen one or

two others mentioned and I'll try to find out. I think another one

was a Dr Ertan (don't remember where). Dr Lehman? Not sure where or

if he's a physician alone. I'm SURE lots of people will help you on

this one, Chrissy.

You have every right to a second opinion. Are there others in your

family with symptoms?

Have you tried those enzymes yet? They replace my own pancreas'

enzymes and helping my digestion, thereby usually almost eradicating

the lower-abdominal pain of malabsorption. In addition, for some

reason which has to do with " resting " the pancreas, I think, they

seem to even help the horrible upper-abdominal/back pain of the

pancreas itself, which is, for me personally, harder to bear than

the lower sort. I know they don't do this for everyone but I think

they're worth a try. They might just help.

Anyway, Chrissy, I know you know far more about medical metters than

I do, so I won't go on. I know each case is different. My pancreas

has gone completely, I understand, with atrophy and extensive

calcifications throughout. The actual visible, physical damage seems

to have happened quite quickly, from what my gastro said, even

though I've always had symptoms of one kind or another. The symptoms

were worst in the 1980's, in some ways (awful steatorrhoea and

weight loss) but the pain itself came back badly and more frequently

between 2000 and 2003. When I saw Prof in October, I was feeling

very unwell and I think that's why he mentioned the TP, as well as

my cancer risk from HP. Since then the enzymes seem to have had a

definite effect for the good. You know yourself what mixed thoughts

have been going through my mind. Incidentally, a neighbour of mine

who is an anaesthetist, thought that the TP was a wise move if my

pains were getting worse. He's anaesthetised a number of patients

for the op over the years, and not even with Prof who came after my

neighbour retired, and I don't think he'd have said that to me if he

didn't believe it was a wise thing to do. We've known him for years.

His wife told me privately also that he thought it would be sensible

as I was feeling so ill. Since then things have changed a bit for me.

You can only pray about this one and discuss with your specialist.

I'm sure he'd understand the wish for a second opinion and maybe

even advise you where to go. Is he himself a gastro or a pancreatic

specialist? You may have told me and I've forgotten.

God bless Chrissy and keep in touch if poss.

Fliss