Re: 1st Doctor's visit yesterday

October 17, 2000

Colleen,

I don't know if you saw my previous note before but I wrote to you

saying that my husband sees Dr. Kaplan at NE MEdical. We highly

recommend him, he's so knowledgable on PSC. Brigham and Women's is a

great hospital too, but, since Dr. Kaplan's so close, I don't think

it would hurt to see him...? Ed doesn't carry a bracelet or anything

like that, although maybe he should. I worry because he works on a

golf course by himself a lot.

Glad to hear the disease hasn't effected you much so far. Hope that

continues,

Gracie and Ed Reynolds

RI

October 17, 2000

--- " Colleen G. " wrote:

> do all of you carry some kind of medical alert information or

> wear some kind of medial alert jewelry? Was it recommended, or

> do you do it for peace of mind?

Now I do. Before tx I didn't. It was recommended (and order form

given out) by the tx team.

Tim tx 4/4/98

__________________________________________________

October 17, 2000

Colleen,

In my personal opinion, for whatever it's worth, I think you should see Dr.

Kaplan and get the second opinion. It certainly can't hurt anything and I

don't wholly agree with your doctor, if indeed you have had PSC for 10 years

or more. I'm am glad that they are at least monitoring you closely.

As far as the acidophilus for UC, I agree with you, I think it does work.

It really helped my IBS and I believe it helped Phil's UC. I don't agree

that diet and supplements can take the place of Actigall, there have been

too many in the group that seem to have had dramatic differences since

taking it, again my opinion. If it can keep the bile flowing better I think

that it might slow down the scaring process and I wish that Phil's had been

discovered and he had been started on it sooner before the irreversible

damage was done. Some people have adverse reactions to Actigall and in that

case there may be good reason not to take it. Again I stress this is my

opinion. Being healthy is so great and I am glad that you are and so is

Phil now after being on the Actigall, watching his diet and adding some

supplements but I have seen his healthy state go sour real fast. The

biggest thing is to be able to stay healthy. I feel much stronger now that

Phil (who they also believe has had PSC for 10 years or more) that he will

not need a tx as soon as I thought a year ago and I too pray that something

will come up that he may never need one, but in the meantime, he is on the

list -status 3 (at UCLA a person 2b on beeper status is being told that she

won't get a tx until next summer-this time last year she was told it would

be the beginning of 2001)and we are glad, just incase he would need one

sooner (Phil is one that gets cholangitis infections) and goes in for

regular testing and check ups (right now every 2 months).

We were given a form to get a medic alert tag when Phil first went to the

hepatolgist prior to being sent to UCLA for tx evaluation. There were 2

reasons we got it. Because he has the cholangitis attacks it is necessary

that he be able to go to ER and get treated with IV antibiotics. Probably

the most important reason was that while going through the tx evaluation he

found out that he can't have an MRI. He worked in the safe building

industry-around metal shavings and grinding and they checked his eyes and he

has tiny metal fragments in his eyes that during an MRI could move and cause

blindness.

Congratulations on your good doctor visit, it always is so wonderful to go

and come out knowing that everything else is doing good and that the labs

are in the normal range.

Peg, wife of Phil (57), UC 30 years, dx PSC 12/98, listed-status

3-UCLA-2/2000, living Los Angeles suburbs, CA

October 17, 2000