RE: Northern California: Joaane

March 8, 2008

Hi Joaane,

I have read your e-mail few minutes ago, after i sent

mine to , last night and then went to sleep. I

also read your other e-mail to .

I am so glad to know that you do live in . That

sounds so familiar! And that there is a group in

Sacramento that sometimes do

meet. That is great, although it is not in my

immediate area. I live over in Antioch.

I don't know if you have read my e-mail to ,

that i also have Kaiser. Are you with them, too? What

you wrote to , is correct. But are the

specialists in the Sacramento region, hepatologists or

just GI's that are more into the liver and treat PSC

patients, like the group in my area and the

surrounding Kaiser campus?

Also, do you or have you ever attended the Sacramento

meetings, yourself?

PSC/UC

Coppercopper@...> wrote:

> -

> Most insurances, including Kaiser - I think, allow

> for you to request a

> second opinion. I also know of people who travel to

> another Kaiser campus

> to see a specialist there. This happens often in

> the Sacramento region. If

> you don't mind driving, I would think there are

> Kaiser doc's in the Northern

> Calif that are knowledgeable about PSC. You may

> have to be somewhat

> assertive, but that's OK!

>

> Good luck!

> Joanne H

> (, Ca., mom of , 17, UC/PSC 2-06; JRA 98)

>

> --

> Be a better friend, newshound, and know-it-all

> with Yahoo! Mobile. Try it

> now.

>

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March 9, 2008

-

I have attended one of the PSC support meetings in Sacramento... and wish I attended them regularly, as the group was very nice and does a great job coordinating the group. The drive from Antioch is probably about 60 to 90 minutes (can't remember exactly how far from when I used to drive my older son down to soccer tournaments in the area!). It is an easy drive though.

We don't have Kaiser insurance, but as a Nurse Practitioner, I have found that there are similarities with every insurance. The consumer/member/patient who is knowledgeable and asks questions, will often find out more information - and open the door to other resources. One of the Sacramento PSC group members has lots of information on area resources, if I recall. I'll ask Soloway to forward your questions to the Sac group. Also many who participate in Sac are actually from the Bay Area.

Take care.

Joanne H

(, Ca., mom of 17, UC/PSC 2-06)

Hi Joaane,I have read your e-mail few minutes ago ... I am so glad to know that you do live in . Thatsounds so familiar! And that there is a group inSacramento that sometimes do meet. That is great, although it is not in myimmediate area. I live over in Antioch.I don't know if you have read my e-mail to ,that i also have Kaiser. Are you with them, too? Also, do you or have you ever attended the Sacramentomeetings, yourself?PSC/UC__________________________________________________________Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

March 9, 2008

Joaane,

Thanks for your response.

I am very sorry to hear that has PSC. But looking

at the bright side of not only the existence of this

very wonderful supportive group, you as a care giver

mother, is also a nurse! That is in itself a big

blessing for . He is also very young and

physically have more immunity than adults/older

adults. In addition that a lot of research is being

dne on a cure for PSC, as you know. And that generates

a lot of hope.

I appreciate it that you are contacting , for

me. As i wrote to , Kaiser do not have a

hepatologist in Contra Costa county. Also not in some

of the surrounding cities like Oakland, Fremont or

Hayward, for example. But i did have a chance to meet

w/some researchers, including a hepatologist at UCSF,

couple of times, only. That is why i was astonished

when i heard you mentioning Kaiser in Sacramento. That

is very good news, by the way. They probably do in

large cities.

I do go to Walnut Creek for the Gastro. Because only

very recently, specialties have been added to Antioch,

with the new hospital, overhere. So they do have some

GI's, with knowledge in liver diseases, but i don't

believe that they can replace hepatologists.

I might try to attend the group meeting in the future.

We drive sometimes to Sacramento when i get more

information from the group. My brother in Law lives

over in Roseville, actually. Others relatives, in

different areas, too. So depending on the location, it

does take us about~90 min if we go through

Hwy160/Hwy5. And a little more if we take

Hwy680/Hwy80.

Thanks, again. And My prayers and best wishes for

.

--- Copper copper@...> wrote:

> -

>

> I have attended one of the PSC support meetings in

> Sacramento... and wish I

> attended them regularly, as the group was very nice

> and does a

> great job coordinating the group. The drive from

> Antioch is probably about

> 60 to 90 minutes (can't remember exactly how far

> from when I used to drive

> my older son down to soccer tournaments in the

> area!). It is an easy drive

> though.

>

> We don't have Kaiser insurance, but as a Nurse

> Practitioner, I have found

> that there are similarities with every insurance.

> The

> consumer/member/patient who is knowledgeable and

> asks questions, will often

> find out more information - and open the door to

> other resources. One of

> the Sacramento PSC group members has lots of

> information on area resources,

> if I recall. I'll ask Soloway to forward

> your questions to the Sac

> group. Also many who participate in Sac are

> actually from the Bay Area.

>

> Take care.

> Joanne H

> (, Ca., mom of 17, UC/PSC 2-06)

>

> Hi Joaane,

>

> I have read your e-mail few minutes ago ...

> I am so glad to know that you do live in .

> That

> sounds so familiar! And that there is a group in

> Sacramento that sometimes do

> meet. That is great, although it is not in my

> immediate area. I live over in Antioch.

>

> I don't know if you have read my e-mail to ,

> that i also have Kaiser. Are you with them, too?

>

> Also, do you or have you ever attended the

> Sacramento

> meetings, yourself?

>

> PSC/UC

>

__________________________________________________________

> Be a better friend, newshound, and

> know-it-all with Yahoo! Mobile. Try it now.

>

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

>

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

March 12, 2008

Hi Sara,

Sorry for the delay in responding but I don't check email everyday.

Joanne asked me to respond to you.

There is a member of our group, , who lives in Pleasanton, is a

Kaiser member and recently got a liver transplant at UCSF. My

understanding is that all Kaiser North PSC patients go to UCSF for

transplants. I would expect that Kaiser would also authorize periodic

visits to a hepatologist at UCSF for PSC monitoring. If not, there

must be a hepatologist at one of the Kaiser North facilities. In fact

one of my group members, Jan, drives all the way from Placerville for

PSC monitoring and ERCPs at the Kaiser hospital in Sacramento. Write

me off-line and I will put you in touch with and Jan. My email

is jennifer@....

Our group just had a meeting March 8. We normally meet again in May

but Dr. Bowlus is planning a PSC meeting in sometime in May, and

PSC Partners is also meeting in May so, we will probably not meet in

May. Dr. Bowlus has not set the date but I will let everyone in the

Sacramento group know the details as soon as he gets them to me. Also,

I will post the information on this Board.

We are all in this together so I am happy to do whatever I can to help

you out.

(Sacramento 2001 dx PSC and UC)

>

> I appreciate it that you are contacting , for

> me. As i wrote to , Kaiser do not have a

> hepatologist in Contra Costa county. Also not in some

> of the surrounding cities like Oakland, Fremont or

> Hayward, for example. But i did have a chance to meet

> w/some researchers, including a hepatologist at UCSF,

> couple of times, only. That is why i was astonished

> when i heard you mentioning Kaiser in Sacramento. That

> is very good news, by the way. They probably do in

> large cities.

>

March 12, 2008