Hi Joanne, nice to hear from you.? Yeah, I've had two shunt revisions in the
last four years after going 22 years without having one.? I also have lymphedema
in my legs that is being treated in Fayetteville.? That's my biggest hurdle the
last few years.? Lots of infections from the weeping it will do from time to
time, etc.?? My birth father died last September from lung cancer, Frankie had a
heart attack and didn't work for four months, and Mom had atrial fibrillation
that has been being treated for the last 6 months after she spent a week at Cape
Fear.? She still works with the psychiatric hospital at Cape Fear although now
with adults.? Frankie is retiring in January.? There are 9 grandkids in this
family.?? My sister has two of her own, a stepson that she and his father are
raising, Chris married in 2001 and his wife had two children from a previous
marriage, plus they have had two of their own, and Tonia has two teenagers.??
Her husband Matt just retired from the Army and they have settled here.??

I spent three days at Duke in November myself we thought I was having shunt
failure again but it was a MRSA infection in my leg and a pretty severe case of
a urinary tract infection.? I still have the urostomy pouch that was done by the
doctor that was there prior to George Webster (yeah that was 32 years ago) but
Cary Z had previously talked to me (like when I was in my early 20's) about the
Mitrofanoff and ACE procedures.? I dismissed him at the time because quite
honestly I was fed up with surgeries and of course in our youth we try to avoid
as much of that as possible.?? However, I am at a point now with these issues
that the urostomy is not serving me well and I've never had good bowel issues,
so I am going to talk with Cary Z when I see them again in October to see what
they feel in regards to me being a candidate for these procedures irregardless
of whether they would want to perform them.?? I'll be 40 in January 2009.? Time
flies when you are living life.? Notice I did not say having fun.? It fell to me
to advocate for my father and make arrangements for his hospice care (he had
lung cancer), and ultimately we have an inpatient hospice here in town that I
placed him in for his last few days and then it fell to me to arrange his
funeral arrangements which weren't that hard since he was from Pittsboro, I went
with that.??

I figured you were still at Duke.? You know even though folks change positions
and things change around a bit, the same people seem to stay at Duke for a long
time so I've always known that even if I get to Duke and run across an issue I'm
not familiar with, that I can page you and you'd find me the answer :)

Take care, it's good to hear from you!

Shelly


?


-----Original Message-----
From: Joanne Mackey <macke003@...>
To: sbaofnc@yahoogroups.com
Sent: Tue, 3 Jun 2008 10:49 am
Subject: Re: [SBAofNC] Re: Is this group active still? Moving by late summer to
NC






Shelly,
Saw your posting and was glad to hear you are doing ok but sad to hear that
you are having health problems! How's your Mom? Let her know that I said
Hi! I am still at Duke although as you know not with the SB clinic
anymore. I do hear from some of the now adults every now and then. Chris
is doing well, working in Chapel Hill in the NC Office of Disability and
Health. He has a house in Durham that he has made fully accessible.
My other kids are all over the place - but now 4 of the 6 live in NC! I
have 5 grandchildren and 2 more on the way!
Give my best to your family,
Joanne

Joanne Mackey, RN, MSN, CPNP
Duke University Medical Center
Division of Medical Genetics
(919)681-1945

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Shelly Mendenhall
<ShellyontheWeb@a
ol.com> To
Sent by: sbaofnc@yahoogroups.com
sbaofnc@yahoogrou cc
ps.com
Subject
Re: [SBAofNC] Re: Is this group
06/02/2008 08:19 active still? Moving by late
PM summer to NC


Please respond to
sbaofnc@yahoogrou
ps.com



I'm in Fayetteville which is about 3 hours from Charlotte.?? I'm not sure what
is
going on with the state association anymore or if the Charlotte or Asheville
support groups are still active.? I am the former Executive Director of the
state
association, but resigned due to family and health reasons in 2000.?? We used to
have a 1-800 # with the state office and I turned it over to the gal that
replaced
me in 2000 who lives in Iron Station outside of Charlotte. I'm not sure if they
still have it or if the number is still active even but here it is, you can call
it and see if it's active and see what if anything is going on.? I know our
Fayetteville group which my Mom was president of is defunct due to lack of
participation, as well as ongoing health issues with me.? But here's the state #
call it and see if you get even the recording anymore 1-800-847-2262.?? If not,
I
don't know where to lead you because I've been out of the loop the last 8 years
or
so and I don't even attend the comprehensive SB clinics anymore......... my
lifestyle is such that it's more productive for me to go to the separate urology
and neurosurgery clinics at Duke.? I do know that the gentleman that was leading
the Asheville group when I resigned from the state board of directors, passed
away
about 5 years ago.? I'm not sure the group got back on it's feet afterwards.

Hope that helps!!?

Shelly Mendenhall

?

-----Original Message-----
From: lost_star_vega <no_reply@yahoogroups.com>
To: sbaofnc@yahoogroups.com
Sent: Mon, 2 Jun 2008 8:04 pm
Subject: [SBAofNC] Re: Is this group active still? Moving by late summer to NC

I'm in the Charlotte area. I have a 3 yr old girl with SB. I have lived
in NC my whole life, it is a very nice place. I hope your move goes
well.

~Jamie

--- In sbaofnc@yahoogroups.com, "christine" <christine1970_2000@...>
wrote:
>
> I am moving to the Rutherfordton area. I had written the group back in
> Feb of this year I think saying that I would be moving to NC. I would
> like very much to meet up with some adults with SB if there are any on
> this list. I am 37 years old. Been living in Budapest Hungary for the
> last 8yrs. Will be in PA for the summer but should be in the
> Rutherfordton area by late summer. I see there is a group from
> Asheville. Are their any adults with SB involved in the group? If not
> I would be more than happy to be a mentor or something to any one that
> would like one. Or just be a friend to someone
>
> Blessings
> Christine
>

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