[Previous Months][Date Index][Thread Index][Join - Register][Login]
[Message Prev][Message Next][Thread Prev][Thread Next]
[IP] Islet Transplants, Inulin Pumps & Initiative
Hopping back on my "teacher soap box" today. I periodically send out
"newsletters" to our Phila. area "Moms Brunch Bunch", an outreach network
that has now grown to include over 200 families with children with diabetes.
I thought these excerpts from my latest one might be helpful to the ongoing
"thread" about islet transplants. In addition to my words, you can also check
out http://www.jdrf.org/living_w_diabetes/feature/lif052902.php <A HREF="http://www.jdrf.org/living_w_diabetes/feature/lif052902.php">A New
Reality: 8 Successful Transplant Patients</A>, which is the JDRF website link to
a story about eight of the recipients of islet transplants. I have now heard
three of these women speak, & although I share many of the concerns voiced in
the current "ABC news" IP thread, there was no denying that for these
patients, their life today is FAR better than the hell they'd been living,
primarily due to hypoglycemic unawareness, despite the immunosuppressants,
despite the side effects, etc.
(about the JDRF-Phila educational conference April 13th):
Our second speaker was Dr. David Harlan from the NIH. Dr. Harlan offered a
very candid & realistic explanation of the islet transplantation procedure,
and the risks it entails. This is NOT a panacea, nor is it something to be
cavalierly considered, UNLESS one's current life is so severely compromised
by hypoglycemic unawareness & uncontrollable diabetes, that the benefits
outweigh the risks. Interestingly, he also corroborated what I had heard
previously: that the more than 70 patients who have now received islet
transplants are strongly encouraged to maintain a controlled diet to avoid
putting additional strain on their "neophyte" islets. This is most definitely
NOT a "get out of jail free" card.
That said, Dr. Harlan's message to the "masses" was crystal clear: until such
time as islet transplants ARE "ready for prime time", it behooves everyone
who lives with diabetes to do all that they can to optimize their care. Both
he and Dr. Weinzimer advocated insulin pump therapy and frequent blood sugar
monitoring as the ideal way to accomplish this goal. Pump therapy is NOT for
everyone- but it does more closely mimic the normal pancreatic function.
Their approach also echoes my own philosophy: i.e. it is IMPOSSIBLE to
completely avoid high blood sugars, so it is counterproductive to berate
ourselves or our children for those inexplicable highs ( the ones due to food
consumed without insulin are a different story!). The goal is NOT to
eliminate ALL high blood sugars - but rather to be cognizant of them through
frequent testing & to shorten their duration by correcting with a bolus or an
Having recently returned from reviewing JDRF research grants & ongoing
research centers, I can reaffirm my personal belief that, in the absence of a
cure TODAY for our children, funding additional research is essential!
Melissa has been on an ACE inhibitor for 5 years now, & not only are there
studies corroborating its beneficial effect upon the kidneys, but many
researchers are also hailing its apparent comparable effects on other
microvascular areas in the eyes and the heart. The reason there is no cure
YET is comparable to cancer research after all these decades: As my
oncologist told my husband: the more they know, the more they realize how
much more they need to know. However, that said, each "piece of the puzzle"
serves to ameliorate, or even resolve, an existing concern.
Also, a few comments on the Glucowatch, which was reviewed at our
educational conference April 13th, and which became commercially available
for $600 on the 15th of April. My personal view is that it is a prototype,
analogous to my husband's first "portable" company phone in 1987 which
weighed 10 lbs, was carried in a small suitcase, and cost $1800. If you've
seen pictures of the first pumps or the first glucose meters, the comparison
is even more significant. I also understand "version 2" is already being
tested in Europe.
Lastly, for those of us who worry about another child being diagnosed,
this week's New England Journal of Medicine reported the impressive success
that Dr. Kevan Herold (who is Melissa's endocrinologist in NYC) has had with
his early intervention clinical trial in preserving residual beta cells. You
can read about one of the participants in this link: <A HREF="http://www.ksl.com/dump/news/cc/feb00/diabetes.htm">Utah News from KSL-TV,
Salt Lake City, Utah</A> http://www.ksl.com/dump/news/cc/feb00/diabetes.htm .
This story is actually a year old, but I understand that additional
participants in the past year have been equally successful & that a newer
phase of the study is now underway. <A HREF="http://www.jdrf.org/research/clinicaltrials/clinicaltrial4.php">How To Join A Clinical Trial</A>
http://www.jdrf.org/research/clinicaltrials/clinicaltrial4.php is the link to
Renee (Melissa's pump mom)
for HELP or to subscribe/unsubscribe, contact: HELP@insulin-pumpers.org
send a DONATION http://www.Insulin-Pumpers.org/donate.shtml