ISLET DECISION
Hi all, It has been some time since I posted
(hjad successful vitrectomy surgery to repair a
torn/detached retina and will have follow-up surgery in the
fall to fix a cataract caused by the vitrectomy). But
that isn’t the topic for this post.<br
been busy trying to get into the islet cell transplant
research studies being done. After intensive preliminary
tests (they took 20 tubes of blood yesterday) the
National Institute of Health (NIH) has told me that
physically I am an excellent candidate and are now awaiting
my decision on whether or not I want to get the
transplants and be in the study for the next 3 years. This is
not the easy decision it appears.<br
talking to the doctors leading the research (Dr. Harlan
and Dr. Hirshberg) I now know what the newspaper
reports don’t tell you - this is a risky procedure. Out
of the 6 patients getting transplants (done in 2
seperate operations) one had extensive internal bleeding
and another nearly died from a blood clot caused by
getting the cells into the liver. Once transplanted you
must take drugs for the rest of your life to prevent
rejection of the cells. These drugs make you susceptible to
all diseases and infections, are very expensive and
are only covered while you are in the study (3
years). Once on them you cannot drink water that has not
been filtered to remove a certain bacteria often found
in tap and many bottled waters nor can you eat
uncooked food such as salad or fruit in restaurants and
you must avoid mold and anyone (including family
members) who is sick (i.e. - cannot go into crowded
theaters, sporting events etc). In addition the drugs cause
mouth sores which go away in some people but in others
do not. The drugs also are hard on the kidneys which
have already taken a beating from 29 years of
diabetes. If a transplant was needed it would be difficult
to find a suitable donor since my immune system
might be sensitized to foreign tissue.<br
trying to weigh these risks against those caused by
diabetes. Would those of you who have had reasonable
control and been a Type 1 diabetic for 25+ years please
let me know what your experience has been with
complications.<br
much real life information as possible to make this
decision.<br
April 6th, 2005 at 10:03 am
I’m 16 years with IDDM and no comps.<br
honest, I wouldn’t do it yet. Not ’til they got got it
down pat and you didn’t have to live like someone with
AIDS or Like Michael Jackson <G>.<br
be true that you’d reject the cells and have to go
back to diabetes anyway, but for the three years, it
sounds like your bod would be a chemistry
set.<br
there with complications and pain, nothing anyone would
tell you would make a lick of difference. Right now
though, if you have many complications and are in chronic
pain, and that lifestyle sounds OK to you, three years
of a break from ‘betes would sound pretty good
huh?<br
wait a bit.<br
April 9th, 2005 at 2:49 pm
Thanks for your thoughts Jenny. Much
appreciated.<br
patients may be “cured” forever as long as they can get
the drugs needed to prevent rejection. Not many have
had the islet procedure done but pancreas transplants
have been going on for awhile. I’ll try to contact
some of those folks too to see what the trade-offs
have been for them.<br
April 10th, 2005 at 4:25 pm
Thanks for your thoughts Jenny. Much
appreciated.<br
patients may be “cured” forever as long as they can get
the drugs needed to prevent rejection. Not many have
had the islet procedure done but pancreas transplants
have been going on for awhile. I’ll try to contact
some of those folks too to see what the trade-offs
have been for them.<br