thank you beverly and all
From: I and J (ipnewwave@aol.com)
Fri Apr 4 20:54:04 2003
dear beverly,
thank you for your concern . we must also thank the helpful and
compassionate people on the message board.the reason i write " we '' is
simply because this is irene's husband joe.i am totally amazed at the
concern and responses that my wife has recieved. irene has posted a few
times on the message board after we surprisingly came across it.
unfortunately she has a difficult time sitting for any extended period
which limits her research and greater participation. as for myself this
site has given me a greater and much more indepth understanding of ARD .
this wonderful place has relieved so much of my own anxiety due to
irene's condition , and by the way it has also forced me to finally step
into the computer age. irene right now is finally getting a chance to
laugh a little at me ,watching me type an e-mail with my one finger. so
unfortunately writing this will take awhile.irene cannot wait to call my
office and inform my secretary and associates that i am finally coming
out of the stone age. i am sure i will get some ribbing this coming
week. but i will still stick to my guns and not get an e- mail address,
i will sneakly use irene's.
beverly over the last 19yrs. irene has been through the mill with
doctors and hospitals. irene gave birth to our second child 21yrs.
ago.both of our children had to be delivered by way of c-section.
approximately 2yrs later irene developed a pain in the right side of her
abdomin. of course we went from dr. to dr.for one year until an
exploratory surgery was performed. the findings was that she had a
tumor (benign thank god)on her liver. it was removed and the dr.
thought that this was causing her pain. well he was wrong! two months
later her pain was back.the gastro drs. decided she needed an ERCP .now
they could'nt get into her bile ducts,and they seemed to damage
something. they had to close down her pancreas. she was totally yellow
even her eyes.these accomplished drs. decided to send us to the man
whom either invented or was one of the pioneers of ERCP. so we flew
from n.y. to wisconsin and the doctor had to attempt this twice.in his
second attempt he managed to locate the ducts and stated that he had to
stretch them. irene was also told that she had to stay on a high fiber
diet.needless to say as i know yourself and every adhesion sufferer are
aware that irene was besides pain suffering with bouts of nauseum and
constipation.2 months later the pain was back . irene at this time was
approx. 27 yrs. old .it took until irene was 34yrs. old and she could
convince a surgeon to remove her galbladder she remained in pain.after
an open surgery and the removal of the galblader irene was pain
free.irene insisted she was correct it was the gallbladder the whole
time. we had a wonderful life or so we thought for the next seven yrs.
only once in awhile since that surgery irene would make what we both
thought was acrazy statement,she would tell me that she was having the
same gallbladder pain . we both figured it was just surgery
pain.especially since the dr. informed us that the gallbladder was
grossly diseased. unbelievable to us 7yrs. later the pain was worse
than ever. irene was now unable to eat ,she could'nt hold food down
most of the time and had bouts of (excuse my expression) diahrea.for the
next 1.5 to 2yrs. it was test after test and dr. after dr. all with
negative results. supposedly living in N.Y.with all the great drs.
availibility to hospitals and the latest and greatest technology i
thought for sure we would have an diagnosis. the drs. i felt were
insinuating to me that maybe irene had a psychological problem and i
should look into it.well i know my wife since we were kids we grew up
together and i really had to keep my emotions in check for one or two of
these drs. really deserved a good punch in the nose.finally after not
being able to take the waiting of test result after test result and
everything negative and especially literally waiting by the phone at
times.i decided to get in touch with two dr. friends of mine out of
town.my dr. friend asked me of irene's symptoms i told him and as a
matter of fact told me that she must have adhesions,the drs. told me to
bring her up the next day. irene was upstairs in bed and she did'nt
even know i made this call to my friends. after i hung up the phone i
actually broke down crying after 24 yrs. of marriage i thought my irene
was dying of some kind of horrible disease. i had a glimmer of hope
after speaking to this great dr.then i questioned myself and this drs.
telephone diagnosis. i remember asking myself how could this
dr.(surgeon)from a small town diagnois over the telephone without ever
seeing her? i could'nt understand this . N.Y. was supposed to have the
best! then i ran upstairs irene must have thought i was crazy (SHE
ALWAYS KNEW I WAS BUT I WAS JUST CRAZY ABOUT HER!) i told her jubilently
" you have adhesions! " hell i did'nt even know what adhesions were!. we
took all of her test results out and her post-operative reports. for
some reason i started to read the report of the gallbladder surgery and
there it was "EXTENSIVE ADHESIONS". this was supposed to be laparscopic
surgery but it had to be abandoned due to scar tissue.why did'nt some
one tell us? why when irene inquired about scar tissue was it dismissed?
two days later irene was in the hospital and ready for an open
exploratory surgery.the surgeon did not want to give irene another scar
so he went over the same scar that she endured from the gallbladder
surgery. again dense adhesions. adhesions were removed from her small
intestine , colon ,duodenum,hepatic area the surgeon also stated he had
to pull her right kidney off of her ribs. a stent was placed in her
right ureter since she has a double one there and scar tissue was found
on it.about an hour later irene was out of surgery .the pain she had was
from the stent which she stated was the worst pain of all. 3 weeks
later the stent was removed. irene was feeling great.
over the next year and a half we were making up for lost time.the family
was doing great. then out of nowhere that "evil " pain (putting it
mildly) was back.fortunately this time it was only in the right
flank.this was this past october . so off to the
urologist,nephrologist, family physician,and test and test and
................ everything negative again. hospitilized november and
january. still more tests. now we're told pain management.
so back to my dr. friends out of town.our surgeon friend retired but
came to have associates run some more tests. he is convinced the scar
tissue is back ,but primarily on the kidney since irene no longer has
the right front abdominal pain.i told him that i did not want irene on
pain management .maybe i do'nt understand it but it means narcotics to
me and with the pain killers now we have no quality of life.the dr. gave
us some comfort in that he did not believe in this theory for irene's
case either. especially long term. he insisted that with his help we
would find some dr. who could deal with this ARD.i then told the doctor
that i felt like i was imposing on him. what a great guy he told me not
to be ridiculos. i felt a little embarrased to ask but i told him about
this great web site out there ADHESIONS .ORG and this dr. named reich.
i really hated asking one dr. about another. i could'nt believe his
response at first he asked who ? like he did'nt understand me or hear
me. then he said that's our guy! he apologized for not thinking of
dr.harry reich himself.
this family and espescially myself as a husband and a father am just
realizing what a strain on our emotions this ARD is having on us all.
it's been along battle, in which we really for the first 17yrs. did'nt
know we were fighting. amazing huh?
beverly i want to thank you again and everyone at ADHESIONS .ORG for
taking such an interest in helping irene.you guy's have really helped
with empowering our family and help in lifting the fear and anxiety we
all have.
please if anyone has any advice or can give us more insight we really
would appreciate it.
THANK YOU irene's huband joe
p.s. this really took a long time. not bad for inputting with one
finger. also sorry this is sooo long. i think i might even try to post
it.