At Fri, 4 Apr 2003, I and J wrote:
>
>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.