*I had adhesions for 20 Years before detection
*Diagnosed on November 9, 1999
*I live in Marinette, Wisconsin USA
*You can contact me at email@example.com
Since 1991 I have had 26 abdominal surgeriesand
at this time I am in desperate need of yet another one. This is not a surgery
that I can avoid. It is not a surgery to lyses my adhesions. It is a surgery
to try and restore some sort of abdominal wall.....since I have none.
At the age of 7, I underwent surgery for
an appendicitis and again in 1978 I had abdominal surgery....they
thought that I would need a hysterectomy and being only 22 years old I
was scared to death. I was given a reprieve from the hysterectomy when
they found only fibroids on my uterus. I also suffered from polycystic
ovary disease. In 1987 I did have that hysterectomy, having been told that
my uterus was double the normal size. I just remember the severe pain that
I had and until joining this group wondered if the hysterectomy was even
necessary. (Thru IAS I have now learned that yes it was.) I was very blessed
to have been able to carry to full term one beautiful daughter despite
having been told that I would be unable to bear children.
Since that time, life has become a sheer hell.
In 1991 I had bladder augmentation surgery and a second one yet that year
when the first was unsuccessful. I have since discovered that this original
bladder surgery could have been avoided. My bladder problems were actually
caused by a bladder that was being pinched off by adhesions. That was the
start of it all.
I live in hell waiting to find peace
which will only come through my death!
Since that time, all my urological follow-up
surgeries sent me to hell and back..and most of the surgeries were
not completed by skilled surgeons who were competent to deal with post
surgical adhesions, so they just kept cutting away until I was left without
a urinary bladder, uterers encased in adhesions and eventually dysfunctional
kidneys which will eventually kill me as nothing is reversible nor is there
any known medical intervention available for me now!
Since that time I have had surgery after surgery for multiple
hernia repairs, removal of my bladder, urostomy revisions, bowel resections...you
name it. This all started at a hospital which was supposedly one of the
best around. I have gone to Froedtert Memorial Hospital in Milwaukee, the
University of Wisconsin in Madison, Marshfield Clinic, Mayo Clinic, Lahey
Clinic in Boston, and my last ditch effort in October 99 was to Johns Hopkins
in Baltimore. Recently I have again sought the care of a recommended physician
at the U.W. of Madison and have again been rejected. I have seen more doctors
than I ever care to think about. I question why I have allowed one doctor
to cut me open 26 times...and even considered allowing him to do it one
I thought that I had found my answers in Baltimore....only to
come home and find out that they told my doctor that the surgery I need
will kill me and that they weren't willing to get involved. While I was
there I developed yet another hernia...less than 2 months after having
it repaired. At this point it looks like I am 9 months pregnant on one
side and I am unable to maintain a urostomy appliance on my stoma so that
I have constant leakage of urine...a situation that has made me basically
housebound - afraid to be around other people. It has also begun to affect
my kidneys and I have extremely uncontrollable hypertension.
I am in a no-win situation...if I have surgery they say I will
die.. if I don't they say I will die. I am willing to take that chance
so that I can return some sense of normalcy to my life and enjoy my 2 beautiful
granddaughters. I have known that I had adhesions for a long time...never
knowing that it was really a condition. I have actually had a CT that showed
a huge mass of adhesions...yet no doctor has really said much about them...they
just hand out the pain meds and say deal with it. It wasn't until I was
contacted by Bev this past year that I began to gain some insight into
this disease and I thank God for the day that I first met her.
Right now I am very scared...I go from wanting God to just take me
to be with him, to wanting to fight...no matter what it takes. I hope that
the fight in me wins!
Bev and I have recently made a couple of trips to the University
of Chicago. I had remembered that a couple of my earlier surgeries had
been performed by a surgeon whom was now located at the U. of Chicago.
As soon as I remembered this, I made multiple attempts at phoning him...all
unsuccessful. At that point I typed up a letter to him and faxed it that
same day. He followed up my fax with a phone call the next day and told
me that he would be unable to help me out. He did indicate that he would
try to find someone else that could. A couple days later he phoned Bev
and told her that although he didn't think he would be able to find someone
to help me....he did. Dr. Lawrence Zachary, the chief of reconstructive
surgery, had accepted the challenge and would see me the next week. When
Bev and I made our first visit to see him I was waiting for the first shoe
to fall and him to say that no he could not deal with my case. After all,
everyone else had been giving me this story. But, no that did not happen.
I was asked to return the following week to meet with a urologist and when
I did I was told that he and another specialist would be unable to help
me. However, they did indicate that there was a reconstructive urologist
that would be able to help.
At this time I am waiting for the three doctors; the reconstructive
surgeon, the reconstructive urologist and the general surgeon to have their
meeting where they will set the date for my surgery. You can bet that I
will be on them until I have an actual date. Once I have sufficiently recovered
I will be going on to see Dr. Reich and Dr. Redan to deal with my adhesions.
I have returned to Chicago yet one more time...this time to see the
reconstructive urologist. Dr. Zachary wanted him to see me in person prior
to my surgery so that he could have a plan formulated ahead of time as
to what his procedure would be. While this wait has been quite frustrating
it is understandable and his deep concern is very much appreciated. They
were unable to come up with a surgery date in June...at one point I was
very concerned....my Medicare was running out in the end of June (I have
since been found disabled again for Social Security so this is not an issue).
I have been given a surgery date of July 12th. Since I have been told by
several doctors that this surgery would kill me I have been asked by many
people if I am afraid. My answer to that is NO! I can accept death and
am indeed ready should the good Lord call me. I am, however, afraid to
continue living my life the way I am.
My pain is unbearable. But, I have learned that the best painkiller
out there is this group. I gain strength from the other members of this
group and I pray that they, in return, can gain strength from me. Together
we can fight this disease so that no others shall die.
On July 12th I was taken to surgery at the University
of Chicago, Weiss Memorial Hospital. I was given the drug Versed to help
me relax. At that time I went into cardiac and respiratory arrest. I was
given CPR and placed on a respirator. Other than for the CPR I was alert
for the entire procedure....even the tracheotomy. They had a very difficult
time finding an airway. I remained on the respirator for about two days.
I since have come home and am awaiting the rescheduling of my surgery.
It has subsequently been learned that I had an abnormal stress test two
weeks prior to the surgery and my physician failed to notify anyone of
the results. Today I underwent a right and left heart catherization. Everything
appears to be okay, aside from some "stiffness" due to my hypertension
and some mildly increased pressure on the right side. This is all things
that I will have to look into further. I will be calling my surgeon in
My primary care physician has told me that those increased pressures
on the right side of my heart are mild pulmonary hypertension...another
disease to which there is no cure and is usually fatal. I attribute this
to having been on the phenfen....thanks to that doctor in Boston who never
bothered to follow-up on his plans for surgery. I knew that I had the valve
leakage and often suspected the pulmonary hypertension, but my cardiologists
never really looked into it. Yesterday I received a phone call from the
surgeon in Chicago. They want me down there on Monday to see a pulmonologist.
They will do some tests to see if I am able to go through surgery again.
WHY??????? or should it be WHY ME???? Don't they understand that no matter
what I cannot continue to live my life the way it is? If I die during surgery...then
so be it. At least it will be me going down fighting!
Update - 02/20/01
It has been a while since I have updated this.
A lot has transpired since then. I was set up with a team of ten doctors
who met and determined that a surgeon from up here should perform my surgery.
I had very mixed emotions when I was told. I went from crying because I
felt that I was losing my last chance at life to laughing because I already
knew that no doctor in this state would touch me....yet alone a doctor
in this immediate area. The doctor that gave me the word did tell me that
should they not find someone they would perform some type of surgery. They
informed me that if after two weeks I hadn't heard from them to call, which
I did, only to hear nothing from them for over a month. In January I received
a phone call telling me that they would do the first in a series of surgeries
on April 2nd - a very long wait when you are in extreme pain. Now I wait....trying
to establish pain control so that I do not suffer another hypertensive
crisis which I had on February 11th. I have finally learned to stand up
to the doctor and demand that they give me the appropriate treatment. I
have told them that I am fully aware of my rights to adequate pain treatment......a
big step for me.
Update; July 30th, 2001 (Beverly
updating from here on)
Karla started the first phase of four surgeries’ she will need in her
attempts to reverse the damage done in all 26 prior surgeries on her! Karla
had surgery in Chicago University Medical center last Monday. No word has
been received on her condition as I write this. We hold her in our hearts
and our prayers!!
May God be with our friend Karla!!
UPDATE She had a cardiac arrest during surgery
and they had to abort the surgery. To date she continues to suffer.
She is still here with us, in and out of the ICU more frequently now, but
she pushes through, and only God knows how! Karla will not be a candidate
for any surgical intervention from this time on.
Update: January 2002:
Having been cued to the fact that the “Hospital Consent to Procedure
and Operation” form states that all complications of the procedure must
be fully explained to the patient prior to the procedure being completed
on the patient, 99% of ARD sufferers we are aware of did NOT have post
surgical adhesions discussed with them, nor had they ever heard the word
adhesions and none were offered an alternative method of medical intervention
prior to any of their respective surgeries, Deb included!
Update: November 2002
Karla has been trying to make in living on her own, both finacial and
health related isues have forced her to give up her apartment, she has
lost her independence to ARD. Karla is moving into her daughters apartment,
this will not be an easy move for her as she needs rest, and though she
dearly loves her little granddaughters, the loves of her life, Karla is
not well enough to offer them what Karla thinks a grandma should…she is
concerned that her granddaughters will find her disappointing as her daughter
did when growing up under this her illness will be as much of a hinderance
in giving to them as her
Update, February 2003
Karla is in the ICU, once again, in fact she has spent most of her
time there since Christmas of 2002. She is losing weight rapidly now, and
plans are being made to place her in an extended care facility as she is
in need of round the clock intervention due to urosepsis ( infection in
the blood stream due to kidney failure)
Karla is now showing signs of weakening, she is tired, doesn’t eat
and though she tries to smile & laugh, she prefers to sleep! She has
asked me to chronicle her struggles through the use of photos of her days
as they are lived at this time
Though this is hard for me, I will accommodate her wishes. She is still
so determined to do what it takes to spare others from walking her path
of being the victim of poor medical /surgical intervention!
Karla is in a desperate situation, we all know that the last few
attempts at surgery to improve her condition have failed due to a multitude
of complications due to her physical health and her body’s rejection of
foreign objects and substances designed to improve her life expectancy
and comfort and the reluctance of surgeons to work on Karla due to these
difficulties and the very real chance that she might not even survive any
of the surgeries that might be undertaken.
Karla has explained to us how her health is in a very precarious position
now and she is continually suffering from very serious kidney infections
that threaten to shut down her kidneys and cause her death. Karla
is not able to be a candidate for a kidney transplant and her medical condition
precludes her from being able to use dialysis should her kidney’s fail.
The other difficulties arise from her not being able to tolerate a large
number of the antibiotics used to heal these serious kidney infections,
leaving just a very small number which the doctors are reluctant to use,
as this would then leave nothing in reserve should Karla have a major kidney
Her health and spirits are in rapid decline and she is loosing
the will to fight for her right to a quality of care and compassion, which
ALL human society should be entitled to. Currently Karla’s doctor
is reluctant to prescribe the antibiotics that would rid her of this latest
infection, this he says is because there are few options left and there
will be nothing left for him to use should she have a major infection.
points out though, if they don't give her the antibiotics this time, then
perhaps it will be too late and then she will die).
Karla knows her body well, and as fellow adhesions sufferers,
we understand this statement. How often have we been able to predict
a complication or infection because we could “feel” and “sense” that something
wasn’t quite right? Right now, Karla is sensing that something is
not right and she fears that she is heading toward that major kidney infection;
the one that will cause her kidney’s to shut down and ultimately cause
As Karla’s friend right now I am experiencing such a tumble of
strong emotions including anger, desperation, confusion, fear and most
of all a feeling of complete helplessness. I live in Australia!
So many thousand of miles away from this lady who has become so important
to me, and I feel driven to do something to help draw attention to the
frightening and life threatening position she now finds herself in!