My story - Updated
From: International Adhesions Society (tracy.joslin@adhesions.org)
Mon Sep 20 20:09:51 2004
From: adhesions@adhesions.org [mailto:adhesions@adhesions.org]On Behalf Of K
Sent: Friday, September 17, 2004 3:37 AM
Subject: My story - Updated
It has been a long time since I have posted my story.
It is now updated and I hope will be used to educate
yourselves so that you can avoid this life.
Karla J Nygren
moderator: Due to the length of the story from the quilt,
we could not put the entire message onto the
message board..... please follow this link to
read the rest of Karla's story. Karla's insight into ARD
and the impact to her life is a story you need to read.
Karla, thank you for being able to update your story, you
are always in our thoughts.
http://www.obgyn.net./cfm/adhesionsdisplay.cfm
You can then search on Karla's name.
__________________________________________________
I had adhesions for 20 Years before detection
--
__________________________________________________
Diagnosed on November 9, 1999
I have 1 Child
My Birthday is Sunday, July 29
I live in Marinette, Wisconsin USA
Visit my website at http://www.geocities.com/karlasfamily2001
You can contact me at ifirgit@yahoo.com
I am embarassed by the fact that my story on this quilt
is so long. I am sure that it is, by far, the longest on
this quilt. Today, March 17th, 2003, (Most recent update
- 9/17/2004) I am doing another update at the end of my
story. It is so important for you to know MY story....
in its entirety. Believe me when I say that I don't
share every single detail...but to omit my recent history
is to only tell you a part of the adhesions story.
Please take the time to read my entire story. It can
save a life...perhaps your own. Please remember this
story was started several years ago. The numbers and
other information has changed as time has passed. It
begins: Since 1991 I have had 27+ abdominal surgeries
and 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 lyse 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.
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 more time. 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 a
fter 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 a
ppliance 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 effect 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!
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