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.

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I had adhesions for 20 Years before detection

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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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