Karla Nygren’s ARD Story 
Karla Nygren
*I had adhesions for 20 Years before detection
*Diagnosed on November 9, 1999
*I live in Marinette, Wisconsin USA
*You can contact me at ifirgit@new.rr.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. 
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! 

I live in hell waiting to find peace which will only come through my death!

 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 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! 

UPDATE 04/18/2000 
 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. 

Update 06/13/2000
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. 

Update 08/01/2000
 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 Chicago tomorrow. 

Update (09/11/00) 
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!

Dear IAS Friends,
 One of our very special friends is in a frightening and desperate position.  Her story is a terrifying example of the dangers we face as sufferers of Adhesions Related Disorders, the number of surgeries she has endured numbers in excess of fifty and her life now literally hangs in the balance.

 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 infection.

 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. (Karla 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 her death.

 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!

Update: (07/02/04...Happy Birthday Gram's Girl Bryttnee!!) Hard to believe that I haven't updated in over a year, but it has been one awful year. My episodes of sepsis and septic shock are chronic. I cannot stay out of the hospital for more than three days. My Medicare ran out months ago. I finally had a biopsy done in the end of April. This showed that both of my kidneys were significantly damaged...some parts quite severely. If nothing is done I will not make it much longer. My weight has continued to drop. I have infections in my body that start before the antibiotics from the prior infection are terminated. Apparently, the doctors do believe that I can live on dialysis..a change in thought from the last few years. So, on May 19th, 2004, my right kidney was removed. The doctors were actually somewhat shocked because the kidney ended up being virtually non-functioning. They had known it was damaged, but nothing pointed to it not functioning. We had numerous discussion! s as to whether they would remove one kidney or both, but both doctor and I felt that we needed to give one kidney a chance and possibly avoid dialysis. I have to admit, almost immediately following the surgery, I wished that they had removed both. Something just felt wrong. Within two weeks I suffered another infection along with a blockage of my remaining kidney. The urologist did put in a stent and it was decided that we would still give it more time.
Unfortunately, another infection came and my condition continues to deteriorate. I have no energy. I have no fight. The doctors all see that and know that I must have the other kidney removed. So, as of this minute, I have just undergone vein mapping so that they might put an av fistula in for dialysis. As soon as that is done, this coming week, I will undergo the removal of my remaining kidney. This is very drastic treatment. Almost unheard of. My doctor told me that I wasn't a one in a million patient. He said that I'm a one in t! he world patient. No one has gone through what I have gone through so noone knows what to do. I did go to the Mayo Clinic in March/April for a second opinion. At first they thought the suggestion of removing my kidneys was ludicrous. That was until I became critically ill on their doorstep. I actually stepped foot into their emergency room area just as the septic shock set in. I spent more than a week in intensive care. They were able to see exactly what my life had become and by the end of my stay totally agreed that the removal of my kidneys was the only option. So, here I am. Waiting. I will update to let everyone know just how I go through this surgery and whether my life is changed. Please pray for me. God Bless! Karla How do I begin to tell you where I stand right now? Please do not be disappointed in me! On July 28th, 2004 (the day before my birthday) I had my remaining kidney removed. You cannot begin to understand how totally incredible it was to wake up in the morning actually feeling "good". This was not a matter of my just wanting to be better. I actually felt good and so grateful to be alive. My first week of dialysis made me feel so alive, so ready to take on the world. That week was short-lived however. The second week brought about another episode of sepsis. It wasn't even a major episode, but it certainly has done a number on me. Once again I was subjected to days of antibiotics. The infection went away, but I never felt good again. I am now into my sixth or seventh week of dialysis. I was
just discharged from the hospital having pneumonia. Apparently I still had it from my hospitalization in June-July. I cannot deal with dialysis anymore. Every day I vomit. I have lost more and more weight. I have lost all my energy to fight. How do you tell your child that its okay to die? I cannot spend the time that I would like with my grandchildren...the lights of my life. I want them to remember me as a grandma who did everything with them, not a gr! andma too sick to spend the time. I've been here before, but never quite like this. Nothing "feels" right. Maybe I will get through this...it is in God's hands. Just know that I pray for the best for all of you. God Bless! Karla 

“Unsung Hero in the World of ARD!”
Certificate of Special Recognition
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