quilt story

From: Karla (ifirgit@new.rr.com)
Sat Nov 3 13:17:02 2001


I have updated my story on the quilt. I am going to post it here because I think there are a lot of people out there that if they don't watch out will end up in my shoes. I pray that they don't. I pray each day that an ending for my pain will come. I pray even harder that noone goes through what I have been through and continue to go through. I am down to the end now. Either this doctor does something or its over....I accept my fate. I can't say I will welcome it with open arms, because for the first time things are going good for me.....I love again. But know that I will not go through this alone anymore.

Love, Karla

--
Karla's quilt story
Since 1991 I have had 26 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.

<P> 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.

<P>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.

<P> 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.

<P>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 effect my kidneys and I have extremely uncontrollable hypertension.

<P>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.

<P>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!

<P>UPDATE 04/18/2000

<P>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. Afterall, 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.

<P>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.

<P>Update 06/13/2000

<P>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.

<P>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.

<P>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 tracheostomy. 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.

<p> 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!

<p> 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.

<p>Update 05/15/01 A lot has happened since my last update. Unfortunately nothing good. With the death of my four month old grandson in March everything changed. I had to cancel my surgery which had been scheduled for the beginning of April. My daughter and her children had to come first. They were not able to reschedule the surgery until July 30th. We decided that a trip to Florida would be good for all of us so we planned to leave on April 10th. In the end of March I started feeling really punk...signs I knew only too well. A trip to the doctor put me into the hospital where I again had a urinary infection that had traveled into the blood. About four days before we were scheduled to leave I was told that I would not be able to go on the trip...due to the need to treat the new bacteria. That was of course a real downer. My daughter and her girls went on to Florida (my sister and family were going too). I was however able to join them on Easter Sunday....what a blessing! The trip was absolutely wonderful....I felt great until the last day or so. When I went in for my appointment the day after we returned I told my doctor I felt something was brewing, but since I had no "symptoms" he did nothing. Two days later I was sicker than a dog....it hurt to put my foot on the gas pedal to drive to the hospital. Of course I was admitted. When the doctor saw me the next morning (I had gone in through the ER)he wanted to know what was going on....like I had done something wrong. He was quite mean. The next morning he came in and apologized up one side and down the other. He scheduled me for a central line placement for IV access and that is about the last thing I remember. I don't remember getting the line placed even though I was not sedated. I didn't even know which doctor did it. Turns out that my blood pressure crashed and that my kidneys had gone into failure. From what I had been told my blood pressure had dropped to 60/30.....a far cry my very high blood pressure. The doctor called my family and told them he didn't know if I was going to make it...that they had to call all my family. The next day they were told that he felt I was going to make it...but it is only a matter of time before it happens again. (At my last appointment he had discussed his not wanting me to go through with the surgery...feeling I would not make it through.) I spent another ten days in the hospital only to go home for two days and then back again for another five. I am scared. I don't want to have this surgery and die...but it is my only hope. If they do not take care of the problems, of which it is going to take two surgeries to get to the real problem, I will die from one of these kidney shutdowns. The doctor has stated that I am not a candidate for dialysis...I don't know why...maybe the fact that I have no bladder. I just know that I have a beautiful family...and I want to see them for a long time. I have said for a long time that I am ready for the Lord to take me...and that still is true, but it doesn't mean I am not going to fight.

Update (November 3, 2001) I underwent surgery on July 30th to place the tissue expanders that were needed as a part of rebuilding my new abdomen. From the point I was discharged I knew something wasn't right....I had so much pain. I had been told that I would have to live in Chicago for six weeks after the surgery. I went home two days after....I don't really know why the change. About a week after the surgery I was hospitalized at home. Initially they thought the wound was infected, but it ended up just being another case of urosepsis. I received antibiotic treatment and went home only to return a week later. My incision was indeed infected. I was kept in the hospital until the day of my appointment in Chicago. My doctor told me he wanted to give it two more weeks before he advanced to the next procedure so I returned home. Within the week I was back in the hospital in so much pain I couldn't even move my arm. Calls were made to my physician and I was given the first available appointment...which was several days later. Again I stayed in the hospital until the morning of my appointment and then I got in the car and drove to Chicago. I was nuts...but I had to get there. When the doctor saw me he immediately scheduled me for emergency surgery to remove the tissue expander. The pain had been so intense prior to the surgery that it felt like I had NO pain after. I was told that I will never be able have any foreign materials placed in my abdomen. My body just continues to reject them...even the mesh that they use for hernia repair.

I have been back down to Chicago for checkups and everything was going okay. I was given a date of January 30th for a "patch-up" job as my doctor called it. He was only going to be able to go in and repair the hernias using muscles from my thighs. The urologist would do the urinary diversion to try and end the problems with my urostomy and my kidneys. He wanted to review my records to see what had been done in the past and what he could do now.

I went home. Since that time (about a month) I have been hospitalized two more times...all for my kidneys. When I went for a follow-up visit to the latest hospitalization my doctor noticed an area of my incision had opened. He, himself, got on the phone to my doctors in Chicago and made the appointment for me. Once again, I flew down to Chicago. I went in to see the doctor, but was told that my blood pressure was extremely high. I think they took my bp at least ten times that morning. Then my surgeon came in...looked at the incision and said it was okay. However, he told me that the urologist was not willing to do the surgery. That was like a kick in the stomach and talk about making your blood pressure worse. I was sent over to see my internal medicine specialist who after about five hours of watching my blood pressure admitted me to the hospital. My pressure was around 220/140. I asked to speak with my surgeon's nurse to have her explain the significance of what the urologist had said. She told me that after reviewing my records he felt that he couldn't make any improvements so he wasn't going to do it. My surgeon was going talk with him one more time, but they doubted he would change his mind. She said that if the urologist wouldn't participate my surgeon would not do the surgery. All I could do was cry. Once again, some ignorant medical person was making a decision for me and wasn't giving me any say. I took a step backwards that day. I got on the phone and placed a call to my old urologist's office and made an appointment. If I am to have a chance at living I need to go back to him. My surgeon has long ago retired so I feel better about that....but will my urologist help out? My life is in his hands now. I pray to God that he has them opened. I am too tired to keep flying all over the country in search of appropriate medical care. If he doesn't help me nobody will.


Enter keywords:
Returns per screen: Require all keywords: