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 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.
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. 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.
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 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.
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 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. Update: Jan 3, 2002 Well, I made a quick trip...wasted would be more the word, down to see my original urologist. He told me that he no longer performs this type of surgery...that when the new chief of staff arrived they each had to pick specialization areas and his was in kidney stones. Something tells me that I should be questioning why he doesn't do reconstructive surgery anymore. Anyway, he told me that he didn't believe that the doctor now handling this type surgery would be willing to touch me. He did request that my records be sent to him so that he could speak with the doctor. Well, its been a couple of months now and despite numerous phone calls on my part, I have heard nothing. I guess I have my answer. I now turn my life to God totally. I give up that control. While it angers me to think how any human being could leave me in this situation. I can live with the idea of dying because they can't repair the problem effecting my kidneys, but I cannot comprehend them leaving me to lie in leaking urine because the hernia I have I have is so huge that a seal to the urostomy bag is impossible. It is so constant..so gross...so inhumane. How can they allow this?
Update May 29, 2002
There have been very few changes in my condition. I am now having more and more kidney related problems. I have numerous kidney stones in both kidneys and the pain from that is severe. The doctors do not want to perform lithotripsy for fear of the particles from the stones blocking the flow from my ureters. They would like to perform surgery to "suck" them out of my kidneys through each side of my back. Given the problems I have with infection I have pretty much accepted not doing anything about the stones although my doctor says something must be done. There is more and more evidence that the kidney function is deteriorating. I have more and more days where there is absolutely no output. I am not up to fighting anymore. I am ready for whatever God puts on my plate
.as long as it means my suffering will end soon. I put total trust in him. People ask me how I deal with it
and to me it is simple. I question nothing. When things get really tough I close my eyes and I picture myself sitting on the Lord's lap. He hugs me and my troubles are taken away from me. Through this visualization I know that I do not have to worry. Too often we spend our time worrying, and perhaps rightfully so
.but if we could only realize that we can turn our problems over to God and that our pain will be carried by him. Let go and let God.
Update: 03/17/2003
It has been almost an entire year since I have updated. Because of the chronic urosepsis that I was suffering, my urologist ended up placing first a nephrostomy tube into my right kidney, then a month later one into my left kidney when they discovered that I had a blockage of the urine flow from my left kidney. They also placed stents in each kidney which were meant to hold each kidney open and free from blockage. I don't know that any of this ever worked. My incidence of urosepsis became more and more frequent. The pain I suffered changed from being stomach pain, to intense back pain that revolved around both nephrostomies. It isn't that the pain was gone, but there was once again a site whose pain was more intense than that of my abdomen. In January of this year the doctors decided that these nephrostomy tubes into my back, along with the permanent catheter that allowed instant I.V. and blood access were just three more openings for infections to breed and enter my body in. But, it was the third episode of urosepsis in 2003 (the entire month of February) that proved to them that they had to make some decisions. In January of this year, I presented with again another case of urosepsis. This one was different. It was not really a build up of symptoms, but one of sudden onset. One evening I began to have rigors and was caught in the bath unable to get out. My fevers were in the 103 - 104 range. When the problem remained in the morning I was transported to our local emergency room and immediately admitted to the hospital. From there I was transferred to ICU and the next thing I remember was signing to have a respirator placed to maintain my life. Other than contacts with family and some wild, absurd dreams caused by the medication that maintained my coma, I do not recall much. I was diagnosed with a number of new conditions, the most concerning being ARDS or Acute Respiratory Distress Syndrome.
Adult (or Acute) Respiratory Distress Syndrome (ARDS) is a medical condition which prevents the normal breathing process from taking place. ARDS occurs when there is severe inflammation in both lungs resulting in an inability of the lungs to function properly. ARDS is a devastating, often fatal, inflammatory lung condition that usually occurs in conjunction with catastrophic medical conditions, such as pneumonia, shock, sepsis (or severe infection throughout the body, sometimes also referred to as systemic infection, and may include or also be called a blood or blood-borne infection), and trauma. It is a form of sudden and often severe lung failure. Lung failure means that the lungs can no longer carry out their normal function of getting oxygen into the blood and removing carbon dioxide from the body. You can learn more about ARDS (and you should, since it could happen to anyone of you following an infection or surgery)by visiting: www.ards.org
I was in a coma and on life support for nine days. There was no sign of my being able to maintain myself without the life-support, but it was to the point where the doctor's felt the need to try. The doctors were able to successfully remove me from the respirator and I made a rapid recovery and found myself home four days after removal. Unforunately, ten days later I found myself in the same situation. Once again I was suffering from septicemia. Once again it was through my entire blood system. And yes, once again I was suffering with the shutdown of my major, vital organs. This time, my doctor brought in the "miracle" drug, xigris. This drug, with its large price tag was my life saver. All shutdowns turned themselves around. This is when my nephrostomy tubes were removed. I find myself fighting to maintain my life. I must fight to stay out of a nursing home, let alone fight just to say alive.
I then learned that one of the bacteria that has been lingering in my body was fungal. The doctors explained that I did not want to become septic from a fungal bacteria. It would be much worse than my experience when I ended up on the respirator. I was placed on a drug called amphoteracin (sp?). The nurses call it amphoterrible. I learned very quickly why. This drug causes a large number of side effects. Things like pain, fevers, vomiting, allergic type reactions...just to name a few. My first two days on the drug were absolutely awful. The doctor had to give me six more drugs just to combat the effects of one. Basically I was drugged up with demerol/visterol, which was in addition to my regular morphine, so that I could sleep through the side effects. After two weeks on this drug they decided that I also needed to have it poured directly into my urostomy. This procedure was very difficult to manage and it just added to my agony. I was discharged home to have home nursing manage the situation. Unfortunately, within a few days I became extremely dehydrated as I was unable to keep down any fluid or food. I was rehospitalized in critical condition once again. My kidneys were again shutting down. Fortunately, I convinced my doctor that the amphoteracin was the problem. I proved to be right. Unfortunately, I was extremely devastated when I was informed upon admission that I would be placed in a nursing home so that my condition could be better managed there. Deep depression set in immediately. But, this person is a fighter. I was not about to go to a nursing home. To make it short, I am home now. Fighting to avoid each and every infection and taking control of the direction of my medical care. I don't care if I have to call my doctor every day. I will if I feel that I need to. I need to take care of me because nobody else will. Once again I come to terms with the fact that I am dying. It is even closer now. Each infection has brought organ failure. There are no more answers. But, it is not too late for you. READ, READ, READ everything that you can possibly find and make a good decision for you.
All I can say to each and every one of you is that you do the same. You have to place yourself first. Do what is best for you. Just know that surgery is not always the answer. Do your research....find the right answers. When you feel that you have found something that you are comfortable with...go get it. Don't worry about money or what someone else is going to say. What will they say when you are no longer around?? It will be too late for them to say a thing.
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 discussions 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 the 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 grandma 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
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Adhesions Quilt
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The Purpose of this quilt is to demonstrate
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this life altering and crippling disease of women
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