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Tony's Story    

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I have always felt so guilty about Tony's last weeks on Earth. I wasn't there for him every day, and I wasn't there for him when he died. He was only 35, and he was supposed to come home from the hospital, just like all the other times he'd been hospitalized! If only I had known then what I know now...

After being diabetic for nineteen years, Tony received a kidney/pancreas transplant as a cure for his diabetes and End Stage Renal Disease (kidney failure) resulting from his diabetes. His transplant was in March of 1990. For a year or so he often remarked how well he felt--probably the best he ever remembered feeling since he was diagnosed with diabetes at the age of nine. For the first time in his life, he said he felt normal. He often commented that if he were to lose either organ, he would much rather lose his kidney because he could handle the renal diet much better than the diabetic diet. Five years after his transplant, he got his wish--his kidney began to fail and it was only a matter of time before he would have to begin dialysis treatments again.

Tony went to nursing school to become a Licensed Practical Nurse so that he could become a tech at the local dialysis unit. He said that when he was on dialysis before his transplant, he didn't understand anything about what was going on and he desperately wished for someone to talk to who had been there to help him through it all. He graduated in the spring of 1993, two months after we were married. His health began visibly declining in the second semester (probably due to incredible stress levels) and only through sheer determination was he able to graduate and receive his license. By helping him with his homework and transcribing his audio tapes from class, I became very interested in the field of nursing, myself, and decided that I would attend the next LPN course which began a month after he graduated. The biggest factor in my decision was seeing his failing health and knowing that I knew absolutely nothing about where we were headed. Regrettably, he never got the chance to go to work as a nurse anywhere.

The next five years brought about many trials for our family. Among them were two strokes, several heart attacks, a tracheostomy, a gastric bypass, a life-threatening bowel obstruction, abscesses after each abdominal surgery, ...........and finally an overwhelming infection that took his life. Both of my children were in elementary school and still required a great deal of my attention to try to maintain a level of normalcy for them, and I had just found a job that would not allow me to take off all the days necessary to take Tony to all of his doctors' appointments, many of which were in a city two-hours from here, so we had to rely on his family and friends a lot to take him where he needed to go.

When Tony began dialysis treatments in August of 1997, he became depressed and was often verbally abusive to me and the kids. I could handle it because I understood that it was all from his poor health, but the kids couldn't understand at all. All they knew was that Tony had changed and he didn't make them feel very good about themselves. It seemed I spent all my spare time intervening in arguments and trying to restore peace and respect for one another. I felt I was losing my mind with so much going on--for the first time in my life I was a working mother with no help at all juggling finances, housework, raising the kids, fighting my ex for a fair amount of child support, providing moral support and nursing care for my husband..........

Tony developed a black spot at the end of one of his fingers and it was quite painful. His renal doctor referred him to a surgeon to have it taken care of, but it was months before he could get an appointment. Meanwhile, he was given strong painkillers that apparently did little for him. One day when I came home from work, there was a message on my answering machine from the dialysis unit that Tony had been taken to the emergency room at the hospital because his blood pressure had bottomed out and his respirations were extremely shallow. The pain medication he was currently taking was morphine and he had evidently taken a little too much. They had admitted him by the time I arrived and they had no idea how long he'd be staying. The doctor hoped that while he was in the hospital, he might actually be able to persuade the surgeon to stop in and see to his finger.

After about two weeks, he persuaded the doctor to release him. After two strokes, he was extremely weak, and I had no idea how we were going to care for him at home with me working what seemed like all the time, and Medicare and Medicaid didn't feel that he needed a full-time home health nurse. He put on a little show for the doctor by walking around the bed with his walker, but I could tell that he was really working at it and that once he got home, he would give up trying and become a vegetable. The doctor released him. He was taken to the car in his wheelchair. When we got home, I took his chair out of the trunk and tried to help him out of the car. He was too weak to stand up even with help and slid down the edge of the seat onto the curb. I was unable to get him up so I called his mother to come help. Even with her help and the help of a friend she brought along, he couldn't be moved. I had no choice but to call the rescue squad to take him back to the hospital.

After talking with Tony's mother, nurses at the hospital, and the doctor I concluded that the only alternative was to have him go to a nursing home until he could get some physical therapy and get some of his strength back. We were both in tears as we talked about it, but I know that he knew it was the only thing we could do.

After another week, there was an opening at one of the area homes and he was transferred. I can't say he was thrilled to be there, but he was more satisfied than while he was at the hospital. His doctor had him readmitted to the hospital a week and a half later for surgery on his finger (finally). After the surgery, they began treating him again for an infection that had been recurring for about the past six months. On Tuesday evening when we visited him, he told us that he was being transferred Thursday to the hospital where he had received his transplant eight years earlier, supposedly for tests.

The next day, Wednesday, I tried frantically to contact his doctor to ask him why Tony was being transferred. I knew that the tests that were being done could be done here. When I finally reached him, I asked him about the infection. Since it had been recurring for such a long time and since they had been using the strongest antibiotics they had to treat it, I was concerned that it might be septicemia, which can be fatal. He assured me that the infection was not "dangerous" and that the hospital he was being transferred to preferred to the tests there.

When I got home from work that afternoon, there were two messages on the answering machine from Tony. He was just making sure that we remembered that he was being transferred the next day so we needed to be sure to come see him before he left. Just before we were ready to leave for the hospital, he called again. I believe he knew what was happening and he just wanted to say goodbye.

We didn't travel that weekend to see him because I heard that his mother and sister and one of his sons was going to spend the weekend with him. I would go the following weekend. I did call him everyday though. On Sunday, he was at his dialysis treatment when I called. When I called later, a nurse told me he was resting--he had a rough time after his dialysis; I might want to try to call him tomorrow. I didn't get to call. On Monday while I was preparing to fix supper, the phone rang.

"Mrs. Preston, this is Dr. ***** at ***** Hospital. I'm calling because your husband, Tony, has taken a turn for the worse. I need to know if he made his wishes known concerning resuscitation." Huh? He had made a living will. I told the doctor. Yes, he wanted to be resuscitated but not if there would be damage to require life support. "He has an overwhelming infection. It doesn't look good. You might want to get the family together." Oh, my God! This isn't happening!

By the time I finally reached his family, called a close friend to go with us, and found money for gas, an hour had passed. We still had a two-hour drive ahead of us. I was afraid we wouldn't make it in time. There was no time to make arrangements for the kids for the night so they went with me. I had to be there in time. I had to tell him just one more time that I loved him. Halfway there, one of the kids said, "He's gone." I guess I didn't realize what they were saying until much later. How did they know but I didn't? Or did I? Was that that funny feeling I got in the pit of my stomach? Was that at the time those words were spoken? I can't remember, but I do remember those words and that awful feeling.

When we got to the hospital, his brother who lives near there greeted me. "He's gone." Those words again. No! I didn't make it in time! "He died about an hour ago." No! I wasn't there! I didn't get to tell him I loved him! I didn't get to see his beautiful blue eyes one more time! Then the guilt set in--did he know I wasn't there? Was he aware of what was happening? It was a few days later that I remembered the day he wanted to come home. I believe he knew then that his time was short and he wanted to come home one more time. He almost made it. Why didn't I just have the rescue squad help get him inside instead of taking him back to the hospital? He could have died at home with his family around him. Why couldn't I have been there when he died? Why? Did he understand? The one thing that consoles me is that if he was aware and he didn't understand why we weren't there, he surely understands now.

This is my story. Thank you for giving me the opportunity to tell it.

- Penny

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