I have been reading the news, the Internet news pages from England, and people's emails about the death panels and lack of care thus ending life early.
In writing this I do not want the reader to think I am bitter. It was what it was and others have had to endure more. We have seen life end so organs could be harvested. The medical profession is not the compassionate service profession it has been. I just want to make my statement on our medical profession as it is.
We did not have insurance because Ned could not afford the high risk insurance rates after his company mistakenly had used a company not licensed in the state of Texas. Then he had already had skin cancer in his ear and they considered him high risk. Thus when we went in for diagnosis, every medical doctor involved, said sorry, good luck and tried to pawn him off on the State hospital. The paper work did not move along fast. When he went to the emergency room in Galveston, a surgeon accepted his case because they needed to do a colostomy. They lied to him that they would reverse it. The radiation doctors took him then. An then the chemotherapy doctors on the recommendation of the radiation doctors and after a drug company said they would offer the drugs for the use of experiment, took him as a patient. The cancer continued to grow for another 10months after initial diagnosis. It was never advised that the colon cancer was not the initial cancer, we figured that out much later. The initial cancer was on the outside of the colon and that was what actually cause his death and his great pain as it destroyed his coccyx and started on his pelvic girdle.
This is a picture of him just 5 months before his death. He was hopeful, energetic, and the pain had reduced. A week later we went into the cancer clinic and they told him they were stopping all his treatments that none of them had worked. He was in shock. A Patient advocate then got him an appointment with the radiation oncologist to see if they would do more for him...the RO said on viewing the plates and tests that they had "read the results wrong" and recommended that they reenter Ned for treatments again.
They dragged their feet for weeks, then he became really ill and had to go in for gangrene in his pelvic/groin area from the radiation treatments 8 months before. [ I, as you know, had asked what happened to the tissue that the radiation kills. The answer had been that the body absorbs it. That is simply not true. The chemotherapy they follow up with kills the cells that are capable of that, and they know it. The end result is always, it comes out through the nearest exit. Internally usually the skin, but people don't recognize what it is. ] When he was in the hospital, they treated him with a clorox, baking soda combination they called a technical name until we were going home and the pharmacy gave me the formula so I could make my own. The chemotherapy made an appointment to see him in a week. A hurricane came in a week later and put the "state hospital" UTMB in Galveston out of commission. A few weeks later, in an private hospital emergency room, I found out the treatment hadn't been used for 40 years. We survived that, and were still able to function relatively normal. He kept pushing to get more treatment, they told him MD Anderson Hospital would take him since he had scheduled treatment at UTMB Galveston. Finally we heard from MD Anderson, visited them (this is 3 months after they had"mistakenly stopped his treatments") they said they would see him in two weeks. In the meantime, he developed great pain. He said, I have and infection I need to go in. We went into the emergency room, they held him there 24 hours after they knew what was wrong after a cat scan, but did not tell us the results, a doctor never came in and visited him only nurses. I did most of the care. When we got on the floor, it was another 24 hours before a doctor actually came in and saw him, this I have to note was because of a compassionate nurse who called and complained that a doctor still had not come. Ned was a hungry person, loved his food and ate every meal. His main concern was he wanted to go home as soon as the pain was under control. Again, I did most of his care. I slept in his room and did everything for him. Not tooting horns here, just explaining the level of care.
The doctor pulled me out and advised me to start funeral arrangements. I was shocked. They were " working on managing his pain" and horrendously raised his morphine dosage IV. I said as long as he was able to function I wasn't for "pulling the plug". I kept questioning this and they said it was normal to do for cancer patients. He began to have a hard time breathing which interfered with his eating. I had told them that it had been 3 days since his colostomy had worked, they said they would note it...Then in the evening, his breathing became almost chain-stokes type breathing, the doctor said was just a matter of time. I asked if anything could be done what was happening, then she told me that since he had come in he had fluid in his lungs and a infection...(that they were not addressing, because he was dying)...they could go in and drain the lung but he would have to be put on a breathing tube...I said well that was okay to medically treat a problem. So they finally took him into the Respiratory ICU to drain his lung. They decided to put him on a Cpac mask instead of entubation. The nurse, no doctor visited while I stayed, one only came into the waiting room to tell me I I could go back to be with him, told me that the amount of morphine they had had him on had shut down his respiratory system further complicating his breathing, they had drained 2 liters of fluid off his lung and started him on antibiotics. I told them his colostomy was not working, they said they would call the wound care. Two days later, and an unbelievable number of different drugs IV hanging, they moved him back to a room. He was uncognitive of his surroundings, the day, who people were, and I had to feed him. This is 5 days now, again, I complained that his colostomy still was not working. I called the patient advocate who happened to be someone in administration for the weekend, and oh my they ordered some stuff to try and get the colostomy to work. For almost 7 days, the doctors had ignored this very important challenge. I asked could his confusion be related to the number of antibiotics? No, said they, antibiotics don't cause that problem, (liars). I watched everything like a hawk, because I was really his only advocate. After 4 colostomy chocolate enemas, they got some really rock hard stuff, caused by the initial over morphine ( acknowledged by the caregivers), out and the colostomy began to work again. They said there wasn't anything they could do for him (now the only test that had been done aimed at the cancer was the initial cat scan in ER), taught me how to drain his lung with a denver catheter, and released him to a in house hospice. I jumped at the chance to get him away from the hospital so I could reclaim his brain. When I arrived at the hospice, they had sedated him more on the trip so he would be comfortable. I went home to get some clothes and bathe, about 30 minutes after I had arrived, I received a call saying that he had gotten up and tore out his catheter, and was upset because he couldn't find me. I went back, the next morning he had to go to the emergency room for the bleeding. The doctor never looked at him, they never looked to see if there was damage to the urethera, he was dying. They reinserted another catheter since he couldn't get up and go himself. The first night the nurse and I had a come to meeting. She was going to give him a sedative for sleep. Now he has not been able to stay awake, have cognitive thoughts, or eat. I advised her she was not giving the medication to him. She said it is to keep him comfortable ...hrumph!....they just want to keep them out! I told them I did not want him to be so heavily sedated he could not reason and choose what he wanted. Unbelievably, I was able to keep them at bay long enough for him to be able to focus long enough to tell them to not give him sleeping medication and haldol (sp) to keep him sedated. He said "I want to be able to think". That was in the beginning of November. They were amazed that from that moment he improved to where I was able to get them to let me take him home and their nurse could visit. By the way, other than changing the sheets and giving the medications, I did all his care here too, including the denver drain which they did not know how to do.
At home we had a close time. It was just for 6 weeks, but it was six weeks of conversations, visiting with men and women that he loved who came by to see him. The sad thing was I was never able to turn his ability to eat well back around from the time in MD Anderson. They started him on a decline I could not turn back around. He took the minimun pain medication to be able to talk with his family which he was able to tell every one of them he loved them. He planned he own funeral. He looked at me through his oxygen mask and said "I love you". All of which if we had not fought for would have been lost because the medical community wanted to sedate him to an earlier grave. He drew his last breath on Christmas Eve and went peacefully to his maker.
The decision to shorten his life was made by doctors who no longer care beyond their paycheck or earnings. It started with his initial diagnosis and ended with his hospice care where a doctor never visited him at home. I found out later that the UTMB hospital hated taking patients without insurance. It was their policy to do a minimum treatment and end it thus the stopping of the chemotherapy, when it was just beginning to work. The minimal medical treatment (interestingly a treatment that the nurses and doctors has to learn because it was not done any longer) for a life threatening infection, gangrene, and sending him home when it was not resolved. Myself being the only person who knew how to do the treatment once we left the hospital. MD Anderson had refused to treat him until the hurricane situation forced them into at least interviewing him. I regret ever going there. Don't seek medical help unless you have "good insurance". They may say they treat everyone, but the levels are definitely evident and if it is turned to government care, then how my Ned was treated will be for everyone and not everyone has an ex nurse wife to advocate for them or take the treatments beyond what the doctors have in mind which is shortening the life. The AMA is not your friend.
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