Lillian's Story - Johnny's Medical History
Lung cancer patient Johnny died on December 2 nd, 2002. Here his partner Lillian gives a detailed account of the medical treatment he received in the preceding months, claiming numerous medical blunders and the unsympathetic attitude of certain doctors contributed to his death. She filed formal complaints against two American hospitals but both were cleared of any wrong doing.
”For months Johnny had a problem with shortness of breath. Each time he would go to the doctor he was given the same advice: "Quit smoking and you will feel better". No tests were ever done. In January of 2002 he told the doctor he was seeing to "either help me or shoot me. I can't go on like this".
By then I had looked up his symptoms and told him that I was sure he had COPD (chronic obstructive pulmonary disease). Not once did his doctor mention that nor did he order a chest x-ray. Finally he sent him to a cardiologist where he had a scan of his heart. His heart checked out fine but from that day on his health steadily declined. He always suspected that the dye given to him for the scan had triggered something.
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He was referred to a pulmonologist who asked a lot of questions but did nothing else. Johnny was sent back to the referral doctor. Then in April after months of delays he had a chest x-ray. When several spots that looked like nodules showed on his lungs a CT scan was ordered. The scan was inconclusive. It just stated that he had numerous nodules that were consistent with cancer that had metastasized from somewhere else but they were also consistent with fungus and a number of other things. Since his PSA (prostate specific antigen) was high, an appointment was made for a prostate examination. I know for a fact that he had none of the symptoms of prostate cancer that had progressed far enough to metastasize to his lungs.
A bone scan showed no evidence of cancer. After numerous attempts to see another doctor he was always told to go back to the same doctor. Nothing further was done to get a definite diagnosis.
Johnny had noticed for months that when he would leave the trailer he was living in to spend time at his son's house his health improved. He drew a very small social security check and could not afford to move, even though he knew there was mould growing between the walls of his home.
On Father's Day he was taken to the hospital unable to breathe well. When the doctor showed him the x-ray he told him that everything that showed was cancer and if he had anything he wanted to do he should do it because he would probably not be alive in a year. There was no evidence to positively diagnose cancer - only the x-ray.
When he informed me of what the doctor told him I immediately rushed my plans to be with him so I could care for him and see that he got the medical attention he needed. I joined him on July 3, 2002. Two days later I called 911 and he was admitted to the hospital with pneumonia. By the next day his condition had improved dramatically. Still no tests had been taken that could give a definite diagnosis. When a biopsy was ordered for one lymph node in his neck we were relieved that he would not be put through the ordeal of a lung biopsy. We were told that a lung biopsy would be too invasive and there was no need because it was evident by the x-rays that he had cancer.
When offered the papers to fill out an advanced directive he refused. Emphasis was put on the DNR (“do not resuscitate”) and Johnny told everyone that he had come to the hospital to live not to die. He also thought that an advanced directive would take all control of his treatment out of his hands. The general practitioner assigned to him harassed him continuously trying to get him to sign a DNR. Johnny remained steadfast. He wanted to fight for his life.
After the lymph node biopsy we were told that he had stage IV non small cell cancer. I was given that information while he was still in recovery. We were never told what kind of non small cell he was supposed to have. We were also told that he could not have radiation because he had so much cancer that it would burn him too badly. Chemotherapy was the only thing offered. Johnny jumped at it.
Even before the first treatment he had gained back several pounds of the weight he had lost. He had no adverse reactions to the chemo and continued to gain weight and become stronger. Although he went home with oxygen he began to wean himself off of it for hours at a time. When he did use it he would keep it set at one liter. He was convinced that he would beat the cancer. Before long he had everyone around him convinced as well.
Because of the personality clash with the general practitioner who insisted that he sign a DNR he never saw any other doctor besides the oncologists.
He steadily improved while all of the people we met each week at chemo declined noticeably from week to week. At the end of the first series of chemo treatments the nodules had shrank by 50%. That shrinkage was from the size shown on the inconclusive CT scan done in May. At the time of diagnosis he did not have another CT scan. Because of that I believe that the nodules could have grown much more during the two months that treatment was delayed, making the actual shrinkage much more.
Because he did so well the second series was started that same day that we got the good news. Later that evening Johnny got sick. His skin was like ice and he was shaking uncontrollably; ten minutes later he was burning up. I took him to the emergency room and tests were run to find infection. None was found. It was decided that even though his white blood cells were always on the high side that he had no infection but a reaction to Carboplatin. Because of that his chemo was continued with only the Taxol. He steadily gained weight and became stronger.
From the day he entered the hospital in July he was given a prescription for Vicodin and also one for Ativan. He seldom took the Vicodin and took the Ativan only at night because he found it helped him sleep better. He was also on 10 milligrams of Prednizone a day as well as a medication called Theodur. The Theodur is a medication often used long term for asthma sufferers. It relaxes the air ways and makes it feel easier to breathe.
The breathing treatments of Duo Neb were supposed to be taken every four hours. Johnny never took them more than twice a day. When he developed the shakes all of the time he questioned his home nurse. She suggested that the shakes were caused by the Theodur. I know now that the Albuteral in the Duo Neb could have played a part as well.
On Thursday September 19th we made the long drive to Lake Quinault in the coastal rain forest. We had a great day. Johnny was doing so well that he spent the whole day without the oxygen. When we stopped by the beach where he had lived before I arrived many of his neighbors commented that they had never seen him looking so well. We had a wonderful day and made plans to go back to the lake when the weather was better and spend a romantic few days there. It was time to start making up for some of the things we had missed.
Friday September 20th was scheduled for his third chemo treatment of the second series. Instead of the afternoon his appointment was in the morning. When we arrived all of the chairs were taken and the waiting room was overflowing. When the nurse saw us he took us to a very small back room to get the IV started while waiting for a chair to open up. The room was so small that there was only room for one small chair and a hospital bed. Johnny was claustrophobic. I had been concerned about him receiving nothing to replace the Carboplantin and decided to ask about it. For the rest of my life I will regret ever starting that conversation.
It was obvious from the first minute that Johnny was uncomfortable in that small room. He even started to leave once. He just couldn't take his eyes off of that bed and kept asking why he was put in that room with that bed. When I asked about the medication I didn't think he heard me because he was so preoccupied with that small room and bed. The answer the chemo nurse gave got his attention and started the conversation that I will always know cost Johnny his life.
The nurse said that maybe on the next series they would add Cistplatin. He explained that even though it is platinum based, like the Carboplatin, it is administered slower and is more easily tolerated. When Johnny heard that he said "I may not need another series. This one might kick it all out". The nurse said: "No it won't. I don't want you to get your hopes up. You will be on chemo for the rest of your life". Johnny replied : "Why do you say that? The first time kicked it 50%; I know that I am getting better and stronger. I can feel it. This time could get rid of it all".
He was then told that the cancer had probably been growing in his body for ten years without treatment and receiving treatment for the first time had made it shrink. There would be little possibility it would do that again. A chair opened up in the next room but by then it was too late. The damage had been done.
When he saw his doctor earlier he had questioned him about the Theodur causing the shakes. He was told that he didn't realize that he was still taking that and it was no longer necessary. There were only enough pills left for two days and he didn't give us another prescription for it.
That night Johnny was very quiet and I knew that he was thinking about what the nurse said. I even caught him counting on his fingers. When I questioned him he said that he was just trying to figure something out. I will always believe that he was counting the months left until the year was up from Father's Day when he had been told he wouldn't be alive in a year.
The next morning when he got up to urinate he complained of being short of breath. As the day wore on he continued to complain each time he went to the bathroom. By the end of the day I was aware that he was having anxiety attacks every time he went to the bathroom. As the week wore on they got worse. Instead of taking the Ativan only once a day he took the second one milligram pill that was prescribed for him. Still the attacks continued and got worse.
At the time I wondered if stopping the Theodur could have played a part in his feeling short of breath. When it became more obvious that his problem was anxiety I forgot about that. Looking back I can see where that would add to the anxiety problem. I should have followed up on that idea but things got out of hand too fast for me to think.
A visiting nurse had been coming to our home twice a week. After about two weeks she told us that his condition had improved so much that he was moving air all the way down in both lungs. When she had first seen him he could only move air about half way down in the right lung. Just the week before she had told us that he was doing so well that she was going to request that her visits be changed to only once a week. Once the anxiety attacks started that all changed.
We drove back to the beach one day. The first cold front of the year came through while we were on our way there. When we stopped for Johnny to urinate the wind hit him in the face and took his breath away. He regained control after a few minutes and seemed to be no worse for the experience. Then it happened again and it sent him into a full blown panic attack. By the time we got home that night he had had two more panic attacks. Again the next morning when he got up to urinate he had another panic attack.
I'm not sure who was more frightened of those attacks, Johnny or me. He became so afraid of them that he tried to avoid anything that he associated with them. What he couldn't avoid was urinating. He dreaded the panic attacks so much that he would put it off until the last minute, working himself up to an anxiety attack. Those attacks were very different from one another. Our nightmare would only get worse.
His nurse witnessed three attacks in the one hour that she was with us. She called the oncologist’s office and got permission for Johnny to take an additional Ativan from the nurse practitioner who was there that day. I was also told to go by the office the next day and get a sample of Paxil for Johnny to try. If he could tolerate it he would be given a prescription for it on his next visit for chemo.
The first two Ativan were taken in the morning and at noon. I noticed that he was saying things that didn't make much sense but brushed it off. When he took the third one that night things went from bad to very bad. He hallucinated and had nightmares all night. Neither of us slept more than an hour. After that he was afraid to take them at all.
I picked up the sample of Paxil the next day and he started taking it. It seemed to help. I know that it was such a small dosage that there was little chance that it could start working that fast but knowing that he had something that was supposed to help did. For two days the attacks subsided. On Friday when we asked the doctor for the Paxil he refused to give it. He said that the attacks were brought on by asthma like attacks and anyone would panic under those conditions. Johnny didn't realize until later that night that he would not be given the Paxil. When I told him he had an attack.
The following evening October 5th I had to take him to the emergency room. He was having a panic attack so bad that his blood pressure was 217 over 120. I was terrified that he would have a stroke. His release papers stated that his problem was anxiety.
The anxiety attacks continued and got more frequent. With nothing else to help with the anxiety and being terrified of the Ativan he decided to try the Vicodin. He also started using the nebulizer for just a minute at a time many times a day. His attacks continued and he became dependent on the Vicodin. When I questioned a nurse and his doctor about him becoming addicted to the Vicodin I was told: "What difference does it make he has lung cancer?". In other words he was going to die so why did it matter if he became addicted to a drug that only made his condition worse!
Everything I tried was like hitting my head against a brick wall. I wasn't getting much sleep and I was scared to death because I could see that the anxiety was starting to take a physical toll on Johnny. I finally found a way for him to use the bathroom without having an attack. It worked for three days until a different nurse came to see him. When he told her about the attacks when he had to use the bathroom she told him that if it bothered him so much to just use the urinal all of the time. Then the attacks started when he used the urinal.
He started dreading the walk to the car and that started another round of anxiety attacks. Then I found that if I could talk to him and get his mind off of it he could make the trip to the car and back without a problem. Then someone told him to get a wheel chair if walking to the car caused so much of a problem. I knew that he didn't need it and we argued because all progress we had made ended and he became obsessed with getting a wheel chair.
When his nurse faxed the other oncologist in the office requesting the Paxil he ordered it but it was never called into the drug store and we were never told it had been ordered. We had even asked the first doctor for it again and he never told us. We only found out about it two weeks later when a substitute visiting nurse saw the order in his records on her computer. By then he was totally dependent on the Vicodin and that caused a whole new set of problems.
His red blood cells never got low enough for him to qualify for Medicare to pay for the Procruit shots and an x-ray after the anxiety started showed more improvement. Still he was getting worse by the day. When he had the second CT scan on October 23rd it showed a slight growth in the nodules. Still his doctor chose to give him three weeks off of chemo. Johnny was relieved because he thought that maybe the chemo was causing his problems. The vacation did no good. The attacks were no longer just because of the anxiety but whenever it was time for more Vicodin. He fought himself to not take it but he just couldn't do it. He started taking one every four hours by the clock.
I was desperate to find help so I asked his case worker if we could get a therapist to talk with him. An appointment was scheduled but turned out to do nothing but add to the problem. Johnny had a mild attack while the therapist was with us and got it under control by himself. When the therapist saw that he told Johnny that his problem was not anxiety but asthma and he didn't need him!!
Absolutely nothing I tried worked. Everyone and everything only made the situation worse. It caused a terrible strain on us. Our love for each other was so strong yet we argued. He became totally dependent on me. He would ask me to talk him down from the attacks and I could do that but because of that and no physical evidence to show what was causing his shortness of breath and anxiety attacks I started to think that he was causing them himself to get attention from his sons. I know how terribly wrong that was but at the time I was frightened, exhausted and got no help from anyone.
I needed a few hours off and spoke to his social worker to see if they would pay someone to stay with him for a while. My request was approved but Johnny was dead set against it. He was terrified of my leaving him for any reason. I know now looking back that he was afraid that the problems his health were causing would cause him to lose me again. As much as I needed the time I was afraid to leave him with anyone else but I insisted not only because I knew I needed the time but because I thought he could shake himself out of the attacks and go with me if he thought I would go without him. I know I made so many mistakes but they were mistakes made of love and fear and a complete lack of knowledge or help.
After going behind the one doctor to another to get the Paxil Johnny was afraid the first doctor would be angry and take it out on him. I didn't believe that would happen until I saw his attitude change toward Johnny. He became not only cold but often almost cruel in his remarks to Johnny.
A blood test was taken on November 8th and the following week we were told that the blood test told that the cancer was starting to grow again. Johnny was told he could either take chemo or leave it. The doctor made it very clear that he had given up on him. He also made it sound like he had no hope of the new chemo working but would give it because Johnny wanted to try it. His whole attitude bordered on being hostile.
The new chemo was scheduled to begin on November 20th. Johnny was desperate to get some help for the anxiety and the addiction to the Vicodin. He also thought that if he admitted to his doctor that his problems were emotional not physical that it would help our relationship. He was just as afraid of losing me as he was of the cancer. He just had no idea that nothing in the world could have ever made me leave him. He decided that he would ask to be put in the hospital to rest and get the help he needed. I was against it because I was afraid he would become institutionalized and never come home again. I had no idea that he would never come home because the things done to him would kill him.
On November 20th we left chemo for the hospital. His Paxil was increased from 25 milligrams a day to 40 milligrams. He was also given Marinol despite the fact that he had no problems with nausea from the chemo. Instead of the four or five Vicodin that he had been taking at home he was given the maximum of eight. This was done knowing that he was not in any pain and after he had explained that getting off of the Vicodin was one of the reasons he had requested to be put into the hospital.
The next day I was home when Johnny called me very upset and wanting me with him right away. When I got to the hospital I found him in terrible shape. When I asked him what was wrong he told me that he had had a bad attack and those people didn't know how to handle them like I did. When asked what caused the attack he told me that when he took the mask for his breathing treatment off for a minute the therapist held it on his face until the treatment was finished. As I said before Johnny was claustrophobic. He used the pipe at home instead of the mask because of that.
Xanax was added to boost the Paxil after the episode with the face mask. After that Johnny steadily improved. He never did see the counsellor we had been promised. They also continued to give him the maximum dose of Vicodin.
That Saturday while I was home feeding the dog his oncologist went to see him. When Johnny mentioned going home when he was better his doctor told him that he would not get better only worse. He did that knowing that Johnny's main problem was anxiety!
I tried to get the doctor to tell me if his x-rays showed the cancer as bad as when first diagnosed and he wouldn't say. He just said he hadn't compared the x-rays. When I asked how they looked compared to the CT scan I was told that you could not compare the two. I had every right to get those answers and so did Johnny. It was my name that Johnny had put on the papers to be given information about his condition and his treatments. I was just brushed off.
Johnny requested to spend a few days in a nursing home to rest and let me get some more rest. After the incident with the face mask I was spending night and day with him at the hospital. The day before he was transferred the nurse told us that his medication would be Paxil. Vicodin, Prednizone, Merinol and Ativan! When we reminded her that he could not take Ativan she called his oncologist. She came back and told us that if he couldn't take the Ativan that he couldn't take the Xanax because they were from the same family and Xanax stays in the blood stream longer. Because of that all of his medication was changed. I found out later that was a lie.
Johnny would no longer be given the Paxil. Instead he would be given a drug named Remeron, an antidepressant. He was given the first dose that night and slept so hard for four hours that he woke up frightened and said that they were trying to poison him. I learned later that he was given 30 milligrams of Remeron along with the Marinol. The recommended starting dose for a healthy young person is 15 milligrams. Johnny had lung problems and was 69 years old.
He was transferred to the nursing home on Sunday the 24th of November. Once there the Vicodin was increased to two every three hours - nearly twice the maximum safe amount. All of that when he was still complaining with no pain and they knew that he was addicted to it.
We decided that his doctors would do no more for him and Johnny didn't trust them any more. He asked me to find a new treatment center. I got in touch with Cancer Treatment and Wellness Center in Seattle and they agreed to see Johnny and decide how they could help him. Not if, but how. When Johnny learned that he started to improve again. By then he was gaining back the pounds he had lost once the anxiety started. Over night he looked 15 years younger. He told me that he felt stronger than he had in months.
He also asked me to marry him when he got better. Something he would not have done had he not found hope again.
For some reason his oncologist (the one who was hostile to him) ordered him to be given morphine in a nebulizer. Within two hours of the first treatment he developed a cough and raspy voice. That was November 28 th - Thanksgiving day. Despite the cough he was doing great that day and told me that he felt better and stronger than ever. When brought the morphine again he refused it. He told both me and the nurse that it made him feel strange and gave him a headache. He was allergic to codeine because codeine is a derivative of morphine; I strongly suspect that he was allergic to the morphine as well.
Friday morning November 29th Johnny was ready to go home. When I asked the nurse to listen to his lungs (I was worried about that loose cough and he was spitting up mucus) she said that he had fluid sounds in his lungs and she would have to call his doctor. She delayed calling for over three hours and Johnny was ready to go home. Because of the delay he became very upset. So upset that I finally decided to check him out of the nursing home and take him by his doctor on the way home.
Once we got in the car he started having trouble breathing. The hospital was across the street so I stopped at the emergency room. After running numerous tests they could not find a reason for the cough. One of the tests was an x-ray. It was shown to Johnny while I was calling his family. He told me that he was told that everything black was good and everything white was bad. He swore that he saw very little white on the x-ray. Whenever I would ask the nurse if he was moving air all the way down in both lungs I was told yes.
After spending five hours in the emergency room they decided to put him in a room and treat him for pneumonia even though none of the tests were positive. Before taking him to his room the nurse came to give him an injection. When we asked what it was she told us Ativan. Johnny pointed out to her that it was listed as one of his allergies and refused to take it. She told him that hallucinations were not real allergies. He told her that he didn't care what it was and he would not take that shit!
The nurse left the room then came back with what we thought was another vile. While she was putting in his IV port we asked what it was and she said Ativan. Within five minutes Johnny was in bad shape. Once more he was hallucinating and confused.
We were in his room for over an hour when the doctor on call came to see him. When I saw him I knew it meant trouble. It was the same doctor who had harassed Johnny so many times in July trying to get him to sign a DNR. That night he came with only one intention. Not to examine Johnny or order treatment but to once again harass him trying to force him to sign a DNR. When Johnny refused to sign one he refused to treat him.
I left for a few minutes to get something to eat. I hadn't eaten since early morning and it promised to be a very long night. The affects of the Ativan were still going full force. When I got back I was stopped and asked to sign a paper to transfer Johnny to another hospital in Olympia. I told them that Johnny had not given me or anyone that right because he was capable of making his own decisions. I was told that they didn't think he was at the time. I told them to call his son but they insisted that they didn't have time because the ambulance to transfer him was on the way. They also told me that he had to get to Olympia quickly so he could be treated for pneumonia. I knew that I had no right to sign that paper but when the nurse insisted, I did.
When I got to Johnny he was upset more than ever. They had asked him to sign the transfer paper and he had refused. That is why they got me to sign it. He was insistent that he was not going to the other hospital. After a while I was told that I had to leave because they would never get him in the ambulance with me there. I wanted to go make arrangements to get to Olympia to be with him so I left. That was one of the biggest mistakes that I made.
Later I would learn that the doctor who had refused to treat him had signed the transfer paper. They didn't need my signature. For months I blamed myself for sending Johnny to his death. Then I learned that the only reason they had me sign that paper was to back up their claim that Johnny had asked for the transfer!
The ambulance that was supposed to be on the way didn't leave with him for over 3 hours. I also learned later that after I left they gave him morphine. I know that after the Ativan he would not have taken anything they gave him willingly without me there. They had to hold him down to give him that.
When he got to the hospital in Olympia his blood gases were so unbalanced they had to work on him. I also learned that his oncologist had put a DNR on him after all he had gone through because he would not sign one. His son called and demanded that it be removed and it was.
By the next morning he had improved a great deal. He was very upset about the Ativan and the transfer. All day he improved and continued to both eat very well and drink his coffee. They gave him morphine again and he once more he complained and told them he would not take it again. He also developed Myoclonus (violent jerks of his arms).
On Sunday morning a pulmonologist finally came to see him. His intent was not to examine Johnny. He too tried to get him to sign a DNR even lying to him, telling him that once on a ventilator a person could never get off. He also told us that those violent jerks were caused by his condition and he would have to live with them for the rest of his life. Johnny was still adamant. He would remain full code! I have sense learned the Myoclonus is an adverse reaction to certain drugs - morphine and Vicodin are the main culprits.
The pulmonologist ordered a blood gas test and told us that all of his medication other than a new anxiety medication would be stopped because they were slowing down his breathing and causing his blood gases to be worse.
Later that day we were told that his blood gases were so bad that they did not expect him to live through the night. Later when I questioned the respiratory therapist about it she told me that she had seen the test results and they really weren't that bad.
When Johnny's son came to visit the nurse took him aside and told him that Johnny was dying and the only humane thing to do was give him morphine so he wouldn't suffer. His son didn't know that Johnny had refused it the day before. He didn't discuss it with me or Johnny and agreed for it to be given to him. Johnny was wide awake and well aware of where he was and he could have made that decision himself but he was not asked. I know it was because they knew what his answer would be.
That day he ate two breakfasts and all of his lunch. He was also awake and when anyone would listen to his lungs I would ask if he was moving air all the way down in both lungs. The answer was always yes.
Not long after lunch they started giving him medication again. They also added what I was told was the new anxiety medication to his IV. He started getting restless. As the afternoon and evening wore on the restlessness got worse. Not the normal restlessness you hear of when someone is dying. He would move constantly. Up then down on one side then up and down on the other. He would try to climb out of bed and the sitter in his room would push him back down. I would touch him and he would calm for a second then it would start all over again with him constantly calling me. That went on for hours and an ever increasing pace. I was worn out he had to be too but it never stopped.
Every two hours the nurse would bring him medication saying it was to calm him down. I knew about the Vicodin but I didn't realize until late in the day that the other medication they were giving him was morphine.
At eight that night the nurse came with a pill cup and tried to put the pills in his mouth. He pushed her hand away and asked what she was giving him. She told him that it was his pills and he needed to take them to feel better. He told her to put them in his hand and he would take them. She told him that he would only drop them because of those jerks still he refused until she handed them to him. He did drop them and she picked them up. She had the Marinol in her hand and he asked what it was. She said it was his Marinol and he needed to take it so he did. Then she had the morphine. He looked at it and said: "That little green pill (it was blue) it’s not Ativan is it?" She said: "No it isn't". Then he asked if it was codeine, she said: “No it is your morphine and you have to take it if you want to feel better.” He took it.
Not long after he took the morphine the restlessness got even worse. He was moving at such a pace it is hard to comprehend. That went on for another two hours. By 10 o'clock he started to slow down then the nurse brought him two Vicodin. He took those then his niece called. The sitter held the phone for him because he kept hitting himself in the head. While he was talking I told him I was going outside for some air. He was talking to her and looking right at me. I could see the sparkle in his eye as he told her: "They are saying that I am going to die in seven days and they are full of shit."
When I got back to his room he was sleeping. I was relieved because he seemed to be sleeping normally. I sat with him for about an hour then decided to go lay down of a sofa down the hall. I told the sitter when I left that if there was any change one way or another that I wanted to know immediately.
I couldn't sleep. The day had drained me and I was trying to figure out what had made him act so strange. A little after midnight I went back to his room. The sitter was watching television. Johnny was laying on his left side, a side he never slept on. His right arm was hanging down the left side of the bed. He was very still. I asked the sitter if he was in a natural sleep and he told me yes. He told me that he was just tired from all of the jumping around and he told me not to disturb him. I asked what his vital signs were and was told that they hadn't taken them because they didn't want to disturb him.
I tried again to sleep but couldn't get that picture of Johnny laying like that out of my mind. I went back to his room. I asked the same questions again and got the same answers. I stood there and watched and he never moved. Johnny never slept that soundly - he was a jumper when he slept. I was getting more concerned by the minute and asked again. Once more I received the same answers. I was also told that at 4am they would wake him and bathe him.
I stayed there and just watched him sleep becoming more worried by the minute but for some reason I listened and didn't go to him and try to wake him. At 4am the nurse got bedding and clean clothes for Johnny and a pan of water. When he turned him over he was like a rag doll. His arms just flopped and he never moved the whole time he was being bathed. Then another aide came and they changed his bed he still never moved but they continued to change his bed.
After they were finished the nurse finally came to take his vital signs. His heart rate was in the 80's and his blood pressure was 140 something over 80. When she put the oxomitor on his finger his oxygen read 0. She put it on his ear and it still read 0. By then I was holding his hand and it was like ice. Then his bed started to move. They had hooked his oxygen to a tank and were taking him away. I asked where they were taking him and was told to ICU. The nurse said they had to work on him because he was full code.
They put me in a room to wait. I have never known such terror. I was afraid that he would have brain damage. I prayed that wouldn't happen and expected to find him on a ventilator when I got to him. After a short while that seemed like eternity the nurse came and got me. When I walked in the room I wondered where all of the equipment and doctors were. There was only one nurse there. Instead of being on a ventilator he had the bag on. The monitor above his head showed his vital signs. His heart rate was still in the 80s and his blood pressure was normal. His oxygen level had risen to the 40s. I took his hand and it was still like ice.
He started to choke on the piece of plastic in his mouth so the nurse took it out. Then his oxygen dropped to 0 and he tried to sit up. Then I saw that his heart rate was slowing and that is when I knew! I begged him not to leave me and I know that he was fighting with everything he could but while I watched and begged his heart beat slowed and then stopped. No one came and tried to help him. Being full code meant nothing. They just let him die without trying to save him. He never got the ventilator that he had said he wanted if he stopped breathing.
My world ended on December 2, 2002 at 4:55am.
I sat with him for three hours after he died trying to make sense of what had happened and not wanting to leave him alone. His sons came and went and finally I had to leave too. That was the hardest thing I have ever done in my life. By the time we got home they were already calling wanting to know what arrangements we had made for the removal of his body. He was my life my love and they were calling him a body! How dare they after what they did to him?
The only thing that kept me going was my research into the drugs and other things I knew about Johnny's death. I slept little for well over a month. Every minute I could I spent on the computer. I looked up those drugs and respiratory failure. I also researched everything I could find about blood gases and ventilators. I found out about the Myoclonus and what causes it. I also looked those drugs up in the Physicians Desk Reference. Everything I learned pointed to the fact that Johnny was drugged into a coma and left to die. The more I learned and the more lies I found that we had been told the more convinced I became.
I filed complaints against both hospitals and against that doctor who harassed him. The complaint against the doctor was never investigated and the ones against both hospitals found no wrong doing. They admitted what had been done to Johnny but excused it because he had been diagnosed with lung cancer. They were not the least interested in the fact that his rights had been denied him. They just wanted to make sure that he had received the booklet stating his rights! The report on the hospital in Olympia didn't even mention Johnny's name. Their entire investigation consisted of checking what procedures were in place not what was done to Johnny.”
If you’d like to discuss any of these issues with Lillian, you can contact her via:firstname.lastname@example.org