"TRUST" by Rochelle Pittman (from Last Rights #12, June 1994) Intro: Ken and Rochelle Pittman trusted the Red Cross They trusted their doctors They trusted the Government They trusted Canada's Blood Supply - But Ken is Dead and Rochelle is Dying from AIDS Now Rochelle has just one last request: "Let me die with dignity" On March 11, 1994, Rochelle Pittman appeared before the Commission of Inquiry on the Blood Supply System in Canada, chaired by The Honourable Mr. Justice Horace Krever. The hearings on that date were conducted in Toronto. Mrs. Pittman, who recently turned 55, is one of over 1,000 Canadians who contracted the AIDS virus as a result of Canada's "tainted blood" supply. The following excerpts are from her testimony: "In December 1984, my husband Kenneth Pittman, had a coronary bypass at Toronto General Hospital. He received a blood transfusion while in the Intensive Care Unit. He seemingly made a good recovery, and came home feeling very optimistic about the future. However, by 1988, he began to wonder why he wasn't doing as well as others he knew who had undergone the same type of surgery. But later, 1989 he began to experience on a daily basis, flu-like symptoms. He had persistent pain in his legs, diarrhea, nausea, loss of apetite, rash on his buttocks, chest and arms, and extreme fatigue. He slept much of the time. By December, he had developed a dry hacking cough, which got gradually worse. On March 2, I believe it was a Friday, we insisted that he go to the hospital because at this point he had been experiencing chills, high fever, and was feeling very weak. He was admitted to North York General Hospital - where his doctor was on staff - suffering from severe shortness of breath, profusive sweating, and a high fever. The following day we were told that both of his lungs were filled with pneumonia. By the following Monday, he had been transferred to the Intensive Care Unit, where he was immediately put on a ventilator. The next weeks were days of horror for all of us, and certainly for my husband. He was unable to communicate with us verbally, and usually too weak to do very much writing. He was in constant pain, for which he was receiving morphine. He was experiencing, I think every couple of days, peritoneal dialysis, and he had days of seizures, nose bleeds, and endured dreadful indignities to his body. Gradually his condition deteriorated until all of his major organs, with the exception of the heart, had stopped functioning. At this point my children began to wonder if the possibility existed that their dad may have received tainted blood during one of his surgeries. He obviously wasn't responding to the antibiotics he was being given. I assumed at this point in time testing for the AIDS virus was done routinely. But when I asked one of his doctors I was told it could only be done with his permission, and he was too ill to give such permission. At that point I asked if I could give my permission. I was told yes. So I requested a blood test be done, and promptly forgot about it and went back to the important thing of comforting my husband. On Monday, March 20, 1990, four years ago this month, my husband died. He had given up the fight and indicated that he wanted to be taken off of life support. This was done, and he died approximately 30 minutes later in my arms. My children and other family members formed a circle around his bed. One month later, in April, I received a phone call at work from my husband's family physician, asking me to come to his office. I went immediately - I must say, with some sense of dread - and upon entering was told that he, Dr. Stanley Bain, had received the results of Ken's blood tests, and that he tested positive for AIDS. I was stunned. I believe my next words to him were: "How long do I have to live?" He took me over to his wife's office, who was my family doctor. I stayed for a few minutes, and cried. I was unable to cope with being tested myself at this time. My family doctor, Joan Bain, told me that I was probably at low risk, and didn't have to be tested until I was ready. In July, I flew to Halifax, my husband's birth place, to have his ashes buried there, at the request of his elderly mother. While I was there I developed oral thrush, and became panic-stricken because I remembered well that my husband had had this condition for a month or so before he died. So I naturally assumed it had to be AIDS-related. I knew then that I had to be tested. My children supported me in this decision. On arriving home in Toronto I spoke a couple of days later with my family doctor, Dr. Joan Bain, and asked her to arrange testing for me. She did so. I was tested, and some weeks later, some six weeks later actually, I went to her office with my two daughters to hear the results. Because I was feeling well at the time I was confident that the news would be good. Well, I was wrong. My test proved to be positive. I was devastated, as were my children. We left her office in tears, came home, had a bottle of wine and some pizza. I decided then that if I only had a short time to live I'd better begin to make each moment count. I've tried very heard to do that, not always succeeded, I know. My children have been devastated by this tragedy. Not only have they lost a father, but must live now with the knowledge that in all probability they'll lose their mother in the same way. This fact continues to be a source of anger and great sadness for me. For me, life has changed irrevocably. I feel as thought I've been robbed, first of a husband of 32 years and second, I've lost the good health which I've always enjoyed and was always grateful for. I no longer feel good about my physical self and am constantly aware that my body fluids are contaminated. I was told by my infectious disease specialist that if I should cut myself I should clean the blood with Javex, which doesn't tend to make you feel good about yourself. I have become very neurotic about my health, fearful of having a cold. I check my arms for rashes. This is something that I don't remember ever experiencing before. For a long time I felt a sense of shame. There is still so much stigma attached to this disease which allows for insensitivity, some of which I have experienced. A year ago this month I was hospitalized with severe diarrhea, dehydration and fever. I was absolutely terrified, convinced that I was dying from one of the AIDS-related opportunistic infections. I spent a month in hospital being tested almost on a daily basis. I was discharged, having been given a working diagnosis of Crohn's disease which is an inflammatory bowel disease. It felt a little like being kicked when you are already down, but preferable, I know, to have one of the dreaded infections. At times, when I am feeling unwell, this is small comfort. The biggest thing that I suffer is a great deal of fatigue. I try to rest every day. I am having dreadful digestive problems and because of this loss of appetite I really find it difficult to eat and don't seem to have any interest in food. I'm presently receiving aerosol pentamidine treatment as a prophylaxis guard against PCP pneumonia. It is very nasty tasting. Since I don't have much appetite at any time, I usually don't eat very much that day, but I've become accustomed to it. In January 1992, with some opposition from two of my children, I decided to go public with my story. Actually, the decision was made based on the fact that one of the members of our transfused group had been sent home to die. I suddenly felt I had to speak about it. I wanted to warn people that if they had received a blood transfusion between 1979 and 1985, then they had better have an HIV test. At that time I was planning to dedicate myself to this cause. However, after my hospitalization last year, my priorities have changed. I have decided now to devote myself to my four children and six grandchildren. These are now my priorities. I feel terribly betrayed by the whole system. I think they've failed us miserably, beginning with the Red Cross, the hospital, the public health system, and obviously, my husband's doctor. I'd like some answers. I want to know how something like this could have happened. Someone has to accept responsibility for these tragedies. I really question a society that neglects to safeguard at all costs the safety and well-being of its members. The death of just one person is one too many, in my opinion. This is not a statistics game. Since my attendance at the Vancouver AIDS Conference in April 1991, I have experienced the loss of five persons, two of them mothers of young children. I find this totally unacceptable. We must ensure that nothing of this magnitude can ever happen again. I would like to close by commenting on an issue that I realize is very controversial, something I feel very strongly about. Speaking as an HIV-infected person and one who has spent much time thinking about my coming death, I would hope that when the time comes and my major organs have shut down and I no longer wish to struggle, that someone could assist me to die with dignity. I know this is a very personal issue and one that people feel very strongly about, but I truly believe that no one should impose their morality, their moral values on others. I feel that Sue Rodriguez was an incredibly courageous woman. I sincerely doubt that I could ever show her kind of courage. I can only hope that her fight will not have been in vain. I would like to say that I have been really fortunate with my children and my friends and family. I get incredible support for me personally, and I at least feel very fortunate in that regard." * * * * * * * * * * * * * * * * * EDITOR'S NOTE: Rochelle Pittman recently wrote to The Right to Die Society of Canada expressing her "admiration and support for your work" - but adding that her health has declined to a point where she must concentrate on just getting through each day. IF her health permits she may at a later time appear before the Senate Special Committee on Euthanasia and Assisted Suicide (currently conducting public hearings in Ottawa). If not, this will be her last and only public statement on the matter.