Wednesday, September 9, 2009
cont. Half the Walk Is Through the Rain
In the mid-1980s, along with several required family members, I had genetic testing done at the University of Chicago. At that time, genetic testing for CF required as many blood family members as possible from both sides of my sister’s and her husband’s families. I can still feel the November cold, smell the black, rich plowed dirt, and see the starkness of the treeless, flat Illinois landscape as it contrasted with my new home in warm, hilly, pine-treed, Georgia. We set our appointments for the Friday after Thanksgiving. The kids, Theresa, Michael, and Beth, all cried when they were told of the blood draws. My younger sister, Karen, avoided some of the problematic issues of genetic testing by already becoming pregnant with her first child. I thought it was a good idea to be tested, and at that time, it was the only way to find out if Michael was a carrier of the CF gene. By Christmas we had our answers. Michael is not even a carrier. My sister and brother-in-law hit on the 25 percent box three times in a row. About ten million - or about one in every 31 Americans—are carriers of the defective CF gene, but do not have the disease. The gene came from my father’s side of the family. My brother-in-law’s mother, now deceased, was also a carrier. I was only other family member found to be a carrier of the CF gene. Oddly, I felt bonded to my nieces and eventually to other CF families in a way that other family members were not. When Theresa was waiting to get her call for her new lungs, I started reading the transplant and the CF bulletin boards on the internet trying to get as much information as I could about CF and double-lung TXs. Then, I was gathering information as a coping mechanism but I still periodically return to these electronic bulletin boards. What draws me to these cyber communities? Perhaps it is the intimacy of people willing to share their personal fears and painful losses. Perhaps it is the fact that it is a suspenseful community where the future outcome of any one health crisis is real and unknown. Or is it the pull towards reality where my virtual encounters may overlap into my physical world and my daily, lived experience?
Tuesday, September 8, 2009
HALF THE WALK IS THROUGH THE RAIN
It’s a bizarre concept. One person, who is clinically declared brain dead, has their organs taken out of his or her body and then placed into someone else’s body. I recently read about a transplanted cornea still in use after 123 years. A Norwegian man had a cornea transplant in 1958. The donor was a man born in June 1885. The cornea was still in use in 2008. An organ harvest is described as being very messy. Time is of the essence. The body is sliced open. The blood vessels for each organ are tied off, preservative solution is pumped in, and the organ is removed. Depending on what is needed, the lungs, the liver, kidneys, pancreas, corneas, heart, and even bones and other items may be taken out. The anesthesiologist then switches off the ventilator. What's left of the patient dies. One person dies but several other people receive life-prolonging organs. My niece, Theresa, received such a gift on December 15, 2003. She was the recipient of a double-lung transplant (TX) due to the complications of cystic fibrosis (CF). Her first words when waking up from her operation were, “I can’t believe how good I feel.”
Cystic fibrosis (CF) is a hereditary disease affecting the mucus glands of the lungs, liver, pancreas, and intestines. Thick mucus production results in frequent lung infections. Diminished secretion of pancreatic enzymes is the main cause of poor growth, fatty diarrhea, and deficiency in fat-soluble vitamins. There is no cure for CF. Most individuals with CF die young in their 20s and 30s from lung failure.
A double-lung transplant (TX) is often necessary as CF worsens. In 2005, approximately 3,500 people in the U.S. were waiting for a lung transplant, yet only 1,000 of them (28.5 percent) received a transplant. The average waiting time for suitable donor lungs in the United States is 18 months although different TX centers advertise average waiting time as short as 35 days to four months. According to the United Network for Organ Sharing (UNOS), the patient survival rates for all lung TX patients are 82% at one year, 65% at three years, and 50% at five years for patients transplanted between July 1, 2002 through July 31, 2008.
I have two nieces who are living with CF. Theresa, age 32 and Beth, age 29. They are two of approximately 30,000 people in the United States who have CF. My nieces inherited a defective CF gene from each parent. Each time two carriers of the defective gene conceive there is a 25 percent chance that their child will have CF; a 50 percent chance that the child will be a carrier of the gene; and a 25 percent chance that the child will not have the gene at all. The odds remain the same with each child. My older sister also gave birth to a son, Michael, age 30.
It’s a bizarre concept. One person, who is clinically declared brain dead, has their organs taken out of his or her body and then placed into someone else’s body. I recently read about a transplanted cornea still in use after 123 years. A Norwegian man had a cornea transplant in 1958. The donor was a man born in June 1885. The cornea was still in use in 2008. An organ harvest is described as being very messy. Time is of the essence. The body is sliced open. The blood vessels for each organ are tied off, preservative solution is pumped in, and the organ is removed. Depending on what is needed, the lungs, the liver, kidneys, pancreas, corneas, heart, and even bones and other items may be taken out. The anesthesiologist then switches off the ventilator. What's left of the patient dies. One person dies but several other people receive life-prolonging organs. My niece, Theresa, received such a gift on December 15, 2003. She was the recipient of a double-lung transplant (TX) due to the complications of cystic fibrosis (CF). Her first words when waking up from her operation were, “I can’t believe how good I feel.”
Cystic fibrosis (CF) is a hereditary disease affecting the mucus glands of the lungs, liver, pancreas, and intestines. Thick mucus production results in frequent lung infections. Diminished secretion of pancreatic enzymes is the main cause of poor growth, fatty diarrhea, and deficiency in fat-soluble vitamins. There is no cure for CF. Most individuals with CF die young in their 20s and 30s from lung failure.
A double-lung transplant (TX) is often necessary as CF worsens. In 2005, approximately 3,500 people in the U.S. were waiting for a lung transplant, yet only 1,000 of them (28.5 percent) received a transplant. The average waiting time for suitable donor lungs in the United States is 18 months although different TX centers advertise average waiting time as short as 35 days to four months. According to the United Network for Organ Sharing (UNOS), the patient survival rates for all lung TX patients are 82% at one year, 65% at three years, and 50% at five years for patients transplanted between July 1, 2002 through July 31, 2008.
I have two nieces who are living with CF. Theresa, age 32 and Beth, age 29. They are two of approximately 30,000 people in the United States who have CF. My nieces inherited a defective CF gene from each parent. Each time two carriers of the defective gene conceive there is a 25 percent chance that their child will have CF; a 50 percent chance that the child will be a carrier of the gene; and a 25 percent chance that the child will not have the gene at all. The odds remain the same with each child. My older sister also gave birth to a son, Michael, age 30.
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