|As I crawl out from under a bout of influenza A, which was made dangerous for me by my anti-rejection drugs, I contemplate genetics, and how my family has been seriously impacted by auto-immune disease. Somehow aspects of my environment triggered my immune system to go into overdrive and attack the biliary mitochondria in my liver as though attacking a foreign body. My transplant has not eliminated my body’s tendency to do this; it was not a cure. It has given me some more years if I am fortunate, and I struggle to understand what has happened to me and to adjust to my new chimeric life.
|While spending day after day in bed recovering from the flu, I read Carl Zimmer’s book She Has Her Mother’s Laugh, about the history of heredity and the impact of science upon our understanding of it. The book ended with the author pondering about gene editing of human eggs and embryos (CRISPR), which is currently in the global news as scientists struggle with the ethics and wisdom of using this powerful technology. My head is spinning with all this: I am creeped out by it, and can envision disaster resulting from gene editing, but had the gene(s) responsible for my immune system’s unwarranted attack been successfully edited away, my transplant would have been unnecessary, and I would not have passed such genes on to my children and grandchildren. That is a heavy burden. If, if, if.
|Although I learned about mitochondria in science class in high school, it was Madeleine L’Engle’s science/fictional account of Charles Wallace’s illness in A Wind in the Door that first reawakened my curiosity about mitochondria when my children were young. At that time I had no idea how important mitochondria would become in my life. However, it was not L’Engle’s forces of cosmic evil which messed with my mitochondria, but genetics and environment. My love of science fiction is accompanied by my life-long love of science. After all, my father taught genetics at the university level. <a href=”https://en.wikipedia.org/wiki/A_Wind_in_the_Door”>
|Myth, science, science fiction, religion, folklore, myth….I love it all. It is about trying to understand our place in the cosmos and on Earth. In a confusing, fast-paced, and precarious world, Spring brings me hope. Spring = new life. Today is my donor’s 30th birthday. Happy birthday, Robb! I would not be here without your extremely generous and miraculous gift of part of your liver. I am grateful every day.|
Archive for the ‘Surgery’ Category
It has been some time since I posted here. As some of you may know from my earlier posts, my health has been challenged in a big way for the past five years. Actually, it began before that, about twenty years ago, but doctors couldn’t determine what was wrong for fifteen of those years. By the time I was diagnosed, I was at Stage 3 out of 4. The autoimmune condition (Primary Biliary Cholangitis with Autoimmune Hepatitis overlap) is incurable, but a liver transplant can prolong life.
On November 23rd, 2015, I was finally transplanted, at Cleveland Clinic in Ohio. Miraculously, an anonymous living donor had come forward. This person is unknown to me. He or she had intended to donate to another person, and went through the health workups and evaluation, but the transplant did not happen. I do not know why not. The donor decided to go ahead anyway, donating a piece of his/her liver to a stranger in need. Because of my poor quality of life, my blood type and my relatively small size, I was chosen. I received the left lobe of the donor’s liver, and the pieces grew back to almost full size very quickly for us both. My new liver grew to almost full size by eight weeks post-surgery!
At six months after the surgery I will be allowed to (anonymously) contact the donor through the clinic to express my gratitude. If all goes well, years will be added to my life. Transplantation is not a cure, for the problem does recur in some cases, but already the new organ has made a huge difference in my quality of life and well being.
Now I am recovering from the surgery. The most dangerous time, regarding rejection of the transplant, is in the first three to four months post-surgery. I have made it past that point with no rejection episodes. Hurrah! Full healing will take at least a year. But today, to celebrate Easter and enjoy this fine early Spring day, I walked in the woods with my husband, looking for signs of seasonal renewal.
This was my worship today, because being immuno-compromised by anti-rejection drugs, I am still avoiding groups of people in close quarters. This year especially, Easter is very meaningful to me, as I experience life anew, with energy, gratitude, and hope for the future.
PS – Share Life! Be an organ donor!