By Caitlin Greenwood. I’m not one of those people who have a complicated relationship with their mother. My mother is awesome. She’s one of the strongest, bravest, and most loving people that I know. She’s the most important person in my life – and right now the most important person in my life needs help.
My mother, Jodi DeMuth, was diagnosed with Primary Biliary Cirrhosis (PBC) when I was two years old.
PBC is an autoimmune disease that affects the liver and causes excessive and irreversible scarring over time – often resulting in liver failure or the need for a transplant. For my mom, the disease’s progress has been slow. With the help of some great doctors, most notably Dr. Marshall Kaplan at Tufts Medical Center, she has kept the worst of symptoms manageable and her overall health – and quality of life – fairly good. However, in the last couple of years, things have started to get worse quickly. She’s exhausted all the time. A day with her grandkids or a long night of calls as a midwife, delivering babies, are enough to send her to bed for 48 hours. As she struggles with fatigue, abdominal inflammation, and severe itchiness, among many other side effects, her ability to truly live her life is diminishing.
Jodi’s liver function is rapidly deteriorating. Over the last year, we’ve started to talk more and more about something that always loomed on the horizon: a liver transplant. In September, my mother officially became “listed” as a candidate for liver transplant at Massachusetts General Hospital. After 23 years, it’s kind of surreal that we’re here.
Her best odds of getting a healthy liver and having a smooth recovery come from a live donor transplant. A live donor transplant allows her to have the surgery before it becomes a life or death necessity. When you have a willing donor, it is a great option. And Jodi has not one but eight willing donors–three siblings, three kids, one brother-in-law, and one son-in-law who are all blood type matches. A self-titled “Gang of eight” family members have already inundated the staff at MGH with donor-registration materials.
To this selfless crew, the decision to be considered for donation was not a question, but a necessity in order to see Jodi live and thrive.
Of course, live donor transplant is a major surgery with a difficult recovery for both the donor and the recipient, keeping each out of work for several months. It also takes a financial toll, costing upwards of $600,000 in surgical expenses in addition to ongoing costs for medication and treatment that will last the rest of Jodi’s life.
Even so, it was not a question in my mind to be part of this infamous “Gang of Eight.” I am part of what I consider an elite group including some of the most caring, generous and loving people I have ever been honored to know. It is also important for all of us to make the best of this situation, relying on both humor as well as love to guide us. We find strength in being connected and unified; our entire family is optimistic on what will come about over the course of the next several months. Knowing that there are people that care about Jodi as much as I do is genuinely reassuring. Everyone is looking at the same goal; to see Jodi happy and healthy.
This month, my mother left her midwifery practice in York, Maine for an extended medical leave. After a long career of “catching babies”, she is no longer working as a midwife. Jodi is loved and admired by the many family, friends, and patients whose lives she has touched with her gentle strength, generosity, and presence. A bond between a mother and child is something that she knows all too well. Throughout her twenty years of being a midwife, she has brought life into the world for hundreds of families in the seacoast area of southern Maine and New Hampshire. Jodi has also had three children of her own, as well as two grandchildren. As her youngest child and baby of the family, I can say that she has taught me the world and made me the person I am today; nothing is more important than seeing her receive the same life that she has given me.
My mother expects to undergo surgery in 2012. The “gang of eight” has started the process of a medical work-up to identify the best donor candidate, and family and friends are on the edge of their seats waiting to hear the outcome. As she prepares for her transplant, Jodi is both grateful for the full life she has lived and hopeful for the future. Jodi is surrounded by a loving and supportive network of family and friends. She is humbled by all that they have done and continue to do to help her fight back and reclaim her life from this disease.
We have been overwhelmed at the support and positive feedback we’ve gotten from the community. To read an article about Jodi’s story, “Life, Love, Hope: Midwife Needs Liver Transplant” from SeaCoastOnline.com, click here.
To hear from Jodi herself, check out this wonderful and emotional video:
To make a donation, or to find out more about Jodi’s story, visit HelpHOPELive.org
To connect with other adoring fans and supporters, make sure to “Like” Jodi’s Liver Team fanpage on Facebook