As woman’s kidney condition worsens, family seeks help
SARANAC LAKE — A local woman with a rare health condition is now hospitalized, and her family is asking for help.
Laura Parmington Hall, 27, of Saranac Lake was born with autosomal recessive polycystic kidney disease, with congenital hepatic fibrosis. Back in April 2006, she received a life-saving liver transplant at the Children’s Hospital of Pittsburgh. After her transplant, the first few years were rough and she developed CMV, a virus she received from her donor. But despite this tough situation, she was still able to graduate high school in East Aurora, Illinois, attend Trocaire College in Buffalo and become a registered nurse.
Polycystic kidney disease is one of the most common inherited genetic diseases in humans. It comes from a mutation that causes the formation of numerous cysts in the kidneys, liver and other organs. According to Palladio Biosciences, a company that aims to develop medicines for kidney diseases, “compared to a normal size kidney, which is about the size of a human fist, polycystic kidneys can grow as a large as a football and weigh up to 38 pounds each. This can lead to kidney failure and the need for dialysis or kidney transplantation. In the United States, approximately 2,500 new people with polycystic kidney disease require dialysis or a kidney transplant every year.”
Laura’s boyfriend Ray Ross, a volunteer firefighter with the Paul Smiths-Gabriels fire department, said that “most people run through life head down, not paying attention. Laura can find beauty and inspiration in everything. She doesn’t ever act like she was born with an illness. … She acts like she is thankful to be given another day every day to experience life.”
As she was working as a registered nurse at the Children’s Hospital of Pittsburgh, Laura was only one course away from receiving her Bachelor of Science in Nursing degree when her medical condition again worsened. She needed a kidney transplant, forcing her to move back to Saranac Lake to be with family.
Her mother, Beth Hall, said Laura “never complains and is a real advocate for her own health care.” She also said Laura’s “goal in life was to become a nurse and give back to other people like those who have helped her.”
Laura has been on the donor list for another organ transplant since June 8, 2017, out of Massachusetts General Hospital in Boston. She is also being worked up to start dialysis in the near future while she waits for a kidney.
Recently her health took another turn for the worse. After many costly trips back and forth between Saranac Lake to Boston for various tests, her results revealed that she has sepsis, which then brought her to a hospital in Burlington, Vermont.
Sepsis is a serious medical condition caused by an overwhelming immune response to infection. Immune chemicals released into the blood to combat the infection trigger widespread swelling, which leads to blood clots and leaky vessels. This impairs blood flow, which damages the body’s organs by depriving them of nutrients and oxygen.
Laura has formed a large blood clot in her heart, which is life threatening. She was recently moved from the Burlington hospital to Massachusetts General Hospital in hopes that there are more advanced techniques in removing this clot; however, there is a high risk of fatality since breaking up the clot could cause a pulmonary embolism, or prevent blood flow to her heart.
Twenty-seven years of medical expenses have left the Hall family in “a really precarious situation,” Beth Hall said. Laura’s “goal and hope is to be able to pull through this, and it’s going to be a long journey.”
That journey also requires a daunting financial burden. The cost for travel, hotels, meals on the go and parking, all on top of medical expenses and high health insurance payments, have put a heavy weight on the shoulders of this family. Both of Laura’s parents have been dedicated to their daughter’s care since she was diagnosed at birth, which has kept them from being able to work.
A GoFundMe campaign has been created, and the family says any help at all is appreciated: https://www.gofundme.com/lauras-kidney-campaign.