Chelsea's 2nd Transplant Journey
Donation protected
Chelsea is a writer, poet daughter, friend cousin and lover of life. From an early age she has dreamed of traveling the world, living a big life and growing old surrounded by the people she loves and bringing light and joy into the lives of others. At the tender age of 16 when most kids are just beginning to discover who they are and think about their futures, Chelsea was diagnosed with a rare disease – Lymphangioleiomymatosis or LAM.
A rare and very progressive lung disease, LAM is characterized by an abnormal growth of smooth muscle cells that invade the lung tissues. In some cases, these abnormal, muscle-like cells grow out of control and form cysts in other organs or tissue including the kidneys and lymph nodes. In the Lungs, the muscle cells create blood pockets or cysts that constrict your airways. Over time the cysts can rupture causing excruciating pain. LAM cells grow throughout the lungs and destroy normal lung tissue creating holes in the lung tissue. As a result, air is unable to move freely in and out of the lungs, depriving vital organs and tissue of essential oxygen.
Chelsea and the estimate of 250,000 people who suffer with LAM experience fatigue, shortness of breath, persistent cough and coughing up of blood, severe chest pain, pneumothorax (lung collapse), pleural effusion (fluid in the space that surrounds the lungs), and angiomyolipoma (kidney tumors). Without medical intervention, deprived of oxygen LAM sufferers suffocate. Sadly, there is no cure for LAM. There are only drug treatments which can possibly slow the progression of the disease and lung transplantation.
Since being diagnosed, Chelsea has undergone MULTIPLE procedures including bronchoscopies for diagnosing and therapeutic purposes, several blood transfusions, lung biopsy, insertion of chest tubes to re-inflate her lungs, and a painful and extreme procedure called pleurodesis to prevent pleural effusion. By the age of 18, the LAM disease began to progress to the point where Chelsea was required to use supplemental oxygen while under physical exertion and while sleeping. At age 21, she required oxygen 24 hours a day, due to her declining lung function.
In 2014, Chelsea was referred to the Lung Transplant Program at New York Presbyterian Hospital/Columbia University Medical Center as her lung function continued to decline and oxygen requirement increase. After evaluation she was waitlisted for transplant after two years of waiting, Chelsea was dual listed for transplant at the Hospital of The University of Pennsylvania and in September 2016 she underwent bilateral lung transplant. For the first six months following transplant Chelsea seemed to be recovering well and healing from the surgery until contracting Respiratory Syncytial Virus (RSV), a type of bacterial infection called Clostridium Difficile (CDIFF) and several bouts of pneumonia. Eventually Chelsea began to experience Antibody Mediated Rejection (AMR) – her body was rejecting her new lungs.
The infections and AMR have caused irreversible damage to Chelsea’s lungs. Her only hope at this stage is a second bilateral transplant. As difficult as Chelsea’s journey has been and despite the unanswered road ahead, she continues to be a gift of light to all who know her and an inspiration to those who are also facing their own challenges.
Over time, this illness, hospitalization, treatments, transplant, travel to specialists in other states, and multitude of bills, Especially the use of electricity for twenty-four hour oxygen treatment has placed a very heavy toll on Chelsea and her family. Especially on her mother Nicole, Chelsea’s sole provider as Chelsea’s father passed away.
As family and friends watch Nicole devote the vast majority of her time, energy and finances to Chelsea’s care, as any loving mother would, this is our opportunity to show Nicole and Chelsea they are not alone. Let’s share Chelsea’s story, show our support, and lift their spirits by lifting some of their burdens. In doing so, we hope to inspire others to do likewise. Please remember no donation is too small. This is the only gofundme account for Chelsea.
A rare and very progressive lung disease, LAM is characterized by an abnormal growth of smooth muscle cells that invade the lung tissues. In some cases, these abnormal, muscle-like cells grow out of control and form cysts in other organs or tissue including the kidneys and lymph nodes. In the Lungs, the muscle cells create blood pockets or cysts that constrict your airways. Over time the cysts can rupture causing excruciating pain. LAM cells grow throughout the lungs and destroy normal lung tissue creating holes in the lung tissue. As a result, air is unable to move freely in and out of the lungs, depriving vital organs and tissue of essential oxygen.
Chelsea and the estimate of 250,000 people who suffer with LAM experience fatigue, shortness of breath, persistent cough and coughing up of blood, severe chest pain, pneumothorax (lung collapse), pleural effusion (fluid in the space that surrounds the lungs), and angiomyolipoma (kidney tumors). Without medical intervention, deprived of oxygen LAM sufferers suffocate. Sadly, there is no cure for LAM. There are only drug treatments which can possibly slow the progression of the disease and lung transplantation.
Since being diagnosed, Chelsea has undergone MULTIPLE procedures including bronchoscopies for diagnosing and therapeutic purposes, several blood transfusions, lung biopsy, insertion of chest tubes to re-inflate her lungs, and a painful and extreme procedure called pleurodesis to prevent pleural effusion. By the age of 18, the LAM disease began to progress to the point where Chelsea was required to use supplemental oxygen while under physical exertion and while sleeping. At age 21, she required oxygen 24 hours a day, due to her declining lung function.
In 2014, Chelsea was referred to the Lung Transplant Program at New York Presbyterian Hospital/Columbia University Medical Center as her lung function continued to decline and oxygen requirement increase. After evaluation she was waitlisted for transplant after two years of waiting, Chelsea was dual listed for transplant at the Hospital of The University of Pennsylvania and in September 2016 she underwent bilateral lung transplant. For the first six months following transplant Chelsea seemed to be recovering well and healing from the surgery until contracting Respiratory Syncytial Virus (RSV), a type of bacterial infection called Clostridium Difficile (CDIFF) and several bouts of pneumonia. Eventually Chelsea began to experience Antibody Mediated Rejection (AMR) – her body was rejecting her new lungs.
The infections and AMR have caused irreversible damage to Chelsea’s lungs. Her only hope at this stage is a second bilateral transplant. As difficult as Chelsea’s journey has been and despite the unanswered road ahead, she continues to be a gift of light to all who know her and an inspiration to those who are also facing their own challenges.
Over time, this illness, hospitalization, treatments, transplant, travel to specialists in other states, and multitude of bills, Especially the use of electricity for twenty-four hour oxygen treatment has placed a very heavy toll on Chelsea and her family. Especially on her mother Nicole, Chelsea’s sole provider as Chelsea’s father passed away.
As family and friends watch Nicole devote the vast majority of her time, energy and finances to Chelsea’s care, as any loving mother would, this is our opportunity to show Nicole and Chelsea they are not alone. Let’s share Chelsea’s story, show our support, and lift their spirits by lifting some of their burdens. In doing so, we hope to inspire others to do likewise. Please remember no donation is too small. This is the only gofundme account for Chelsea.
Organizer
Nicole Campbell
Organizer
Arverne, NY