Lungs for Lia! !
October 2016
Lia Young is the Assistant Director of Nursing at Texas Scottish Rite Hospital for Children. She loves her job, her husband, and her 5 kids. In January 2014, after the birth of her youngest daughter, Lia found out her recurring cases of pneumonia were caused by a disease called Scleroderma. Scleroderma is a disease that causes hardening and tightening of tissue. In most people Scleroderma only affects the skin, but in Lia’s case the hardening of tissue has invaded her lungs. There is no cure for Scleroderma, and the only thing that will save her life is a bilateral lung transplant. Lia has been at UT South Western Medical Center for the last 4 weeks with her condition drastically declining. She has a 1% chance of matching for a pair of lungs in Dallas. Unfortunately Lia’s condition declined quicker than expected and she was hospitalized with very high flow of oxygen being administered. On 10-17-2016, the high flow oxygen wasn’t enough and they had to place her on a ventilator (A machine that inserts a tube down the trachea and into the lungs to mechanically “Breathe” for her), while her husband sat in traffic trying to get to the hospital. Her family was told that once on a ventilator, she had two weeks for her lungs to arrive before removing the ventilator and placing her on comfort care
After much prayer with the family and a series of events in the last week her husband, Robert, tirelessly searched, emailed and called some of the nation’s best doctors that specialize in high risk lung transplants and by a miracle things are working out to fly her up to Maryland this weekend to have a better chance (20% chance of a match in Maryland versus 1 % match in Dallas). She will have to fly while being on a very specialized ventilator called ECMO, with multiple healthcare providers flying with her.
PLEASE join us in continuing to pray for lungs for Lia, for the family and for ALL of the medical team. Please prayerfully consider donating to help the expenses that will come with this. Your donations will help with the following needs:
-Robert and family to fly back and forth to Maryland, they are unsure how long they will be there.
-A place to live and transportation for Robert and family in Maryland
-Food and essentials for Robert and family while they are in Maryland
-Care for their 5 children in Texas. The youngest ages 3 and 7, not able to visit.
-Medical expenses that insurance can’t cover.
-For updates Starting 10-20-2016 and moving forward, please see update number #84.
-Scroll down and subscribe to receive updates about Lia’s story.
Thank you in advance for sharing our story, your fervent prayers, and your contribution.
October 2015
My name is Lia Young. My husband, Robert, and I live in Denton, TX and have a beautiful family of five kids ranging from ages 2 to 20. I am a Registered Nurse, and Robert is self-employed. He manages our copier consulting business, RBC. We have launched this Go Fund Me account to help cover expenses associated with my impending double lung transplant.
I have been dealing with lung issues since I was diagnosed with pneumonia in both lungs in 2011. At that time, the Doctors thought that the pneumonia was a result of aspirating water on a waterslide during summer vacation. It took three months, three hospitalizations, a lung biopsy, and lots of antibiotics and steroids to get me better. Honestly, I haven't been the same since that episode. In 2013, at 33 weeks pregnant, I was again diagnosed with pneumonia in both lungs and admitted to the hospital. At 35 weeks, the amount of oxygen needed to maintain a normal level for Londyn and I became too much. Londyn was delivered via c-section, and I was sent to the ICU and placed in a coma. I was treated aggressively and discharged home after two weeks. Six months later, when an annoying cough and shortness of breath came back, I didn't take pneumonia as the reason. I requested a referral to the best respiratory hospital in the country, National Jewish Hospital in Denver, Colorado. In January 2014, I spent two weeks at NJH. After reviewing my medical history and running several tests, they diagnosed me with Scleroderma and Nonspecific Interstitial Pneumonia. They told me that my "pneumonia" in 2011 was not caused by aspirating water, but from Scleroderma. They informed me that I would most likely need a double lung transplant at some point in my life because the damage to my lungs was significant, I was young, and my life expectancy was long. Since then, my care has been managed by the Transplant Team and Pulmonologists at The University of Texas Southwestern in Dallas. We have tried various immunosupressive therapies, including chemotherapy over the past six months. My breathing tests remain stable, but it is becoming more challenging to perform basic tasks and more breaks are necessary to complete these tasks. The changes in the weather trigger "flare ups" that cause coughing, shortness of breath, and fatigue. My doctors had a heart to heart with me and strongly encouraged me to become active on the transplant list. They say I'm the perfect candidate but don't know how long the window of opportunity will be open. Right now, the only thing wrong with me are my lungs. After praying and discussing options with my family, I decided to become active on October 1, 2015.
Thankfully, we have medical insurance and short term disability. However, we have learned from the transplant financial counselor and several post transplant patients that there will be costs associated with the transplant that insurance will not cover. I will be in the hospital for 2 - 3 weeks and off of work for 3 - 4 months. I will not be able to drive and must have someone in the house with me 24/7 for the first 6-8 weeks after surgery. I will have 2 - 3 appointments per week in Dallas during the first 6 - 8 weeks after discharge. In addition, I will start an aggressive prescription drug regimen that will help fight organ rejection. These meds are not cheap and in some cases cannot be generic. 
