About Luis

Dr. Luis DelCastillo (Kinkin) was a healthy vibrant man. He was born in 1967 in Caracas, Venezuela. As a young man, Luis loved to ride his mountain bike in a small town called “El Jarillo” and around Caracas where he lived. He studied dentistry in Venezuela and later came to the United States to further his dental education at Tufts University School of Dental Medicine where he became a Prosthodontist and currently is a professor at the Dental School and in addition, practices dentistry in the Boston area. He is an accomplished musician who plays guitar and bass and often performed with his band at local venues. When Luis journeyed to Boston, Massachusetts in 2003, he didn’t stop his passion for music, dentistry and his love for the outdoors. On a typical weekend Luis would enjoy time with his friends riding his bike, snowboarding and play with his band.

In 2008 he noticed a persistent cough that has lasted several months but Luis thought it was allergies or asthma. When he visited his PCP, immediately was referred to a pulmonologist. After several tests and a lung biopsy, he was diagnosed with Interstitial Lung Disease (ILD). His lung capacity was 30% of the normal lung capacity for a man of his age. Luis went on steroid therapy for several months and his lung capacity stayed stable for 5 years but his future and the progression of the disease was unpredictable. He continued living his life as best and as normal as he could.  He didn’t feel limitations. He continued working on his private practice and teaching at Tufts University School of Dental Medicine. He was playing bass guitar every weekend with his band “Open Bar Band”. He and his wife Maria Eugenia welcomed their two beautiful daughters, Emiliana and Victoria. He was still riding his bike and didn’t give up to the idea of being cured and being stable for the rest of his life.

 

Things started to change around 2014 when he noticed something was wrong. He felt winded easily. His hands started to get less flexible and painful ulcers were developing on his fingers.  The cough was still persistent. At that moment, Luis was diagnosed with Systemic Sclerosis (SSc) also know as Scleroderma with ILD. Systemic Scleroderma with ILD is an autoimmune disease that results in an overproduction of systemic collagen and scaring of the lung tissue which results in a reduction of lung capacity and  thus, quality of life. As a consequence of the SSc, Luis also developed a Pulmonary Arterial Hypertension (PAH). There is not a cure for Scleroderma or Pulmonary Hypertension. Immunosuppressant agents are usually prescribed to prevent the progression of the Scleroderma but ultimately a double Lung transplant was the only hope for Luis to continue living, working, his passion for music and doing what he loves the most, spending time with his family and friends

 

Luis’s disease was manageable until February 2016 when he started experiencing an increase in his shortness of breath along with a generalized weakness throughout his whole body. He was hospitalized with pneumonia at Brigham and Women's hospital where the lung transplant team was consulted.  Luis underwent a full evaluation. During the evaluation, the doctors found an abnormal esophageal condition where his esophagus didn't have the peristaltic movement needed for normal swallowing. Due to these collective findings, Brigham and Women Hospital along with the Cleveland Clinic turned him down for a transplant option. This news was devastating and very hard for Luis and his family to cope with.  Nevertheless, Luis never lost hope and kept a positive attitude.

Luis has been participating with his  Pulmonary Rehabilitation to try to maintain his pulmonary function and prepare the body and strengthen the muscles for a lung transplant at Massachusetts General Hospital where he has been considered as candidate . At this moment Luis needs oxygen to walk and to sleep. His physical activity is limited. He is not able to be outdoors in the cold or for long walks. He needs new lungs. We feel Luis was blessed to have MGH accept him as a candidate for the lung transplant procedure and hope and pray for a positive outcome so that Luis can one day, return to the full and vibrant life that he once led with his family and friends.

 

Luis is facing a life-threatening disease and major surgery. The recovery time for him is unpredictable; it could go from 6 months to a year if no complication arises in the process.  Doctors often describe the transplant process as “exchanging a disease for another” because of the side effects of the medications, Luis could develop diabetes and renal failure. He hopes and prays for a speedy recovery and to be able to go back to work to his patients and to his students at Tufts.  He hopes new lungs give him a second wind to life.  He dreams on riding his bike beside his two daughters, teaching them to ride on a snow board and to see them grow.

 

Luis is very much appreciative of your visit to this website and for taking time to read and learn about him.  If you wish to leave him a note you can do it here