“The LeViness PLE and Single Ventricle Survivor Foundation”
My name is Joseph LeViness and I am a Single Ventricle Congenital heart disease Survivor being treated at the Cardiac Center at The Children’s Hospital of Philadelphia. With situs inversus L-transposition of the great arteries VSD. I have had 4 open heart surgeries eventually completing a procedure called a Fontan in 1998. In 2010 I was diagnosed with PLE Protein Losing Enteropathy for which there is no known cure. In 2011 two Stents were placed in me, one in the conduit itself and the second one in the right pulmonary artery. In 2012 I developed a mild case of liver fibrosis. In 2013/14 I have been in the hospital for treatments of IV Albumin and Lasix on regular bases, at times every 14 days. I'm taking many, many medications. 13 pills every morning, 10 pills in the afternoon and 15 pills in the evening. With all this going on I managed a job as well as to stay in school and keep my grades and GPA at 4.38. I was selected as a member of the National Honor Society and won the TEEN EXCELLENCE award for the Pemberton High School in New Jersey. In February 2014 I have been told by my Doctor (Dr. Rychik, who is the Director of the Single Ventricle Survivor program as well as by my Nurse CRNP Katie Dodds), that I won't be able to work anymore.
13% of children with the Fontan lifesaving operation develop a disease called Protein Loosing Enteropathy (PLE). This is a disease that has no cure and is life threatening as time goes on. (Ihave been talking to two excelant Phycians Dr. Etkin and Dr. Dorry) I have been diagnosed with PLE in 2010 and now the disease is getting much worse leading doctors to recommend that I start thinking of receiving a heart transplant. My doctors are talking to me as well as my parents, more and more about getting a Heart Transplant and preparing me for the process of being put on the heart transplant list. In June 2014 my Doctors approached me with the Idea of an experimental study. The Lymphatic Intervention is a procedure they didn't have much experience on PLE patients ... Well, we agreed to the procedure ... anything is better than a Heart Transplant!!! I had the first part of the experimental procedure done in early July. It took 8 hours for this procedure and that was only the first part, I went into CHOP for the second part of the experimental procedure on August 7th, 2014.
I'm showing alot of improvment as far as the swelling goes in my legs, my Albumen level improved as well, I'm now (11-24-2014) at 3.3 a number I haven't seen in years. I still strugle on daily bases with Migranes, swelling, cramps, dizzyness and chest pain ... but not as bad as it was like before the experimental procedures, I'm grateful to be alive and with this procedure I just might not need the Heart Transplant ... only time will tell. Please, Pray for me ...
This foundation will help kids, patients like me and others with PLE in the Single Ventricle Survivor Clinic at the Children’s Hospital of Philadelphia to research a way of finding a cure to Protein Loosing Enteropathy!
Please share this page with all your friends, the more people help the sooner we find a cure. I Volunteered for this procedure, because I want to live!
At age 19, I want help not only for myself but the other kids in need so that they can live and have a chance for a better and maybe pain free life, will you help me help others?
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- John LeViness
- Stephanie Merton Dahlquist
- Wayne Smith
- Andrew & Rosemarie Scheller
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