Ross M Rudnitsky

I who was born June 17, 1988 with several birth defects that affected the mid-line of my body known as VACTER syndrome. Each letter represents a different part of the anatomy and of the five letters, I have four of the anomalies.

In my early years of life, I had four bowel surgeries, tracheal surgery, four open heart surgeries, and over 10 other heart related procedures.

I underwent the ground breaking 3-stage Fontan surgery performed by Dr. Norwood at Children’s Hospital of Philadelphia (CHOP). The Fontan operation results in the flow of venous blood to the lungs without passing through a ventricle. This procedure was performed because I born without a right ventricle and other heart anomalies. Throughout the first three years of my life, me and my mom (Donna) spent months in and out of the hospital while I had surgeries. We went to monthly and sometimes weekly appointments at CHOP and there were many ups and downs until my birth defects were “fixed”.

Around 1996 I was diagnosed with PLE (Protein Losing Enteropathy) which is a result of my heart defect and surgery. Approximately 5% – 10% of Fontan patients develop PLE and there is no cure. Over the course of the next 20 years, some research has been done into why some Fontan patients develop PLE; however, because it only affects a small population of individuals, research has been slow and slower yet are any solutions. When someone has PLE, the lymphatic system is significantly affected and the body is not able to handle the amount of lymph fluid in the body; therefore, it leaks into various part of the body (intestines, legs, belly, etc.) and your body is depleted of blood protein (albumin). Albumin is essential for our bodies to function properly, fight off infection and to help keep blood circulating.

Because of the PLE, I became really sick over the next several years and in 2000, I underwent a Fontan revision, a pacemaker was inserted and a stented fenestration was put in to even out the pressures in my heart. These procedures were known to relieve the symptoms of PLE. These fixes put the PLE in remission for 17 years; however, in the latter part of 2017, the PLE started coming back and I started retaining fluid in my legs. Since that time, my PLE has back with a vengeance and fluid has not only built in my ankles but up my legs and into my abdomen and around my lungs making it hard for me to breath.

Since the beginning of 2019, I have been in the hospital twice because my body has been accumulating and storing a lot of fluid. I have had to go on IV diuretics and albumin to help keep the fluid down. The first hospitalization was for 5 days and the second hospitalization was for 12 days as I gained 18 pounds of fluid in one month.

Another complication of the Fontan procedure is the way blood flows from the body to get oxygenated. Because I only has one pumping chamber which is the left ventricle that pumps blood to the body, the blood flows passively to the lungs to get oxygenated and blood sludges back into the liver causing scarring. This scarring, over time, caused cirrhosis of the liver which I was diagnosed with in 2013.

The combination of my original heart defect, the liver cirrhosis and the recurring development of PLE (of which there is no cure) has created a need for me to have a heart and liver transplant in order for me to live.

I started going through the evaluation for the heart transplant in November 2018 and I had a heart catherization which is the last test I needed so my case can go to the committee at The University of Pennsylvania so I can be approved for a heart transplant. Once I am approve for a heart, I will go through the evaluation process so I can get a liver as well. In my case, the transplants will need to come from the same donor and the surgery will be done at the same time.

Family and friends of Ross Rudnitsky are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with transplantation.

Ross has chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility to the full extent allowed by law for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.

For more information, please contact Help Hope Live at 800.642.8399.

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