Our lives were turned upside down in November of 2019. My husband noticed increased swelling in an area he previously had cancer and he went to the local hospital to get imaging done. The first question they asked was if he had a history of ascites – free fluid in his abdomen. That was a new finding for him – they did labs and told us that he needed more testing. The next day we went to Mayo Clinic in Rochester, MN and he had a ton of labs and imaging done. He was quickly admitted and they did his first paracentesis – they were shocked that it was chylous ascites. They told us that they felt his cancer had come back and prepared us for that. All the tests were coming back as chylous ascites of unknown origin. They sent us home with no hope – his only option was a Denver Shunt that would help keep the fluid circulating but not solve anything, They attempted an MRI Lymphangiogram and the contrast was stuck in his lower abdomen – PET Scan was negative for cancer so the shunt was palliative care. The team at Mayo told him to go on a low fat diet (less than 40g) and that was it.
Fast forward to February of 2020 and he was needing procedures weekly to drain the fluid. I vividly recall the Fellow coming in for consent and we said he was getting a shunt and there was no other option. He said “Did Dr. Maxim Itkin at Penn say there was no hope?” At that point we had never heard of Dr. Itkin or Penn Medicine. As they wheeled him into the procedure I called Penn and talked to one of his NP/s – we were accepted to the program for testing and evaluation just one month later! However, 2020 had other plans and the pandemic halted elective procedures. We were finally able to visit in July and he was admitted to the hospital in August of 2020. The pic on the left was the day he was admitted – 5 days after he was fully drained. Jason had several procedures and an open abdominal exploratory surgery – a part of his small intestine was twisted and had possibly interrupted the lymphatic flow in the small intestine. He came home for a month before we realized the fluid accumulation was getting worse. Due to worsening nutrition status, he was readmitted to the hospital and over the course of 38 days they were able to isolate the issue and he had a bowel resection. The biopsy of the small intestine showed Intestinal Lymphangiectasia. We finally had a diagnosis! His diet was modified even further – we found his threshold of dietary fat to be 5-7g per day. Chyle is formed in the middle of the small intestine via the digestion of fat. He was leaking chyle from the inside out. It was not an easy recovery – he would have recurring bowel obstructions and his diet was so limited he was malnourished. He had one more surgery that would restore his quality of life – he went from barely surviving to thriving! The team at the University of Pennsylvania saved his life when other institutions referred to hospice. Penn is a Lymphatic Center of Excellence and the only program who was willing to help and never gave up on him! He went from using a wheelchair to walking 45 minutes without stopping!
Disclaimer – THIS IS NOT MEDICAL ADVICE! IF YOU HAVE ANY QUESTIONS PLEASE CONTACT YOUR MEDICAL PROVIDER!