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May 12, 2018 Latest post:
Oct 3, 2018
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Gene Leppala is a 49 year old husband, father, brother, son, and friend to all who meet him. He also needs a new liver. He was diagnosed with cirrhosis of the liver February 2014. Since then he has been able to manage his condition mostly through medications and diet, but has had numerous medical appointments and procedures to treat the complications such as excess fluid in his body, jaundice, portal hypertension, ruptured varices, and hepatic encephalopathy. He was hospitalized 3 times in the last 4 years due to complications.
In early December 2017, Gene’s gastroenterologist referred him to the Mayo Transplant program in Rochester, MN. He has been through multiple assessments and is now under their care. He has blood work done weekly to keep them updated on his ammonia, sodium, bilirubin, creatinine, and INR levels, the last 4 making up his MELD (Model for End-Stage Liver Disease) ‘score’ The MELD ‘score’ defines how urgently one needs a liver transplant in the next 3 months. He is currently waiting to be listed on the liver transplant list at Mayo in Rochester MN. Gene and Carolyn will be going to Rochester again June 2018 for follow-up appointments and will hopefully listed on UNOS (United Network for Organ Sharing). Once listed, we will wait for the call that there is a new liver.
After the transplant, he will need to stay in Rochester for a month with at least 1 caregiver. Gene’s wife Carolyn and sisters, Lori and Kelly, will share that responsibility by taking turns staying in Rochester. Once home he will still not be able to return to the workforce for several months, and will need to be looking for all new employment.
Until May 2018 Gene was working full time and had insurance through work. Unfortunately he was let go from his job . He has days he feels great, and others where he is tired and weak and would not seem hireable to employers. He will be applying for social security, unemployment, and whatever else he can.
He will also not be able to participate in the care of his 2 daughters, who both have their own medical, developmental, and mental health conditions. Their oldest daughter is on the Autism Spectrum as well as having celiac disease and general anxiety disorder. The younger daughter has growth and cognitive delays associated with autoimmune hypothyroidism (Hashimoto’s) and celiac disease. These conditions requires multiple therapies for both girls each week, as well as maintaining a completely gluten free household.
We will have multiple medical as well as household bills accumulating. Carolyn will also be missing work when she needs to be caregiver. Our families can and will offer as much help as they can.
We will take you on this journey with us, and keep you as updated as we can.
****Specifics of Complications and Symptoms***
Excess fluid in his body. Ascites and swelling have been mostly controlled by a low sodium diet and medication, but at one time he did require a procedure to drain the fluid from his abdomen. Recently he needed an Albumin Infusion due to his Ascites.
Jaundice. Jaundice occurs when the diseased liver doesn't remove enough bilirubin, a blood waste product, from your blood. Jaundice causes yellowing of the skin and whites of the eyes and darkening of urine. Gene has been jaundice for about 2-3 years.
Portal hypertension. After having an allergic reaction to a blood pressure medication which caused him to break out in psoriasis plaques over 70% of his body, the doctors found the correct medication for his portal hypertension, which is a high blood pressure in the vein that goes from the liver to the heart. Due to the pressure, he did have a varice rupture on his esophagus which put him in the hospital for several days. After that, his doctors did endoscopies (looking down the esophagus with a camera to look for and “band” and varices so they cannot rupture) every 4-6 weeks until they were confident that once a year would be safe.
Infections. Gene has been more prone to infections and illnesses as his body cannot fight them off as well. This winter he has been suffering a sinus/upper respiratory illness for several months. Post transplant he will be extremely susceptible to infections and will be on medications or that the rest of his life.
Hepatic encephalopathy. In February Gene was hospitalized again when the ammonia levels in his body got too high. He was given another medication to help prevent the buildup of toxins in your blood due to poor liver function. His liver can no longer effectively filter these toxins and when they go to his brain he can experience mental confusion and difficulty concentrating. Hepatic encephalopathy symptoms may range from fatigue and mild impairment in cognition to unresponsiveness or coma. He has been given another medication to help remove toxins from his system.