Toby was originally diagnosed with liver failure in March of 2021. His body was stable until the end of 2022 and he was taken to the hospital after being super stubborn on Dec. 28. During that hospital stay, he was diagnosed with End Stage Liver Disease in January 2023. They told him that if we had not taken him in that night, he would have died in his sleep. They also told him that he had around 6-12mo to live. 

Since then, he has been every week for paracentesis, multiple doctors appointments monthly and takes 15 medications daily. He has had to have several EGD procedures for varicose veins in his esophagus. He struggles daily with pain, has trouble walking, depends on oxygen most days and the long term effects of the liver failure have started to affect his memory and speech. 

In August of 2023, he was referred by his Gastroenterologist to Barnes Jewish Hospital in St. Louis for Liver Transplant evaluation. After the first evaluation, they determined that his body was not yet ready and there were things he needed to do before he could be listed. 

In February 2024, we made another trip to Barnes for a 6mo follow-up and more testing. Followed by a second trip in March. They called us in April 2024 and let us know that they had decided that he would be put on the transplant list. We are now awaiting the call. 

Toby will have to have a donor that has passed, due to the damage to his liver, he cannot have a ‘living donor'. He could spend many days/weeks in ICU after transplant and then we have to spend up to 8 weeks in St Louis post-transplant. We live 5 hours from the hospital, so we are required to stay there until he is fully released. 

While he is in the hospital, insurance will not cover my accommodations. I am hopeful to get into the housing that is $30/night for families and recipients. But, we are a household of 4, currently living on one income and saving up has been impossible. We will have to rent a car, as the one I have is not able to make the trip. I will also have to take off of work and after all of the appointments and trips already this year, I have limited PTO available, so a lot of this time off will be unpaid. 

We have 2 children, pictured with their dad. They will stay with family during this process and I will need to also provide for them as well as continue to pay our rent, utilities, etc. This has brought a lot of stress into my life and I am not a fan of asking for help, so I am doing this with a lot of anxiety attached. I thank everyone from the bottom of my heart if you can help, even if it's just with positive thoughts or a prayer.