Jonathan Thorson's 2 Lungs plus 1 Heart

About a year ago, Jonathan began to notice that he was getting winded more often- but shrugged it off as being out of shape or a sign of not being a young buck anymore. Not much seemed to change until summer as he became shorter and shorter of breath. On July 2, 2023 while celebrating the 4th of July at his parent's lake home in Mentor, Minnesota, he had trouble breathing and went to nearest hospital and was diagnosed with walking pneumonia. Jonathan came home with antibiotics and hopes it would clear up soon.

In July, Jonathan had a 4 day stint in the hospital where the testing first began (M Health system). The diagnosis was congestive heart failure, edema, pulmonary hypertension (unknown cause) and noncompaction cardiomyopathy - a rare, genetical condition where the heart tissues in his right and left ventricles are spongy instead of muscle-like.

As he met with the specialists through the MHealth system (University of Minnesota), they were concerned with his heart condition and less concerned with his lungs (lung capacity seemed normal). He decided to ask for a referral to a doctor within the MHealth system that specialized in his condition and also sought out a second opinion through Mayo Clinics.

In September 2023, Jonathan headed to the Mayo in September. There, the doctors thought the heart condition was a red herring - not as much of an issue and definitely not the cause of everything Jonathan was experiencing. They believed it was a pulmonary (lung) issue. After a battery of testing and stays in Rochester in September and October, we landed on a diagnosis - congestive heart failure, hypoxia and pulmonary arterial hypertension (PAH) - and more specifically a rare subset of PAH, Pulmonary Veno Occulsion Disease. t's estimated that 1-2 in 10 MM ppl have this condition. This is not the lottery we wanted to win.

PVOD is a disease where the arteries and veins that transfer oxygen from the lungs to the blood stream/heart begin to thicken. While there are some quality of life treatments, the primary treatment is a lung transplant. Because of his right ventricle congestive heart failure and noncompaction cardiomyopathy, the Mayo transplant team decided that a double lung and heart transplant was in his best interest.

For more information on PVOD see, www.ncbi.nlm.nih.gov/books/NBK585129/#:~:text=Pulmonary%20veno%2Docclusive%20disease%20(PVOD,disease%20remains%20poor.%5B6%5D.

Once Jonathan receives the transplant, he will be hospitalized for about a month and then required to live in Rochester with a 24/7 caregiver (primarily his wife Ali) for the next 3 months. Jonathan and Ali (and other caregivers) will stay at the transplant house during this time. The house has common areas for cooking, gathering with other transplant patients, watching TV, laundry facilities and allows for the daily blood draws to be done at the house. There is also a designated area for visitors on site. Unfortunately the house does not allow anyone under the age of 18 to stay there, so Stella will be couch surfing between friends and family when Ali isn't home.

While Jonathan's health insurance will cover the majority of medical costs, the family will incur several out of pocket costs including insurance deductibles, lodging (the transplant house is $30 per night), groceries and meals, and other travel costs (the Mayo is located approximately 90 miles away from their home in Rochester, MN). In addition, Jonathan's parents live several hours away and will also incur travel and lodging costs when coming to visit. The family would also like to spend some weekends together with their daughter in Rochester-which will be additional lodging costs.

there are other uncovered costs. After surgery, Jonathon will be hospitalized for approximately one month. He is then asked to remain close to Mayo Hospitals for 3 months following surgery and have a caregiver with him 24/7 during that time. Here come the uncovered costs for family to remain with Jonathon. Jonathon and his caregivers can stay in the transplant house within Mayo but his daughter, Stella, cannot because of her age. This housing option provides a room and common areas for family to cook, do laundry and visit at a reduced rate bt all food and entertainment is not covered, When Stella comes to visit her father, they will need to stay in a motel. Food and gas will be on the family and caregivers as well as care for Stella in Woodbury.

We - Leslie Anfinson (Jonathan's mother-in-law) and Laurie Thorson Knox (Jonathan's sister) - have established this GoFundMe site to help Jonathan, his family and other caregivers with lodging and meals; travel (mileage and gas); and care, transportation and meals for Stella in addition to other out-of-pocket costs.

Jonathan was placed on disability for work in December 2023 after being hospitalized with pneumonia and will continue to on both short-term and long-term disability pay throughout most of 2024. In other words, he will be only receiving a portion of his salary for the majority of 2024.

With unforeseen costs that may arise, we hope the funds can help the family keep their heads above the water. We thank you all for the continue love and support. And we are grateful for the family that through their profound grief will be able to provide Jonathan with his 2 lungs + 1 heart.