“HEART OF THE BULL”
Tom Bull, a beloved member of the Maine community was born with a congenital heart defect, which was relatively asymptomatic until approximately 2 years ago. Since then, Tom’s health has declined rapidly. In July 2018, Tom was placed on the national heart transplant list as a “Status 1A”, and at that time began adjusting to life inside the hospital while he waits for a lifesaving and necessary organ.
November 7, 2018
“If you don’t have anything nice to say, don’t say anything at all.” Excellent advice, but sometimes it is just as important to speak your truth. Before I let ‘er go for a sec, please know that Tom and I are floored by the generosity of so many who have donated to his current and future medical expenses. Thank you!
Tom is hitting the wall. Every day, he has a constant parade of doctors and nurses and techs and coordinators, etc. He is bored, but he doesn’t get enough time alone to concentrate on German or guitar lessons . . . or even read much. He is on a lot of medications, which he doesn’t like at all. They get in the way of concentration and plenty else. Tom is watching a lot of TV, and he has a big screen and YouTube TV, so that’s good. “Letterkenny,” a Canadian comedy has been balm for both of us. Tom has plenty of visitors, but he is struggling. There is very little he can to do help me (or anyone of a handful of essential players) keep it together. He hates that. To put it in perspective, since July 23, Tom has been outdoors twice for less than an hour each time. He must call a nurse to get unhooked before he can take a dump. When he has the energy, he barely has the health to walk 400 yards. When he can, he must be assisted by a nurse.
Tom is at the top of the heart transplant list. The urgency and geographical criteria for heart transplants changed on October 18. We are not sure how this will or will not help Tom get a healthy donor heart sooner, but we are keeping the faith. Tom has been in the hospital for going on 4 months. We were told to expect he would wait for a donor heart for 6, 9, or 12 months. Maybe more. Tufts has performed plenty of heart transplants since Tom was admitted, but during this time, Tom had to get to the top of the list and now it is a matter of waiting for a match.
We sold our house. I am staying with friends. Last night, Cathy made a delicious seafood pasta dish, and PJ made a delicious salad. I fell asleep before 8 p.m. This morning, I walked down the street, through a state park, right onto the beach! Wow! So lucky! We have more human support than anyone could hope for. The struggle, however, is no less real.
The Tufts team is A+. We are grateful to them and to all of our family and friends for everything. If you think you know a joke that Tom hasn’t heard or doesn’t know, please give him a jingle. Thank you.
Love and Light!
Molly & Max
October 19, 2018
Thank you Rising Tide! We have so many people to thank for their support and contributions. We do not want to leave anyone out! Huge thanks to Rising Tide, Nonesuch Brewing Company, Willamette Valley Hops, Run of the Mill Public House, Foundation Brewing Company, Mariner Beverages, Aroostook Beverage Company, Greg Drouin, Jane Campbell, Mark Doyon, and SO MANY MORE for their recent contributions.
Tom has been on the waiting list for a donor heart for more than 3 months, and he is approaching the 3 month mark in the hospital. We are working hard to keep our spirits up. Your visits, notes, cards, texts, etc. are a huge help! Thank you!
On October 8, Nonesuch Brewing Co. hosted a golf tournament, with proceeds generously donated to Tom’s fundraising campaign to help cover uninsured costs of a heart transplant. After the tournament, USM Quality Assurance Lab Director and Chemistry Professor, Lucy Benedict, brought her neighbor, Katie, to the tournament reception. Katie is a feisty, funny, happy, healthy woman who had a heart transplant 29 years ago! It was so nice to be able to talk to and hear from a person who stands in Katie’s shoes. It was so thoughtful of Lucy to think to introduce Katie to me. Tom was delighted to hear of this new connection.
Our home sale is scheduled for 10/26. It will be difficult to leave a neighborhood like no other, but downsizing is something we have been talking about for a couple years now. We have no intention of falling too far out of touch with any of so many wonderful neighbors. This winter, I (Molly) will stay with friends who live closer to the brewery. Hopefully we will find a new home better suited to “post-transplant life” before too much time passes.
The techs, nurses, PAs, and doctors at Tufts continue to provide top notch medical and human care to Tom. We are grateful. They all give me and Max a warm welcome when we arrive for our weekly stays with Tom, no matter the hour. Tom’s family and friends visit often.
Thank you again for your support. We will keep you posted. Lots of Love!
Photo Galleries (1)
November 1, 2018
Wishing you strength and love! Namaste, Downdogs at Dirigo & Lindsey M.
November 3, 2018
We're in your corner, Tom. Hoping for a heart to come your way.
October 17, 2018
From the proceeds of Corazon Del Toro at Rising Tide!
Rising Tide Brewing Company
October 11, 2018
Hope you are comfortable. Do you have to turn off the games when Cora goes to the bullpen? Thinking of you.