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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.

Updates (12)

May 2, 2019

Happy Spring! It has been a while since our last update.

Tom is doing well. Recovery is going well, but it is slow. Because of the risk of rejection and infection, the first year is a lot of “the boy in the bubble.” Still, Cardiac rehab 3x/week is going well, and Tom is getting out to walk as much as possible. A couple of social events here and there. When Tom “pushes it” though, he invariably gets wiped out to do much of anything for a couple days following. Tom is tired a lot, which is normal. The anti-rejection drugs are working well so far, but the side effects are yucky.

We are working hard to sell the brewery. Post-transplant, Tom will not be able to continue his brewing career, and it will be many months before we have even a remote idea about how much and what kind of income producing work he may be able to do. On one hand, this is a “dream killer.” On the other, we would welcome as simple and less stressful life as much as possible. I am not able to simultaneously be a wife, primary care giver, small law practice owner, and a general manager of a start-up brewery. Slacker! Trying to do too much has taken a toll spiritually and financially. I need to be better equipped and capable for the realities of our “new life.”

I am anxious about “what’s next.” Getting out from under the brewery is the #1 priority. After that, building a new home of our own. The state of the health insurance system is preventing us from selecting where we will live. We would like to stay in Maine, but there is only one health insurer (Harvard Pilgrim) in the state that covers the medical professionals who make up Tom’s transplant team at Tufts. Approval or disapproval by the state of annual insurance company “rate requests” determine whether or not health insurers continue to offer coverage in Maine. This information is not typically released until late fall. It’s extremely unsettling. We may have to move to MA if Tom desires to keep the same excellent medical team. I am trying to get answers we need so we can at least start to make a general plan for our “next chapter” before it gets cold again. For now, we are extremely lucky to be living in Tom’s childhood home in Bath. Tom’s parents planned to sell the house this summer, but they have dug deep and are extremely generous and kind to let us stay there until we can figure things out. It’s a lot of driving, but I try to think of it as “$5/trip unwind time.”

I am trying earn as much money as I can while keeping all the balls in the air. It is unbelievable how much “lost time” accrues. I suspect another serious fundraising effort will be necessary before the end of the year, but for now, please accept our thanks and deepest gratitude to all who have given money, time, support, and love.

Tom is getting stronger. We now walk at the same pace! He cooks dinner for me almost every night. Some days he feels lots better than others. Our dog, Max, always makes us feel better.

People often tell me that they leave messages for Tom about visiting, and they seem concerned that he doesn’t call or text back. A note on that– The recovery and the drugs are ROUGH! Tom doesn’t know how he will feel from one day to the next. Tom loves visitors and being as active as he can, but because of the circumstances of recovery, he cannot plan more than a day in advance— usually less. Here are some guidelines—Excluding Monday, Wednesday, and Friday mornings (cardiac rehab), if you find yourself near Bath, Maine, please feel free to give Tom a shout to find out if . . . in the next couple of hours or a day from then . . . he is up for a visit, a walk, a drive to the beach, a club soda, or maybe even a beer. If you need Tom’s contact information, please email me at [email protected]

Thank you.

Love and Light!

January 11, 2019

My list is 10 miles long, and I am 20 miles behind. Thank you to everyone here and everywhere who has offered support in so many ways. Tom is healing. New Year’s Day, we had a beautiful day touring the greater Harpswell neighborhood, including Tom’s childhood home in Bath. Away from home, Tom carries a walking stick. Tom walks slowly and not too far without resting. Below the waist, he is Flat Stanley– he lost so much muscle during 2018, most of which was spent in the hospital, and the last of this time included 12 days 100% bedridden. Tom’s physical therapy started in earnest yesterday, so . . . YEA! Two of the principal anti-rejection drugs Tacromilus and Predinsone have side effects of pretty severe tremors. Some days are better than others, but on the not so good days the tremors thoroughly exhaust Tom. I have come to know the look on his face. . . . Tom is right-handed, but his right side is a bit weaker after surgery. We think this has to do with a strange hematoma on his leg that he got during/after surgery and the fact that his biopsies are now all done through his groin on his right side. Tom’s 5th scheduled biopsy was today. 3 0’s and 1 1A so far– hope this one is just as good. Today was also the first time re-upping drugs at the pharmacy. The will be a real test of our health insurance coverage and benefits this early in the year! No phone calls yet, so good.

I am “home” today in Harpswell cleaning and trying to get or stay out of general feelings of January blahs, being overwhelmed and spread far too thin. Try to do too much and nothing gets done . . . and certainly not well. We have our backs against the wall. I am trying to keep it all moving in the right direction.

Hoping Tom won’t be too tired when he is back from Boston.

Grateful. Spiritually exhausted. Listening to Krishna Das radio and signing along– no words, “just how it sounds.” Om Shanti Om. Peace. Peace. Peace. Namaste.

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June 14, 2019

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December 31, 2018

Sending you and your family all my love, Thom. XX

Annie Hewitt

December 31, 2018

Cheers to Tom & Molly!

Angel Kelley-Lord

December 18, 2018

In SOLIDARITY, my brother.

Douglas Born