“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.
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.
December 21, 2018
‘Tis the day before winter, and Tom is back home!
On December 18, Tom was discharged from Tufts. Tom is beginning his recovery at his Mom and Pop’s neighbor’s cottage in Harpswell, Maine. (I am splitting my time between there and friends’ in Saco, which is closer to the brewery.) Tom’s has had 3 biopsies on his new heart so far, and they are the best we could hope for . . . BIG FAT ZEROes! We return to Boston on Christmas Eve for (hopefully) the last weekly biopsy. After that (barring any complications), during this first year, we will travel to Boston for outpatient visits bi-weekly for a while, then monthly, etc.
All heart transplant patients and their families are advised to expect at least one “rejection event” during the first year after transplant. What this means is different for everyone, so I can’t really speculate about that . . . only hope for the best. The first year is very delicate with respect to rejection, infection, recovery, gaining strength, re-discovering a “new” life, etc. For most or all of this first year, this means that Tom cannot eat food not prepared at home and he cannot be in large crowds.
In-home physical therapy should start this week, and I know Tom is looking forward to getting stronger so he can walk more than “domestic” distances, ditch the cane, and so on. By March, Tom’s chest should have healed enough so that he can drive a car again and be more fully mobile in his body.
Tom’s recovery location is among the most beautiful and peaceful places we have ever been. We are so grateful for the generosity of family, friends, and neighbors.
While I feel like I am living a life of “having no more bandwidth” on a whole new level, I want you to know that every single day, I give thanks to and am deeply humbled by all who have so generously contributed to our fundraising. If I am remiss on sending you a hand-written note of thanks, I certainly hope to catch up a bit over Christmas. If you find yourself in Biddeford, Maine on a Friday, Saturday, or Sunday, please stop into 28 Pearl Street so I can pour you a special holiday beer of gratitude.
The year ahead for us will be telling– Tom’s overall health and recovery is our top priority. . . . By March, we will need to find a place to live. Currently, the future direction of the brewery is very much on our minds, as is my working life. Come January 1, we will have a much better sense of how well our health insurance covers Tom’s medical costs. To this end, our Help Hope Live fundraising campaign will continue until we know the actual monthly and annual costs of Tom’s heart transplant. It is my hope that someday we can cover them all with our earnings and good insurance, but for now we are in “one day at a time” mode more than ever. Hopefully by this time next year, we will have a little better understanding.
Thank you to each and all who have contributed to Tom’s “Heart of the Bull” campaign. Thanks also to each and all who have lent a hand, given time, transport, done a favor, sent a note, organized an event . . . everything. . . . We couldn’t have made it this far without you. For all involved, this process has been both uplifting and exhausting. We embrace the challenges of our new life, and we look forward to sharing our milestones with you along the way. In the meantime, enjoy your family and friends more than ever!
Big Hugs, Lots of Love! Merry Christmas!
Peace. Peace. Peace. Namaste.
Photo Galleries (4)
December 31, 2018
Sending you and your family all my love, Thom. XX
December 31, 2018
Cheers to Tom & Molly!
December 18, 2018
In SOLIDARITY, my brother.
December 4, 2018
We've heard so much about you and your Molly from your Mom and Pop. We cant wait to finally meet you in person and raise a glass (of Dirigo) to your new and continued good health! Keep the faith, Tom, you've got this! Hugs, Dennis & Sharon
Dennis & Sharon Christman