May 1, 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 8, 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 20, 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.
December 11, 2018
Dear Friends,
Thank you for all of your generous contributions and support to Tom's "Heart of the Bull" campaign. This campaign continues, but in a different form now. . . .
It's been an amazing, confusing, and miraculous few weeks-- A new beginning that gives new meaning and perspective to the past two, ten, twenty or forty-six years for Tom and everyone in his immediate and extended family. No matter how you look at it, we are exhausted . . . and we are ecstatic. We are behind . . . and we are raring to go. We are riding a huge wave. Today, Tom is doing better than ever. As of this writing, no visitors or calls please-- tests galore and vocal cords that need ample rest from so many intubated days. For the next little bit, please text or PM Tom rather than call or visit. We will update you with more details in a week or so. THANK YOU!
Whether or not you can contribute financially to our Heart of the Bull campaign, we invite, and even implore you to visit Dirigo Brewing Company at 28 Pearl Street in Biddeford to raise a glass of beer . . . to life!
The moon is on the rise, and WE LOVE YOU!
~Molly, Tom, and Max
November 29, 2018
Holy! Holy! Holy! I just lost the update I spent over an hour typing. This one will be more stacatto. In the wee hours of November 26, Tom received a donor heart and heart transplant. Tom's immediate recovery time is at least double than it might be as a result of complications. Manageable ones. Keeping all the balls in the air is inordinately difficult. We couldn't do it without the financial and moral support, the time and efforts of dozens of people. Thank you all. It's all touch and go now, but we are grateful beyond words. I have to make calls, pay bills, sign off. Thank you again for all of your generosity. Love, Hugs, Health, and Peace, Tom, Molly and Max.
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!
Here goes--
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 17, 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!
October 3, 2018
John Stokke. John Keimel. Sarah Robbins Kelley. Katie Lamb. PJ & Cathy. Jesse. Emmet. Stu. I could go on and on and on. If I have not mentioned you specifically, please do not think for a second we are not remembering your kindness. Thank you! Thank you! Thank you!
October 3, 2018
Quick Update:
Last week was very scary! Tom had another blood infection, he went into A-fib, his kidneys shut down, and he was thankfully very quickly transferred to the Cardiac Care Unit at Tufts. Aggressive antibiotics started right away. At 1 p.m., the doctor was talking about breathing tubes and dialysis. By 4 p.m., Tom was peeing like a race horse with no diuretics! Full recovery! In sum, while all of this makes us feel very old most of the time, Tom's youth played a huge role in his body's ability to recover.
We continue to receive unbelievable love and support from our family and friends. We have so many to thank! Thanks to all who have contributed here. You are very kind and generous. Another special shout out to Gritty McDuff's, Nonesuch Brewing, and Run of the Mill. Thank you Maine Health Cardiology-- Amanda Sebastio. Thank you Carlene. Gregin, Bettina, Angel. David, Carol, Jeanne and Bob. Peter, Charlotte, Bee. Ray, Bryan, Brienn. Ellen, Pam, Tori. If you have not received a thank you note or we have not thanked you personally, please know how grateful we are. As soon as I can catch my breath, all I want to do is hand write thank you cards.
I generally visit and stay with Tom on Sundays. As particulars of our lives change this fall, our time together will likely change to Mondays. We all sleep better when we are together!
As with everything, some days are harder than others. We are buoyed by your love and support. We love you and we will get through this!
September 13, 2018
Hello All~
We are extremely grateful for all of the love and contributions to Tom's fundraising to help with his heart transplant costs. For now, we are hoping to raise enough money to cover Tom's 2019 health insurance deductible, co-pays, and total out of pocket medical costs not covered by insurance with the money raised here. (We do not yet know what insurance will or will not cover in 2019 or beyond.) Last year, Tom's total out of pocket max was approximately $13,000. Holding my breath for open enrollment for next year's health insurance, which begins in November. I continue to juggle Tom's medical bills that have mounted over the past few years.
We are selling our house, so there are those expenses too. Tom and I have wanted to be closer to the brewery since it opened in 2016. We have also frequently discussed downsizing from living in a house that is more than we need. There seems to be no better time than now. I am lucky enough to be able to stay with friends for a bit this winter, and by doing so, I will not have to carry the costs of a house 4x too big for me alone. Also, I will be 4 instead of 18 miles away from the brewery. In the past month, at least a dozen people have lent kind and generous hands helping me get the house ready to be listed and sold. I am headed home to do some more painting momentarily. . . .
Yesterday, one of Tom's oldest and dearest friends visited for the day . . . and gave him a haircut, which he badly wanted. Yesterday was a "Swann holiday," so Tom got to take a (long) shower last night and spend a bit of time outside today. The Swann goes back in today. In approximately 2 weeks, they will change it again.
Tom is stable and keeping his spirits up. His sunflower plant is doing exceptionally well. Rosemary and mint are doing well. He split the basil, and it seems to be doing okay too. The parsley had to be replaced. . . . Tom is playing guitar, reading, taking German lessons. I wonder if he really will learn to knit. One of Tom's close camp Calumet buddies lives and works close to the hospital-- She so kind and sweet to visit Tom often, have sushi with him weekly, and do his laundry.
I get to Boston weekly. Max and I stay overnight and we love it. Tom's parents generally visit weekly as well. Lots of friends and fellow brewers too.
Last Sunday, Tom made another batch of signature out of this world chili for us when we watched the Patriots game together. (Instant Pots are the best . . . thank you very much members of the Maine Brewer's Guild.)
Speaking of brewers, Ray and Bryan are brewing the best beer Dirigo has ever seen.
From the love and support perspectives, Tom and I are doing GREAT! While I am inclined to focus on the positive, I would be remiss not to say that Tom's health continues to rapidly deteriorate. The amount of activity that he can sustain without becoming short of breath, having to sit down, and ultimately stop seems to decrease weekly. Think of taking a shower as on the level of sprinting a marathon. Still, Tom continues to take his daily walks, however short and slow.
Thank you all for everything! We wouldn't have made it this far without you. We are going to keep our heads up and keep on keeping on. We love you. Thank you.
~Molly and Tom
August 31, 2018
Dear Friends and Family,
Molly here with an update. . . .
Tom is keeping up his spirits by taking German and guitar lessons. Just as important, many friends and family are taking time out of their busy lives and paying Tom a visit.
Tom is an important sounding board for me as I do my best to keep all the balls in the air on the home front, with my very small law practice, and at our 2-years young microbrewery. I travel to Boston and stay with Tom at Tufts as often as I can . . . about once a week.
This week has been thankfully uneventful on the medical emergency front. In fact, Tom's health has been stable for as many consecutive days as I can remember-- This is an indication of what the past two years have been like, health wise, for Tom.
This past Monday, August 27, 2018, Gritty McDuff's sponsored a golf tournament with 36 teams of 4. So many sponsors, participants, and all around lovers of craft beer were swinging the clubs and hacking our way around Riverside Golf Course in Portland. During the awards, Tom was "Skyped in" so he could say hello, thank you, and converse a bit with his colleagues and other tournament participants. Part of the proceeds of Gritty's tournament will benefit Tom's fundraising efforts for his heart transplant. A special beer, Corzon del Toro was released at the golf tournament. (Dirigo, Gritty's, Sebago, and Rising Tide breweries are or will be pouring this beer in our respective taprooms.) A week earlier, Sebago Brewing's annual golf tournament named Tom as this year's beneficiary. Prior to that, Maine Beer Company's annual brewer's cornhole tournament earmarked proceeds for Tom's benefit. This outpouring of generosity tells you a lot about the Maine Craft Beer community-- Maine brewers care about and take care of each other. Tom and I are profoundly humbled and grateful to be a part of such a generous, loving, and very talented group of Maine brewers. Also at Gritty's golf tournament, three close friends organized a silent auction and raised more than $3,600 in a very short time. T-shirts were designed and produced to raise more funds on Tom's behalf. Each and every dollar raised has covered or will cover expenses related to Tom's medical condition that are not covered by insurance.
Thank you to the dozens and dozens of people who have donated time, money, items, services, skills, and so much love on behalf of Tom and his wait for a heart transplant. We will thank you individually, but everyone needs to know that your generosity not only makes a lifetime of difference for Tom, it does the same for me and our whole family. We are beyond grateful. We love you. Thank you. Happy Labor Day. Cheers!
August 22, 2018
Deepest thanks to all those who have visited this page and to those who have generously contributed to our fundraising efforts. The last two weeks have been somewhat eventful. . . . Tom got outside for a few hours when he had a 24-hour "Swann holiday." Tom also contracted a blood infection last week, which really knocked him out-- He is doing much better now. Yesterday, Tom got a new room, which is bigger than his old room. We think this is where he will stay for the duration. . . . While Tom's physical health is poor, his spirits are still very good. He is grateful so many people are travelling and taking the time to visit. It means the world to him . . . to both of us. We couldn't be happier with the excellent medical and personal care Tom receives at Tufts. It's a long road ahead. We are so lucky for the love and support of friends and family. Keeping the faith from Maine to Boston . . . and beyond.
A progressive take on a Vienna Lager called Corazon del Toro ("Heart of the Bull") has been brewed for Tom, and it will be released at Dirigo Brewing Company (@dirigobeer) on August 29. If you are in the Biddeford, Maine area, please stop by 28 Pearl Street (follow the road all the way to the river) and raise a glass to the Heart of the Bull. Prost!
