While he may describe himself as a “Jack of all trades, master of none,” Terry Warren has nonetheless spent the last few years gaining mastery over his complex health needs with the assistance of a small green notebook and a team of clinicians and specialists from Brattleboro Memorial Hospital: a primary care physician, cardiologist, nurse practitioner, cardiac rehab specialist, rheumatologist, orthopedic surgeon, diabetes educator and a lineup of other providers and staff scattered throughout the hospital campus.
Terry and his BMH team are all working together in a multi-disciplinary defense against a complicated array of chronic cardiac and diabetes-related health problems that threaten his life and need to be carefully and diligently managed. This is the team that sustains him – that monitors his bloodwork, his cardiac and kidney functions, his blood glucose – any and all of which can change from day to day. The team is also poised to respond to the seemingly endless associated challenges of Terry’s underlying medical conditions: a broken foot, fluid retention, anemia, and a host of other complications that crop up with regularity.
Terry has congregated all of his medical care at BMH and the BMH Medical Group – primarily for convenience, but he has also developed great relationships with his trusted team of providers. He is at BMH every Thursday these days, for a range of appointments that might include seeing his Primary Care Physician, Dr. Laura Metsch at Brattleboro Internal Medicine, getting blood drawn at the BMH lab to check his hemoglobin and Coumadin levels, visiting the Hematology Clinic if he needs an infusion, checking his weight to see if he’s been retaining fluids, checking in with Houghton Smith at the Community Health Team to talk about his diabetes management. He likes to get it all done in one fell swoop, circulating through the Center for Cardiovascular Health, the Community Health Team, the Coumadin Clinic, and the Lab, as needed. He meets with Advanced Practice Registered Nurse Phaedra McDonough and Dr. Mark Burke, his cardiologist regularly, both of whom have developed a nuanced understanding of his health profile.
“Most congestive heart failure patients like Terry have multiple diseases that all need optimal medical management to give them the best outcomes,” says McDonough. “We get to know our complicated heart failure patients really well.”
On his regular Thursday rounds, Terry is greeted by name wherever he goes throughout the hospital. “Everybody’s so friendly – they all know me – the receptionists, the nurses; I’m one of the regulars,” he jokes. The green notebook goes with him everywhere, documenting his appointments, tracking his medications, listing side effects to watch out for. “I was never a very organized person,” Terry comments wryly, “until I got divorced and then had to start handling all my own medical issues.”
Born in Germany to a traveling military family with deep roots in New Hampshire, Terry grew up in Winchester, NH and maintains that he is “still related to at least half the town.” He left high school early for a job at the O’Neill paper mill in Ashuelot, NH, but after ten years there realized “I had gone as far as I was going to go in that place, so I went and got my GED and got a job as a part-time police officer.” Full-time police work followed, then a job in plastics recycling, then a move into the retail sphere, starting in the Jewelry Department at Walmart, where he drew the line at piercing ears. “I did that once, and then never again!” he jokes with a slight shudder. He moved up the ladder into managing electronics, and was happily ensconced in a job managing the stocking of new stores across New England when his health began to decline.
Diagnosed with diabetes in his mid-thirties, Terry has since developed a series of related health concerns over the years. “I have neuropathy in my feet from the diabetes, so I keep breaking my foot because my nerves can’t feel how much pressure I’m putting on the foot. I go see Dr. Vranos at BMH Orthopaedics and Sports Medicine when that happens, and he puts me in ‘the boot’ until it heals up.” His congestive heart failure requires a careful balance of medications that need to be regularly monitored and adjusted. “I come in to get my blood tested every week, and to get weighed,” he says. “If my hemoglobin is low I have to get an injection, and if my weight is up it’s usually because I’m retaining fluid, so they have to adjust my medication for that.” He’s had multiple heart surgeries, and has run out of surgical options, so maintaining his disciplined regimen of medications and therapies is critical.
On top of all of his own health concerns, he’s recently had to take on the role of coordinating his aging mother’s medical care as well. She’s a fiercely independent New Englander who Terry describes as “determined!” with a chuckle. Between the two of them, most of the week is taken up by various medical appointments with Terry serving as chauffeur and care coordinator. “It’s my full-time job now,” he says. “Taking care of myself and taking care of my mom.” His younger sister, Cathy and her husband also play large support roles in Terry’s life. “My little sister has really stepped up,” he says. “Because as much as I don’t like to admit it, there are things that I just can’t do anymore. It’s hard to admit I need help, but I do.”
As Terry’s team gather with him to take a group photo on an unseasonably warm day in February, the mood in the group is jocular and light-hearted. “It takes a village to take care of Terry!” someone exclaims. They tease Terry that he looks like a teenager in his new baseball cap and demand his autograph on copies of a newspaper ad that features his picture – but the circumstances that connect them all are serious.
“We just click,” Terry says of his BMH team. “Personality-wise, we all get along. I respect them and they respect me.” He chose Dr. Metsch as his primary care provider because she had been his ex-wife’s grandfather’s physician. “He was very particular,” Terry emphasizes, “So I figured if he liked her, I ought to give her a try, and she’s been great.” He met his cardiologist, Dr. Mark Burke on a visit to the BMH Emergency Department. “I really liked the way he dealt with me – very honest and direct, so I asked him if he was taking new patients, and I’ve been with him ever since.”
According to Metsch, cases like Terry’s illustrate the benefits of using technologies like electronic medical records. “Terry has multiple complex conditions, spanning multiple fields that are being treated with many different medications,” says Metsch. “It would be impossible for one provider to effectively care for him, so being able to easily see what other providers on his team are doing, review his lab tests, communicate questions or concerns amongst members of the team – that really helps us manage his care.” She is quick to point out the important role that Terry plays in keeping himself healthy. “He is extremely attentive to his health and very compliant with his whole medical regimen.”
Metsch believes that the smaller, more personal feeling of a community hospital like BMH works well for patients like Terry. “I think it’s been more comfortable for him, that community feeling,” she says. “Given that he is coming in to see one or more members of the team every week, and sometimes multiple times in a week, I think it feels somewhat familial to him.”
“Terry has done a wonderful job of working with his team and trusting us to care for him,” says McDonough. “It helps that we have an open door policy for all of our heart failure patients. Terry can stop by the Center for Cardiovascular Health any time he feels poorly or needs attention and we will see him. We like to think of ourselves as an extension of his family!”
“When we first met Terry, his diabetes was out of control,” reflects Houghton (Hoty) Smith RN, BMH’s Certified Diabetes Educator with the Community Health Team. “But with a team approach we were able to get the diabetes under control, which was the most important thing initially.” Smith recalls that when he and McDonough started taking care of Terry together they were able to reverse his diabetes to the extent he was able to go off insulin for a period of time. He notes that Terry was initially very pessimistic about his future. “He was almost giving up, didn’t think anything could be done, but as we started to work with him and he started to pay more attention to his health, he saw the results and I think his outlook has changed dramatically. He’s had time tacked on to his life with this very intense team approach to his health.”
Smith emphasizes the importance of optimism and a positive outlook for anyone grappling with complicated and serious health issues. “People like Terry should know that there is always hope for anyone who has a set of serious diagnoses – that a team of people can actually make a big difference in improving his health and his outlook on life.”
While Terry does project a decidedly upbeat attitude, the gravity of his situation does not escape him. “My health is serious. I’m seriously sick, but there’s nothing I can do about it except what I’m already doing, so why let it get to me?” he shrugs.
There have been dark periods for Terry though; times when he’s found it difficult to summon up his usual cheeriness.
“I used to live to fish,” Terry reflects. “But last year I didn’t even get my line wet. I just wasn’t feeling it.” His loss of enthusiasm may be related to the loss of his fishing buddy, Gordy, who passed away last year after neglecting a constellation of health concerns much the same as Terry’s. “We had a lot of the same issues. He had diabetes, a bad heart, lost a few toes, and he wasn’t taking care of himself,” says Terry. “He had a sore foot he didn’t take care of and ended up losing half the foot.” Terry goes on to describe Gordy’s subsequent decline, including a serious fall alone in the snow, resulting in frostbite that damaged his hands and feet, which contributed to a tumble into the woodstove and significant burn injuries. “After that he got real sick,” says Terry “He told his wife ‘I’m tired, I’m done. And after that he went straight downhill.”
Gordy’s passing has clearly served as a cautionary tale for Terry. “I take one day at a time, now and I don’t let anything bother me. I can’t afford to let anything bother me!” he declares emphatically. “I’ve got to take care of my mother, and my own health, so I don’t have time to feel sorry for myself.”
“I’ve always been a happy person,” he says. “I always have a joke ready, whether it’s appropriate or not!” He credits the positive attitude of his medical team as key factors in maintaining his optimistic outlook. “My team here at BMH keeps my spirits up,” he says. “Just today, Tanya who does my INR (a test used to monitor patients who are being treated with blood-thinning medications) took one look at me and said ‘Dang Terry, you’re looking good today!’ Stuff like that keeps me motivated.”
Terry is both optimistic and realistic about the future. His complicated medical conditions and the potentially serious ramifications of neglecting his prescribed routines have prompted some difficult conversations with his medical team. “Dr. Burke came right out and asked me if I had my end-of-life plans in order, and told me that if I didn’t, I should,” says Terry. “I’m glad that he’s honest like that, I really am – even if it’s a hard pill to swallow.”
“When the time comes, I already have a plan: I want to be cremated and tossed in the ocean. Hopefully I’ll land right in the middle of a school of bluefish and stripers. Then I’ll get some fishing done!” he jokes. Then, as if on cue, he checks his watch, consults the ever-present green notebook, and excuses himself to head out to another appointment with another member of his team.