As Caregiver for a Beloved, Protect Your Precious Heart

A bit of spring for Jack on either side of the front door as this long, long winter took its time ending.

 

My husband, Jack, was diagnosed with cancer just before Christmas, upending our world—and my heart transplant discipline. New to being sick with anything, Jack was deeply shaken. Oh, he had faced and reconciled his own mortality before as the leader of a mountaineering expedition in Argentina, but a cancer diagnosis in one’s later years is different. It is somehow more tangible. I respect the difference. When I was waiting for a heart transplant at 56 and my father was seriously ill at 89, we talked about the difference. When one is younger, there is simply more hope because time is on one’s side. Now for the first time in his life, my mountain man questioned his undeniable physical and mental strength. But he worried most about his ability to care for me as he has devotedly since my first heart attack in 1997, a worry so true to his character.

During the first two weeks of shock and action, on the inside I was frozen with terror while also in high gear to save and calm my husband. In my all-out focus on Jack, I unwittingly took my drugs at odd times, neglected vital stretches and exercise, and lost my appetite. Furthermore, there I was, an immune-suppressed patient myself, living for days at a time between MGH and a nearby hotel as Jack was being tested and correctly diagnosed—during the height of contagion season. Everyone was sniffling and coughing. Back at home I became further depleted while desperately taking care of Jack and also assuming his chores. I immediately caught a cold and my neck knotted for the duration. Adding to our stress, the winter of 2018 brought a parade of record-breaking nor’easters, heavy snow and strong winds creating a nightmarish three-hour commute for Jack’s chemo infusions—from our small town in western Maine to Mass General Hospital in Boston and back, every three weeks. It was hard. And it was just life doing what life does with no exceptions.

If you are lucky enough to be alive with a heart transplant or another chronic condition, then you certainly know that life does not stop its flow for you. Though you may be fragile yourself, people you love may become seriously ill or face other crises and need your devoted care. Meanwhile, other responsibilities need attention, meals need preparation, and bills need to be paid; in other words, the basics of normal adult life must somehow go on at the same time that your beloved and you are in total crisis. The experience is overwhelming—even for those of us skilled in problem-solving and multi-tasking. Despite your feelings, whether the crisis passes in a day or continues for years, you cannot become overwhelmed. You must be clear-headed and strong; you are needed and necessary.

Jack and I had one advantage going for us during the winter of 2018 that was not at all apparent to us in our initial shock and dread. The dark gift of my 21 years of cardiac crises dawned on me one day as we glumly picked our way along a snow-piled Charles Street to lunch somewhere, anywhere, outside of the hospital. I was doing my best to center all of me, inside out, and before I knew it, my barely formed thought escaped into audible words: “You know? Other people’s lives would be devastated by this cancer news.” 

Jack stared at me as though I had suddenly grown horns through my thick wool hat. “But I am devastated, Deborah. Aren’t you?” 

Oh, dear, did I say that out loud?

“What I mean is, if you think about it, here we are on Charles Street—again—deciding where to eat lunch. Nothing has really changed in our lives; we’ve just changed places. For 21 years, it has been our frequent routine to drive to Boston for my medical junk. We go to multiple appointments and procedures, we get good and dreadful reports, we stay in a familiar hotel, we sit in waiting rooms. I am hospitalized and you sit by my bed. We figure it out. This is just our life.”

Jack still wasn’t with me, so I pressed on. “My point is, we are experienced at this. Others have no idea how to cope because it is all new. They don’t even know where to grab some fresh air and a bite to eat between appointments.” 

Jack was quiet for a minute, and then we shared the oddest laugh at what I guess you could call our dreadful good fortune. My insight (or attempt at a positive twist on a dire reality) shifted our energy in that moment and reminded us of the only thing we had going for us: experience in coping with medical junk.

It was my nascent cold that forced a reckoning with my special challenges as Jack’s primary caregiver. During my worst cardiac years, Jack had been in peak physical condition as my devoted caregiver. Now in his time of need, my body was compromised and unreliable, as is the case with any transplant recipient. My well-being depends on adhering to multiple medical protocols and disciplines, many of them daily. Also, being immune-suppressed I am vulnerable to infections. If my little cold developed into the annual, full-blown bronchial/pre-pneumonial mess, not only would I be too weak to help Jack, I could infect my cancer patient and add to his risk as he headed into chemo, another weakener of the immune system. Thus, my first priority was to vanquish the cold before it developed. But to do this, I had to make my health needs equal to Jack’s during his crisis, or we would both be lost.

So, I grabbed onto my usual solution for being overwhelmed by channeling my stress into organization, right from the hospital. I called and emailed around and cleared our lives of all energy drains and distractions; I asked for help and understanding and received both in bundles. At home, I moved into a guest bedroom to protect Jack from infection. I slept and hydrated aggressively. For the return to MGH I packed Mucinex, extra hand-sanitizer, tea, broth, thermoses, and requested a portable water boiler from the hotel. Every day at MGH, there I was beside Jack, wearing my customary mask and carting around two or three thermoses of hot tea or broth. I slept where I sat, mask on. Once Jack was settle into his first chemotherapy session (lasting seven hours) and drowsy, I escaped to the hotel to grab a better nap and refill my thermoses for the return to MGH. Jack never caught my cold and I managed to beat a cold for the first time in the 12 years since my heart transplant! (No doubt a big part of the cure was pure warrior determination.)

Thus began a continuing effort to find my balance between Jack-care and self-care, a discipline that heart transplant graduates ignore at their peril. Now six months and six chemo sessions later, my beloved is in total remission. He may be skinny and bald, but he is all here and gaining strength every day while sitting by the lake in the summer sun. The healing and rebuilding have begun. That goes for both of us.

Intensive care for beloveds, from children to elders, may go on for years, made more complicated if the caregiver is managing her own chronic illness. In the MGH transplant unit, I meet many colossally strong people, many of whom have beloveds depending on daily care and attention, a special challenge for heart transplant patients because of their suppressed immune systems. The husband of one couple I met received a heart transplant a few years ago and their young son was then on the waiting list! I am in awe of all of you. To be both patient and intensive caregiver at the same time has been one of my biggest challenges in Cardiac Land.

The recommendations below reflect my experience and what I observed of Jack as he cared for me while also keeping himself well and strong over the the last 21 years in the midst of our complex lives, no matter how dire my condition. This winter was my turn to wear his outsized caregiver shoes, an experience that has increased my respect and love for him and for all caregivers. Living with a chronic heart condition that includes a heart transplant is an ongoing opportunity to learn more about one’s humanity. I hope what I have learned about the balance between beloved-care and self-care is helpful if you ever need a reminder that taking care of your self is not selfish but the responsible thing to do for all your beloveds.

  1. Place the oxygen mask over your own face before attempting to assist others. After fastening your seatbelt, you hear this announcement before every flight takes off. Self-care is critical to cardiac patients during a crisis or you risk the well-being of your beloved-in-need. Set yourself up to be able to take your meds on time, no matter where you are. Make time to eat properly, including fruit, vegetables, and healthful protein. Hydrate, hydrate, hydrate; the air in sealed buildings (hospitals) is inherently desiccating. Do your stretches, anywhere. Keep up your cardio-exercise by slipping it in throughout the day. Even a few minutes makes a difference; for example, jump around in a waiting room and use the hospital stairs rather than the elevator. Center yourself and lower your stress by simply breathing. I find it remarkably calming and re-energizing to close my eyes—anywhere—while enjoying three deep, gentle inhalations through the nose and exhalations through the mouth. No one ever notices and I am renewed when I open my eyes. And, finally, need I remind you to wear a mask whenever you are in a medical building? Accept that any medical office is a petri-dish of germs. If you get sick, you are a danger to your beloved. 
  1. Get Organized. I followed my own instructions to create for Jack his personal Medical Notebook (instructions and worksheets on this website) the minute our primary care physician called us with terrible CAT results. I grabbed a three-hole punched, yellow-lined pad of paper we had lying around to write down everything she said. I kept all our initial notes and data on that pad until we understood more. Out it came at every appointment; I scribbled notes so Jack could concentrate fully. Once we knew his diagnosis and treatment plan, I transferred those notes to a three-ring binder with dividers, tailoring my website instructions to meet the needs of a cancer patient. Having one place to keep every bit of vital information especially calmed and readied Jack. It helped his head to stop spinning. As his cancer experience developed, we were prepared participants in every meeting with his clinicians. They were impressed; many patients remain in panic mode and retain little information largely because they do not write it down. Jack’s stress level and mine lowered because we felt we had some control over our response to and management of the crisis. 
  1. Simplify. Delegate. Postpone. Cancel. Communicate. What tasks can you get rid of right now? De-clutter your life quickly. Everyone will understand. Just do it. Clear your head and schedule so you can focus on your patient and others who truly need you, as well as on your own self-care. Ask for help and understanding. People like to help, to feel useful when someone is struggling. Asking will widen the circle of love that you and your beloved need for getting through this. To address people’s concern, consider periodically sending an email with progress updates. Following my first shocking heart attack and again following the heart transplant, Jack fielded hundreds of calls from concerned people. He found that speaking with everyone was a good outlet for his own emotions. As soon as Jack got sick, I recognized my health limitations and knew that talking with so many people would drain energy that I needed to harness for Jack and my own well-being. So I sent a thoroughly informative group-email at three key points in the chemo process to family and friends and gave them permission to forward our “report from the front” to others. It ended up being a terrific idea, keeping everyone involved and informed and avoiding hurt feelings of being left out. Furthermore, when I ran into friends and acquaintances at the grocery store, I didn’t have to keep repeating the story, releasing me for a moment from the nightmare we were living. Jack’s son dubbed my emails The Winter Cruise News, inspired by another one of my efforts to transform on our perfectly dreadful situation. I mean, people take a cruise to be with their beloveds, right? So, I proposed to Jack that we name this time in our lives the Winter Cruise, since we live isolated on a peninsula surrounded by ice. Jack latched onto it because Winter Cruise framed cancer as a trip or expedition for the two of us during a freezing winter on a lake in Maine. An expedition he could handle. Friends adopted it, too, asking “How’s the Winter Cruise going?” instead of using the “C” word. Whatever works!
  1. Surround yourself with love; your health depends on it. Who gives you energy? Who takes it from you? Who is calming and loving; who is needy or cyclonic? Trim your life of all drama during a health crisis to make room only for people who make you feel happy, understood, supported, peaceful. When Jack and I have felt someone tugging us off balance from the centered focus we have needed during crises, we have done our best to practice letting go with compassion. Some relationships may just need to be paused during difficult times because your reality and needs come first. Perhaps philosopher-theologian Reinhold Niebuhr’s prayer will help you as it has helped us: “Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.” 
  1. Post-crisis: Rest deeply and for as long as you need. Especially if you have a condition as complicated and precious as a heart transplant to protect, when a beloved becomes critically ill, you, too, in a sense, become “ill.” Cardiac and transplant patients often acquire deep empathy for others, a gift of our own suffering. We cannot help but feel everything the beloved is enduring and suffer right along with them. I know this is true of me. So, while your beloved recovers, I suspect that you will need recovery time, too. Sleep and rest as much as you can. Resist immediately re-loading yourself with activities and obligations that you put on pause for the duration. You are not fully yourself yet. Resume healthful routines that you may have had to forgo or shorten, such as massage and your full work-out routine. Check to be sure your own medical appointments continue, some of which you may have had to cancel during the crisis. Give yourself space and time to let the stress dissipate when it is good and ready to exit your body, mind, and spirit. Pay attention to that moment and give it release. Scream, cry your eyes out, dance like a fury! Purge it so it does not damage your health. Your clinicians worked hard to give you life. And your donor made this life possible, which includes both joy and suffering. So take care of your big, loving heart, the little pump that makes both dancing and coping with disaster possible.

This summer of recovery, Jack and I are both deeply tired, sleeping at least 10 hours a day and feeling no guilt. Remember this: Hope is work. It takes vision, focus, determination, faith, discipline, and kindness. And when you no longer need to harness so much hope, you will be physically exhausted by your mental and spiritual marathon.

Now at night, I can feel warm vigor returning to Jack’s body close beside me, in contrast to the icicle he was until sometime in June, despite sleeping in his “monk outfit”: a fleece pulled over his long, flannel nightshirt, finished with wool socks, hat, and scarf. Now, every Saturday at the farmers market, our social outing of the week, people are happy to find us radiant as Jack makes weekly gains in strength and vitality. He is rocking the bald look, which everyone hopes he’ll keep, even if his hair is beginning to grow again. 

And yet, a couple of weeks ago I found myself in a pit of depression. I woke one morning feeling leaden. I could barely lift a limb and my mouth just would not turn up in the smallest smile, despite the gorgeous summer day and my having every reason to be grateful and happy. And then I understood. The grief and terror that I had tucked away in the deep recesses of my being were moving out and into my body for physical release. I have experienced this before and quickly recognized a form of PTSD. Unable to rise from my bed—and with Jack now safe and on the mend—I finally could give into forces that I had been keeping at bay to simply cope. I cried my eyes out, curled in fetal position, until I fell asleep for several hours. I woke to Jack rubbing my back as the sun began to set, offering a glass of wine and an invitation to go outside and watch the greatest show on earth. The morning’s weight was gone. Instead, I felt light, triumphant. We had done it! My husband lives. And now so can I. 

END

 

 

My Tip for Easing Your Angioplasty/Biopsy

Roasting tomatoes from the bounty of a lingering summer is one of my most favorite things to do in autumn. This year, tomatoes were piled at the farmers’ market well into late October—unheard of here in western Maine. I put-up these beauties in freezer bags just before leaving for Boston for my annual heart transplant check-up—my most dreaded thing to do during this otherwise glorious season. I really should not complain because I have lived to experience 11 years of good results from post-transplant check-ups. Let’s begin with celebrating the important part, right? Roasted tomatoes are just one of the many benefits of being alive.

During the early years with a new heart, angioplasties are the core of frequent and annual check-ups and involve catheterization through the neck, groin, or wrist. The heart is usually biopsied as part of the catheterization. Patients fresh out of transplantation go through these checks weekly, as I did. Over the years, the cath schedule tapers to a routine annual, and then only every other year. Today, my annuals alternate between two procedures: an echo cardiogram and coronary angiogram one year followed by an echo and dobutamine stress test the next year. This year I returned to the cath lab for an angiogram.

Year five of transplant survival is cause for celebration among graduates and their clinicians for a number of reasons. First, the graduate is alive and thriving! When I received my lovely new heart in 2006, the data showed that half of us might not make it to five years, largely because of infections or cellular rejection. The data has improved since then, but I never forget that every year is a triumph. I was also very happy to learn that in the fifth year, the biopsy part of angioplasty was over for me unless it is needed, which is the norm. Also, the angioplasty schedule reduced to once a year, every other year—meaning, fewer trips to the cath lab! Finally, year five is generally regarded as the end of cellular rejection risk, which is high in the early years while our bodies adjust to having a foreign organ in our biochemical system. Leaving that risk pretty much behind is a big relief for all of us, as well as an important marker in a heart transplant patient’s progress. By year five, the graduate and her lovely new heart have usually proven truly compatible. An added bonus for me: I felt fantastic, even with complications. A good life was possible. I was living it every day.

We must all remember, however—as every doctor has told us—a heart transplant is a treatment, not a cure. After five years alive, the graduate enters the second period of risk, that of vascular rejection. You see, the vascular system experiences a lot of wear and tear from a denervated heart that pumps blood through the body at a constant rate of roughly 90 beats-a-minute. It can cause a little, oh, let’s call it erosion, though that metaphor is not accurate. You get the idea. The good news: vascular rejection does not happen to everyone and generally makes slow progress in an otherwise much-improved life.

WHY I AM PARTICULARLY CATH-CHALLENGED AND YOU MAY NOT BE
As we celebrated the great, good fortune that I had made it five years, I secretly, guiltily, celebrated the end of angioplasties and biopsies sprinkled throughout each year. They are torture for me—despite the inexaustable kindness, love, and competence of my friends in the MGH cath lab. You see, I am small-boned with veins that are deep and narrow. Picture the poor cath clinician who has to cope with Lilliputian vessels in a grown woman.

It has been a difficult dance, filling me with trembling dread akin to the dread I felt as shy and tragically gawky Gordon Mills made his approach during seventh grade dances because no one else had picked me and he knew I was too kind to refuse him. (Maybe he thought he was rescuing me from humiliation, now that I think about it. If you are out there, Gordon, thank you and I apologize.) I remember shaking with cold and feeling ashamed at my repulsion because even then I recognized my uncontrollable response as colossally unfair. No one should be defined by who they are as a pre-teen or teenager. The same is true of cath lab clinicians, who are really nice people when they are not doing the deed. Despite this knowledge, I am horrified  every time I am wheeled, already shaking, into the chilly cath lab.

MY SIMPLE, PRICELESS TIP FOR EASING YOUR CATH LAB EXPERIENCE
Hydrate extra well before the procedure to bring the most plumped vascular system you can muster to your Gordon Mills, the perfectly nice cath doc who wishes, as you do, that there were some other way. But as yet there is not. The simple trick of extra hydration will make the going less rough on you because the tiny catheter’s entry and removal are easier in juicy vessels (think ripe summer tomatoes) than in dehydrated, desiccated ones. Makes sense, doesn’t it?

I have learned to drink 8 to 10 full, 8-ounce glasses of water for 2 days prior and right up to the hour that clinical instructions say to stop all fluids before catheterization. It really works. My cardiologist thinks it is a brilliant solution and wishes that he, a veteran of the cath lab, had thought of it. Never continue hydrating beyond the clinical requirement to stop. Hydrating too close to the procedure may prevent accurate readings.

I often think of children who have to cope with this procedure… If you are the parent of such a child, maybe this will help ease their discomfort and terror, but check with your transplanting physician first, of course. Kid bodies are not adult bodies.

BET YOU WANT THE TOMATO RECIPE NOW THAT WE’VE GOTTEN THROUGH ALL THAT
Back at home and drained from the three-hour drive to the lake following several days of testing at MGH, Jack and I relaxed in front of the fire with pasta and fresh tomato sauce from the roasted tomatoes that I did not freeze. It’s easy to make.

First, you roast (350 for about 45 minutes) the tomato halves or quarters that you have tossed generously with enough extra virgin olive oil (EVOO) to make them glisten, salt, pepper, and fresh or dried herbs. In this batch, I threw in a small fistful of dried Herbes de Provence, a gift from my sister Callie’s trip to France. Sometimes I add slivered garlic. When the tomatoes are collapsed and browned (caramelized) at the edges and their released juices have reduced and thickened a bit, haul the roasting pan out of the oven.

Cool the tomatoes to room temperature, if you are packing them into sturdy bags for freezing and defrosting for dinner on cold winter nights. Otherwise, toss hot or warm fresh roasted tomatoes, with pasta, just as they are. I love to puree the roasted mess first (fresh or defrosted) and pour it into a skillet to warm through. It will be creamy—as if you had added cream, which you can do, but it is not needed and takes away from the fresh sweet/tart flavor of just tomatoes, herbs, and olive oil. Add to the pan of pureed, roasted tomatoes: drained, almost-cooked pasta with a little (1/4 cup?) of its cooking water. Simmer pasta in the sauce until it is al dente and has absorbed some of the sauce. Serve with fresh basil leaves (or parsley, or?) and more EVOO drizzled on top—as Jack and I did by the fire that night. With good results from MGH and good red wine, it was a fitting feast of life in full color. xox Deborah

Hydration: Tips & Tools to Help You Drink Plenty of Water

Hydration toolsWhy am I writing about hydration during February, when Maine is a frozen landscape? Warm weather screams “thirsty,” whereas during the cold months it is easier to forget to drink a tall glass of water (8 ounces) almost every hour of the day. Since my heart transplant, I have noticed that my skin is especially dry during winter and my GI system isn’t cooperative if I fail to drink those 6 to 8 recommended glasses of water every day. So, I set up a simple system to ensure daily hydration. All you need is a thermos, a sports water bottle, and a jug. Also, while doing a little research on hydration, I learned that how we drink water affects how well it is absorbed deep into our bodies. Read on for support in your effort to drink plenty of water every day and make it count.

As important as taking our medications, drinking enough water every day is vital to cardiac patients’ health. Among many other benefits, proper daily hydration helps move meds and their toxic side-effects through and out of our bodies. When I keep up my daily hydration discipline, my skin clears of med rashes and I have fewer leg cramps. The importance of hydration increases if you catch a bug. This is easy to do during cold/flu season, especially if you are a heart transplant patient living on medications that suppress the immune system, as I am. When slayed by a combination of viruses this winter, I nearly blew my health to smithereens by not drinking enough water. I had thought I was doing a good job with broth, herbal teas, and glasses of water—but I forgot that I was asleep for most of the day! The result: dehydration and dangerously low sodium levels, followed by a few hours at the hospital hooked up to a saline drip—thankfully before thyroid, renal, UTI, and other complications piled on.

Tips to Speed Water’s Absorption into your Body and Make It Count
I am fairly ecumenical in my approach to managing the side-effects of cardiac medications and procedures—only if I receive approval from my clinicians. For the most part as MDs in the allopathic tradition, they may not always fully understand what I propose trying, but they always know if an experiment will interfere with my meds and well-being. My highly respected massage therapist is a practitioner of Ayurvedic medicine, which is one of several healing traditions that I selectively integrate to counterbalance the sometimes toxic impact of allopathic medications and procedures (particularly post-transplant). The following Ayurvedic tips on hydration seem to be working well for me:

1) Boil your drinking water first, when possible. Boiled water, cooled to warm or room temperature, takes about 3 hours to be absorbed fully into our bodies, whereas cold water takes at least 6 hours.
2) Drink a tall glass of warm or room temperature water 30 minutes before a meal. This habit not only only adds to your daily tally of fluid intake but also prepares the stomach for proper digestion. Drink small sips of water throughout meals because taking in lots of water with food interferes with the digestive juices doing their job.
3) Never guzzle water. It just runs through you. Practice the art of steady sipping.

Tools to Help You Drink Plenty of Water Every Day

Because morning can be hectic and distracting, I prepare my water load for the next day every night after dinner, while tidying the kitchen. It’s just part of my routine, which I recommend to you.

1) Bring a full kettle of water to boil for a few minutes, then fill a 16-ounce thermos with the boiled water and place it on a little tray with a mug and a piece of fruit to eat in the morning. (See picture above.) To the thermos add a squeeze of fresh lemon juice or more and at least a teaspoon of local honey, both according to your taste. I often add an herbal tea, depending on my needs, but honey and lemon are sufficient. Lemon increases fluid absorption and cleanses the liver and kidneys; local honey minimizes hay-fever and other environmental allergies, as well as thins mucus, helping to alleviate congestion that can lead to bronchial/sinus infections.

Put the prepared tray on your bedside table. While you are blinking yourself awake in the morning, drink the warm, soothing contents of the thermos, then eat your fruit—another source of hydration that also gently stimulates your GI system. Tough assignment, eh? Before you even put your toes on the floor, you have taken care of yourself, helping your body purge toxins while you log your first 2 glasses (or 16 ounces) of water for the day.

2) Still in the kitchen tidying up while the kettle comes to a boil, fill your 16-ounce sports bottle with tap water for the next day, adding 2 more tall glasses of water to your tally. (My bottle holds about 14 ounces, but this is close enough.) Stick it in the refrigerator, ready to grab when you go out for exercise or errands. It will be room temperature by the time you drink it. Plain tap water contains nutrients, some of which are lost in boiling, so my daily water intake combines both.

3) Pour the remainder of the boiled kettle water into a jug that holds about 32 ounces, or another 4 or so tall glasses of water. I cover my jug with a little piece of cloth to keep dust out. In the morning, your core drinking water for that day is waiting for you. The deal is, that jug must be empty by bedtime, bringing your combined total water consumption to 8 tall glasses, the recommended total of 64 ounces. Up here in the wilds of western Maine, some days are just too cold for drinking cool water, so I drink herbal tea, which counts in the tally.

Easy access to your jug of water is the key to success
Typically, I bring the jug to my desk, where I spend a good part of the day. I used to keep it in the kitchen to force myself to leave my chair to refill my glass. It was a good idea, but if I am deeply engaged in writing, I end up forgetting to take a break. One friend brings her water to the office in a thermos; another friend uses a big mason jar and tosses it into his truck. Whatever works for you!

Thirst of Another Kind
In 1974, I bought the pictured jug from a potter’s shop within the walls of the medieval French village of Carcassonne, just north of the Spanish border. My boyfriend and I were hitch-hiking our way to Barcelona for New Year’s Eve, for reasons I can no longer remember. On the Eve itself, the Ramblas promenade was crowded with cages of boisterous birds, flower stalls spilling over with blossoms, and revelers. It was intoxicating.

Around 11, we found ourselves in a second-floor dining room of long tables packed with men eating hot roasted chicken in straw baskets lined with newspaper. Without being given a menu or asked for our order, the waiter placed before us two baskets of chicken, crisp skin sparkling with salt. That was all the restaurant served—in addition to copious amounts of cold, gently fizzy cava. On the stroke of midnight, the men rose and began clapping. They gathered around us until we figured out what they wanted. When we kissed across the table, the men went wild. I have always wondered why they were not in the company of wives and girlfriends. But I did not speak Spanish and I was too shy to join my boyfriend in gamely trying to communicate through gesturing and shouting.

Years later I met the boyfriend again. We were happy to see each other, as well as happily married to other people. It was fun to reminisce. But he had no memory of eating chicken sparkling with salt in Barcelona—high on my list of life’s most romantic events. I felt crushed in the moment, and then a little sad for him. You see, every time I pour water from that pitcher, I still feel the intoxication—which has taken me years to realize had nothing at all to do with the boy or the cava.

Join me in raising a few glasses of water to love, in all its forms, during Heart Month! xox Deborah

What not to say

This hilarious short film by Lauren Rowe (a double-lung transplant recipient with cystic fibrosis) is brilliant. I saved sharing it for holiday time, when socializing can be a bit challenging for the chronically ill who attempt to join the party while also adhering to the health rules that keep us alive.

We humans are pretty amusing when we don’t know quite what to say. So, we often say the first thing that comes to mind, which is not always a good idea. Here’s a doozy from my own life when a friend learned that I had disability status: “You’re not disabled! I’ve seen you walk!” It was difficult to know where to begin…

You and I both know when we’ve spoken too fast out of awkwardness—signaled by the instant inward cringe and followed by the scramble to explain or apologize or escape as soon as possible, the hope for forgiveness. Perhaps when we encounter someone’s health restrictions, all we need to do is pause for a moment and offer a gentle smile, or simply say, “I understand or I respect that.” Besides, I can tell you from experience that those of us with medical challenges are sick of having to talk about or, worse, defend our restrictions and routines. As one of my MGH heart transplant docs said, “I don’t expect healthy people to understand the rules we ask our patients to live by. But I would certainly expect healthy people to respect those rules. Your life is at stake.” Yup, it’s serious. But Lauren Rowe makes me laugh about everything. xox Deborah

Post Your Emergency Call List at Home & Work

Following my first SCAD-induced heart attack, one of the first calming and practical systems that my husband, Jack, and I put into place was to post an EMERGENCY CALL LIST by every phone in the house. It was about the size of an index card, in type that was easy to read without glasses. I laminated copies for our cars and wallets, as well as for people taking care of me at home. This single action immediately lowered our anxiety. If something went wrong—at home or out-and-about—anyone who was with me knew exactly whom to call.

If you, dear fellow resident of Cardiac Land—or captive of any illness—have not been completely hijacked from your world and are able to work, imagine how helpful this little list would be to your concerned co-workers. A truck or a workbench is your office? Surely there is some visible place where you can post your list. Put pride and embarrassment aside and consider your loved ones. This simple list could save your life.

There have been many versions of our list, depending on circumstances and team members. The version here is our Emergency Call List as we waited at home for my heart transplant. Pre-transplant when Jack was working, his cell and office numbers were on the list. Now that I look at the attached list again, I realize his cell number should have been there! Perhaps I caught the omission and corrected it; I no longer remember. The point is, scrutinize your list from time to time and be sure it works for your current situation.

You may find “plowing” and such to be bizarre phone numbers for inclusion, but transplant patients who receive The Call must drop everything and go to the transplanting hospital. For me, that would mean almost three months in Boston. So, Jack and I prepared this list anticipating the needs of friends in charge of our house during any of Maine’s volatile seasons, which can involve snow, freezing wind, and power outages. xox Deborah

deborah's-emergency-call-list

 

FDA Asks Transplant Patients, “What’s it like?”

FDA slideOn September 27, 2016 I joined one of four panel discussions on living with an organ transplant—held at the Federal Drug Administration’s sprawling campus just outside of Washington, DC. Our organ transplant meeting was the last of 20 public meetings this year on different medical conditions explored in the FDA’s Patient-Focused Drug Development initiative. A panel of distinguished FDA doctors (MDs, PhDs) presided over the agenda:

Patient Panel 1: Life immediately post-transplant, including changes, symptoms, daily impacts.

Patient Panel 2 (my panel): Ongoing challenges in maintaining an organ transplant.

Scientific Panels 3 & 4: Medication adherence and interventions to mitigate non-adherence.

***JUNE 2017 UPDATE:
For the FDA’s excellent summary of various organ transplant patients’ experience, as well as insights from scientific panelists, click on this link:

https://www.fda.gov/ForIndustry/UserFees/PrescriptionDrugUserFee/ucm368342.htm

If you are considering or waiting for a heart transplant, you will gain an invaluable preview of a variety of challenges you may face post-transplantation—in addition to how great you will feel. These patients’ remarks, based on a range of organ transplant experiences, make concrete what transplanting clinicians mean when they counsel, “Transplantation is not a cure. It is a treatment. You are trading one set of challenges for another. BUT you are ALIVE.” If you are an organ recipient, you might take comfort in knowing that others are experiencing your side-effects and have found ways to lead good, engaged, and rewarding lives despite restrictions and complications.***

Speaking of post-transplant challenges, I nearly missed the meeting altogether because I was not quite recovered from a GI infection that had plagued me for six months. My situation illustrated what turned out to be a big topic of discussion that day: illnesses caused by immunosuppressants—the very drugs that prevent organ rejection and keep us alive.

Having finally received last-minute medical permission to travel, I was fragile but I was there, with Jack as my guardian. After months of virtual isolation and living on broth, I walked into a room of at least 300 people mingling sociably—a typical conference scene until you considered that almost everyone was powered by organs that were not their own. (Another 150 or so participated by webcast.) There was so much awe and gratitude in that room that meeting organizers announced that joy would be accepted as a given in our remarks, and we were to focus on the challenges of life post-transplant. The FDA wanted to hear our complaints.

Every participant had a moving story of pain and suffering, everyone was fighting for her life, and everyone was on a mission to save lives. It was an intense day. For private levity, Jack and I found ourselves referring to my fellow committed patient-activists by organ. The kidneys, for example, were out in force. They  comprised the majority of patients, families, and experts in attendance, and my new heart bled for them. Of course, I have shared hospital rooms with kidney transplant patients several times and personally endured kidney failure, as well as three days of dialysis. But now I was surrounded by an army of long-suffering, courageous kidneys, who had received one, two or even three transplants. And then there were the determined lungs—one of whom had cystic fibrosis and had endured two double-lung transplants—and the livers and the pancreases. And then the children, represented by one extraordinary 15-year-old girl who was utterly cool and smart and funny and sweet, despite kidney disasters her whole young life. I only found one other heart in the crowd and he was positively jolly, celebrating 23 years alive. But we didn’t have to talk about what that took. We both knew intimately.

It was a tough morning for an open heart, just escaped from her sick-bed, but my challenge that day was small potatoes (as we say in Maine) compared to the overwhelming issues in that room. In fact, I listened so intently to so many compelling tales of pain and suffering, that by the time it was my turn on Panel 2, I could barely speak and almost forgot to turn on the mic! But I’ll get to that later.

Here is my take on meeting issues that seemed most important to the cardiac transplant community:

  1. The biggest culprit in our complicated post-transplant lives—across organs—is our drugs, especially immunosuppressants. Everyone had stories of infections, cancers, toxic responses, GI issues, anxiety and depression struggles, and everything else that is listed as a side-effect of our medications and procedures. We, my fellow sweet hearts, are not alone.
  2. There is no “magic pill” known to the FDA that is under development to improve on immunosuppressants. While other medical conditions may have several treatment and drug options, organ transplantation does not. Immunosuppression is the primary life-saving therapy for our generation of organ recipients.
  3. The front line of research on organ/patient-specific immunosuppression therapy seems to be right in the doctor’s office: between individual physicians and their patients. Other patients and I emphasized the need for more research on transplantation’s “precision medicine,” as an improvement over the broad blast of immunosuppressants that is the current practice. A physician-panelist explained that most doctors are loathe to experiment with our immunosuppression out of “insecurity.” His self-deprecation was not lost on us. Any organ transplant clinician understands only too well that tweaks in drug load can put our lives at risk for rejection. Why mess with what’s working?
  4. Sadly, non-adherence to drug protocols is a big deterrent to a good and lasting life post-transplant. This discussion was particularly illuminating because I cannot imagine going through all this and then refusing to take my core transplant medications, no matter how disgusting the process and side-effects. But people do stop and for many understandable reasons, including economic, psychological, educational, sociological, and physical. Many patient-advocates expressed eagerness to be more fully engaged as capable people by their physicians. They asked for more in-depth explanations for exactly how our meds work and called for new, creative ways to educate patients about transplant drugs, especially resistant or at-risk patients. How much is misunderstanding at fault when patients skip a dose or two or three or all (!) and slide into rejection?

The FDA had asked me to focus my three minutes of panel time not on the heart transplant patient’s allopathic medical program, but specifically on the complementary or integrative therapies that I am also using to maintain my transplanted heart—for example, massage, osteopathy, yoga, reflexology, proper nutrition, exercise, the mind/body connection, scar tissue release and structural integration therapies.

While impressed with the serious interest on the part of the FDA, this request put me in a bit of a pickle. With only two hearts on the panels, how could we express the full experience of heart transplant graduates if my three minutes were dedicated to a slightly atypical approach? Furthermore, I feared being misunderstood. As a disciplined and collaborative heart transplant grad, I know my life depends on allopathic medicine. Anything extra that I do to support my heart transplant is fully approved by my beloved clinicians at Mass General Hospital in Boston, and you can be sure it does not interfere with my life-saving meds.

But the FDA had its reasons. Apparently, I was the only panelist to list counter-balancing therapies and daily disciplines in addition to the heart transplant graduate’s normal regimen of allopathic medications, procedures, and treatments. I was being asked to add something new to the FDA record.

Still, as I heard myself speak as a member of Panel 2, my assigned contribution felt lightweight in the context of all the pain and suffering expressed in that room. When our discussion facilitator asked how many in the room incorporated complementary or integrative therapies into their post-transplant routines, only a few of us raised our hands. So, feeling like a bit of a dud, I refrained from pressing the point. All that mattered, it seemed to me as the day went on, was that one clear, essential message seemed to be coming from all of us to the FDA: While immeasurably grateful to receive our organ transplants, we are being poisoned by the very drugs that save our lives.

Later, a physician followed me into the ladies’ room and thanked me for raising what she called “the difficult issue of patient responsibility” in organ transplantation, which she explained as leading clean lives and doing everything one can to bring the strongest and healthiest body possible to the medical situation. In the corridor, a few fellow transplant grads stopped to ask exactly what I was doing to manage daily side-effects and the long-range impact of toxic drugs and invasive procedures. One grad even asked for my delicious recipes for a prune lassi (one part organic, plain yogurt, one part divided between water and prune juice) and an Ayurvedic tea (equal parts fennel, coriander, and cumin seeds) to help with GI issues. It was a very funny bonding moment.

But on the flight home to Maine, dearest hearts, I got to thinking: How much of the pain and suffering that hung like a thick cloud in that conference room could be eased if more transplant graduates incorporated a holistic approach to healing and coping?

We had just learned that there is neither a “magic pill” nor medical research data to alter our current treatment by immunosuppressants. Other solutions—for example, avoiding a transplant altogether through regenerative cell biology and gene therapy—are even further in the future for most organs. As organ recipients today, we must live with the paradox of transplantation: The meds and procedures that save our lives also make us sick and often kill us.

So, could patient self-care actually be the frontier of cardiac transplantation today? With no magic coming to rescue us, what can we do to improve our own lives in the here and NOW? How can we—today, this very morning, tonight—better manage the toxicity of our medications through and out of our bodies? What behaviors do we need to continually assess and be prepared to release if they do not support the health of our precious organs and the body that houses them? If as advocates we are asking allopathic medicine to continuously improve, how willing are we to try new things, to change and grow?

It is not easy. But the way I see it is this: We owe the extra effort entailed to the 120,000 desperate people on the national wait-list and to the more than 8,000 people every year who die waiting for an organ transplant—22 people a day. Above all we owe extra effort to our donors, clinicians, and loved ones, who have made huge efforts and sacrifices for us.

While my supporting strategies may appear lightweight compared with the cath lab and kidney dialysis, I know they are giving me a decent life. I also suspect that my extra effort contributed to no rejection episodes in the 10 years I have lived with my lovely new heart.

So, here’s a thought: If more transplant graduates—in full partnership with their physicians—committed to plain old healthful living while sensibly combining allopathic and complementary therapies, maybe we patients would expand today’s frontier of transplantation just by living well.

Thank you, people of the FDA, for hosting this fascinating meeting and listening to us. I deeply respect your having asked me to raise the issue of non-allopathic supporting therapies and disciplines in organ transplantation. It took curiosity, creativity, and courage to invite discussion about strategies that are outside of the FDA’s jurisdiction—the same qualities, by the way, that it takes to live with a transplanted organ.

(Note: This fledging website will continue to share tips and tools that have worked for me—but only little by little because I, too, am leading my life as best I can with my perfectly lovely transplanted heart.)

 

Celebrate My 10th Re-birthday with Your QUESTIONS & NEXT STEPS

Ques&NS post

Sunday August 21, 2016, I celebrate my 10th re-birthday—10 years of life that would not have been mine were it not for the selfless kindness of my heart donor and donor family. August 21 is a sad day for my donor family, however, because it is the day they lost a life dear to them. So, would you help me love them by giving a big, heart-warming hug to any organ donors and families you may know? Their courage and generosity are among the highest expressions of human kindness in this troubled world—they are heroes of loving kindness.

In their honor, I decided to post on deborahdawheffernan.com another tool for managing life in Cardiac Land. For me, it is not enough to be grateful for a lovely new heart that beats strongly in my chest. If we are alive—whether we are cardiac patients dealing with angina or recovering from a heart transplant—we have a responsibility to manage our illness well and to live our lives as well as we can in honor of those whose lives have been cut short. It’s pretty simple for me. Thus, my website shares with you the practical side of gratitude in case you are needing a little guidance in how to honor people who have made sacrifices for you.

Introducing QUESTIONS & NEXT STEPS: your agenda for managing medical appointments

Under the TIPS & TOOLS page of my website, scroll down to YOUR MEDICAL NOTEBOOK and click on QUESTIONS & NEXT STEPS. I saved sharing my favorite notebook section until last. With this addition to my website, you now have every tool you need to manage the basics of Cardiac Land—a solid platform for building your own system over time. More TIPS & TOOLS for you will be added monthly, right here on my Blog. That is my intention, anyway; sometimes I am not well enough or I may simply be enjoying my life. To receive update notifications, please FOLLOW me on Facebook. I hope you will understand that I only “Friend” people I actually know.

Now go find a special bag for your basic, portable medical system

The accompanying photograph shows the golden yellow bag with bright green interior that I take to every medical appointment and hospitalization. My first bag was brown, in my closet from business days. Yuk. But guys like brown, I guess, so you choose whatever bag makes you happy! A dedicated backpack for the man-on-the go, perhaps? In the picture, my bag is resting on our big old bed, just as it always is when I am getting ready for another clinical visit. Inside, it holds:

  • my MEDICAL NOTEBOOK in girly pink (I promise, it was the only color available at the time!)
  • a yellow medications bag, in case of prescription checks or a surprise overnight stay in the hospital
  • a little bag (with hearts on it, from niece Clara) for hospital masks, gloves, hand sanitizer, and sanitizing wipes.

What an innocent I was on Sunday, August 21, 2006 when The Call came from MGH!

“We have a heart for Deborah!” Poor Jack: I instantly fell to the ground, scaring the heck out of him. Now, 10 years post-transplant—and almost 20 years post-first-SCAD and double-by-pass—I finally have my systems down. Most of them are contained in my cheerful yellow bag. It is never unpacked and always at the ready beside my medications table. If there is an emergency, Jack or I just grab and go.

And go I do! For a few years now my trips have not been limited to the hospital. At several dark points it was utterly unimaginable that Jack and I would now be spending a month or so every spring in Italy. Yes! You, too, can live your life while also a resident of Cardiac/Transplant Land! It just takes healing, courage, and a little organization. Pack your bag and go!

It is so very lucky to wake up, to be alive. So, happy re-birthday to you and me! xox Deborah

Gwen Stefani and MY HEART IS OPEN

Because heart disease can be pretty dreary stuff, I am trying to begin each blog section with the upbeat side of the patient experience as a reminder of the totality of our lives—our truly lucky lives—because if we are alive, no matter how complicated that life may be, we have possibility.

No one understands this better than my fellow heart transplant “graduates.” So, I think I found us a love song: MY HEART IS OPEN by Maroon 5—featuring Gwen Stefani. The first time I heard it, all I could think of was my beloved, anonymous donor. MY HEART IS OPEN has become “our” little anthem. First, Adam Levine (as ardent lover/donor heart) expresses desire to breathe again, to live again by being accepted. Gwen Stefani’s reply represents all of us who have experienced failing, broken hearts yet who are also reluctant to part with our history, our original life force.

That cross-roads was a terrifying moment for me, but at the same time I knew that life and love were only possible if I said YES.

Now, those of you who know me well will find it pretty funny that I even know who Gwen Stefani is, let alone that I am nuts about her. My niece Clara (10) can be fully credited because she introduced me to The Voice. When I was struggling with heart transplant adjustments, watching The Voice made me wild with hope and happiness. All this talent in the world! All this beautiful music! And Coach Gwen’s big, red-lipsticked smile and kind, insightful advice for developing performers simply grabbed my new, fragile little heart forever.

Just today, while grocery shopping, I found myself sneaking peaks at gossip magazines for any news of my pal Gwen’s romance with Blake what’s-his-name. Such is my love, that if this pop goddess made me happy during dark times, then I am very keen on her happiness, too.

In MY HEART IS OPEN, Gwen’s final YES, YES, YES makes me weep with the enormity of not only the heart failure patient’s decision to have her old heart cut out of her body and replaced by a stranger’s, but also of that generous stranger’s decision to give his own heart so that someone else may live, though he cannot.

By the end of this love song, Gwen’s YES is a tentative YES (listen to her exquisite phrasing), even a scared YES, but it is resounding. YES is the key to so much of life, no matter what your story. People often ask me how I have gotten through almost 20 years of cardiac disasters. If I were to distill it all down to one word, I think that YES may be the simple answer. YES is the heart-opener. When you keep your heart open, despite trepidation, you are more likely to find a way through. At least that’s what has worked for me in life, even if YES has also included a few bonks on the nose. xox Deborah

School Lunch Can Be Fun & Delicious

My first blog for you: a hilarious school lunch video that both warms the heart and expresses the deepest reason for my commitment to heart health awareness: our children. (Note how happy these kids are gobbling up one healthful choice, deliciously prepared…)

At the time of my first heart attack, I had been in shape for the fight of my life. Most Americans are not. My doctors often remind me that my lifetime of stellar health habits made all the difference in my survival of two SCAD-induced MIs and a heart transplant. But I had help, beginning with the good luck of being raised in a family that was physically active and ate healthfully—pleasures that Jack and I have passed on to every child in our lives. Not all families are so lucky as to have this generational legacy. I would not wish what I have gone through on anyone.

This is where schools come in. Schools guide our children through their most formative years, educating and preparing kids for productive lives as adults. Productivity (beginning in the classroom) relies on good health, and no preparation for a healthy life is as essential and pleasant as eating well. Yet many school menus feed our children heart disease and quench their thirst with diabetes—diseases that are largely preventable through diet and exercise. As a society, we have a choice. Invest now in prevention—by training young taste buds to love the flavors of real food (presented colorfully, with fun and flair!)—or pay later with soaring healthcare costs, personal devastation, and lost productivity in the work place and for our nation. Please do what you can at home and in your school system to prevent the development of cardiovascular disease and diabetes in our children. Cheers!