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At almost 59, I know everyone has a story that shapes their life in many ways. Several medical challenges are part of my story but managing heart failure (HF) with preserved ejection fraction has required the most time, energy, patience, and support to experience the active life that I want.
My story began with Hodgkin lymphoma stage 2A at age 19 in 1978 that was treated with radiation. I was told I was lucky: if I had to get cancer, Hodgkin lymphoma was the kind to get because they could cure it; if it had been 10 years earlier I likely would have died. No one knew that the best available treatment then would cause more health issues later. After completing treatment, I thought about Hodgkin disease only intermittently when an annual checkup approached or I felt a lump that caused angst until I would find out it was nothing.
I am not a great athlete but I love being active. I was a devoted jogger and have dabbled in everything from roller blading to water skiing. In 1998, 20 years after my Hodgkin diagnosis, my ability to be active started to be compromised: on my daughter’s birthday, I suddenly lost vision in my left eye briefly, like a shade going down and up. A few days later, for some nagging reason, I called my oncologist in case the incident was significant. A string of emergency appointments concluded with a carotid stenosis diagnosis from radiation damage. A cardiologist and neurologist at a regional hospital were consulted. I was put on beta-blockers and angiotensin-converting enzyme inhibitors.
Not long after, I complained of shortness of breath, but no one considered I might have a major heart problem; my cardiologist at the time attributed it to the beta-blockers. It seemed the obvious answer and I accepted it. As more challenges arose, I began to ask more questions, push my physicians more, and even sought new physicians a few times.
In 2002, at age 42, I was having increasing difficulty breathing with any exertion. It had been worsening over many months, but I prided myself on living a healthy lifestyle and thought I just was not exercising enough. It got so bad that I saw my primary care provider, went from her office to the emergency department at a regional hospital, and was transferred by ambulance to Massachusetts General Hospital. My diagnosis of a 90% blocked left main and right coronary artery, and the path to coronary artery bypass grafting (CABG) 5 days later was a shock. This was one of the scariest times in my life. Shortness of breath was a frustration, but I thought it would be diagnosed as asthma or something not serious. My son was in fifth grade and my daughter in eighth: I wanted more than anything to continue to be an active mom and could not leave my husband to manage everything.
With my lymphoma, CABG, and subsequent bouts with breast cancer and melanoma, there was a problem and a way to fix it: recover and get back to my life. However, after the CABG, the shortness of breath progressed. It was then that I received the next diagnosis related to radiation: restrictive cardiomyopathy caused by scarring of the heart muscle. This diagnosis and resulting HF with preserved ejection fraction have required adjustments in most aspects of my life from diet and fluid management to exercise and rest. It has shaped the travel I can do and activities I can participate in. The hardest thing is that there is never a day off. Never. Sometimes this causes mental fatigue. I am too scared of fluid build up to ever skip a day of eating a very-low-sodium diet. I worry that if I take a break from exercising I will never regain my fitness level that I work hard to maintain.
I have had to develop an acceptance that although some things are within my control, there are still days when I do not feel well despite my best efforts to do everything right. I have had to get used to my “new normal” several times when HF has worsened. I have struggled with living with uncertainty that has similarities to the anxiety of cancer recurrence whenever something feels off.
Once, when I was asking unanswerable questions about the future of my health, a physician said: “you need good short-term outcomes to have good long-term outcomes.” When I struggle, I remember this and concentrate on taking care of the health that I have, staying optimistic, and being grateful. I remind myself that many are far worse off than I am with all sorts of challenges. I focus on what is important to me and figure out ways to adapt. When I cannot be as active as I would like, I still dress in exercise clothes to do a slow walk. Perhaps that is my equivalent of dressing for the job you want not the one you have.
Socializing often with friends is important so my husband and I started a co-ed book club. The monthly gathering is pot luck so I bring a low-sodium salad that I can eat. When I do not feel well, I think about feeling better the next day or week and keep making plans based on that. A year ago, I did not think I would ever participate in an aerobics class again. Now with a new medication program, I enjoy a weekly Zumba class at my pace. I do not know how long this will last but living in the moment is important too.
At the crisis point of my CABG, I began to understand the value of a strong support system. Friends, family, physicians, and even acquaintances lent a hand. I was appreciative but am even more grateful for the people who support me day in and day out through the chronic conditions. First is my husband, Jim, the love of my life, his unwavering support keeps me going. He cheers me on daily in my commitment to exercise and makes sure I am safe doing it. He loves me despite my weaknesses, he knows how to gently rein me in when I push myself too hard, he takes up the slack in household duties when I am not feeling well, he is a team player when it comes to my low-sodium diet, and he maintains an unbelievable calm in the face of crisis when I know he is just as afraid as I am. He helps me figure out ways to do things I want to do. My adult children are always there for me. I am honest with them about my diagnoses but tried to protect them from worry about my health when they were younger. Now they watch out for me with an eagle eye. In turn, it is my responsibility to take the best care of myself that I can to limit the support I need.
I have a dear friend that I met in 1993 when we were both young mothers with active toddlers. This friendship is special because as it formed based on compatible personalities and common interests, we discovered that we had both gone through Hodgkin lymphoma. She too has faced long-term health challenges from treatment. Not only do we share fun times like all good friends do, we understand each other’s spoken and unspoken anxieties in ways that others cannot.
My other hero is my cardiologist. Since I met him in 2002, he has been kind, thoughtful, patient, and caring about my life. He helps me understand my health conditions in a way that makes me confident in his advice and decisions. My direct communication with him has been invaluable, often providing reassurance when I most need it. I have cried in his office and he knows when to comfort me and when to push me just enough to not despair. He has helped me truly learn that medicine is art and science. He has told me when he just does not know the answer but he has never given up on me. He collaborates with his colleagues and my other specialists to work toward the best outcomes, and he always looks for new options to help me.
What makes this physician so special? He views me as a person not a diagnosis. He starts every appointment by asking me “What’s going on?” When he does, he is referring to events in my life besides the medical ones, and genuinely cares about my response. I have also realized that open-ended questions probably offer as much insight into my physical status as his examination or any tests do. Because my daughter and son-in-law are young physicians, I know about the pressures of electronic medical records and thus appreciate even more that my physician always looks at me during our conversation, is never distracted by a keyboard, and does not let a checklist of questions control our discussion. He often shares something about his life that makes him real to me too, like the time I had plans to go to Israel when battling nasty pleural effusions and he not only told me about his visit the prior year but recommended a tour guide who could accommodate my limitations. His caring helps me to thrive as much as his excellent medical skills.
Everyone has different support systems, but individuals with health challenges need emotional and physical support all in one. I am lucky because I have always had access to excellent medical care, good health insurance, a loving supportive family, and the socioeconomic situation that makes my life comfortable. I realize not everyone is as lucky. I hope that heightened awareness about the value of support in those with HF, increased education about living with the condition, and greater empathy for the challenges will allow more patients to have a strong support system.
For those lacking support, there are ways to build a support structure. Find someone on your medical team who can be your advocate. It may be your physician, a nurse practitioner, a social worker, or someone else. Have the patience to help friends and family understand your challenges and frustrations so they know how to be supportive. Often, people just do not know what to do. Try many support options to find what works best for you. I joined a low-sodium Facebook group called “Shakin’ the Salt” and one called “Congestive Heart Failure.” They are places where people vent to others that understand, share tips and successes, ask for thoughts and prayers, make jokes, and embrace the common bond of their challenges. Many community organizations sponsor groups that meet to share ways to manage chronic illness (e.g., http://www.healthyliving4me.org/programs/). Organizations, such as Heart Failure Society of America, WomenHeart, and Mended Hearts, offer webinars, online chats, and even in-person supportive gatherings. Find satisfaction by engaging with people who share your interest in things that you are capable of doing. Volunteering to do something that helps others can also be very fulfilling. Look for new opportunities to stay engaged in your life.
Although I live with HF with preserved ejection fraction, I am doing my best to live life to its fullest despite the diagnosis. I am indeed lucky and I cherish my life.
Please note: Ms. Tenner author has reported that she has no relationships relevant to the contents of this paper to disclose.
- 2018 American College of Cardiology Foundation