After learning that you have a disease that will change your life and may lead to your death,

you may suddenly feel chilled by isolation —like you are frozen in ice that separates you from the rest of the world. My first responsibility is to reassure you that you are warm, and that you are not alone.

We are all on a journey and your journey has now crossed and connected into mine. We care for many people who have been diagnosed with heart failure and we help many to help themselves improve to a long and fulfilling journey for which no end is in sight. Wherever this journey goes, we will make it with you.

Once you realize that we are with you, you need to realize that the rest of the world is still there for you, too. You walk past people every day who have a diagnosis from which they may die. Some people know it and some don’t, but it is the human condition to live, to embrace life, sometimes to lose it before they are ready. This fact does not isolate you. It links you in, and you begin to see the mystery and the power of human existence, the brightness of colors, the harmony, the melodies. None of these things depend on how long they last so their truth is complete in the moment.

Once you’ve faced the fact that we don’t know where your journey will take you, you must learn to live with uncertainty. We are all decorated in different shades of uncertainty. Everyone must learn to accept and sometimes embrace uncertainty as central to life. There are uncertainties about careers, about love, about finances, about children and their uncertainties…so many uncertainties.

Some people with heart disease want to know their chances, their risk scores for death, their percentages for survival. While we sometimes use them to recommend therapies for large populations, those scores will never describe you, or any other single person. You will never be five percent dead or 95 percent dead—you will be 100 percent alive or dead in any given moment. So don’t look too hard at numbers.

I began taking care of patients with heart failure in 1993 because we were starting the first heart transplant program in Southern California. At that time, heart failure was not a field. It was felt to be a dead end, and for many patients back then, it was. We had no idea that so many people out there had heart failure. It was the hope for a heart transplant that brought them out of the communities where they were told that their lives were over. Based on limited information, patients were all told that they would die within six months without a heart transplant.

I was just graduating from my cardiology fellowship at that time. Our waiting list, and the waiting times, grew steadily longer. We quickly adopted many patients who had to wait for heart transplants. We adopted even more who were not eligible for the limited number of hearts for transplantation.

Together with one of my mentors, Jan Tillisch, we challenged the idea that there was nothing else to do for these patients. That challenge led us to develop a strategy that we called “Take the Congestion Out of Heart Failure.” This translated eventually into the concept of tailoring therapy to each individual patient to find the optimal working conditions for each heart.

Dr. Gregg Fonarow started his training soon after, and he demonstrated remarkably good outcomes for many of the patients who were referred to us and who did not get transplants. Some patients told us that they felt so well that they no longer wanted a heart transplant, and they turned their waiting list beepers back in. We were able to report how many patients could achieve exercise capacity and quality of life that was similar to that of patients who’d had heart transplants.

As hopes for a transplant concentrated many patients at transplant centers, more and more therapies were developed that, when combined with care, have together improved the function of weak hearts. Dr Fonarow has led valiant progress to make sure that patients everywhere are getting those therapies.

Lynn R. Punnoose, M.D., one of my trainees in Boston, reports a new era in which almost a third of clinic patients with heart failure have attained major improvement in heart function. I think of it as heart failure in remission. The term ‘remission’ reminds patients they need to remain attentive to taking their medications and be vigilant for signs of worsening.

One of the trends that I find most exciting is the progress made over the past 20 years in developing a strategy for remote monitoring of patients at home. They can learn to measure their heart filling and their blood pressures to tailor therapy day-by-day that improve and maintain heart function and decrease the risk of later decline.

The latest development is that we are now doing research to see how patients will be able to monitor their own heart values and empower them to be more active in managing their disease. We have some early data that patients who can see their heart profiles at home feel more empowered over and in control of their disease. The coming era will see a major increase in how we collect and act upon patient reporting of their symptoms and their concerns.

Finally, as someone who has been in this field long before it was considered a field, I join my senior colleagues in apologizing for our failure to find better names for “heart failure.” Failure of anything suggests that it is at the end. We don’t have clinics for kidney failure or lung failure. The major progress in heart failure outcomes make “heart failure” the wrong term.

From a condemnation of 50 percent who meet with five years survival, we are now looking at over 80 percent who achieve a five-year survival rate in patients without other major diseases. We are now coming together to agree on a better term. My favorite is Challenged Heart Function (CHF).

I am hoping that this will encourage more young physicians to train in the care of patients with heart conditions, but currently there are many training positions going unfilled. Dr. Fonarow and I have found this field to be so challenging but also rewarding, and we want it to continue to thrive. I have trained over 60 fellows in heart failure—over half of them women—who all still take care of patients in different stages of Challenged Heart Function, CHF.

I hope that changing the term “heart failure” to something more hopeful will encourage more physicians and nurses and nurse practitioners to join us in this work. I have talked with many patients who said they would choose to leave a Heart Failure clinic and walk more confidently toward a clinic for Challenged Heart Function. We can all accept challenges with hope.