Heart failure and its lessons

This I have learnt...

It has been almost two years since my heart attack and during this period there is much I have learnt about myself and about the world around me. The thought of being hanged in the morning, as they say, wonderfully concentrates the mind. But there are a few things that have imprinted themselves on me during this period…

Of that the most important is accepting the infinite complexity of the human body and mind. There are more things in heaven and earth than are dreamt of in our philosophy. Despite the rapid advances in medical science and technology, there is much the medical profession still does not know about the human mind and body. It is well to remember this even as the various medical experts pronounce verdicts on your well being. The fact is that sometimes even they don’t know.

Nothing illustrated this more vividly than the recovery of Norman Cousins from an unexplained illness by the powers released through his viewing humorous movies. In August 1964, Norman Cousins flew home from a trip abroad with a slight fever. This malaise rapidly deepened and within a week he could not move his neck, arms and legs. His sedimentation rate was over 80 and soon moved up to 115, generally considered to be a sign of a critical condition. He consulted a large number of specialists who diagnosed that he was suffering from a serious collagen illness. One of the specialist conveyed that Cousins had one chance in five hundred for full recovery, adding that he had not personally witnessed a recovery from this comprehensive condition. Cousins started his own research and became convinced that if negative emotions produce negative chemical changes in the body; wouldn’t the positive emotions produce positive chemical changes? Was it possible that love, hope, faith, laughter, confidence, and the will to live have therapeutic value? He checked out of the hospital and into a hotel nearby, rented old Marx brothers movies and laughed his way back to life. He died in 1990 almost 26 years after he was given no chance of surviving. As he notes in his book “Anatomy of an Illness”, “Never underestimate the capacity of the human mind and body to regenerate- even when the prospects seem most wretched. The life force may be the least understood force on earth. William James said that human beings tended to live too far within self-imposed limits. It is possible that these limits will recede when we respect more fully the natural drive of the human mind and body towards perfectibility and regeneration. Protecting and cherishing that natural drive may well represent the finest exercise of human freedom.”

It is also not enough to only rely on the best hospital in the world or on the best surgeon in the world. While it is reassuring to have access to the best in the world, again the fact is that even the most renowned of medical experts can sometimes make mistakes. So there is need for care in accepting a verdict, any verdict, unsupported by more than one expert, especially when the pronouncement is about the end of your life. The case of Art Buchwald provides a salutary lesson.

In September 2005, Art was diagnosed with an acute kidney problem, which led to the removal of a leg. He was told that if he did not have his leg removed, he would die of gangrene- a slow and painful death. After the operation, the dye used to perform the angiogram led to a complete failure of his kidneys and he was forced to begin dialysis. After twelve dialysis he decided that did not want to continue and he checked into a Washington hospice for what he thought would be at best a two or three week stay. The purpose of a hospice to let you die with dignity and make death easier on you and your family. You can enter a hospice only if your doctor certifies that you have less than six months to live. But six months later, he was still alive contrary to all prognostications of his doctors. He went back to his doctors to find out what happened. They said at the time Art decided to enter the hospice to end his days peacefully, his “kidneys were not functioning. Gradually the kidneys began to rally…It became clear that the insult to the kidneys caused by the angiogram dye was resolving and now you no longer have both acute and chronic kidney failure, but just kidney disease.” And the topper to a man in a hospice “If there is no further injury to your kidneys you can have a reasonable life without dialysis”. So beware of the certainty of medical specialists. In the words of Reagan “trust but verify”!

In the last few years, fortunately, the internet has grown to be able to provide a wealth of information and data on the remotest of diseases. If you are to get the best of treatment, it is essential for you to become an advocate for yourself in the medical setting and for this you need to educate yourself before you step into a doctor’s office. Too many of us surrender our minds as soon as we face an expert and believe that he will prescribe the best course for you. Actually our attitude to the medical profession today is no different to the ancient tribe’s aeons ago when they went to the witch doctors for a cure for their ailments. While we certainly cannot do without the medical expertise of the doctors, it is essential to remember that when you ask informed questions or raise issues based on your personal experience, you are helping not hindering him in his desire to cure you. But you need to be your own advocate armed with the latest data you can find. You also need to resist the tyranny of medical statistics to define your specific problem or prospects for a cure. The statistics are often based on a population that you may not be a part of but which is the only one available. Another source of practical information and data are the various support forums that have sprung up on the internet e.g. the CHF forum on patients of heart failure. Not only do they provide support but they are also a wealth of information on the impact of various medicines and technology on individual patients with similar diseases.

It is important to understand the limits of technology as well. There has been a tremendous growth in drugs and technology in the US in the past few decades and there is a great temptation to believe that the latest technology will somehow provide the cure for all diseases.

Sometimes the very technology, which is meant to save you pain and your life, can end it. A few weeks ago, the Washington Post had a story on how “Devices can interfere with peaceful death. “ Many heart patients are implanted with an implantable defibrillator (ICD) – there are about half a million of them in the US. Unlike a pace maker, which delivers small electrical pulses if the heart rhythm is too slow, an ICD sends a large shock if the heart rhythm is too fast or chaotic. About the size of a stopwatch, the ICD is implanted under the skin near the shoulders and wires are threaded through blood vessels to the heart. If a fast or chaotic rhythm is detected according to norms preset in the ICD, a capacitor sends a rather powerful electrical shock through the wires – much like the heart paddles used in hospitals – to jolt the heart back to a normal rate. The problem arises if the patient is dying of other causes or even if the heart is failing since the shock delivered by an ICD is like being “kicked in the chest by a horse”. The only way to turn off the device is by use of specialized magnets or from a remote site by the device manufacturer. But the manufacturers and the nurses will not summon the device technicians till there is a written order from a doctor! So a device meant to prolong your life can become the unwitting tool of further pain at your journeys end. Technology can sometimes outpace the ethics and medical dilemmas they bring in their wake.

On a more personal front, the greatest danger for a patient lies in the danger of invalidism or becoming and acting like an invalid. The person, who is put on notice by his doctor that he has a “weak or bad heart”, invariably starts to live a life of reduced expectations, to take slower and fewer steps, and to move tentatively in the outside world. I had called it “life in slow motion” when I was recovering from the heart attack in Cleveland after the surgery. It is true that you have a sense of being locked into a body that is inadequate for its needs, the sense of living under a lowered ceiling, the sense of having to separate oneself from vital prospects, the sense of coming to terms with bleakness. But how does one avoid the feeling of being an invalid when the underlying conditions create and indeed seem to dictate it, when your support system of loved ones insists on helping you over the smallest hurdles, when friends drop by and want casually to take a photograph with you (as a memory when you were alive!)? When your doctors tell you that your heart is weak and must be spared the strains that other people routinely and joyously bear, how do you go through life without flinching when you approach stairs or hilly streets or children reaching out to be lifted or hanging a picture on the wall or shifting a box of books?

There is, however, a difference between being an invalid and thinking and acting like one. I had reacted violently when my family suggested that I start using a wheelchair to get around but came around to the view that perhaps for the long journeys in airports it was not such a bad idea. One has to come to terms with the physical limitations that a weak heart would require but at the same time one does not have to surrender to it completely and become an invalid. Few of us will pass through our lifetime without the challenge of one or more serious sickness. It is also possible that recovery may not always be within easy reach. But we have the obligation to ourselves and those we love not to invite defeat by being defeatist. The challenge is to figure out how to do that when you are in your depths of despair and then to have the emotional strength to follow it up. I had once said that sometimes accepting the inevitable was easy, it was the daily minutiae of life that was the hard part. Each of us has to find our own path to this balance. This may be a mix of routine and the new to keep you alive and retaining a capacity of outrage and for passion to give piquancy to your life. Even while you accept the limitations that life imposes on you, it helps to create new passions whether it be writing or traveling or teaching, because they all force a focus on the possible future away from the painful present.

Too often we forget the most important person in this whole saga – the caregiver be it a spouse, a child or a parent. The fact is that many diseases strike not only the patient but the entire family. Sometimes I think the family members are the ones who suffer the most because even when they are in pain and in anguish as they see their loved ones suffer, they are not able to show it. They are forced to live a double life - putting on a brave face for the patient lest he becomes despondent- one required for their own normal life. The patient often forgets that he is going to leave behind another patient, his caregiver, if he is not careful. The care and nurturing of caregivers needs to be an important part of a patient’s life plan for life will go on without you. For a patient the world beyond his or her pain does not often exist but there is a need to break out of the narcissistic phase that a serious illness almost always implies. Thinking of the caregiver and her future without you may be painful but you need to think about it and plan for it so that she can live her life even without you.

There is a tendency especially as an illness drags out with no prospect of immediate recovery to expect the worst. But it is also true that positive emotions- hope, faith, love and laughter, the will to live—can have salutary effects on the body’s chemistry and functions and contribute to the natural healing processes of the heart. It is well to remember that the body has a unique ability to heal itself in ways that medical science is still grappling with. It was Norman Cousins who said that “confidence, deep purpose, joyousness, laughter and the will to live are good conditioning agents and their value should never be underestimated…the body’s drive to recuperate may not work under all circumstances but it works often enough to warrant one’s confidence and special effort.. For there is never a time when the nourishment one puts into one’s body or one’s mind is not essential to health.”

I had once asked an old family friend, who had weathered many a storm in his life, but even at the age of eighty had a spring in his step and a sparkle in his eyes, how he did it. He had told me he woke up each morning just happy to be alive in this wonderful world, and to be able to give thanks that he was healthy and was still able to do the things he loved to do. More than anything else, a love of life and for life seems to be an essential prerequisite to recovery.