Using the worldwide web to build a powerful heart failure resource network!

Because I write posts about heart failure, I am often on-line researching various topics related to heart failure.  Over the approximately two years that I have been preparing posts, I have found a number of websites founded in the United States that I often visit to find definitive information about the condition, treatment options, diet, etc.  Among these are the American Heart Association, the Mayo Clinic, the Cleveland Clinic, CardioSmart and the Heart Failure Society of America. 

I am grateful that these websites provide an in-depth medical perspective on a condition that haunts me, and overall guidance on heart health issues.  These websites provide a wealth of resources on how to manage your heart failure, and even some inspirational stories from patients.   My surfing of the web has also identified blogs from individuals with heart failure and other chronic conditions, as well as the websites for Mended Hearts and Mended Little Hearts.  These websites are operated by a non-profit organization that boasts the largest peer-to-peer heart patient support network in the world. 
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I am grateful for the abundant resources available in the United States for heart failure patients.  But I have also come to appreciate that there are doctors, organizations and patients in many other countries that are stepping up to meet and overcome the challenges of heart failure.  It should not surprise us that the United States is not the only country that can make a positive impact on extending the quality and length of life for those challenged by heart issues.  After all, the first human heart transplant occurred in South Africa.  The first pacemaker implantation occurred in Sweden.  

So I think it is reasonable to investigate international sources to learn about heart health resources and treatments.  Thankfully, we now have an internet that allows me to explore easily the resources and lessons learned in other countries.  I do not need to buy a plane ticket, pack a suitcase, undergo a security screening, or even get out of the comfort of my pajamas.  All I have to do is type, surf and click and the world is at my beck and call.

My web surfing has established that the wealth of valuable information in websites from international sources.  Sometimes it is guidance on how to manage the many new restrictions of heart failure.  In general, the guidance tracks with what the guidance I get from my doctors.  For example, a constant on all these websites is to restrict fluid intake - the same advice I get from my doctors.  The guidance I received told me to limit it to 64 fluid ounces, and cautioned that I needed to include all sources of fluid:  drinks, fruits, vegetables, soups, etc.  

But I was struggling with the question of how does one calculate fluid in something like a cantaloupe or any fruit or vegetable?  To cover what do not clearly fall into the drink category, I would just allow a cushion of about 6 fluid ounces per day to make sure so that I would not exceed 64 ounces.  But then I found the Australian Heart Foundation website, known as heartfoundation.org.au.  They have a booklet on heart failure that includes a chart for evaluating fluid content in non-drink items.  How handy!     

Sometimes what I read on an international website spurs a new, startling revelation about the disease and how lucky I am to live in the 21st century.  For example, here is a valuable insight from the website of the heart and stroke foundation of Canada:  “Heart failure is on the rise as more people survive heart attacks and other acute heart conditions.  As people with damaged hearts are living longer, they become more susceptible to heart failure.“  Of course, the preference would be that heart failure cease to exist.  But isn’t it a good thing that people are surviving heart conditions that were once an immediate death sentence?  
Doesn’t this mean that if medical experts developed treatments that allowed those patients to survive (albeit with heart failure), they will eventually find treatments so heart failure patients will live better, longer lives?

Early on in the heart failure challenge, I began to wonder if maybe I was overreacting to the fairly constant symptom of fatigue.  Maybe my friends were frustrated with me because I couldn’t keep up, and sometimes I declined to even try.  The website for the British Heart Foundation has been enormously helpful in establishing that many patients, not just me, struggle with the incapacitating aspects of heart failure.  It also validated my realization that it is not selfish to make managing my heart failure the most important thing in my life, regardless of the temptation to keep up with everyone else: 

• “It's tempting to overstretch yourself and try to keep up with other people, but this can make you feel worse. While it can be hard to force yourself to rest, particularly if you are feeling well, in the long run it will mean that you are able to keep your condition and symptoms under control. Make your health your number one priority.”

The website of the European Society of Cardiology (escardio.org) has a white-paper from 2014 entitled Heart failure:  Preventing Death and Disease worldwide.  The paper illustrates that heart failure is a serious condition worldwide.  It tells us that in that in 2014 there were 26 million people in the world with heart failure.  The website also noted that the survival rates were worse than those for breast, bowel or prostate cancer.  However, despite those gloomy facts, the paper emphasized that awareness of the disease is poor. 

Indeed, I have often wondered why I was not aware of heart failure until I met the diagnosis face-to-face.  Well, this international organization made a very simple but telling observation:  Although often life-threatening, the symptoms of heart failure breathlessness, swollen limbs, and fatigue) are usually less dramatic than those associated with a heart attack.  So here is another similarity of patients worldwide.  Unless something screams out at us or is very dramatic in terms of symptoms, we tend to underplay the severity of the condition we must learn to manage.

Many websites emphasized the need for emotional support networks for patients.  In this regard, I found a very encouraging British website maintained by an organization known as Pumping Marvellous.  (So I know spell check says this is incorrect, but it is apparently the way the British spell the word marvelous).  The website advises:  “The Pumping Marvellous Foundation is the UK's Heart Failure Charity.  Join our Heart Failure patient and care-giver communities and see how we can support you.”

I was thrilled!  First, the name of the website made me laugh.  I immediately thought of the British sitcom “Absolutely Fabulous”, a television show in the late 1990's that I loved.  In this case, the exaggerated term “marvelous” has particular relevance to me.  After five years of heart failure, I am beginning to be more optimistic about my heart failure.  It is a blessing that my heart is still pumping away despite being dilated and weak, and despite having an abysmally low ejection fraction.  So how Pumping Marvelous is that!

Second, as you may have already guessed, I am a bit of a Britophile.  While I am perfectly proud and content to be an American citizen, I also have ancestry roots in the British Isles.  So when I majored in history in college, I had a bit of a specialty in British history (especially the Tudor Stuart period).  I had an unofficial minor in English, and I studied an array of British authors:  Shakespeare, Austen, Sterne, Wodehouse, Dickens, etc.  In particular, I adore the droll character and the deadpan delivery that is the trademark of British comedy. 

So as I paged through the Pumping Marvellous website, I found it engaging and engrossing.  It was engaging because of the understated sense of humor and warmth.  It was engrossing because the things that were said tugged at my emotions because the people who created the organization obviously had lived the lives of heart failure patients.

I love that there is a “Talk to Someone” item on the website that says:  “Communication isn’t all about talking but we think talking is the best form of communication. If you need some friendly help from people who have heart failure, and have been there then please feel free to give us a call. We run a scheme called heart buddy where we try and solve your problems through our patient educators. If we can’t answer your question first time around then we will know someone who can.”

I cannot begin to tell you how many times in my heart failure journey I needed a heart buddy.  The doctors and nurses are always sympathetic, and have always been my biggest fans.  My therapist has been instrumental in helping me work through my conflicted emotions about both the darkness and the opportunities presented by my heart failure.  But the reality of the situation is that none of these people actually lived the experience of heart failure.   Did they really know what it was like to be struggling for breath during stair climbs that I had once performed so easily?  Had they ever felt the bone crushing fatigue that could result from a day that may have been too active, and made you a depressed couch potato?  It dawned on me, no matter which country you live in and no matter the language you speak, each heart failure patient has the same need.  We need a Sherpa to guide us through the lifelong heart failure trek.   

It struck me that as a world we definitely benefit from the diversities of the people who live on this planet. 
But the world population can also benefit by understanding that we are alike in so many ways.  There is a benefit in an international, and not just a domestic, heart perspective.  But the benefit is more than just compiling more heart health data.  Knowing that others are struggling with the same challenges of the heart and other issues can help to unite us.

​We inhabit a world that seems continually are at war, and we struggle to find common ground.  But maybe it is in the realm of grave health matters where we can begin to see what it is that is our biggest enemy.  Maybe the powerful tyrants we need to defeat include those that are not human.  Maybe the most dangerous tyrants include those that lurk out there, and invade our bodies before we have a chance to shut down the danger.   We need to unite together to learn how to overcome these tyrants, and that in turn will empower us to defeat human tyrants.  So I have faith that my brothers and sisters throughout this world are worthy allies, and I will benefit from their knowledge, their medical breakthroughs and their experiences.  And I will also walk with them as we try to form peaceful coalitions as citizens of this planet.