Heart Failure Death Statistics: Don’t believe what you read on the internet

Editor’s note: The following guest post by Mary Knudson originally appeared on her blog, Heart Sense: A Blog About Heart Failure. Knudson worked for 17 years as a medical writer for The Baltimore Sun and currently teaches science and medical writing at Johns Hopkins University. Along with Edward Kasper, clinical chief of cardiology at Johns Hopkins Hospital, she is the co-author of the highly praised book, Living Well with Heart Failure .

By Mary Knudson

In its website section on heart failure facts, the Heart Failure Society of America directly faces the question all people with heart failure and their loved ones desperately want to know:

“Q: What is the prognosis for a patient with heart failure?

A: Less than 50 percent of patients are living five years after their initial diagnosis and less than 25 percent are alive at 10 years. Poor prognosis can be attributed to a limited understanding of how the heart weakens and insufficient private and government funding.”

I was startled to see those grim statistics on the HFSA website, given that clinical studies published in peer-reviewed journals have shown that ACE inhibitors and beta blockers prolong lives of people with heart failure and in the last decade those medicines have become standard recommended therapy.  Implanted defibrillators known as ICDs that prevent sudden death by shocking the heart when the heart goes into a chaotic rhythm, cardiac resynchronization therapy (CRT) which corrects abnormal beating of the left ventricle, and other effective treatments have also grown in use the last decade.

I also felt uneasy reading the HFSA answer that tied “poor prognosis” to “insufficient private and government funding.”  That seemed to have a political tinge to it, out of place in an answer directed to worried patients and family members about how long someone can live with a diagnosis of heart failure.  Many conditions can cause heart failure in which the heart is not pumping out enough blood to meet the needs of the body.  When a patient with heart failure has a poor prognosis, there can be any number of reasons, including these:  the doctor did not order the most effective medications that could have prevented progression of the heart failure, the patient didn’t faithfully take the correctly prescribed medications either because she couldn’t afford them or was not reliable, the patient didn’t observe a low-sodium, low-fat diet and get regular exercise, and, frequently, the patient has other significant health problems.  Also, despite excellent care, a patient may have a heart too damaged from a heart attack or from a genetic malfunction to be able to successfully pull out of heart failure.  But I doubt any doctor ever tells a patient’s family, “Your husband and father is in late-stage heart failure and has only a few months to live because the government didn’t fund enough grant money for heart failure research.”

Working on the assumption that a journalist or a person with heart failure or, for that matter, any member of the public could ask what HFSA’s source is for its grim prognosis and get an answer, I contacted HFSA.  I sent an e-mail to Cheryl Yano, HFSA longtime executive director, explaining that I was writing this blog report on heart failure death statistics, and then a second e-mail, but did not get a reply, so I called.  She would not talk to me.

Loreen Anderza, HFSA administrative assistant who answered the phone, said there is no specific source for the HFSA statement on how long people with heart failure can expect to live.  It is “a consensus of experts in the field.  They have no source for it,” she said, after putting me on hold to speak to Cheryl Yano.  I asked if Ms. Yano would talk to me about whether or not heart failure is becoming more of a chronic condition that can, for most people be managed, and Ms. Anderza said that Ms. Yano is not the right person to talk to because she is not an MD.  I asked who at HFSA I could talk to and she said Ms. Yano had no one to recommend.  Ms. Anderza said that everyone uses the same numbers and suggested that I ask the American Heart Association if they know what the source is for the scary prognosis that is on the HFSA website.

Instead I contacted the president of HFSA, Barrie M. Massie MD, Chief of the Cardiology Division at the San Francisco Veterans Affairs Medical Center who responded in an e-mail:

“This is out of date.  It is based on Framingham data and several trials largely dating back 10-20 years.”

The Framingham Heart Study

The Framingham Heart Study supported by the National Heart Lung and Blood Institute, part of the National Institutes of Health, is an ongoing project begun in 1948 that has enrolled over 14,000 members of three generations and periodically issues reports about the risk factors for developing heart disease.  The study here has provided many important findings including the risk of cigarette smoking, cholesterol, and high blood pressure, and much more.  But the study is set up to find information on all forms of heart disease and its ability to track heart failure patients is quite limited.  Original Framingham participants are seen at a clinical visit every two years and their offspring are seen every four years. “Participants with heart failure often undergo treatment between a clinic visit and before death and these interventions are not captured in our clinic visits,” said Daniel Levy MD, director of the Framingham Heart Study. Therefore his report did not have information on what treatments heart failure patients who died were using.

Many sites on the internet including HFSA that offer a prognosis for heart failure base their projections on a Framingham study published in 2002 in the New England Journal of Medicine that used data going back 15 to 20 years ago.  Even the American Heart Association’s Heart Disease and Stroke Statistics 2010 Update quotes the Framingham death rates for heart failure.

I examined the Framingham report on heart failure and found that the prognosis the study gives is based on a very small number of deaths — 86 deaths of men and 80 deaths of women.  This study occurred before the modern therapy of ACE inhibitors and beta blockers which are proven to prolong life in heart failure.

The Framingham study followed 323 people (145 men and 178 women) who developed heart failure between 1990 and 1999.  Dead in five years were 59% ( 86) of the men and 45% (80) women.  The study did not learn whether these men and women died of their heart failure or of some other cause, said Dr. Levy, lead author of the report that appeared October 31, 2002 in theNew England Journal of Medicine.

The Framingham study on heart failure deaths also looked at deaths in  decades going back to the 1950s and said that “Overall, there was an improvement in the survival rate after the onset of heart failure of 12 percent per decade.”

In the decade since the Framingham study of the 1990s, “there is optimistic evidence  that we have improved treatment for people with heart failure,” Dr. Levy said in a telephone interview, though he would not estimate by how much.

Other Clues to Heart Failure Prognosis

I talked to eight nationally known cardiologists in preparing this article, to get a sense of where heart failure stands as a treatable condition vs a progressively fatal condition.  Not all are quoted.  One cardiologist who asked not to be identified because he knew what he was saying was “controversial” commented on the annual AHA Heart Disease and Stroke Statistics Update:  “These are not really current data.  They are estimates extrapolated from NHANES (National Health and Nutrition Examination Survey) … with changes based on changing size and age of the population.  Hence, they are unlikely to be accurate and will not reflect real or measured changes.  Consider them propaganda for those that thrive on high event rates. These data are useful for those seeking investment in development programs for heart failure treatment.”  NHANES, a part of the Centers for Disease Control (CDC) surveys about 5,000 people in the United States a year and estimates results for the national population. The AHA Heart Disease and Stroke Statistics 2010 Update here bases its estimated incidence of heart failure and prognosis of life expectancy largely on NHANES and the Framingham Heart Study of the 1990s.

One clue to how long people with heart failure live comes from clinical studies that try to prove a new drug or device is better than standard care at prolonging lives.  Both Dr. Massie and Alice Macette MD, chief of the National Heart Lung and Blood Institute’s Heart Failure and Arrhythmias Branch, point to the improving life expectancy for people in the placebo group of these trials — those who are on the existing standard therapy against which the new treament is being tested. “For instance in the SOLVD study of 1991 which first showed the benefit of ACE-inhibitor drugs,  the three-year survival rate was about 65% in the group receiving placebo, whereas three-year survival rates were approximately 80% (or greater) in two studies (one on eplerenone and one on use of CRT for mild to moderate heart failure)reported this week at the American Heart Association here and here dealing with heart failure patients of varying degrees of severity,” said Dr. Macette.  In fact, the improvement of heart failure outcomes has helped set the bar higher for any new therapy being tested,” she said.

Dr. Massie agreed.  “If you compare the placebo groups over time there is a substantial decline in the placebo group mortalities,” he said.  “Used to be up to 20% per year and now is close to 8% per year.  This low (death) event rate has made the conduct of clinical trials hugely expensive, which is why there are far fewer of these and even fewer positive ones.”

I also asked cardiologists to judge from their own experience how treatable heart failure has become.  Edward K. Kasper MD, director of clinical cardiology at Johns Hopkins Hospital and a specialist in heart failure, (disclosure:  I co-authored Living Well with Heart Failure, the Misnamed, Misunderstood Condition with him) said “I expect most to improve with modern therapy for at least some period of time – say 75%.”

“Indeed there have been great advances and people do live longer, but progress has been slow and we need to do better,” said Dr. Massie.

I asked Mariell Jessup MD, chair of the American College of Cardiology/American Heart Association Guidelines for the Diagnosis and Management of Heart Failure in Adults found here if heart failure has become more of a chronic condition:

Question:  “From your own patient experience, do you find that most people diagnosed with heart failure will be able to manage their condition, keeping it from advancing, or even improve with the right treatments?”

“I agree,” she replied. She pointed to a study of 2,029  people taken from the general population in Olmsted County, Minnesota.  Study participants were classified according to how sick they were.  Since this was a random sample, it included healthy people called stage 0.  Stage A had risk factors for heart failure, stage B showed cardiac structural or functional abnormalities found by testing but were not experiencing symptoms, stage C had symptoms of heart failure, and stage D had end-stage heart failure.  Survival at 5 years was 99% in stage 0, 97% in stage A, 96% in stage B, 75% in stage C, and dropped to 20% in stage D, by far the smallest group with only 5 people. The study published March 12, 2007 online in Circulation can be found here.  “It is only those patients who present with intractable symptoms that do poorly,” Dr. Jessup said.

Needed:  A Huge National Prospective Study or a National Registry

The Minnesota study, though still small numbers, gives some window into a more accurate prognosis for heart failure.

But the only way doctors and patients and their families will get a really accurate handle on prognosis with current therapies is if a huge prospective study is undertaken or at least a national registry that includes tens of thousands of patients seen at many academic centers and those seen in the community by both cardiologists and general practitioners. The study or registry should include a variety of races and ethnic backgrounds, male and female.  Much could be learned by such a study, including this information:

  • modern survival rates of deaths due to heart failure
  • percent of people with heart failure who die suddenly from ventricular fibrillation
  • possible geographic differences in death rates
  • a large database of what treatments patients were on when they died
  • a library of information on genetics of heart failure

Such a study or registry should have no funding from pharmaceutical companies.

Just before publishing this article, I checked the website of the Heart Failure Society of America.  The unnecessarily scary outdated prognosis for heart failure is still there with not even an asterisk explaining how old and outdated the data are on which it is based.

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Comments

  1. Gregg Smith says

    I would like to speak with you.

    Please send an email to above address.

    Thanks

  2. Gregg, do you want me to send your address to Mary?

    • Susan F Hedrick says

      I am a poor white female with congestive heart failure. The Obama Care Insurance is a disgrace to poor people We can not afford it. I have no money for proper care and no insurance i am praying I can get my creamation paid for so I dont leave my childrrn to pay for me a funeral Somebody out there please tell me of anything I can do to try to get good treatment and medication. Please.

      • Edward Hogan says

        Ms Hedrick, don’t rely on the Federal Government. Check with your State agency for the Indigent and elderly as well as county, local and church programs for assistance. There are many help groups connected to these agencies and local programs. You are a member of the community and not just a statistic (or potential voter) to a Washington bureaucrat or politician.

      • When my son needed a medicine I couldn’t afford the doctor gave me a paper to fill out for the maker of that medicine. I had to provide financial income stats and other stuff, then I submitted it to the company and six weeks later I was receiving his medicine in the mail for free every 3 months for a year. I don’t know if you still need this information, but if not maybe someone else does!

  3. In the debate re:Survival in Heart Failure,both sides stay corrected;
    Mary Knudsen,distinguished medical writer cites the biggest achievements in Heart Failure Treatment and prevention of death.
    HFSA cites the Framingham study from 20 years ago.
    Well,20 years is a long time,and during this time,
    with advanced technology more people with H.F.
    are saved,On the other hand,with aggravation of
    world polution,in U.S. in particular,more people die.
    Part of those deceased are not mentioned under
    the category of H.F. even if they are suffering from H.F.
    This is the power of Statistics and E.B.M.

  4. Mike Spurlock says

    Thank you for this article. I cant tell you the fear I felt when my partner was diagnosed with CHF and I went to the internet to see the prognosis. I thought he was going to die within months. It has been 10 years and he is doing well. Even a drone ‘case worker’ told him he at best 5 years to live. I dont think the policy and procedure wonks at many of these organizations really care. They are only concerned about dollars in and out.

    • Brenda Fiereck says

      My mother just had a mild heart attack and a few day later hospotal did a heart catheterization and found all her main arteries are blocked.She is also on kidney dialysis. She is 79 and was still working a job she is a fighter. She is still in the hospital told her today her heart is working at 10% They can not do surgery on her due to her poor health. A year and a half ago Mayo hospital did a complete health estimate on her for a possible kidney transplant and told us of one blockage in her shoulder and not a big deal.And it has been 6 months since she saw her cardiologist. Now they tell us there is no hope for her.

    • scott maddox says

      I am a 50 yr old white male. I have had AFIB for more than 8 yrs now. Have been on rhythm drug, blood thinner, and BP meds for about 7 1/2 yrs.

      2 weeks ago went to cardiac doc, had echo and ekg done.

      I had been feeling tired, out of breath, and constant heart palpitations.

      Doc told me results showed afib has permanently replaced normal sinus rhythm. That my heart was at 47% ejection fraction- down from a 61% in 2017

      He doesn’t believe he can get afib stopped on meds alone now

      We are looking at cardio version or pacemaker

      My beats go in the 40s at rest but jump around to low 100s and high 190 -200 if I try to exercise all while in afib

      Any suggestions- every time I see the life expectancy I tear up

      Scott

  5. Mike Spurlock Thank you I have hope now. just hade a heart attack and a year has passed looking up how much time I have you never really know it is all up to how you take care of ones self so far I am on the right path I think . your right about the dollars Thanks again live well an strong !

  6. Baby Boomer Writer says

    Continuing to disseminate sixty-year-old statistics is irresponsible. Science has extended life in many chronic disease areas and if heart failure deaths have been reduced the public should know that. The call for an open database built upon current documentation would verify that cardiac drug regimens have turned a once frightening diagnosis into a chronic disease.

    In the age of instant messaging, old information is totally unacceptable. Keeping the public educated and well-informed is an imperative for affordable healthcare. A non-profit organization focused on heart health as well as any government entity investigating heart failure data needs to portray the state of the disease without bias. In addition, current data needs to be available to journalists covering the subject. Extant data is inaccurate and perpetuates misinformation.

  7. Winkler D. Bond says

    It would seem to me that the data being collected and available to researchers in the VA’s MVP (Million Vets) program would be an excellent source for the research you are suggesting.

  8. I’m reading this in early 2016 and find it very encouraging. I am 74 years old and have heart failure with an ejection fraction of 30-35% due to left ventricle damage following a large heart attack. Although initially after my attack (and stunting) I did have symptoms, I am totally symptom free now and following a plant based, whole foods diet without oil.

    I do not believe there are any studies of heart failure patients on this diet and even the proponents of the diet by cardiologists and other MDs do not say it can work any magic for heart failure patients. What they do say, however, is that it can do nothing but help. It will help the arteries be as healthy as possible and to me that equates with being helpful to the heart or as one cardiac physician’s assistant told me (with regard to the damaged muscle) “you’ll be able to make the most of everything else.”

    Thank you for your information.

  9. richleen12 says

    Thank you for this updated information. My husband who is a very young 71 (a Phd candidate in psychology at this point), had a valve replacement three years ago and was diagnosed with congestive heart failure after mistakenly being diagnosed with asthma for many years. His cardiologist says the strength of his heart is increasing rather than decreasing. It is uplifting and encouraging to find out his prognosis could be much better than what was previously presented on TV just the other day, which was the 5 year out prognosis. Of course, he is very diet conscious and normally active, if everything else is in good shape.

  10. Sheryl Rollins says

    Thanks for giving hope patients and caregivers.

  11. Thank you. My husband was diagnosed with severe heart failure two years ago and I saw all those depressing statistics on the expected survival rate and was greatly saddened. He had surgery at Cleveland Clinic a couple of months ago to correct the mitral insufficiency apparently resulting from the heart failure. Since I also read that you “never” stop having heart failure, those figures continued to worry me. I appreciate the new insight you have given me … and the hope for a longer life for my husband.

  12. Stephanie Lane says

    I’m 34 with heart failure and I’m scared I’m going to die. They diagnosed me one month ago I’m sad to see I will only live for five years. I’m terrified.

    • Stephen Sossin says

      Don’t be terrified.. My first heart attack 5+ years ago had my EF at 35. 4 years ago, under extreme physical exertion, a 2nd heart attack and my EF is now 20. Despite a ‘weak heart’.. no one can explain a strong pulse, great circulation and oxygen levels etc. Think about how many people over the years were told they were dying of this or that… had months to live… but a year goes by. They get a 2nd opinion and find out the first opinion was- wrong. If you think’.. I’m gonna live’.. you will.. Negativity brings negative results.

      • that is very true! I was diagnosed over a year ago with stage 4 heart failure and when I looked at the statistics I was also scared but I started eating as healthy as possible and I juice daily and try to walk or exercise as much as possible to. I was told at the time my EF was 20% well over a year now and the same doctor say’s I’m still at 20% but hey I feel pretty good, I’m pretty active and things have improved compared to last year, no one knows how long any of us have so just be happy and live the life you have 🙂

    • Jeanette says

      Stephanie, do everything the doctor tells you, look after yourself, limit salt and
      liquids, and move as much as you can, and you will do better. There are several patient-run support groups on FB THAT ARE WORTH JOINING. Sorry about the caps- not used to the phone keyboard!

    • I am 38 and have heart failure due to a heart attack and 100 percent blockage of the LAD and that was a year ago which they told me a year ago I might not make it two weeks. My heart is doing better and I am hopeful I live a long life only God knows just eat right and exercise and try to manage stress.

  13. Thank you for writing this article. My only regret is not finding your article for three days and feeling hopeless about my siblings congestive heart failure. Now I feel empowered and ready to help him live.

  14. Anne Nelson says

    I’m 78, male,diabetic, smoke,drink, chronic heart failure 25 yrs, quadruple heart surgery (13 yrs) but I still work outside,clear thinking etc former paratrooper,pilot,truck driver and party guy. But I don’t give up. What’s my chances of ten years of
    Life?

  15. Dawne Bost says

    Thanks for this article. The emphasis on study methodology and concepts like “propaganda for those that thrive on high event rates” give a rational and somewhat hopeful perspective. Yes, I know this is a 2010 publication,

  16. Brad Turnbow says

    Thank you. I have CHF, I’m 45 years old. The data online terrifies me and my family. I try to ignore it. But then I go seeking some info (not related to my impending doom) and there it is. “You’re gonna die in a few years”. Yeah, thanks for reminding me…

  17. I have GERD and also angina. I don’t seem able to get a comprehensive reply to help me tell the difference. I have a GNT inhaler, but when I use that my blood pressure falls to less than 90/62

  18. Love this article as a survivor I would like to know more on this topic. Next week it will have been five years since I had my Heart attacks and got stints installed. I find myself health and happy on two pills a day.

  19. stacie holena says

    My husband just go diagnosed with this at 50 we have a 11 year old I am worried!!

  20. Thank you so much for this encouraging information. My 44 yr old husband just got diagnosed last week with an EF of 30%. My heart sunk when I saw the 5 to 10 yrs life expectancy. This new information has giving me hope, God bless you.

    • Hi..how is ur husband now..?is he better.?

    • Robert Marshall says

      I had a cardic arrest due to a virus on May 06. My EF was 10%. I also have a-fib. My EF is 35-40% today. I am 76.

      • Hi Robert
        My mom is at Ef 10% and I’m afraid to lose her right now. She has a leaky valve so I don’t believe it’s going to get better. Has your ef went up. And how long has it been. Hope you are doing well

  21. Thank you so much for this!!
    While waiting for a heart diagnosis there is nothing scarier than outdated statistics saying you will probably die soon anyway!!

  22. Oidjfoi Oskdje says

    Any estimate of survival rates is out of date. Anyone who has survived ten years did so based largely with the treatments that were prevalent ten years ago.

    If there have been any improvements in treatment, then the chances of surviving ten years for a person who was recently diagnosed must be higher than the survival rate of people who were diagnosed ten years ago.

  23. Thank you for this article. I’m devastated to hear my 34 year old daughter has just been diagnosed with a 25 injection heart rate. She’s lost hope and feels she only has a year to 5 yrs to live. I’m from the school however that as long as you have breath, you have hope. Besides, I had an aunt that died at 80 yrs who was diagnosed with heart failure in her 40’s. She had a pace maker for all that time and lived a productive life. When my daughter first told me the diagnosis, I didn’t think of it as a ‘death sentence’ until I read the prognosis on the internet. I’ve know too many people with it that are still alive 20 years later. So, I certainly believe your findings. “Power of the mind! Be positive!.” My daughter’s not going to die any time soon.

  24. My 70 yr old father was in intensive care for 3 weeks, with heart failure in August 2015. He had an injection heart rate of 12, caused by damage to his heart, due to familial dilated cardiomyopathy. At the end of the 3 weeks, he was sent home under palliative care, with a number of drugs, including morphine. The drs said he had days, maybe a couple of weeks to live. He is still alive today and although he is symptomatic, he is still alive. He tell us that when he was in intensive care, he didnt believe he wld die. I was there every day, thinking he wld go at any moment! He has an echo every 6 weeks or so, and the cardiologist says his heart has not repaired itself….so his injection heart is still only at 12. So, how can this be? I really think that research needs to be undertaken, to actually find out the proper prognosis….because whatever time frames are given out are clearly wrong. Even with a heart as weak as can be…u can live years, with the right medication.

  25. David Klooz says

    Thank you. A positive article for a change. I was diagnosed with CHF early in 2014. With no previous symptoms to swelling and difficulty breathing. 3 1/2 year’s later getting more stamina and now at age 72 feeling well again. Taking beta blocker, ARB, aldosterone antagonist and diuretic. Asymtomatic from first and only episode

  26. Sheila Graham says

    I have just been diaginised with heart failure which scares me as I read about it so many different ideas on the decease and life expectancy that it’s confusing I also have diabetes type 2 I have the breathlessness and swollen ankles and have been given the water tab awaiting scan and ECG and to see the cardiologist could you give me any advice or help me understand what’s happening to my body and what’s the best thing I can help myself with thank you

    • Hi, stay optimistic! fluid restriction, 1500 mg sodium learn to read labels, take all meds as prescribed, monitor weights daily, lose weight if indicated!, if furosemide doesn’t work get on a diff water pill, I have great hope in Entresto (get it if you can in place of lisinopril or enalipril), exercise slowly. Do these things and you’ll be fine. good luck 🙂

  27. Thank you for writing this. I was feeling pretty disheartened until I clicked on your link. I appreciate you and the time you have taken.

  28. Missy Porter says

    Would you be willing to revisit this topic after what was presented at AHA about outcomes in heart failure not improving. There was also a paper published about declining rates of sudden death in heart failure patients. Does sudden death continue to be the most common way patients with heart failure die? Making sense of the conflicting information is exhausting!

  29. SpringTexan says

    Those who want more info about this should read the author’s Living Well with Heart Failure, referenced in her bio above the article.

    Inexcusable that the website has not been changed!! The information is inaccurate and frightening (accurate and frightening I don’t have a problem with, but this is just wrong so wrong).

  30. Great what you are doing. God bless you

  31. Sydney Schierling says

    I second a follow up. Thanks so much!

  32. Praying for all of you. Please pray for my dad. Recently diagnosed with HF. Ejection Fraction of 23. He’s 71 years old.

  33. A GREAT Big Thank You to the authors for publishing this article.

    I was diagnosed with HF in 2005 and diabetes in 2011. I was on the ventilator twice once in 2005 and again a year later.
    I am middle aged and have all of the usual HF symptoms, including fatigue and edema. I am very active, I take my meds faithfully and try to watch my salt and fluid intake.

    I also take a daily multi-vitamin and a tablespoon of apple cider vinegar with a glass of water 3 times per day.

    I feel great MOST of the time, and expect to live an even longer and productive life!

    I think positive and PRAY for the improvement of my heart condition three times per day, especially when I’m privileged to wake up in the morning and just before bedtime.

    Thank God, for good doctors, good research, and good meds.

    Ultimately, I give ALL glory and honor to God for allowing me to survive this long!!!

    • God bless you..thanks for the hope you’ve given this 36 yo male

    • Sandeep says

      Hi CG,

      What was your ejection fraction and did it improve later?
      Did you have pulmonary edema resulting in breathlessness due to heart failure?

      Thanks in advance for your response.

  34. My mother lived through two pace makers and only had that life ending massive heart attack just before turning 97 years old. I was a patient advocate for both parents and friends with similar issues. I currently am helping a friend long distance with heart failure whose cardiologist prescribed a medication that wasn’t effective. He had a massive heart attack and was basically sent home to die. His primary is currently on the war path trying to get at least some palliative care. Keep putting this out there! This was a young strong man with very young children that went untreated and is now experiencing organ failure. He probably should have had a pacemaker installed a year ago.

  35. Rebecca Taylor says

    I hope my story encourages somebody to never give up! I am a soon to be 47 year old African American woman. I was diagnosed with Congestive Heart Failure 12 years ago! Although it runs on my mother’s side of the family, I am a walking list of the factors that say DEATH in 5 or less years, with and without CHF.

    In 2006, before being admitted to the Cardiac ICUI had no idea what was truly going on. I had just left an abusive relationship, moved out of the state I was born and raised in to do so with a 13 year old all by myself! I am a plus size woman, have always been, so the weight I had put on was nothing alarming. I attributed the weight to stress, the miscarriage before I left and eating more than normal. However, there came a point where it was getting increasingly harder to breath while doing anything. I couldn’t walk a block without coughing, sweating profusely and sitting to rest. This was my first red flag, because regardless to my size I was always active! I couldn’t walk any more, let alone dance and I love to dance!

    One night I couldn’t sleep. Everytime I went to lay down I’d choke and spit up water. I decided to take a shower hoping for rest after and thats when I noticed pockets of swelling in my stomach. I couldn’t lay down or sit up with out coughing up water then my RED ALERT went off; I went to the ER. My BLOOD PRESSURE was so high that they couldn’t figure out how I didn’t have a stroke or even feel light headed. I was immediately rushed to Cardiac ICU!!

    I was scared, but kept a brave front for my daughter who looked like a deer in headlights. After intravenously giving me heavy meds to bring my Blood Pressure down, I was scared to get a catheter, so up & down I went for hours! Altogether I released 52 Lbs. of fluid off ny body. I was told that had I went to sleep I would not have woke up. Given my age and after answering 20 questions, they had no clue what was going on. I made a call to my maternal aunt & in 3.5 seconds she told me I had CHF, as does she and my deceased mother.

    I was in the hospital for 7 days. I went from no medication to 8 meds upon release. My heart WAS enlarged, my kidneys had suffered and they were talking heart transplants and a year or so to live. By the Grace of God I am here 12 years later. I did the no salt , healthy eating and stopped smoking cigatettes…for 5 seconds. Ultimately, I gave up instantly after hearing I was gonna die! I begin to drink and use drugs that threw me into a depression so dark and hopeless. I wasn’t taking my meds right or nothing, but then came my belief in a higher power.

    As previously stated, I’m a plus size woman, so although I’ve lost some weight, it just is what it is. Today, I’m down to 3 meds daily and I’m living, taking it day by day. I have high blood pressure and Stage 3 Kidney Disease due to CHF, but I’m alive, well & fighting. Recently, I was taken off of lisinopril due to the risk it poses for African Americans (Scary Stats). I had a swelling scare! I’m trying a new med, Losartan, it has me a bit worried, but God!! I’m eating better, trying to loose a bit more weight and quit smoking cigatettes completely..gotta do it, but God!

    I said all that to say, my ankles been swelling lately, I took to Google and was in tears silently in my room crying because of what I was reading until I read this article and remembered..I AM ALIVE & HAVE SURVIVED 12 YEARS after a DEATH NOTICE from my cardiologist! NEVER give up! I’m praying for you, plesse pray for me & WATCH God change things!

    • Well put Rebecca!

    • Linda Budinich says

      Hi Rebecca,
      I don’t know if you will see this, but having been recently diagnosed with HF after a surgical biopsy for an infection—hey, you have a staph infection in your chest, with a side order of Advanced Heart Failure—I was so sad to read all the statistics that I may never see my kids graduate or watch my daughter walk down the aisle. This article is so encouraging! And your story! I’d love to see a reply how you are doing now if you have the time to reply!
      Linda

      • Linda,. I am a 55yrs old male. Diagnosed with CHF 9 yrs ago. My EF is 20. I am thriving walking an average of 45 minutes a day. I am on 6 and 3 meds a day. I feel really good. Also very discipline with sodium and fluid intake. Do not worry. Things are going to be better.

  36. Deborah blair says

    Thank you Deborah Blair for giving me hope

  37. Thank you for this information. My husband had coronary bypass surgery almost 2 years ago. He recovered well from that, but almost a year after surgery he was diagnosed with stage 4 metastatic prostate cancer. He has had several bouts of radiation and has just finished 6 cycles of chemotherapy with docetaxel. He also had to have a stent placed in early April. We were told the ejection fraction was low (30%) but there was no mention of heart failure and the doctors did not seem concerned. It wasn’t until after his third chemo treatment that my husbands ankles and feet started to swell and he was short of breath. We thought it was due to chemo. The day of his chemo treatment, he would get short of breath when he moved a few feet. He was given lasix before his treatment, and I saw an improvement right away. I questioned the cardiologist, and he said it is heart failure. He started my husband on a diuretic and valsartan. A few weeks later the echo showed a slight improvement — 35 to 40% ejection fraction. He still has a lot of swelling in the feet and ankles, and I think around his belly. The doctor started him on entresto. I read that it could take a few weeks before we see any improvement.

    Reading the HF stats is certainly disheartening. From the stats the prognosis does not look good. Until I read this, I did not have much hope. Although, I have known people with heart failure that lived for 20 plus years. I really do not know what to think. My husband’s case is certainly complicated because of the cancer. Thank you for writing this article.

  38. Rachael Decker says

    All of you have given me hope I’m 46 diagnosed a year and a half ago I went from not being able to breathe water retention and unable to walk to walking again I can sleep laying down I only retain water if I eat fast food I thought I was doomed I had 3 blood transfusion and within 3 months I felt so much better I take diltiazem and aspirin and iron I quit smoking and and drinking I went on a major path of distruction after my oldest son died 2 years ago from a heroin overdose I was drinking doing illegal substances smoking cigarettes I practically lived in the hospital the first year after he died any I feel relieved to read all these stories of hope I’m going to take this alot more serious start walking less sodium and regular Dr. Appts.thank all of you .

    • Steve Marks says

      Keep up the good work for yourself! Back in the 80’s, I used to tell my friends and acquaintances that it’s how we treat our bodies when we’re younger and healthy- that mostly dictates what we feel like and often even how we look in out later years. Many of them are no longer with us. Most look much older than they are! Part of the battle, is ‘wanting to live’.. After my first heart attack- when I went to ‘Cardio-rehab’ I worked very hard in my own time.. to walk, be as active as I felt at any given time or day.. and eat right! People would see that at the end of my ‘Cardio-rehab’ workout… the ‘cool-down’ period for me was under 3 minutes. Often people would ask me, ‘How do you DO it?’ I’d give the same advice as up above. I sadly… over time discovered, that 9 out of 10 simply did not want to give up that fast-food.. chocolate cake etc, and thought their 45 minutes to an hour at ‘Cardio-rehab’ would suffice for any other activity (wrong!)I found the attitude was, ‘Oh… my INSULIN will keep my blood sugar in check or I’ll just increase the dosage if need be’ and other such (really stupid) thinking. Over the next 4 years after my first heart attack, which I believe was stress related as I didn’t do drugs, was only an occasional drinker and quite physically active, my Ejection Fraction improved to a 50 (normal) all things considered. It was a wrongful work order that I protested that caused my heart to be injured 9 like most employers these days- they threw me under the bus, and my workmen’s comp case is going on 2-1/2 years! E.F. went all the way back down lower than after the first heart attack, and you know what? Because I DO take care of myself… my circulation/oxygen is great ( blood pressures a bit low but partly from some med’s ) and I have become more ‘Spiritual’ which too many people are lacking, and is a great health benefit, trust me. Lastly, DON’T hang out with those who are a bad influence. Ask yourself, ‘Do I want to live? Or Die? The choice should be a no-brainer. Best wishes to you!!

  39. 74 years old and same story here as many above. Big heart attack 14 years ago with accompanying ejection fraction of 20, One year ago, I contracted pulmonary edema. EF slipped to 12. Very tired and was told by doctor I could drop dead any minute and to make final arrangements for my demise.. Seriously depressed and angry afterwards.. New pacemaker 4 months ago with adjusted settings & EF back up to 25.

    I struggle with negativism of health professionals who want to make me sicker than I feel and make dire predictions about my mortality. I back them off and confront them. Mostly symptom free now, and i walk 1 hour a day with I feel really good.

    14 years survival. 1 year in-your-face survival with death sentence. Up yours to naysayers. I rest my case.

  40. Deborah Blair says

    Thank you for explaining about cHF I am 63 just put on Entresto you gave me hope I am looking forward to watching my grandchildren many more years now thank you a million times I hope they update that information it can really be frightening

  41. Hi,

    I guess I have an unusual case, doctors called me a House Case. In 2013 I passed out while on an elliptical and fell down. A person next to me call for an ambulance.

    I thought I was ok but they rushed me to the emergency room where a few days later I was told I had CHF, AFIB, and about three other issues. I had no blockages or other issues. My EF rate was in the tank at 16% and if things did not get better I would need a heart transplant or die. They had me on all types of meds, did cardio-versions, ablations etc.

    I change doctors and went to the University of Miami and they did a hybrid ablation on me. My heart went back into normal rhythm and ef rate went back up to mid 50s. Less than a year later I was off all meds and blood thinners.

    I have had follows up with no signs of the CFH, afib or other conditions. I lift weight and do cardio 4 to 5 times a week as I have always done. I feel good overall.

    A new doctor told me that what I had was very bad, CHF and afib do not go away, they are degenerative and only get worse with time. I have a physical and EKG every year and there are no signs of those items.

    So I am confused, I tried to buy life insurance and they told me the same thing.

    I am going back to my old heart specialist even though he is some distance from me to check my heart out.

    From what I understood I was cured, since there was no further signs of CHF or Afib. Again I have not been on any meds since 2014 and the doctors have not seen any need for them.

    Can someone provide some insight, this very confusing to me.

  42. Michael Calecas says

    I am 53 and survived two heart attacks, one in 2014 and again 2017. On Friday 10/25/19 I had a annual echo and my EF decreased from 28 to 25. I have a CID , eat well and exercise regularly. Although I get tired a little easier, I basically do what ever I want and feel good about it.

    I lost my mother in her 60’s , two sisters 27 & 58 and a brother in his 40’s all to heart failure. I place all of my trust in God and love my family and try to be a good witness to others before he calls me home…
    He is not ready yet but will come like a thief in the night no matter what our health is. God bless and never stop living the gift of life to your last breath. 🙂

  43. Chris Horn says

    I don’t see reference in this to Diastolic Heart Failure – does this information apply to it as well? Thanks so much – there is NOTHING out there for Diastolic other than most die in 5 years or less…… scaring the heck out of me!

  44. Thank you. I believe I have stage C heart failure (with severe preipheral edema). An ECG five years ago was normal except for benign sinus tachycardia, which I’ve had since I was young. My PCP does not want to send me to a cardiologist at the hospital for testing right now because of Covid, but he agrees I have many of the signs of CHF. He immediately put me on diruetics, but I had to stop the hydrochlorothiazide, which worked well for me, after six weeks because my A1C shot up drastically. I am currently on spironolactone, and my blood sugar seems to have gone back to normal, but it does not do anything for the edema. My grandmother died of CHF when she was in her 90s. I am only 38 and have a four year old daughter. Reading that the 5 year mortality rate is 50% is completely devastating. I am so sad at the thought of not getting to see my baby grow up. I wish I knew more about the prognosis, but thank you for offering at least a little bit of hope..

  45. My husband is 61 yrs old had heart failure in 2012 so 8 yrs ago and hes still kicking. Just take your meds and do what the dr tells you to.

  46. I’m a 55- year old woman who was diagnosed with CHF in 2009 following a bout of bronchitis which wouldn’t go away. Bronchitis was common to me so I didn’t think much of it but kept telling people that I was dreaming about drowning every night. By the time my AICD was implanted my EF was 10 and I was still working 70+ hours per week. I was diagnosed with non-Ischemic Dilated Cardiomyopathy which was suspected to have occurred due to a viral infection.

    11 years later I’m still working full time, although I’ve left the corporate world in order to adapt my schedule as needed to account for varying energy levels. I take bumex, digoxin, lisinopril, plavix. He has prescribed Coreg and, more recently, metropolol, but I can’t tolerate either. A single 3.25 mg pill of Coreg knocks me out. Following a sudden heart-attack in August 2019, I take lipitor. I now have a stent. I had never had any buildup in my arteries then… boom! Heart attack. It was quite unexpected. My EF has rarely risen above 20 these past 11 years and is presently hovering around 18.

    Doc prescribed Entresto as soon as it came on the market but my insurance deductible is far too high to cover it. He’s now giving me samples of both Entresto and Farxiga.

    The point I’m making is that, 11 years later, and with severe CHF, I live my life. Attitude is everything. Forget the stats and live your life. Get up and be as productive as possible. Momentum is not overrated! When you’re tired, sleep. When you’re thirsty, drink. Stay curious, stay engaged, and never give up without a fight.

    All he best to each of you!

  47. Marc D Helm says

    I have been diagnosed with non eschemic cardiomyopathy, an enlarged heart, left bundle branch block with 30% ejection factor. What is my prognsis? I am 70 years old

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