Dying Man’s Daily Journal – Heart Failure Mortality

I came across this article that really makes me realize and appreciate what a lucky man I am. I have been diagnosed with heart failure. Just the name heart failure sound pretty serious and even scary and it is.

What is heart failure? Now I am not a doctor. As I describe it, it is all “according to Bill” being as I understand it. Heart failure in itself is not a disease in itself but is instead a symptom of an underlying problem. In my case 4 heart attacks have damaged the muscles in the walls of the heart causing them to stiffen. We all know a stiff muscle doesn’t work with the same ease as does a healthy muscle. It doesn’t have the same flexibility it once did. It does not pump the blood through with the same efficiency it once did. Basically, this causes the blood and fluids in my system to back up causing fluid retention and edema. The force of gravity I believe comes into play as often the majority of the build up occurs in the feet and ankle areas. But, it does spread through out the entire body. When the build up spreads to particularly my chest it becomes more serious putting extra pressure on the heart and lungs. It seems to be about 2 or 3 times a year I end up going to the hospital (just to check out the pretty nurses) and they help “drain” my system. I take pills daily to help me pee and generally that works well.

I feel very lucky for 2 reasons.

#1. Now let’s face it no one wants to be diagnosed with any sort of terminal illness but we really don’t have a choice in the matter. I always try to put a positive spin on things. Now this is how I choose to look at it. There are cancers and so very many other diseases that are such a much more horribly painful way to leave this world. I am lucky in that the vast majority of the time I feel fine. OK, tired, lethargic, almost constant shortness of breath. Some chest pain but not excruciating pain and that is usually quickly dealt with by my nitro spray. Well I have the memory stuff by that is beside the point. I know it could be so much worse, others suffer so very much more.

#2. Lucky, blessed  I am not really sure how to describe my feelings here. I often search the internet for heart failure news, looking I suppose for new discoveries or what ever. Often I find things such as the article I have copied and posted below. Statistically mortality rates for heart failure patients really suck, read the article I copied below and see what I mean. Those though are statistics and I AM NOT A STATISTIC, I AM ME AND ME ALONE. I have written of how only once have I ever actually been given any sort of time questimate by a doctor. There was a bit more to it but it essentially said, 2 years if I am lucky. Well guess what, come November 1st. it will be 4 years and I am still going strong and plan on keeping it that way for years to come. I think we can get to wrapped up in statics and take them to seriously. I am not a statistic and will not die according to the timeframe on some chart. I will only leave this world when the Good Lord calls me home.

Is the Good Lord giving me extra time, can’t imagine why I would warrant any special consideration. Am I living on borrowed time. I don’t know, but I will take it how ever I get it.

This is the article I found at The British Heart Foundation Statistics website.

I found it at: http://www.heartstats.org/datapage.asp?id=752


National mortality statistics for heart failure

In 2001, just over 11,500 deaths due to heart failure were officially recorded in the UK. However, the number of deaths attributed to heart failure in national mortality statistics is likely to be a huge underestimate of the actual number of deaths caused by heart failure. Guidance on death certificates – that heart failure is not a cause but a mode of death – explicitly discourages doctors from noting heart failure as the underlying cause of death. This means that other causes of death, such as coronary heart disease, are more commonly given as the cause of death in the death certificates of people with heart failure.

Survival after a diagnosis of heart failure

Prognosis from heart failure is poor. Data from the London Heart Failure Study show that around 40% of people die within one year of an initial diagnosis of heart failure.

Comparing one-year survival rates for heart failure with those for a number of common cancers shows that prognosis from heart failure is relatively poor. The one-year survival rate for heart failure is worse than those for breast, prostate and bladder cancer, better than those for lung and stomach cancer, and very similar to that for cancer of the colon.

Better estimates of mortality from heart failure

Combining data on incidence and survival, we estimate1 that in 2001, the true number of deaths from heart failure in the UK was at least 24,000. This means at least 4% of all deaths in the UK are due to heart failure.

1. From incidence rates in the Hillingdon Heart Failure Study we estimate that there are just around 63,500 new cases of heart failure each year in the UK. Applying a 62% one-year survival rate to this figure, means that just over 24,100 of those diagnosed from heart failure die within a calendar year.

21 Responses to Dying Man’s Daily Journal – Heart Failure Mortality

  1. venus00 says:

    Those are sobering statistics. I recently gain a new client who was diagnosed with congestive heart failure. I’m preparing her families meals on a weekly basis (low salt, low fat, low calorie) I had no idea the mortality rates are so dire. I hope that she fairs as well as you have. You have beaten the odds this far. I think your going to go all the way. I look forward to reading your thoughts 10 years down the road!

  2. Mel says:

    No doubt about it, sir.
    You ARE graced.

    <–does not believe it’s been ‘luck’ that’s kept you right where you’re suppose to be, today.

  3. Tony says:

    Although every situation is different I sure hope you are looking at the possibility of fighting this thing rather than just “feeling blessed” for you borrowed time. 1.5 years ago my EF was 17%. Today it is 57%. I am 34 years old and I did this with NO SURGURIES. Now I know your case is a bit different because of the damage but there still may be some hope for you. I pray that you keep your sodium levels to 1,000mg a day (which is JUST as important as your medication..if not MORE IMPORTANT) , you take CoQ10 (research goes back to 1967 and it is in every cell in your body…lower in CHFers).. Magnesium helps with pumpimg ability… Read up on Progenitor cells.
    I am going to be opening up my own site soon on how I beat this horrible thing. Good luck and change your name!!! YOUR A LIVING MAN!.. It’s good that you accept the fact of your situation..as I did at the time… BUT..this is a LIVING MANS JOURNAL! Dead men tell no tales. Remember that. Good luck!

    • Charles Wade says:

      Hi, $ yrs. back diagnosed with CHF< Had EF of 30% and then 17%. Did not see another doctor for 1 1/2 yrs. and (to my shame) kept smoking. Now EF in 50+% and OK. After readinf statistics on CHF I decided to self-medicate w/herbs and vitamins. See "drsinatra.com"., I used coQ10, mag., d-ribose, garlic, l-carnitine etc.. Stay away from drugs when possible, CHF can be beat BUT not w/conventional meds. go natural/alternative route if you want to live and most of all PRAY and follow the Holy Spirits lead. God Bless, Charles

  4. Tom Chan says:

    Hi, Bill:
    Praise God for your deliverance at the door of death. Jeremiah 29:11 speaks to you plainly that God has a plan for you, and the plan is not to harm you but to prosper you with good health and His joy and peace that is beyond all carnal understanding.

    God be with you. Praying for your recovery.

    I’ll drop by some time to visit with you again.

    Tom Chan

  5. Vern Hume says:

    Hey Bill:
    I was diagnosed with left ventricular myopathy in 1998 at age 53 and began drug and diet therapy at that time. I then started my excersize regimen in 2000. My Ejection Factor went from approximately 30% to now at 47%. I hope the best for you and a long and happy life. Good luck to you and yours Vern Hume

  6. E'beth says:

    I’m new to this.. only 31yrs old. I have a ten year old little boy and I’m scared. Tomorrow I follow up with a all new cardiologist and hope for better news, but I am feeling worse this go around. It’s actually hitting me and hitting me hard what is happening to my body and I’m terrified. I guess you could say those feelings of why have hit me also. Time has become a BIG deal to me. Every second matters to me. Silly even the air I breathe in I seem to pay attention to. I’m glad I ran across your article today. It put some things in perspective. Thank you.

    Hi E’beth my thoughts and prayers are with you and your son. It is normal to feel scared when you are facing a situation such as this. You didn’t mention what your specific condition is other than it is obviously heart related as you are seeing the cardiologist. Something such as this really does bring our priorities into order, time, appeciating every breath we take.
    I hope you will continue to visit us here on the blog. Here you will find much loving support. I hope you don’t mind but I am going to email you directly.

  7. Alice B. says:

    First, ty for sharing your particular story. It helps just to know that other ppl are in the same boat as me. It sounds silly, but I never thought to keep a journal. I am 37, have one lung, mvp with regurgitation, neurocardiogenic syncope, cardiomyopathy and severe diastolic heart failre. I have no idea how long I will live, but I feel myself slowing down. May our Creator bless and keep you for having the courage to speak out for others like us to find these articles:) Respectfully, Alice.

    Hi Alice,welcome to my blog and thank you for taking the time to leave a comment. I read your list of ailments and my heart and prayers to out to you. I can understand and relate to your feeling of slowing down and that is difficult for me to deal with (the decreasing physical capabilities). I invite you,No I ask you please to continue to return here and share your on going feelings. You do not have your own journal so I invite you to share in this one. Here you will find tremendous support as you go through all of this.
    I hope you don’t mind but I am going to send you an email in the next day or so. We have much we can talk about.

  8. Kristen says:

    Like Alice, thank you for sharing your story. It’s nice to see that people can have a positive attitude going through this. I guess I’m not there yet. I am 41 and just had my second heart attack on February 1, I have an EF of 10%, I now have 6 stents. It seems to be really hard to realize that you can’t do the things you once enjoyed.

    Hi Alice, welcome to my blog and I thank you for taking the time to leave a comment. My heart and prayers go out to you with an EF of 10%. At last check mine was still in the mid 30’s and I can really notice the restrictions on my physical limitations. I invite you to visit here on the blog as often as you wish to share what ever you may wish to share. There can be a lot of loving support found here.
    I do hope to hear from you again.

  9. Dave Byrne says:

    Hi Everyone,

    My name is Dave and I was diagnosed with dialated Cardiomyopathy in October 2000. I very nearly passed away that time, as my family were advised to “get ready”. My son was just 3 weeks old…. 12 years later and im still here to tell the tale. Now dont get me wrong, some days I feel on top of the world and on other days i just cant function at all. I work full time in a very stressfull job and am feeling the pressure of the financial crash, I have a lovely wife and 2 great kids to care for, my point is, yes its very scary at the begining and there is always times I feel “this is it” but I think…… and I really mean this….. If you put you faith in the Lord our God he will take care of you. I asked him the day I was told by the doctors that “i was very sick” to help me, and the fact that i am typing this now shows you that he will do just that.

    God bless all sufferers and my God bring peace to you all.

    • Mel says:

      ((((((((( Dave )))))))))))

      Bless you. And thank you for sharing that, Dave.

      I’ll hope for continued blessings for you and yours.
      Peace to you, sir……peace to you.

      • Dave says:

        Hi Mel,

        Many thanks for your reply & blessings , may our lord walk with you at all times.

  10. Amanda says:

    Thank you for sharing your story. I havent been diagnosed but i find out some blood test results tomorrow. I recently started feeling really weak and tired, started having swelling in my feet and snkles. And chest congestion. Im really scared because i have a three year old little boy that needs me.

    Hi Amanda. I can understand the fear you are feeling at the moment. THe test results aren’t back yet so nothing is known for sure. My thoughts and prayers are with you. Please stay in touch. Will try to email you in the next day or so

    • Amanda says:

      Thank you for responding to me. Looks like the results wont be back until tomorrow. Went to my jeart doctor today and he wouldnt even do an echo he jusy prescribed another water pill and referred me to a sleep doctor.

  11. paul says:

    As a 41 year old male who was mostly fit and being diagnosed with heart failure came a reality check.A simple walk to the shop is now exhausting to say this time last year i was doing up to 20 miles a day bike riding.To others with the same condition try to keep positive

    Hi Paul and welcome. I can relate you what you say about the exhaustion. Good message in the “stay positive”. A positive attitude will carry you a long way and through a lot.

  12. Kate says:

    Hello, I just came across this and I am overwhelmed. My 56 year old husband of 2 years was diagnosed with CHF 4 years ago after a heart episode that had the docs puzzled. He is so stubborn that he tried to micromanage the EMT’s who finally said, “If you don’t listen to us you are going to die”. He nearly did. He is obese, takes at least 6 different drugs, can’t walk evn a short distance without becoming breathless and has refused to make changes in his diet or lifestyle. Besides the CHF he has a hole in his heart that he was born with and a bad valve that needs replacement. Since he has not made any changes he is not even a cantidate for surgery. At the end of each day his legs, ankles and feet are severely swolen. It’s heartbreaking to watch. He has a sedintary lifestyle that I began to be a part of. I have been infuriated and had to leave him. I recently moved out to a place where the community encourages healthy living, hoping he would join me. He has come to visit twice. I had to get out, I was afraid I was going to die watching him die. I feel so angry and selfish. He has refused to make any end of life plans or tell anyone his wishes. He works very hard every day running his own business and the stress is brutal. I don’t even know why I’m writing.

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  15. Lea Gartner says:

    Hi everyone…wow reading all of these and seeing that everyone truly shares similar feelings when it comes to HF diagnosis…well i would say i am another one that has gone past my expiration …date but i have never paid attention to that sort of nonsense…we are all so vastly different..there is always hope…live each day..try not to dwell on not living..you are right now, so you can fight this and still stay realistic….mine all started when i was 28 and found out i had stage 4 breast cancer….again..had 2 year survival rate given to me.that was 30 years ago..hee..but unfortunately the amount of radiation they gave you in those days has caused the issues i am having now…the radiation after all these years has damaged the heart muscles as well as my left lung and all the little vessels in this entire area so..not so good…..left and right heart failure…leaky valve that can not be fixed nasty efs on both sides but….and this is a big but…you know…i do not define myself by this diagnosis…sure you have days it can be so depressing to think about it but do no let the disease..or the doctors tell you your future or what and when ..something is going to happen…they do no know…I try not to limit my activities before i try…like ‘oh i cant do that’ I just give it a try and let your own body do the limiting.. a lot of these survival rates were based on a study a couple of years ago. .every month there are new drugs, therapies, home ,remedies, and so much promising news about how attitude and perception of your disease can affect your outcome….so continue to live every day remember…its still you ….and fight it with all you have..and listen..read..research the net…talk to people like this that understand what you are going through…..I am really sorry if I sound like I know it all…I dont but I have lived 30 years with a death sentence hanging over my head that never happened…there is always hope and I am hoping the best for all of us….take care good people….it will be ok

    Hi Lea and welcome to the blog. I thank you for taking the time to leave this so very positive and up beat comment, it is nice to read. If you read back through the blog you will see our thinking is much alike. What you have stated so eloquently here is the message I have rambled on and on about, so well said. This has become like a little community of friends gathered to support each other and I invite you to join in

  16. Lea Gartner says:

    Thank you for the invitation. I accept…you know if I can be of any help to anyone in reference to procedures…surgeries..testing..I have really had it all at one point or another..no there are not violins playing in the background..ha…but it is just the nature of my history of disease starting with cancer leading up to today..so if I can alleviate any fear or apprehension about a certain test or procedure coming up i may be able to shed at least a patients view…I am by no means qualified to give advise but I have seen the inside of every room at our local clinic and hospital…many times it is just the unknown and teh test is really not a big deal at all…well have to go…take care…and thank you for your kind words and reply Lea

    Hi Lea and thank you for making yourself available as a resource sharing the patients prospective. That is a large part of why I started this blog. To provide at least a degree of comfort and support to any that are ailing in anyway. I agree very often we cause our selves a lot of what turns out to be unnecessary stress as we wait for pending medical tests, procedures or even operations.
    Short of a transplant I think I have been through possible when it comes to the heart. To me the very word cancer is scary, I have virtually no knowledge or real understanding it. As time goes by I am sure comments will be left by those in need. You supportive loving comments I am sure will be appreciated

  17. I believe everything posted made a bunch of sense.
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    I mean Dying Mans Daily Journal – Heart Failure Mortality |
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