I think the word a sympathetic news anchor reporting on these numbers would use is "sobering".
Although many people with heart failure live for many years, up to 70% of people die of the disorder within 10 years. Life expectancy depends on how severe the heart failure is, whether its cause can be corrected, and which treatment is used. About half of people who have mild heart failure live at least 10 years, and about half of those who have severe heart failure live at least 2 years.So, assuming this article is accurate, and assuming my heart failure is mild (which I think is a safe assumption given that I'm able to work), I still only have a 50/50 chance of living for just ten more years.
But I have to remind myself that four years have passed since this article was written. Maybe something is different now.
I will try not to freak out too much until I see my cardiologist next week and ask her about it.
However, if it turns out that not much has changed and I am not going to live much past a decade from now--if even that--then some things are going to have to change in my life. I won't be able to put off all the stuff I want to do until later. And I won't have to plan for retirement, either, which means I won't have to feel guilty about spending the money. The first priority will be moving back to Kentucky, and after that, getting to England to see Brooke, and getting back to Japan.
And of course, I will do my best to live as long as possible, which means listening to my doctors and taking care of myself. I can't eat like I've eaten my entire life anymore. I have to eat lean meats, vegetables, no fried food. No more desserts. A lot fewer starches/carbohydrates. Heart-healthy stuff. And I need to go ahead and get a treadmill because aerobic exercise is recommended, on days when I feel up to it.
I had a Slim-Fast for breakfast, a Chick-fil-A Cool Wrap with a fruit cup and Diet Dr Pepper for lunch, and a swordfish steak, baked potato, and steamed veggies for dinner, but while those were healthier options than my usual, I will need to move away from eating out as much as possible--it adds too much sodium.
There may be nothing to worry about; iVillage has a list of questions for CHF patients to ask their doctors, and one of them is "Is my heart failure likely to seriously affect my life expectancy?" which suggests that some heart failure might not (although maybe this question is there because it usually does, but I'm an optimist). But regardless of what I hear at the doctor's, I am going to work to make these changes in my life so I can be healthier.
7 comments:
I'm going to apologize now, because I USUALLY have my thoughts together a bit more cohesively, but today I wanted to make sure I just threw out everything I was thinking. And if I realize I forgot something, I'll come back later, and throw out ANOTHER comment.. ;)
Research, research, research!! Question the doctors, KNOW your enemy, that's the BEST PLACE to start.
The more you know about CHF, how it is specifically effecting YOU, and what can be done to help control it and stabilize as much of YOUR particular known cause as possible, through meds, diet, POSITIVE OUTLOOK, and whatever sort of exercise you're allowed, is the key.
And DON'T go getting that treadmill and jumping on it until you talk with your doctor about it. It might not be right for you JUST yet; you might have to give the meds some time to do THEIR thing before you can help them out with exercise. Keep in mind, too, that you might not be able to exercise like you used to, as well.
Don't freak yourself out about the numbers you're reading, either. Sure, be aware of what the tests are saying, what treatments they're talking about, and such, but don't just let blind numbers and statistics scare you. Those are studies of huge groups of people, as you well know, and like you said, there might have some advancements and changes since the main study you mentioned was done.
Focus on YOUR INDIVIDUAL health, and work with your doctors as a team on YOUR CARE, not worrying about what was best 4 years ago for 3,000 or however many case subjects. Don't let what you read cloud you or worry you, either, if you read something you don't like, mention it to your doctor, they're there to answer your questions, and work WITH YOU, not just ON you, to fix you. If you have a question, and no appointment for a few weeks, give them a call, leave a message for the doctor --one who's worth trusting with your care will get back to you regarding your concerns. Don't forget to BE INTERACTIVE!! ASK about your meds, what they do, what they're for, any possible side effects, etc., don't just assume the doctor knows what they're doing, YOU need to know what's going on as well, and part of your best overall care for YOU will be by knowing as much as you can about what's going on with your health from the get go. This is the time right now for getting you set on the best meds for YOUR CHF, and like your doctor had said, they're going to be trying out different dosages --and quite possibly even several different meds-- until they're satisfied that you're getting exactly what YOU need.
So don't go spending up all of that retirement money JUST yet, little lady. ;)
Unless of course, you're thinking of blowing it in grand style, in England; I might consider looking the other way if THAT'S the case.. ;) Heheh, I'm KIDDING! You'll only need a plane ticket and some spending money, your room is ready and waiting for you. :)
I LOVE YOU! And don't you worry, WE're going to get a grip on this biatch!!
((Sorry, too many spelling flubs when I published this the first time. :P))
There are 4 general stages of heart failure, and the prognosis for each stage differs depending upon a host of factors. The most important factor being - how well the patient responds to pharmacological therapy and appropriate changes in lifestyle.
You are probably on the borderline between stages b and c, leaning more towards c since you have some clinical symptoms and a decreased ejection fraction (EF). I can't remember if you mentioned having cardiomegaly (enlarged heart) as well. It is certainly possible to regress from stage c back to stage b (symptom free other than a reduced EF).
Most of the literature for CHF life expectancy is biased. This is mostly because the large portion of CHF patients are older and have had other health problems (usually a heart attack). They also tend to be non-compliant with lifestyle changes. If I had a quarter for every CHF patient I saw that continued to eat poorly, smoke, or not exercise then I wouldn't need a job anymore.
I'd be curious to see which meds your doctor has put you on. The typical triad is an ACE inhibitor, a beta blocker, and a diuretic. I'd also be curious to know if your doc has diagnosed a specific side of your heart as having heart failure, because there is a difference between left sided and right sided heart failure.
Another good point is that CHF doesn't just happen. There is an underlying cause. Generally it results from uncontrolled high blood pressure, heart attacks, other heart problems (such as defects), thyroid and endocrine problems, and pulmonary problems.
Some other indicators for having a good prognosis is maintaining a healthy lifestyle change with weight loss, reduced sodium intake, controlling high blood pressure, limiting other risk factors, and limiting risk factors for co-morbid diseases that can accompany CHF (like kidney problems).
You can recover from this and keep going. I remember picking up a 15 year old who had CHF since he was 6 because he has a severe heart defect. I picked him up because he broke his wrist skateboarding.
YEY!! KELLY 4TW!!
Ok... I know I don't post often, but wanted to let you know you're in my daily prayers/thoughts.
Dealing with my own medical uncertainties, what-ifs, and experiments by docs... I have to say you're a step ahead by knowing your enemy! :-) Attack & give no ground! :P
One things to remember is that statistics are skewed... Never completely accurate. Could be there hasn't been another article b/c the powers that be realized they didn't know everything.
So I just checked in on you after a long while of not... and I am in shock and awe.
Shock by the fact that this happening to you.
Awe by the fact that you blog about it in a such an optimistic way.
You shouldn't worry.
There are many people out here hoping only the best for you.
As an optimist myself the only thing I can say is what I always say...
"It's gonna be fine."
Hang in there! You got people thinkin' about you!
I asked my doctor during the last visit about exercise; she's the one who said to do the treadmill, for half an hour a day on days when I felt up to it, and only walking to the point that I could still hold a conversation with someone.
Kelly, I'm on furosemide (lost 40 pounds of fluid in like three weeks), lisinopril, coreg, and potassium to balance the diuretic. I'm on the tiny dose of coreg and they plan to continue upping it.
I'm not sure if my heart is enlarged. I think (but am not sure) they said it was the left side of my heart.
I had a horrible migraine last week, but migraines are a side effect of coreg. I called my doctors about it and they basically said to watch out and let them know if it happens again.
I have an appointment with the cardiologist (Dr. G) next Monday and I am going to ask about all this stuff, and the prognosis, and whatnot.
Thanks to everyone for keeping me in your thoughts. I really believe that everyone's well-wishes helped me when I had leukemia, so thank you.
This morning I woke up around 6:45 and couldn't get back to sleep. I went out to the living room where Sean was at his computer, and I just sat next to him and snuggled in. Eventually I told him what was bothering me. He had to go in to work early, unfortunately, so I tried to go back to bed while he got ready.
A little later I felt his hands cradling my face, and he kissed me. "I love you," we both said, and then he kissed me again and added, "Don't fret. You're not going to die young."
After that I slept like a baby.
I know nothing about heart issues, so I have no advice to offer. But do be an "informed consumer" and ask your docs lots of questions. As I've said before, I think the fact that the problem has been correctly diagnosed fairly early is a big advantage. Hope your doc gives you good news!
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