Congestive Heart Failure

[brokenknee]

First off I want to make it clear I am NOT asking anyone for medical advice. I have a doctor and a cardiologist. I am merely asking for personal experience with the disease.

About a year ago I was diagnosed with CHF, my ejection factor was 30% one test and then 35% on another. When they told me about it I thought no big deal. Just lately the wife sees a commercial on TV that says 50% of those diagnosed with CHF will die within 5 years. After a little research on the interlink (Al Gores invention, renamed by George Bush). I found a number of studies that support that claim. One had the mortality rate as high as 80% in 8 years for men.

I know with all statistics there are a number of factors to consider and only the big guy upstairs knows for sure when it will be your time.

I will be 62 in May and for the most part I still feel I am in good health. I am not physically fit by any means, (overweight, high blood pressure, high blood sugar), but I stay active, cut and split my own wood and do other chores around the homestead. I do get winded a little quicker than I use to, but figured that was do to old age and being out of shape.

I was just wondering if anyone has any personal experience with CHF and how the progression went. When I asked my doctor he just said there are to many variables. That I understand, however I just wondering if the 50% was pretty much the norm or if a lot of it is slanted because of ill health from other factors.

Again I want to make it clear I am not seeking medical advice.

 

[stuckmotor]

No experience myself. My grandfather died with CHF at 89 and my grandmother died with it ten years later to the day at 93. I don't know how long they'd had it. May you live as long as they did.

 

[tcreeley]

I have had very high blood pressure - top number 199 and have lost some vision in my eye due to an occlusion. I don't take meds of any kind. I used to use beet juice every day to lower the bp and it helped. Biggest thing was cutting out sodium and getting exercise. My doctor would tell me nothing except get hysterical when I stopped taking the meds he prescribed. Weight loss has helped- being active every day and slowly losing weight keeps my bp lower, and I notice now that when I start to gain weight my bp starts to rise. I have arthritis and use a cane. The days my hip bothers me, my bp is higher - the inflammation I believe. I use the herbal things like ceylon cinnamon and turmeric and lemon juice and tart cherry juice - all to avoid nsaids.
Hard to find info on the internet that isn't trying to sell you something. Good luck here. My son has had some luck with facebook for his medical condition.
I figure a lot is attitude, and enjoying what you do. My wife is always ready to swoop in but I just go on my own way using logic to reason things out and the internet for info. The English sites provide more info and less of a sales pitch.
Goodluck.

 

[oldpilgrim]

There are too many variables to predict what will happen.

My father was diagnosed with it at 85. He died last November at 90.

My father in law, who lives with us, was diagnosed with it 5 years ago and is still healthy as a horse at 90.

I don't know what to tell you, but do what the Dr says and stay as healthy as you can.

Sorry to hear about your problem. Good luck to you.

 

[murphy1244]

My brother died from CHF at 40

 

[Barry 1]

My mom was hospitalized 2 years ago with CHF and a small stroke.She recovered quickly and I made sure she followed her diet and took her meds,but I just couldn't get her to exersize much.They told me that most people her age don't last a year,but she made it 2 years and died 2 days before this Christmas at 83. Her heart wasn't pumping enough,and she had a heart attack. She also had type 2 diabetes( like me now) and weighed 129#

 

[RalphVa]

I got it in December of 2012. Ejection fraction was 35%. Within a year, it was up to 50%. Now, it's around 50-55%.

Follow your low sodium diet. My father got his the 2nd time, and it killed him. He was around 80 when he got it and died about 3 years later. I was only 70 1/2 when I got it.

The leg swelling accelerated nerve loss in my lower legs and feet. Now, I have "diabetic" (no diabetes) nerve pain that I treat with capsaicin cream. The leg swelling lasted about 6 months. Think my ejection fraction was up by then. They just didn't measure it until a year later.

I was diagnosed with afib in October of 2012. Think my heart being weakened by afib and the drugs for it brought on the CHF. Mainly, my afib drugs made my prostate drugs quit working. The TURP to remove my prostate and the use of all the liquid to wash out the scrapings then easily caused the CHF.

I was only about 10 # over weight but lost 35 # during the 2+ months recovery from CHF. I've slowly put back on weight to get up to 180# for about the last 3 years. The doctor has me weighing myself every day. If I put on more than 3 # in a day (just retained water), I'm supposed to check into the ER. So far, I've bounced up and down about 2.5 # but usually stay right around 180 #. This winter, it's crept up a # or 2. I plan to get it back down to 180 #.

Think eating a low sodium diet and keeping the weight down and probably also keeping in shape will allow you to live past those 5 years. My main problem now is the afib giving me chest tightness because the top part of the heart gets out of time with the bottom part. Been through lots of meds, 3 shock treatments, ICD implant and 2 ablations. None of the meds worked, and the shock treatments only worked 1/2 day to possibly 3 days. The 1st ablation took me down to 1% from 90% afib for about 18 months. When it gradually went back up to around 15%, my doc did a 3rd ablation which only took it down to 2%. Think now it's back up. Not sure what they'll do. A friend of mine had to have a 3 lead ICD. They put a 2 lead one in me in 2013 because Medicare wouldn't allow the 3 lead one. Could be what they want to do. The 3 lead ICD would regulate both the top and bottom heart rates so they hopefully stay in time. This continuing afib is mainly affecting my activity.

I think the CHF made my body weaker in resisting some other things. One thing I came down with is Fuchs dystrophy. Normally, only female heirs get it. Got one eye fixed. Plan to get the other done in May. Got the afib and Fuchs from my Mom's side of the family and the CHF from my father's side. His mother had leg swelling. Think she died of CHF.

Good luck. Follow the low sodium diet. It's tough, but you can make up for little to no salt with some more spices, kelp in place of salt, etc.

Ralph

 

[brokenknee]

There are too many variables to predict what will happen.

My father was diagnosed with it at 85. He died last November at 90.

My father in law, who lives with us, was diagnosed with it 5 years ago and is still healthy as a horse at 90.

I don't know what to tell you, but do what the Dr says and stay as healthy as you can.

Sorry to hear about your problem. Good luck to you.

I would like to see the age group broke out in the study. I would think if you were diagnosed at 85 and then pass at 90 should that even be factored in?

The wife is pushing even harder for me to retire in May, however that would leave us without health insurance and Lord knows we really need it. She also has many health problems. Not to mention the hit I would take on my retirement (24.? %) and Social Security.

Heart problems run in the family, youngest brother died early 40s heart attack, second youngest brother stroke at 50, triple bypass at 52, heart attack at 54. Oldest sister has one stent, dad had several heart attacks but lived until 84. Other than my youngest older sister I thought I was the healthy one .

 

[teejk]

You got the docs...but did they check your legs? That was my problem...heart/neck came out just fine but when they checked the legs they didn't even bother with the stress test...heart was working overtime to supply blood to the legs (I had an office job and spent too much time there)...62 would seem to be early for CHF. Like I said...you got the docs but sometimes you have to question them...they often only appear to know what's best for you.

 

[brokenknee]

I got it in December of 2012. Ejection fraction was 35%. Within a year, it was up to 50%. Now, it's around 50-55%.

Follow your low sodium diet. My father got his the 2nd time, and it killed him. He was around 80 when he got it and died about 3 years later. I was only 70 1/2 when I got it.

The leg swelling accelerated nerve loss in my lower legs and feet. Now, I have "diabetic" (no diabetes) nerve pain that I treat with capsaicin cream. The leg swelling lasted about 6 months. Think my ejection fraction was up by then. They just didn't measure it until a year later.

I was diagnosed with afib in October of 2012. Think my heart being weakened by afib and the drugs for it brought on the CHF. Mainly, my afib drugs made my prostate drugs quit working. The TURP to remove my prostate and the use of all the liquid to wash out the scrapings then easily caused the CHF.

I was only about 10 # over weight but lost 35 # during the 2+ months recovery from CHF. I've slowly put back on weight to get up to 180# for about the last 3 years. The doctor has me weighing myself every day. If I put on more than 3 # in a day (just retained water), I'm supposed to check into the ER. So far, I've bounced up and down about 2.5 # but usually stay right around 180 #. This winter, it's crept up a # or 2. I plan to get it back down to 180 #.

Think eating a low sodium diet and keeping the weight down and probably also keeping in shape will allow you to live past those 5 years. My main problem now is the afib giving me chest tightness because the top part of the heart gets out of time with the bottom part. Been through lots of meds, 3 shock treatments, ICD implant and 2 ablations. None of the meds worked, and the shock treatments only worked 1/2 day to possibly 3 days. The 1st ablation took me down to 1% from 90% afib for about 18 months. When it gradually went back up to around 15%, my doc did a 3rd ablation which only took it down to 2%. Think now it's back up. Not sure what they'll do. A friend of mine had to have a 3 lead ICD. They put a 2 lead one in me in 2013 because Medicare wouldn't allow the 3 lead one. Could be what they want to do. The 3 lead ICD would regulate both the top and bottom heart rates so they hopefully stay in time. This continuing afib is mainly affecting my activity.

I think the CHF made my body weaker in resisting some other things. One thing I came down with is Fuchs dystrophy. Normally, only female heirs get it. Got one eye fixed. Plan to get the other done in May. Got the afib and Fuchs from my Mom's side of the family and the CHF from my father's side. His mother had leg swelling. Think she died of CHF.

Good luck. Follow the low sodium diet. It's tough, but you can make up for little to no salt with some more spices, kelp in place of salt, etc.

Ralph

I thought CHF was a progressive disease? I did read a few post on other forums were people said their ejection fraction improved, but everything I have read on medical sites says the disease only can get worse. My ejection fraction was 30 on the first test and then 35 on the second test. When I asked the doctor he said it was because they were two different types of test.

Low sodium for me is not that hard. The only things I ever added salt to were corn on the cob, fresh fish and popcorn. The wife never adds salt when cooking as her dad had heart issues for when she was a young girl.

I would like to thank everyone for their honest replies. I guess I just felt I needed to talk about it a bit. I don't like to talk to the wife about it as she tends to over worry.

 

[brokenknee]

@ teejk, I think they have been pretty thorough, I have had a stress test, electrocardiogram, ultra sound, angioplasty, MRI and I think a few other test I can't remember.

 

[TnAndy]

Not medical advice, but check out Co-Q10 and CHF. I take it religiously.

 

[teejk]

@ teejk, I think they have been pretty thorough, I have had a stress test, electrocardiogram, ultra sound, angioplasty, MRI and I think a few other test I can't remember.

Ok...was just wondering...my problems (at age 54) turned out to be in the legs....function of #1 too much time at a desk before employers became aware of that "crimp" the old office chairs used to cause in the leg veins #2 I smoked #3 Heredity...every male in my lineage has had leg circulation issues. If it's in the legs your heart works harder and you will have problems with excess fluid. I got the balloon on one leg that worked for a while. I remember my cardio specialist talking about it and delaying any treatment until "those guys are finished mucking everything up". Gave me great confidence...they don't even trust each other...

 

[brokenknee]

Ok...was just wondering...my problems (at age 54) turned out to be in the legs....function of #1 too much time at a desk before employers became aware of that "crimp" the old office chairs used to cause in the leg veins #2 I smoked #3 Heredity...every male in my lineage has had leg circulation issues. If it's in the legs your heart works harder and you will have problems with excess fluid. I got the balloon on one leg that worked for a while. I remember my cardio specialist talking about it and delaying any treatment until "those guys are finished mucking everything up". Gave me great confidence...they don't even trust each other...

Not tied to a desk, but can spend a lot of time driving during the day. Tomorrow will spend about 7 hours driving for two separate appointments that will take less than 1/2 hour each. But that is the nature of my job. Never did smoke, I was always to cheap, best thing my parents did (both smoked) was complain about the cost of a pack of cigarettes all the time. Yep, as stated earlier the heredity thing is the number one thing that is getting me. That and I should have taken better care of myself when I was younger.

 

[teejk]

Not tied to a desk, but can spend a lot of time driving during the day. Tomorrow will spend about 7 hours driving for two separate appointments that will take less than 1/2 hour each. But that is the nature of my job. Never did smoke, I was always to cheap, best thing my parents did (both smoked) was complain about the cost of a pack of cigarettes all the time. Yep, as stated earlier the heredity thing is the number one thing that is getting me. That and I should have taken better care of myself when I was younger.

The age old adage "if I knew I was going to live this long I would have taken better care of myself"...about 10 years ago my employer changed out all the office chairs to the "ergonomic" ones that cost about $1,000 each. I guess the science was conclusive that proved the health risks with sitting in a chair that put pressure above and behind the knees (I equate it to a kinked garden hose that with time will form blockages even if unkinked). I'm retired but a friend works for a company where the office computers shut down every hour and require the workers move around for a few minutes. I know you specifically said "no advice" but if they haven't tested your legs yet (a series of blood pressure cuffs up and down) you might want to ask. Your legs carry a lot of blood and fluids and work the hardest to return it to your heart to recirculate the blood and pass the fluids to your kidneys. If that's all been looked at, then I guess you have some good docs. You did mention weight so maybe work on that (I went from 210 to 158 in a few months but even the docs said 158 was too light for my build...imagine hearing that from a doc!).

 

[Streetcar]

My father was diagnosed in his early 70s and died of a stroke at age 80.
For him the best treatment was diet and as much exercise as possible. His friend that did not exercise progressed much faster in his disease

 

[dmccarty]

My wife's grand father had CHF for 10-15 years before he died. The family always said that the average lifespan after the diagnosis was five years so he did very well. They are supposed to have changed his diet. I only was around at holidays so I don't know what he ate before CHF or after and he did go walk in the mall every day. They think the diet change and the walking was why he lived past the five years.

I have been talking about walking over on the diabetes thread. Last year, work gave us an incentive to use a FitBit to track our steps. They want us to walk 5,000 steps each day which is not hard to do at all. I know aim for 10,000 steps a day and since I started the 10,000 step goal in the middle of January, I have only had one day where I got less than 10,000 steps. Even then, I did over 5,000 even though I had a bad head ache. The nice thing about a 5,000, 10,000, whatever step goal, is that you can do it here and there during the day. I still end up walking at least once or twice for 20-30 minutes each which I think is important. I certainly don't get my heart rate up near my max but some exercise is better than none. I also ENJOY walking which I can't say for any of the other work outs I have done...

One does not have to use a Fitbit, any old pedometer works, and one can keep track of the steps on a piece of paper or spreadsheet. Or one can count how many steps are taken per minute a few times and go by how long you walk. Tracking the steps/miles does help me walk.

Later,
Dan

 

[JRobyn]

Take the ominous statistics with a grain of salt (not literally). You can see just from the posts on this thread that it is common for CHF to be first diagnosed for those in their 70s and 80s. So a remaining life expectancy of 5 years is not far from the "averages" even without any medical issues (like you suggested in post #8).

I do not have CHF. Leukemia is my challenge. Just a few years ago my kind was a quick death sentence, yet here I am, 3 years later in some sort of remission that the doctors can't really explain. All the statistics still reflect experience from the past. I can say that better scientific understanding of the underlying factors has prolonged the prognosis, as has good doctors and improved pharmaceuticals. Certainly reasonable adjustments in diet and activity can have a positive impact. But you nailed it in your first post IMHO, when it is your time, it is your time. So enjoy the blessing of each and every day as if it was your last.

 

[murphy1244]

Take the ominous statistics with a grain of salt (not literally). You can see just from the posts on this thread that it is common for CHF to be first diagnosed for those in their 70s and 80s. So a remaining life expectancy of 5 years is not far from the "averages" even without any medical issues (like you suggested in post #8).

I do not have CHF. Leukemia is my challenge. Just a few years ago my kind was a quick death sentence, yet here I am, 3 years later in some sort of remission that the doctors can't really explain. All the statistics still reflect experience from the past. I can say that better scientific understanding of the underlying factors has prolonged the prognosis, as has good doctors and improved pharmaceuticals. Certainly reasonable adjustments in diet and activity can have a positive impact. But you nailed it in your first post IMHO, when it is your time, it is your time. So enjoy the blessing of each and every day as if it was your last.

Welcome the CLL club, did you do chemo?

 

[teejk]

Take the ominous statistics with a grain of salt (not literally). You can see just from the posts on this thread that it is common for CHF to be first diagnosed for those in their 70s and 80s. So a remaining life expectancy of 5 years is not far from the "averages" even without any medical issues.

I do not have CHF. Leukemia is my challenge. Just a few years ago my kind was a quick death sentence, yet here I am, 3 years later in some sort of remission that the doctors can't really explain. All the statistics still reflect experience from the past. I can say that better scientific understanding of the underlying factors has prolonged the prognosis, as has good doctors and improved pharmaceuticals. Certainly reasonable adjustments in diet and activity can have a positive impact. But --- nailed, it IMHO, when it is your time, it is your time. So enjoy the blessing of each and every day as if it was your last.

I still have the scars from the bone marrow "harvest" for my brother that developed adult on-set leukemia...that was probably 25 years now. He's been through **** with the effects of radiation and chemo (diabetes, cataracts, etc.) but he's still kicking after all these years and in general loving life. He was a "guinea pig" and one of 2 survivors from a group of 12...I understand that things have improved a lot since that time. So you are correct...statistics don't always reflect advancements in treatment. And you are also correct "when your number's up you gotta go". The old Schlitz commercial said "You only go around once in life...grab for all the gusto you can".