What does "end stage" congestive heart failure mean for my mother?

24 answers | Last updated: Apr 21, 2014
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A fellow caregiver asked...
My 80-year-old mother has had congestive heart failure for almost ten years. Last week she was admitted to the hospital and her doctor told us she's in "end stage" heart failure. What exactly does this mean?
 

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Barry M. Massie is chief of cardiology at the San Francisco V.A. Medical Center.
63% helpful
answered...

Heart failure is a serious condition -- but it's also one that can be treated with considerable success. I don't like the term "end stage" because many patients improve even See also:
Heart failure stages: what to expect (and what to ask a doctor)

See all 55 questions about Congestive Heart Failure
if their overall heart function is poor. I've had patients who were labeled this way who have done well for years.

Also, heart failure can wax and wane. A person with heart failure can have periods of worsening symptoms that require hospitalization, perhaps as a result of not taking all of the prescribed medications correctly or not following a low-sodium diet. But with increased therapy, she might improve enough to go home.

In some patients, however, the heart may not be able to pump adequate blood to vital organs. This can result in kidney failure, severe shortness of breath after limited activity, and even reduced mental status.

I'd recommend a consultation with a cardiologist to make sure your mother is receiving all of the medications that have proven to be helpful for this condition. And make sure you take the time to talk to your mother about the future. Ask her about what she wants done if her heart failure worsens to the point where treatment is no longer effective.

 

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mustangsally91 answered...

It is one of the hardest things I've experienced watching my own mother's health decline. My mom began having depression about 18 months after my dad died. She felt that she had nothing to live for without him. No amount of talking to her to get her to see all the good things she had going, like a loving family and friends and being financially stable mattered. Sometimes it was so frustrating. When she finally got so bad with her health that she collapsed and ended in the hospital, the doctor's found she was extremely anemic. They ran upper and lower GI tests but found nothing to show she had colon cancer or any other type of internal bleed. No one ever checked her kidney function and it is sad that it was ignored seeing as how my mom has type 2 diabetes. We were told to find mom a Nursing Home for there was nothing more that could be done. It took my mom only 2 1/2 months after the hospital and going to the Nursing Home before she passed and she died of kidney failure.
Now I face congestive heart failure with my husband. It came on suddenly, one day fine, the next shortness of breath and heart pounding. His own primary care doctor chalked it up to stress and anxiety and wrote a script for Ativan and gave him an inhaler. He also sent him for a chest x-ray but then lied to my husband about the results saying everything was ok. We found out otherwise when I had to take my husband to the ER just a few days after seeing his doctor. I am mad that his doctor would with hold such information that my husband has an enlarged heart which the x-ray showed along with some fluid in his lungs. No medication was prescribed just the anxiety med and inhaler. It wasn't until the ER visit that my husband was given the proper diagnosis and medication to help him. After we had last seen my husband's doctor, I wasn't happy and once we got home I called a cardiologist and made an appointment. I had even asked my husband's doctor if my husband's problem could be heart related and I was told, "no, I don't think so. What an idiot! Once we saw the cardiologist, we found out from an echo that my husband whole heart is weakened and his ejection fraction is only 15%. Not good at all and his lungs had more fluid in them as well. Since then, I've been making sure my husband gets the prescribed medications that his cardiologist ordered such as, Lasix to remove the excess fluid, Lisinopril to help his kidneys and Coreg for his heart so it doesn't have to work so hard. So far things seem to be working that and I give my husband several supplements. COQ-10 200mgs daily, magnesium 500mgs daily, potassium 99mgs daily, vitamin C 500 mgs daily, vitamin D 1000 mgs daily, hawthorne berry 500 mgs daily and a very good vitamin B complex that has 100% of all the B's. I've read that there is a disease called, Beriberi of the heart all due to a lack of B-1 and B-4. I've been making sure my husband gets these vital nutrients. I even asked the cardiologist about the B vitamins but like most doctor's he hasn't a clue about nutritional things so I got ignored. But I can tell you that at my husband's last check up, the doctor was very happy as he could see an improvement. My husband is scheduled for another echo on Nov. 9th and his doctor feels there will be a big change. I am so happy too. Never think you can't reverse anything concerning the heart. It is after all a muscle that needs proper nutrients and one needs to get some exercise too. My husband goes out each day and walks around the block. It's all he can manage for now but its something. Do look into getting some of these supplements and try them, it has made a big difference for my husband and I am keeping my fingers crossed that within a few months things will be almost back to normal. Hang in there, never give up. Doctors won't tell you about taking supplements so one has to take control of their own health and do research and do what you feel is best. I wish all those who are enduring heart disease the very best of health and I know you will get some good results.

 

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bay answered...

mustang sally's answer was pretty good. heres what works for my 91 year old mother in law. co-enzyme q10 200mg, l-arginine 1000mg, l-carnitine 500mg plus d-ribose two chewable tablets per day.Remember doctors don't know anything about nutrition or supplements,also eliminate salt from the diet!take 60 mg of lasix if breathing becomes difficult or shortness of breath.swelling of ankles. or cracle in lungs then go back to 40mg after swelling goes down and breathing is normal. I have 35 years on vitamin herb and supplement research.This is the miracle you are looking for. This will help immensely please say prayers for me Thank you, Anthony

 

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MaryClaire answered...

Thanks so much for your post on CHF. I'm going to check out those nutritional additives. I have just entered a severe stage in my long standing CHF, and it's pretty scary....I hope your Husband is coming along, and getting better. What a blessing he has in you, and how well he is cared for by an intelligent and proactive wife.

 

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mustangsally91 answered...

MaryClaire: My sincere thanks to your kind comment. Don't think of your heart condition as being anything but what it is, the term, end stage is to depressing. With my husband, the less stress the better and so I am trying with all my might to keep our lives happy and optimistic. If I feel like crying, I do it while in the shower or when I can be alone, it upsets my husband to see me crying. He tries so hard to be of comfort to me and I am blessed to have him with me. Each day is a gift from God and I never take one day for granted. Since retiring from my nursing job to care for my husband, I have done so much research. It was one of the first things I started after his diagnosis. I wanted to know all I could about the disease and what to do and what not to do. There are many wonderful doctors who I've come across. Dr.Bruce West, which you already know about and his protocol that my husband is on. There's also Dr. Sinatra, Dr. Mercola, Dr.Whittaker, Dr.Jonathan Wright. All of these men each have some very good advise. I too have my own problems with high blood pressure and in the 23 yrs. since being diagnosed, I've yet to get it under control even on 3 medications. The horrible side effects I've experienced from trying different meds was the worst. Wish doctors could go through what they put their patients through so they'd know. I've even had doctors tell me that my side effects couldn't be due to the medication they prescribed and one told me to stop researching my medications. WOW....and I thought that we were to be knowledgable about our conditions. Do try the Cataplex B that Dr. West suggests. I know that it has helped my husband from having an ejection fraction of 15% to now being 25%. Sure, it's not up to normal but we'll take any improvements. I also give him the other supplements I've mentioned and they give him a boost of energy and he is able to do a lot more. He now takes sprionalactone as his water pill. Since my husband is also diabetic, he cardiologist took him off the Lasix for it can cause kidney problems and now he isn't having so many visits to the bathroom. It's also a drug that in time can shrink an enlarged heart as well; my husband has that problem too. My you be able to find what works for you but I know you can't go wrong with the Cataplex B. Look for it on Amazon or I have also found it at Naturamart.com. Sometimes you can find someone selling it on Ebay. I try to find the best pricing for it along with the other supplements. As for the COQ-10, you can take as much as 600 mgs. daily and the D-Ribose can be taken up to 6 capsules at a time. We also have a very good friend with CHF who recently started taking COQ-10 and the D-Ribose at my suggestion and he's says he's feeling so much better with more energy. I thank God that I've been of help to my husband and our friend. I would love to hear how you're doing in a month. Email me at vabanta@msn.com if you'd like. Take care and be well. Valerie

 

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wardbeverly answered...

My mother was also diagnosed with CHF. She lived with this condition from 2001 until 2010. It's a condition that's almost like a roller coaster, the balance of it all. she lived a very productive life until the end stage. Its hurtful just to speak of Conjestive Heart Failure. We often wondered how this happen, the physician explain it came from a virus that traveled to her heart. Please be encouraged, and cherish each and every moment you have. i'm praying for you and your family,

 

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Jade1961 answered...

I have CHF, I also am in remission from Multiple Myeloma (something the "expert doctors" stated would kill me 18mths after the diagnosis). (I was one of those experts for 20 years as a Physician Assistant & a Midwife. I never gave a patient a negative prognosis even when the obvious was staring us in the face. I always tried to find a good thing for them to hang on to, in an attempt to get them through the tough times. It usually worked, I say usually as not everyone is as open to finding their own path. Most people want their Doctor to tell them what is going to happen and to their amazement it does, Mind over matter I say. IMHO) I have been in remission from the Multiple Myeloma for 10 years as of August 2010. I did not take Chemotherapy as I was told there was a 60% chance that it would kill me. Same with any radiation therapy. I chose God & Natural supplements. Doctors are NOT God & they are wrong to tell anyone that "this is the end". They can not say that with certainty, ever! If I had listened to the doctor & had the chemo anyway I would most likely be dead by now as he put that thought in my head and the mind is a powerful thing. I now live each day as a gift, CHF getting worse but I still keep going. I have been utilizing most of the same herbal, vitamin & mineral supplements that I used to kick the cancer's butt. So far so good. At my last Cardiologist Appointment he asked how I managed to get most of the fluid out of my lungs ... I winked and said "Ancient family secret". Then I explained what I had been doing, he smiled. He also gave me a prescription for several medications for my heart & lungs but told me he was doing it to cover his butt. LOL I did fill them and am using them in conjunction with the alternative therapy. We will have to wait and see, besides ... I have asked God to keep me around to see my 20 year old son get married and have our first grand child. I know He will allow that ... ALWAYS turn your fear into faith, whether you are Christian, Muslim, Hindu, Buddhist or of another belief system ... Faith does move mountains & it heals too ;-) Sometimes we have to avoid the negative thoughts that the "experts" place in our minds to avoid certain demise. Instead remember this, "Unity is Strength, Knowledge is Power and Attitude is Everything" ~ Borrowed from the Manifesto of The Lance Armstrong Foundation

God bless you as you go through this difficult time & try Mustangsally91's suggestions, they cannot hurt. :)

 

claire Meinerth answered...

I have chf, carodud stenosis, copd and coronary artery desease can get around my house fine with walker but live alone and need more people in my life, my dr is pessimistic, assisted living is so expensive any suggestions do to much thinking when your by yourself, my children one lives in another state and my daughter here cant bear the burden they are good people that is just the way it is, my good husband was older then me and died several years ago I would appreciate advice is it better to stay home as long as you can

 

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Jade1961 answered...

@claire MeineĀ­rth, Hon please read my previous post as it would appear that you would qualify for the same kind of program I am in. Find out from your local Welfare office, General Practitioner's office or even possibly your local center on aging. I hope what I wrote previously will help you to obtain the support you need & keep you in your home safely. God Bless & if you have any questions please feel free to contact me by using the hug or prayer function where I can send you my personal e-mail. Jade

 

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mustangsally91 answered...

claire, I am so sorry that you're having so many problems. As you've probably read, my husband has CHF that came on suddenly. One day he was fine, the next he's having shortness of breath. He's seen 3 different cardiologists, and I can tell you, not all doctors are the same. His second doctor was rude and intimidating, telling my husband that according to his echo, he'd already had 2 heart attacks. Now, how is that possible? My husband never has had any chest pain nor does he have hypertension. This doctor then tried to force my husband to under go an angiogram which I wouldn't allow. There is nothing to support that a patient is better off with having stents put in and so we treat my husband with supplements. It's been almost 16 months since my husband's diagnoses and so far, he is stable. He's not had to spend one day or night in the hospital. His ejection fraction started at 10% and his last echo showed it had increased by 15%. I continue to give my husband the supplements I've mentioned and I continue to do research. It is well to keep updated on anything that may help this disease. I know how hard it is to not have family to lean on. I have two kids who lived far away. My daughter won't even speak to us nor allow us to have contact with our grandkids. Our son, if he calls, its because he wants money. Waking up to find that my husband is still with me is a miracle and I never take one day for granted. We lean on each other but I know there will come a time when one of us will leave this world. As you, I don't know what I'll do. I am not one who could live alone, it scares me so much to think I have no one to help me. I will keep you in my prayers that you will find the help you need. Is there an aging services in your area. Most counties have them. Give them a call, they can tell you many things that could help. Let us know how you're doing. God bless and keep you.

 

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sooken answered...

hello, have been reading posts about chf. My husband, now 67 was diagnosed 7 years ago with hypertrophic cardiomyopathy, asbestosis in his lungs and copd. Has had hypertension for years along with thyroid removed. We were told 6 years ago he had one year to live. had repeated episodes of pnemonia, repeated hospital visits, spent a year on hospice a year a nursing home. All the while we stuck to our regimen of CO q 10, hawthorne, vit b, fish oil, potassium, niacinamide. He just now got the CHF. He also has severe sub aortic stenosis. He is back on hospice. Doctor says he has maybe under a year to live. This time around he is very sick and unable to do anything at all. I truly believe that these supplements is what has given him way beyond what any doctor wants to believe. They wanted to give him a defibrillator, a pacemaker, alcohol ablation, a 2nd heart cath, on and on. He has a "sudden death" syndrome associated with the hypertrophic cardiomyopathy. Doctors love to perform their tests. We have had a very good last 5 years. One cardiologist said she couldn't understand why we denied these treatments..( he has 30 percent lung function, any idiot knows you don't put that kind of person under stressful surgery unless you are prepared for a ventilator). There is definitely an "end stage" to the diseases that he has, but we were told that years ago. I asked that cardiologist why she wasn't interested in why he has gone on for so long when she said he would die in a year. They don't hear. Don't always take what they say as gospel. They don't treat the whole person. Keep smiling and do the best we can.

 

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An anonymous caregiver answered...

Doctors can only make educated guesses. My cousin was declared brain dead by medical tests after a motorcycle accident. He woke up 8 months later and could recall everything the doctor told my aunt in the room. He turned white and left the room. He is still alive today doing well.

I truely believe that herbs are better to use than meds. Switching to them and mixing them you have to be careful though. If you haven't heard about this look up "The Gerson Therapy". It is amazing to read some of the stories. There are a couple of documentaries on Netflix about this. There is even a medical facility that you can go to receive therapy. Truely a miracle.

As far a the heart attack symptoms, men typically have chest pains but that is not always true. It can be weakness, dizziness, cold sweats, nausea, short of breath. I know my grandfather passed out and had cold sweats. He had a heart attack. I've seen someone have a heart attack with elbow pain!!!

I truely wish the best for everyone on their journey bost good and bad. Educate yourself and do what is best for you!!!

 

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consider Hawthorn answered...

Sorry do not have time to respond fully atm but my dad who is 84 has had huge help from taking herbs & supplements including Co Q10 which was mentioned but especially Hawthorn herbal extract which I highly recommend people look into if they have not already. He was doing well since surgery then deteriorated on meds -having difficulty walking or using legs(peripheral nerve problems etc) & wanting to black out all the time - but now is walking at least a mile a day and has quality of life since stopping meds & sticking to herbs etc which we found to be working well. Heart surgeon happy & said to keep doing what he's doing but drs generally are peeved off he is not on their drugs & one wants to push him on ACE inhibitors despite his obvious huge recent improvement since stopping meds (& his low to normal BP). Hang in there - Don't just believe what you are told by Dr's. Eat as much raw living foods as possible & find right herb/supplement treatment for your condiiton---question & do your homework. Most people here seem to have the right idea. take care. --& look up Hawthorn ! (Prescribed by Drs in Germany apparently & there is cochrane review on it too)

 

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MS71 answered...

It was interesting reading all of your posts. My father has congestive heart failure, along with a mild form of muscular dystrophy (MD). He was diagnosed in the early 2000s, and was considered briefly for a heart transplant. However, when the doctors realized he has the MD, he was deemed ineligible because the meds can make the MD more active. He has successfully been living with the defib/pacemaker since 2001 (with several battery changes over time).

As an FYI on the potassium, I have had to rush my dad to the ER several times over the years when blood tests have revealed dangerously high levels. People usually think of low potassium as a problem, but high levels (approaching 6.0) on the scale during a blood test can be just as bad, if not worse. We were told it can send a person into immediate cardiac issues. My dad actually was told to reduce his intake of orange juice and some green vegetables to be sure his levels don't reach too high. I believe that the foods, combined with some of his meds, push the potassium levels too high.

 

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An anonymous caregiver answered...

My Mother was taken to the hospital by ambulance December 2008 with CHF. I had come home from work and found her disorientated and mumbling incoherently. I called 911 and when they arrived she thought it was 2002 and said she was at the hospital while sitting at our kitchen table.

They almost lost her in the ambulance on route to the hospital. They managed to stabilize and admit her. After many tests they advised us that she should get her affairs in order because there was nothing more they could do as the medications were no longer working. They had her sign a DNR.

We were all upset and had my sister fly in to come and say goodbye.

4 days later her medications started to work again and she shed 20 pounds of water! She started breathing unassisted and started to feel like herself again.

When she was discharged they told us that we would be lucky to have her for another year. That was almost 4 years ago.

Medication is very important and to take it as prescribed. Each person is different. If you are going to take herbs and supplements please talk to your doctor first. As MS71 said potassium can be dangerous depending on your levels are. My Mother has to have her potassium levels checked every month and they had to take her off one of her water pills because her potassium was extremely high at 6.3

I know my post is long but I wanted you to hear our story and know there is always hope.

(My Mom is 82)

 

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An anonymous caregiver answered...

I am curious if any of you have ever heard of EECP Therapy for CHF. Seems extremely promising.

 

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moley answered...

Kind of off subject but as someone who has CHF I suggest getting a second or third opinion. After Pneumonia weekened my heart at 45years I was told by a cardiologist I had "maybe 5 good years". Went to another doctor In Indiana heart center and they inserted an ICD and it made an imeatiate difference. That was 13 years ago, still getting around OK, good luck don't give up.

 

ag85 answered...

My father suffered from CHF for 10 years. Upon diagnosis the doctors said chances were slim of him surviving a year. I agree with someones post above that it is all a balancing act, and sticking to proper diet and medications. My dad had many stable years living with a pacemaker and defibrillator, and sticking to a proper diet and medication. In his later years his kidneys were very poor and had to be hospitalized a few times for edema in his feet, legs, and lungs. Unfortunately his final months his health declined quite progressively which doctors said it was the "end stage" and nothing else could have been done except try to keep him as comfortable as possible. My dad was hospitalized for almost a month before he passed, and he suffered from an arrhythmia which led to cardiac arrest and unfortunately his heart and body was too weak to respond with the defibrillator.
Every person is different, just stay positive and try not to stress so much because it is not good for the heart.

 

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An anonymous caregiver answered...

My mother had a heart attack in March of 2012 and had a stent in place. She was soon after diagnosed with CHF. Not even two months later, we rushed her to the ER, she could hardly talk and they treated her for fluid overload around her lungs/heart. She was given the BiPap machine which helped her and IV Lasix. She was good to go within two hours. Then two months after that, we were on vacation and it happened again, it was truly scary and I didn't think she'd make it, spent the next few days in the hospital. She spent every waking hour researching supplements and was quite good with taking them, she followed a few protocols another person above spoke about, Sinatra, Whittaker and even used some of Richard Schulze's products. I know that hawthorne and cayenne are supposed to be the best thing for your heart, especially if you take large doses consistently. Unfortunately, my mom lived a good year with CHF and eventually started feeling a different sort of breathlessness so my dad took her to the ER and she was having a stroke and they also discovered a pulmonary embolism. It was rather progressive from there (this was April 2013). Immediately after, her once skinny legs became gigantic with edema, she could hardly get from one side of the house to the other. She passed away in early June. Her last week was sad, she seemed mentally confused, breathless and she definitely suffered. It was horrible watching my mom and best friend die this way. She was only 63.

I wish all of you suffering from this disease the very best. I also pray for the caregivers, it's a scary thing to witness. I agree with one poster, you need to try to think as positive as you can and don't let negative words from doctor's get your head. It would take my mom a week to recover from the awful "abuse" she received from doctor's with each hospital visit. They like to play God. Only you can control your own health/body.

 

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An anonymous caregiver answered...

My mother was diagnosed with ESRD the 26th of Oct. After having what appeared to being a seizure I called 911. She went to ER they ran test and sent her home with a diagnoses of Muscle Spasms. I made a mistake of telling the doctor she was on Pain Management. They naturally jumped on that "she is on drugs and that's the problem" Well, the following Wednesday I took her to the ER again. She was admitted and this time diagnosed with 100% renal failure. I don't understand how these type things can be over looked. She already had kidney failure and had 36% function of 1 kidney. HOW could this drop so suddenly? She is/will be on Dialysis now for the rest of her life. Was also reading about heart failure. I myself have had my share of health issues over the past 3 years. First I have been dealing with one of those BAD HIP REPLACMENTS. It ate a hole in my leg and has taken 3 years to heal. However last year when I had the first hip taken out and a spacer put in I had to go for a stress test in March. I guess I passed it. I was amazed. I knew something was wrong but I had been dealing with this hip for so long I just wanted it fixed. In May I had my hip replaced with a spacer after getting cardiac clearance. In July I was going back in for another replacement and needed cardiac clearance again. This time I told my cardiologist something was wrong. They took me in for a look and decided it couldn't be fixed with stents, I needed a Quadruple Heart Bypass. HOW. I just got clearance in March after having a stress test done? You know your body better than ANY DOCTOR! If you feel something is wrong or you disagree with your doctor, SPEAK UP. My hip issue was misdiagnosed so many times by so many different doctors it was unreal. I was told it was a spider bite or a bed sore. After 2 half years I was finally told the truth. Oddly enough I was told the truth on the same day another doctor, a wound care/plastic surgeon was going to repair the baseball size hole. Had I allowed her to repair that hole I would have only gotten worse and probably lost my leg. Another doc said I didn't need antibiotics. So I changed. I did go get their records and come to find out the same day she told me I didn't need antibiotics she had results back from a biopsy that said I had pseudomonas. So if you feel bad tell them, tell them again if they don't listen, change, and if that doesn't work change again. sometimes you just gotta find the right doctor. I went through about 8 before I came to one who knew what he was doing. I am so sorry your mom wasn't treated right. That really is sad. My mom was in the hospital for 10 days and honestly 90% of those people need new jobs. They acted like they hated the one they had and took it out on the patients. Actually I experienced that with every hospital visit over the past 3 years. 67 days and only a few were good and I was treated like someone. .

 

fwandsw answered...

My mother in law lives with me and is 94 and has chf , she had a quad heart bypass at 85 and a pace maker put in a year ago, and was told her valves are leaking, just in this last week she is gaining weight and swollen ankles and below her tummy is swollen, her mind is all there and basically told me she is giving up and does not want to go to the hospital. She seems more depressed and I left for work this morning she was crying, I did talk to her doctor today and he told me to have her double up on her water pill in the morning and basically that was it and to call him back on Thursday. This breaks my heart as of family My husband works 40 hrs a week and her other two sons are retired and enjoying their life....sorry had to vent..

 

bobsogs answered...

Went to ER with breathing difficulty 6 months ago. I was diagnosed with end stage CHF with an EF of 15%. The doctor wanted to put me on the Heart Transplant list. Since then I have been treated with Coreg and Lasix and I have been on a reduced sodium diet. Had an Echo done a couple of days ago and my EF has increased to 45%. Also had another breathing test and my lung capacity has doubled. I feel almost normal now and can go about all daily activities including hiking in the Mountains! (Although I do not over do it). So if any of you have been diagnosed with very low EF, there is hope. I am living proof.

 

 
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