Sep 1
abadandpatricia , Posted on SUPPORT NETWORK Blog

Heart attack and Heart failure at 52

Good morning.  I am new to this.  My husband had a wdow maker heart attack August of 2016.  He is not doing well with it in my opinion. When he had his heart attack, he had 3 of the main arteries to the heart occluded at 100 percent.  The doctors did not think he would even make it through the night.  He did and after a week of being sedated or what they called it an induced coma, he was awoke and observed and eventually sent to the cardiac floor in the hospital.  Within a day of being there he went into defib. They then moved him back to ICU and then on to a hospital that had more to offer.  His ejection fraction was 15 percent at this point.  After the transfer, he went through all the testing for a heart trasplant, he was given a pacemaker and defibulator.  And then suddenly his ejection fraction improved to 40 percent.  We thought it was amazing.  So no transplant needed. Within the last year of being home, he has already had one restenosis and he has chronic angina and very little energy and tired constantly.  The doctors are trying different things for the fatigue and he is also in cardiac rehab again with no improvement.  His ejection fraction now is actually lower, at 30-35 perscent.  He is angry with his life and seeking help for that as well. He has had his lasics increased because of severe swelling in his body.  We are baffled and the doctors seem to be too.  They act as if he should be running marathons.  Is there anyone with opinions that may help us understand?
  • smarney
    Patricia - while my husband has a different story (hypertension, LVH, AVR, heart block, pacemaker) your comment that the doctors act as if your husband should be running marathons certainly resonates with me. All through the visits and surgeries in 2014, all we heard was how young and healthy my husband was and how quickly he would be feeling better than ever and able to do even more. I know that doctors may have to believe this to feel positive about their patients (I'm a nurse practitioner and have used those tactics myself) but it really is unfair and unkind. My husband has commented multiple times that he feels as if he has let everyone down because he has had so many problems. One thing I have learned over the past two years is that heart disease (whatever type) is an illness and no matter how much we want it to be a short term fixable problem, it is really something that will have to be managed the rest of his life. I have been surprised how differently heart patients are treated from patients with other life threatening illnesses. I have come to hate the jocular, cheerleading attitude because it leaves us alone, feeling as if we should be doing something differently. This is a learning process. You guys have just started it and will come to understand the balancing act between what he (and you) can and can't do. It seems as if something happens, then we adjust, and then something else happens and we adjust again. My husband is doing the best he can and has a very serious illness. He will never run marathons again. Know you are not alone - there are many people out here trying to figure things out.
  • jgoodma1
    abadandpatricia, I'm sorry that your husband is going through this. My condition has some similarities to what you described about your husband's, and I'll just tell you what I have done that has resulted in me feeling pretty good. I did not have 3 blockages, but I did have a 100% blockage of my LAD (Widowmaker) and I happened to be in rural Alabama when it happened, so it was 21 hours after the heart attack started, before I got into a cath lab. This was back in early April of 2016. I had significant damage to my heart and my EF was 20%-25%. Learning that I now had heart failure, I was suicidal the first couple of days in the ICU and was on my smart phone researching ways I could painlessly kill myself if it looked like I was going to end up on a ventilator. But then I started reading encouraging articles about how one could manage heart failure and have a decent life. That changed my outlook and I started looking into how I could improve my overall health and possibly delay the onset of the symptoms of chronic heart failure. Here is what I have done: 1. I have adopted very low fat, vegan-type diet, that I adhere to 99% of the time. I am following the Dean Ornish / Caldwell Esselstyn recommendations. I'm excuses. I'd sure like to have a burger every now and then, but I don't......because I want to stay alive. The results of adhering to this diet has been pretty remarkable. In 4.75 months, I have lost 45 lbs. I am 62 years old, 5'-9" and at the time of my heart attack I weighed 230 lbs. I now weigh 185. The weight fell off me with no effort by being on this diet. I also am not hungry on this diet. I now cook almost everything from scratch; almost no processed foods. When I need a sweet fix, I make my own no-fat yogurt and fruit smoothies, which are delicious and healthy. I eat a lot of fruit. I am on 20 mg of Lipitor and in combination with my diet, my cholesterol has dropped from 180 combined, 145 LDL, 40 HDL to a TOTAL of 66, with LDL at 38 and HDL at 28. The HDL number is low, but the LDL number is so low that you don't need a high HDL. This is common with a vegan diet. My triglycerides are at 80. 2. I went through 30 sessions of cardiac rehab, and have now moved on to a cardiac maintenance program at the wellness center at my hospital 3 days per week. 3. I am getting 7-8 hours of sleep per night, whereas before my heart attack, I was getting 5-6 hours. I also got a 30 degree foam wedge pillow which props me up in bed and has helped me sleep much better than before. It has also reduced my snoring and sleep apnea. 4. I take my meds on schedule and every day. My doctors have been tweaking my meds to deal with my low blood pressure (typically in the 85-90 / 50-60 range), that developed after my heart attack. 5. I am having a quarterly B-type Natriuretic Peptide (BNP) Blood Test, which helps identify a change in my heart failure condition. This test is inexpensive, and can act like a canary in a coal mine to warn of the worsening (and also identify improvement) of heart failure. During the first 3 months, I physically felt up and down; but I stuck to this plan. I had a lot of trouble with my first blood thinner, Brilinta, with constant shortness of breath (a known side effect of Brilinta). I told my cardiologist I could deal with it, because the Brilinta was supposed to be the best of the bunch. But after 3 months, he wanted to increase the dosage of my Coreg, and he could not do that with the breathing difficulties I was having, so he switched me to Effient. The difference in how I felt was huge....after just 1 day of being off the Brilinta. Through that experience and some others, I have learned to speak up when I don't feel good and my cardiac team will respond and try new options. It's a team effort and the patient is part of the team, and it is important for the patient or the patient's caregiver to be engaged and informed as much as possible. Ask questions....and if you don't get a satisfactory answer to a question or you get an answer you don't understand, don't let them off the hook. Make your medical team explain your condition and options so you understand. My EF has increased from 20%-25% up to a constant 35%. I'm now on the threshold of possibly not needing an ICD at this time. In October, I'll have MUGA scan that will definitively determine my EF, and if it has increased to 40%, I'll avoid the ICD. If not, I'll be getting one soon thereafter. Everyone's situation is different. The list above are the things that have worked for me so far. I have gone from Stage 3 heart failure back up to Stage 2, and I am feeling pretty good. There are some things I can't do now that I could before the heart attack, but not that many. I do have days when I am more tired than others......but not that many. I'm grateful to be alive, and optimistic that I can keep the advance of heart failure in check for some years to come. I hope some of these things might work for your husband too. Best of luck to you.
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