Oct 18
Cassie24 , Posted on SUPPORT NETWORK Blog

New Member

Hello to all surviors and or caregivers.  

My name is Cassandra.  I have been looking for a Support group and decided to try this one as I do have some good days and some bad days.  

My journey started in November 2015.  I was sitting at my work desk working and my fingers was so swollen that I could not bend them and was painful.  I immediately called my PCP and informed him and he asked that I come right in.  He examine me and asked that I go directly to my Cardiologist.  I could never figure out why he would send me to a Cardiologist but as I was examined and had an Echocardiogram, the Cardiologist provided me with results of Severe Cardiomyopathy and Cardiac Heart Failure with an Ejection Fraction of 30%.  He had a nurse to come to my house to apply an external defiberllator that I had to wear for 3 months.  This was so hard to adjust to.  I did not understand what had just happened.  So I scheduled another appointment with another Cardiologist for a second opinion.  I was given the same results, however the Nurse Practioner whom saw me started to panic and that scared me.  She stated she didn't know how I walked in there with an EF so low.  I was then scheduled to see a Surgeon that evaluate me as well.  He was great in explaining what was going on.  He gave me the plan that had no option if I wanted to live.  I had a LVAD implanted on March 1, 2016.  This was the hardest pain I had to experience as the recovery was hard.  My chest stayed sore for a couple of months and my incision is still sensitive now.  I am having difficulty with staying on a healthy diet.  I am also having depression and memory loss.  I try to do the things I use to do, but many complications set in like short of breath, fatigue, and dizziness.  I was informed by my Cardiologist that I had to go out on disability due to I could not work anymore.  Wow, I said.  Are you sure?  Yes, he replied, but now I really was lost as I worked from home and sat at a desk all day.  He counted it all out.  Confusion sat in and still have not been understood.  So I just asked him again....Why can I not work?  Answer very plainly put.  "You have Heart Failure, Stage C, and 20% EF.  I still did'nt undestand because the research showed many with my problem contiued to work.  Now I am trying to figure out what I am to do.  I am 50 years young and was in the middle of my career.  It is all gone.  I have no one who really look at my situation seriously.  Now that I am up moving around and trying to do things, many think I am all well.  SO I decided not to share with family and friends of my bad days, but many days make me want to go to hospital.  I just need great support and information.  I am usually the person who support everyone else and encourage them, but now I need it all.  

Looking forward to this support team.
  • AHAASAKatie
    Thank you so much for sharing your story! We are here for you and have an active Heart Failure community. I encourage you to read through the posts in this section http://supportnetwork.heart.org/heart-failure and begin conversation and building relationships! Best Katie
  • leesampson
    Your not alone a lot of us feel.the same exact way. I have my good and my bad days. Sometimes the family just don't understand but their thoughts are well intended. You are not alone there are a lot of us here. I had a massive heart attack just over a month ago. I ended up with three stents and it has totally devastated my life but just talking to others like you have helped me a lot. Stay strong and talk to others in the same situation as you. We care and we understand.
  • mingo1
    Hi Katie...I had a heart attack in 1993 and a defibrillator implant 3 months later. I soon found out that my EF was 28% and it has been that way since that date. At first I was filled with two thoughts...one good and one bad. Good that I survived a widow maker and bad thoughts of how I could go on with life. But, I have done just about everything in life and did continue to work until I was 63 after my 5th and 7th hip replacement. Those hips were just a couple of many other surgeries I had since the attack. I make it through the surgeries and recoveries with flying colors. I do have a lot of premature ventricular contractions that bug me, but do not worry about them. They sort of remind me to stay on a pretty good diet and especially to stay hydrated. You must remember that our hearts are very special parts of our body that can do really special things. Depression can be tough, but the main fact is that we still have a wonderful second chance and must take advantage of all the doctors and medicine and special devices that are available to us. Hang in there. Take it from an old guy, things will get better and better and better.
  • jhens111
    hi, listen, i had a severe MI on Oct 10, 2016 and my EF was 25 on the Echo...but the EF measured 35 + during catheterization for the stent...since my MI ive had another echo done and my EF has improved to 45%..healing is, snd can take place, with meds, and faith Cassie...dont give up...this support group is an awesome place to bring ur thoughts and ask for advice...God bless you
  • Lomapa
    The depression and short term memory issues are the hardest part for me. Even finding out how common it is for heart attack survivors to have these symptoms doesn't help on an individual basis. I haven't been able to find a in person support group in my area. I think we all could benefit from having access to that type of support. I wish you well.
  • ActiveLarry
    Cassie, read my Story of Survival. Get your own blood pressure monitor, so you can check it. If your BP is too low, you may need to reduce the amount slightly. Learn what amount of activity you can handle that does not exhaust you. Exhaustion means your heart is extra tired, and it takes more time to recover, days sometimes. So know your own limits. Do nothing additional until what you are doing, has started to get a little easier. That is a sign of improvement. You can add to what you can do in very small doable increments. The key to getting better is to wait on the slight increment to be easier, maybe a week or two, then do just a little more. I hope you reply to me, so I will want to share more of my recovery tips with you. Your story helps inspire me to finish the book I have been encouraged to write, that details all I learned and implemented in my recovery. I dug into research. But the key to more energy and recovery is extremely beneficial foods, and that slow but steady incremental exercise. I went from only walking a very slow 20 feet or so, to minutes, and more, then finally worth the bother of using a treadmill, and ... see my story. I hope it inspires you to reclaim your life. Larry
  • Cassie24
    Larry, Thanks so much for the inspiration. I was just lost and did not know where to start. Awesome you are writing a book. I know it will provide great words of wisdom. Congrats
  • shirleymom
    Cassandra, things may be hard now, but I promise, they will get better. In 2004 I had a massive heart attack and 3 emergency stents put in. My husband told me I died twice that day. I had another heart attack the following week (I don't remember this one), and had open heart surgery with 6 bypasses six weeks later. Yes, six bypasses. I was bewildered by all the new heart lingo. My husband helped a lot. I was very forgetful, although I was already suffering from absent-mindedness. My husband died from Agent Orange in 2012 and I was in a DEEP depression for 2 years. I am now taking an antidepressant which helps tremendously. THEN, I find out something no one explained to me: the diagnosis of heart failure. With the help of my daughters, I found information on the internet and a neighbor who suffers from heart failure also. I believe your doctors and mine could have done a better job at explaining things much better. I now have learned my physical limits (Naps are wonderful now!), and I don't worry so much. Education is the key. Advocate for yourself. Ask lots of questions. My personal physician communicates with me via email a lot and it is a great help. I ask as many questions as I want. I email my cardiologist also. Some days are just one foot in front of the other, but I do have days filled with joy now. A few years ago, I didn't think I would experience joy again. It will happen!
  • Cassie24
    Shirley, OMG You are truly a blessing. Your story is so amazing. WOW. I needed to hear that. I am still shaking my head ...6 unbelievable. Faith is powerful. Standing in this recover with you.
  • Cassie24
    Lomapa Thanks so much so true
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