Oct 18
Cassie24
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.
  • Cassie24
    Cassie24,
    Thanks Mingo1. What a blessing you are.
  • Cassie24
    Cassie24,
    jhens111 Thanks so much. I definitely need this support group. However, I do have faith, but it evens get weak sometimes. Praying for us all
  • msheart
    msheart,
    your story sounds a lot like mine. very similar. one doctor told me when i first got diagnosed "listen to your body." now matter what people think or say if you feel tired stop sit down or lay down. i also am 50 yrs young and my percentage they say is 10%. i was angry at god for a while i did not understand, smh. i knew people who drank, smoked, never went to church and they are healthy as an oxen. it did not seem fair..that's when a voice said why not you? rain falls on the just as well as the unjust. god said he would never give us more than we can bare. if he said it he has to do it, he does not lie. ive been dealing with this disease for 10 yrs and my doctors still do not understand how i am still here. see they say individuals that have our illness life expectancy is 5-6 yrs. i have bad days and good days. in and out hospitals more thank i care to remember.but i am here praise god. you stay strong and remember listen to your body. okay god bless.
  • Cassie24
    Cassie24,
    msheart thanks so much for the message you have an awesome story. I am glad you are listening to your body. You are correct, some days are good and some are not so good. I am praying for you and all, we will support and pray together.
  • tcbbarb1
    tcbbarb1,
    Hi Cassandra and ms heart......I too have cardiomyopathy and CHF as well, I was diagnosed with an ejection fraction of 13 percent. My cardio could not understand how I was still here, too. I also have inducible ventricular tachycardia nad had a ICD implanted into my chest. All this was in 1999. yes 1999. and I am still here...infact I am much better than I was back then. My ejection fraction is 40 percent now. I just did what the dr said and took my medication faithfullly and trusted in out lord and savior. and I did not dwell on my condition and did not say poor poor pitiful me.......I just kept going and doing things little by little....day by day. I also had a twin sister that passed away in 2000 from this......I still have days when all I want to do is sleep but I also have good days too. So all I can say to you is keep fighting and do everythig the dr's say to do and little by little you should improve........God bless you as He has blessed me !!
  • Cassie24
    Cassie24,
    tcbbarb1 thanks so much. you have given me much hope. I guess it all depends on your faith and I have plenty of that. Some days I believe I might be doing too much, but I don't really feel anything. God Bless you and I am sorry for the loss of your twin.
dark overlay when lightbox active
dark overlay when lightbox active
dark overlay when lightbox active
dark overlay when lightbox active