Mere06
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Mere06, November 15,  2020  3:19pm EST
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Heart failure EF10%

I'm 38 yrs old,  I'm a mom a 15 year old with congestive heart failure. I got congestive heart failure after giving birth to my daughter in 2005 my heart has declined over the years. So I've been fighting this heart disease for 15 years as it has decline. I've had a heart attack on Mother's Day and a  stroke in December  in 2019. I've had to slow down with working and stop working  due to my heart disease declining.  Since I get disability  Medicaid is counting my disability as income so I definitely cannot make any additional income that I was told by my case worker that's handling my Medicaid and food assistance. I can't afford to lose my benefits so I can't work. My disability is just enough to pay my rent, not my bills and to take care of my daughter and I. I don't know how they expect for me to survive and take care of my household and the bills I have .  If I work they will take our Medicaid. My daughter depends on me and needs me. They are putting me in poverty  to the point of a chance of losing my home  and my bills being disconnected and stopped  or cut off . I'm all I got and I'm struggling like you wouldn't believe. It's a scary place to be. Makes me worry a lot. The system is not fair to me and to eveyone else. I've had a defibrillator put in and eventually ended up with a pacemaker. Going through this journey with my heart I take pictures of everything that I'm going through dealing with my heart disease. I'm fighting this heart disease every single day and thanking God every time I'm able to wake up and see another day and to see my daughter. I'm not going to lose my life due to this heart disease. I'M A FIGHTER!! I've been shocked by my pacemaker 6 time at once and then two times at once in a couple of months later. I wouldn't wish it on anyone because it hurts like you wouldn't believe. As my heart declined I eventually had to end up getting a an LVAD January 2020 to help my heart pump blood to the rest of my organs.  I almost lost my life in January. They had to resuscitate me that I ended up on life support because I couldn't breathe on my own after getting the LVAD. To keep me from having another heart attack or stroke they had to put me on blood thinners coumadin warfarin so I wouldn't get another blood clot. I'm very blessed more than you know. After all of these episodes I've had I had to go to rehab Rehabilitation  hospital to learn how to walk all over again, that pertaining to me learning how to control my body trunk to be able to hold myself up, learn how to write and speak without slurring my words, having a hard time getting my words out and a hard time thinking of what I'm going to say to I had to have speech therapy. I feel better now that I have the LVAD I'm not a 100% until I get my heart. I still have heart failure . I'm able to do some things more than I was able to do after I got the LVAD . I'm adjusting to the LVAD and it saved my life. I'm in need of a heart transplant because of my heart getting weaker. 

4 Replies
  • AHAASAKatie
    AHAASAKatie, November 16,  2020  9:13am EST

    Good morning, Thank you so much for sharing your heart story with us. You are right, you are a FIGHTER and doing such a good job of it. For the financial side of your fight,  I wanted to suggest that you check out the Patient Advocate Foundation (PAF) at www.patientadvocate.org  The PAF is a national non-profit organization that serves as an active liaison between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters relative to their diagnosis through case managers, doctors and attorneys. PAF seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability. 

    Another option is to contact the Patient Advocacy Network (PAN) at www.panfoundation.org  for assistance. 

    United Way’s 211 program is a free, confidential referral and information helpline and website that connects people of all ages and from all communities to the essential health and human services they need, 24 hours a day, seven days a week. You can get more information at www.211.org 

    Please know that we are here to listen and support you. 

    Best Katie
     

  • JamesPL
    JamesPL, November 21,  2020  9:21am EST

    I agree wholeheartedly, you are a fighter! keep on fighting! One of the best ways to do that is to do the things that are important to strengthening your heart such as cardiac rehab and continued exercise whatever that might be. It could be as simple as daily walks. Talk to your doctor about cardiac rehab as this is also beneficial to your mental well being. This will help keep that fighting spirit active! When I was going through my own open heart surgery experience, I was warned of potential depression. I insisted that I wasn't going to let that happen and was motivated to getting back to being active. Although it was a little slower than I would have liked, I persisted until I felt myself returning to my old physical self. Keep up the fighting spirit!

    Wishing you all the best!

    Jim

  • jerzeycate
    jerzeycate, November 28,  2020  9:34am EST
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    Mere...

    I am touched by your courage.
    You Are A Fighter.
    You are a Survivor.
    While CHF persists.
    Failure is not an option.
     
    Remember...
    Failure is when you try to make believe you are someone other than who you are. 
    Failure is when you come to believe there aren't any viable alternatives in life..
    Failure is when you don't share your experience with others because you're convinced it's only you who is suffering.
    That somehow all of this madness has happened because something's wrong with you. 
    Failure is feeling you are incapable of finding satisfaction and love.
    You are as far from failure as one can get.
     
    Reading your story I realize that, while circumstances may differ, your words...your sorrows...Your fears are also mine.
     
    It's very special to be with people who have the courage to step forth and expose their pain.
    Courage in the face of perceived failure, is a great triumph of human spirit.
    The power of a supportive, caring community is that it transforms "I" into "We"!
    It ' this "we-dentity" that gives us the courage to stand up and face our strongest pain, our greatest fears.
    The courageous sharing of any one member of our community, leads to the healing of others who are present.
     
    When we come together  "failure" is transformed into triumph of the human spirit.
    Thank you for taking the time to share your courage and your pain...
    I will have you in my thoughts and prayers.
     

    Its a Great Day to be Alive...

    Cathy

  • Lfernandes
    Lfernandes, December 3,  2020  1:33pm EST

    Much love and respect to you! Keep Fighting! <3

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