Heart Failure at 19

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Hello,

I was diagnosed as having Osteosarcoma nearly five years ago. The cancer had spread and moved into my lungs and heart. Because of the combination of the location of the tumour and the treatment, this left me with heart failure. I'm not on the list for a transplant because I'm not stable enough to undergo one. I'm absolutely devastated. I'm 19 years old and my entire life is going to be snatched away from me. I was born with ToF and HLHS so I'm no stranger to heart defects. I've had a heart attack previously when a tumour blocked an artery. I currently still have cancer but the treatment has been stopped because it's no longer in effect. I'm so scared about all of the complications with my heart. I don't want to die.

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11 Replies

  • Posted

    Hi, your post hasn't as yet been answered and I can see why, it's really hard to find the words to reply to you.

    I'm heartbroken that you have to deal with this situation and I cannot think of anything I can say that will help, we are here though and if nothing else I will pray for you and listen to your thoughts.

    If you improve even slightly is there no chance you can go on the transplant list.

    Virtual hugs

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  • Posted

    I am so, so sorry, there are no words that describe how sad I feel for you. What a dreadful situation for you and your family. I am sending you all my love and wish I could hug you. Bless you. Glynis xx
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  • Posted

    It's so difficult to find the words to answer your post as one can only imagine how you feel. Life seems so unfair at times and to be faced with this at your age seems so wrong. The only thing I can say is don't lose hope sweetheart, and as the previous writer said if there is any way you can improve enough to go on the transplant list? focus on that. I know of a lady who was given no hope. They stopped her heart, used a false heart whilst she was in an induced coma and kept her alive long enough for a transplant. She is now well. Is there the slightest chance?Fairy steps. Is there anyone you could talk too? Write your feelings down......don't bottle them up.

    Nothing I can say will make a difference to your health but I can send you much love and prayers.

    Stay positive and try and find something beautiful each day to focus on. Sending Hugs.

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  • Posted

    Hi,

    I am sorry to hear about your situation.

    I am 23 and also have a heart defect called Shones Complex (similar to HLHS but Shones is rare) I am in heart failure and am trying to get on the transplant list too but cant yet. I have had 12 heart surgeries so far.

    I presume your cardiologists have explained that you can be in heart failure for many years? I appriciate there are added complications due to your cancer, but try not to give up hope yet. There is always hope x

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    • Posted

      Thought I would comment on your post and give a bit of posititivity, my mother in law in her early 40 s she was also diagnosed with her failure due to a leaky heart valve which could not be repaired because she has chronic asthma, she's now 89 years old and has recently been told its worse, she still does her own housework and washing and other than being on a panfull of meds every day she actually seems fine, hang in there both of you, there are major breakthroughs every day.

      40 years ago you wouldn't survive these horrendous diseases, God bless you both

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    • Posted

      That is wonderful!

      I was diagnosed at 3 days old. I have 2 mechanical valves, a leaky valve and was born with 5 holes in my heart (the holes are all closed now) i have had 12 surgeries so far and awaiting more. The world is advancing more each day so there is hope for us all.

      I hope your mother in law is well x

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    • Posted

      Just been talking to her, she has done her usual trick, emptied the wardrobe in her back bedroom and sweetly asked will her dear son go up and put it back because she is too knackered, hope I'm allowed to say that.

      She knows he will but not till tomoz, she has ocd and want part with anything but likes to see what she has LOL

      You have also had lots to contend with but sound positive, not easy is it.

      I hope that people put lots of money into BHF its a good cause and does a lot to help.

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  • Posted

    Big, warm hugs...19, so very young to have experienced so much sadness. We speak of death but facing death is sobering.

    Are you in hospice care? What faith are you? I am a Christ follower. This is where I find my comfort.

    If I were facing death, I would want to write a letter to each person I love telling how much they mean to me, thanking them for standing by my bed. The one to my parents would be the modt difficult...I would never want them to feel responsible. I would ponder my possessions and match them with those who moved me. And I would write thank you notes to all of the medical people who cared for me to thank them for all they did for me. And I would have a party with all of the people I love, with all of my favorite dishes. I would try to spread kindess to others.

    I have always been the person in the bed...then my dad was diagnosed with end stage colon cancer...and I spent hours at his bed side...I learned that it is so much easier to lay in the bed than it is to stand at the side of the bed yearning to do something, anything to help.

    Perhaps you will consider this the next time anyone asks you if they can do anything for you...by giving them a task, you are showing your love to them. Take the time to say goodbye, to say thank you to everyone you hold close to your heart.

    Some will hang back because they do not want to intrude...you can consider extending an invitation.

    Don't be ashamed to ask for what you want...I was thankful that my dad gave me a job for his funeral...that job made me feel that I had helped him...that he made his wishes known before he died meant that no one had to second guess his desires...it made the grieving process easier.

    I am here for you...please tell me what you need...your needs are important to me

    hugs

    judith

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  • Posted

    Im so sorry you are going through this. Any uneasyness from health conditions arent fun. I just wanted to let you know of a place that was mentiobed in a document series that i watched its called the truth about cancer. Please watch it. There is also an alternative cancer therapy with testimonials that kight bring you hope. Its called the hoxsey biomedical clinic please look them up. I wish you the best.

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