Heart Failure Support Group

I am VERY sorry to hear that you are going through so much. I really am so new to this, I am not sure I can offer any insight to this specific illness. I am still clueless. I can, however, understand some of the prognosis. Let me explain a little.

My mother was given 6 months to live (COPD)in January1997, and was placed on Oxygen 24/7.

3 months in, she got BETTER. 8 months later, she went back to work driving a school bus WITHOUT oxygen! She worked for almost 3 more years. She took very ill in 07' For nine months, she fought. More often than not, she thought I was HER Mom. She passed away in Nov. TEN YEARS AFTER she was told her life was nearly over. Clearly, someone/something bigger had different plans for her than the Dr's knew.

I don't know your faith. I do believe that you need to discuss this with Lief, though. I had to check MY beliefs at the door, to comfort my "childlike" mother, and focus on HER beliefs, her fears, and her thoughts. I had to tell my mother EVERYDAY that she was on borrowed time, and had to experience the surprise and anguish that comes with hearing it the first time over and over and over. She would act like she just learned and forget it moments later. I KNOW the pain of telling someone, or having them overhear it.

I just want yuh to remember. Life is prescious. It's the time we have that is the time to live. Let us not kill ourselves with this anguish, when we need to be living. If it is to be that Lief proves his Dr's wrong, you will have anguished for naught. Live the time you have because tomorrow could be everyone's last tomorrow. Any of us. Easier said than done, I know. Just a reminder though:)

Thank you so much for your message. I am so happy for you, that your mother went against all odds and lived for another ten years. I believe in destiny, but I'm starting to feel that destiny hates me. My father had COPD and was given six months to live and died three months after the diagnosis. My brother got pancreatic cancer at thirty and was diagnosed with one year to live; he died in six months. Even my best friend who I had known since childhood got a bad disease, got a prognosis of less than six months and died a year and a half later. We got excited when six months had gone by and she was still feeling great, but it went downhill from there.
Basically, I'm afraid to get my hopes up. And I'm not feeling any more hopeful at all. It's not just that the doctors are telling me he's sick; he is getting weaker. I can see it. I feel like he's very very slightly slipping away with the passing of each day and that I'm not going to be able to hold him for much longer.
I understand that life is precious. I need to stop being so pessimistic, but -- it's hard.
My best to you all,
Becca

You need to look into local resources. Ask your doctor's office. Ask the hospital. You need some professional help in all of this. Even a good therapist might help. Unfortunately, I have not dealt with losing a child. And I intend to beat my heart problems. I intend to be around for a long time; however, mine are different than your son. And I have amazed my doctors.

All you can do is take each day one at a time. Rely on your Faith and the love for your son.
I'm so sorry this is happening.
They gave me 3 years and so far I haved ten.
Only God knows and he's not talking.

So sorry to hear your son is declining. I hope you can find some support to help you through. I realize you do not have close friends or relatives around.
It sounds like your son hasn't been informed of his condition. I realize he's still a teenager, but maybe he needs to know a little more about what's going on so he can cope better. You will end up trying to cope all by yourself. You both need each other and if both of you can be honest about his health and your emotions you can fully be there for each other.
I continue to think of you

Thanks for your replies. Today was a really bad day, he collapsed after sports. We're thinking of taking him out of sports, though this is really going to hurt him because he was picked for soccer captain this year (before he was diagnosed).
We've been talking openly ever since the diagnosis. It was just that they gave him 2 years when he was diagnosed and now have shortened it to 1. I keep on reminding him that so many people in the world have beaten the odds and lived for many years more. But it makes no difference.
I should rephrase it -- we WERE talking openly after the diagnosis. After they said he had only a year to live, he's hiding everything from me. He doesn't like to talk to me anymore and stays in his room all night. On the weekends he never comes out of his room and refuses to eat anything.
I've set up appointments with professional therapists . We'll see what happens, but I'm losing faith.

I'm so sorry to hear about what you are going thru and barely know what to say. I do know that attitude and outlook make a huge difference, so I hope that your family gets what you need thru the therapy that you have so wisely set up. I will be thinking of you and your son and keeping you in my prayers. gentle hugs, noreen

You are in my thoughts and prayers. I'm so sorry for this to have happened and that your son was in tears. I'm actually speechless right now.