heartfailure

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    Bad birthday #Birthday #Depression #Schizophrenia #heartfailure #Bipolar

    Today is my 39th birthday I didn't get one present one candle my kids haven't and won't call. I live 4 hours away from any family. I am just so heart broken and its also graduation from high school for my oldest which I cannot attend due to COVID19 and being 4 hours away #Depression #Schizophrenia #Bipolar

    Question

    Kind hope or realistic optimism?

    I’m wondering how much of the hope doctors give their patients is just kindness out of pity or if there is truth in their kind words and we’re just too overwhelmed and afraid to believe it?

    Last week I was hospitalized for a week, I thought I had pneumonia. I didn’t but they found Systolic Heart Failure (with no blockages or high cholesterol so we’re treating with meds and there’s high hope) and cancer. It was a horribly traumatic hospital stay, they nearly killed me from dehydration and it was like a parade of specialists and doctors trying to out “doom and gloom” or completely contradict each other and themselves. It really messed with my ptsd and induced numerous panic attacks while I was there.

    Today I had my first official oncology appointment where I learned it’s stage 4 bile duct liver cancer that has spread to my abdominal area and lungs. I’m 39, most people with this cancer are over 65 and so survival is pretty grim. I also have asthma, type 2 diabetes, Sjögren’s syndrome, psoriatic arthritis and fibromyalgia along with the newly diagnosed heart failure. My oncologist (who is the colleague/boss of the horrible oncologist who made me cry and told me I was dying before any results were back. She was really upity and had an overall bad vibe. I made them notate in my chart that she was not to touch me or my case which is how I got her boss, who is no nonsense but super nice with such a good vibe).

    Today I was told I’ll have a port surgically implanted within the next 2 weeks. My oncologist is super positive and kept assuring me that I’m not dying, that I’m young and new clinical trials are happening all the time. She seemed really confident that while yes it’s serious and yes I have a lot going on, I can still fight this. But I did see a sadness in her eyes when she had to tell me the diagnosis. It makes me wonder if the hope she’s giving me is realistic or if she’s just being kind? Positivity is important and I understand that but so is planning and preparing for the end because I effed up and googled and now I feel like what if she was just being kind? Or what if my anxiety is taking over and there really isn’t a reason to immediately think death is imminent?
    #Cancer #LiverCancer #BileDuctCancer #Doctors #heartfailure #SystolicHeartFailure #Diabetes #Fibromyalgia #sjogrens #CPTSD #Depression #Anxiety #chronicallyillandstrong #Hope

    Post

    Scared of being in a relationship cause of a heart condition

    First off, ever since I had my heart surgery when I was 16 I’ve been scared getting into a relationship because I really don’t know when my heart is going to stop. On top of that I have Klinefelter syndrome which I cannot father a child. Also I’m afraid that I might get cheated on and won’t accept me because of my health conditions.
    #aaoca #Relationships #ChronicIllness #CHD #chdwarriors #KlinefelterSyndrome #HeartDefect #CongestiveHeartFailure #chf #heartfailure