uberokeer
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uberokeer, September 25,  2019  4:02pm EST

severe congestive heart failure symptoms

first, a little backstory. I'm currently an 18 y/o male, whose had type 1 diabetes for 8 years. anyway, about 2 months ago i saw my pcp and complained of a fast resting heart rate, usually around 120-130, he referred me to a cardiologist who then scheduled a holter monitor and echocardiogram. the holter monitor revealed i had sinus tachy about 70 percent of the day, and the echo revealed an EF of 45 percent. now that isnt necessarily a bad ef, its just mildly reduced. however, the echo also showed a left ventricular global longitude strain(gls) of -15% which indicates a mild shortening of the left ventricular muscles, which was enough for my cardiologist to diagnose me with cardiomyopathy, and tell me i was in congestive heart failure. he put me on metaprolol 25mg and referred me to an advanced heart failure and transplant specialist. as you can imagine this is very depressing news to hear as an 18 year old who use to have his entire life ahead of him. my symptoms include shortness of breath during rest, and nearly not being able to breath during activity, heart palpitations whenever not resting, dizziness and the feeling of fainting whenever standing up, even when done slowly. my last bp was 94/54, my heart rate now usually floats around in the 90s when resting and makes me feel incredibly tired, however the minute i try and get up or even change positions, my heart rate jumps up into the 120s and i feel like I'm going to have a heart attack. i get random left sided chest pains that feel like deep dull aches right over my left ventricle as well as burning pains under my left shoulder blade on my back. this occurs most often with the slightest physical activity, however it still occurs often during rest. i see my advanced heart failure specialist in 2 days and I'm hoping to get some more answers then. I'm just curious as my symptoms seem to be indicative of stage 3 or 4 congestive heart failure, however my ejection fraction and gls are not, and my echo showed everything else completely normal besides very mild triscupid valve regurgitation. if anyone else has had similar problems as this, i would greatly appreciate hearing more about it, thank you all.

3 Replies
  • JamesPL
    JamesPL, September 25,  2019  8:45pm EST

    I would urge you not to try and self diagnose. Follow the direction and treatment of your cardiologist and heart failure specialist. Regarding treatment, remember that in this high tech world we live in, treatment for heart issues are excellent and always improving.There are always break throughs and we could very well have treatments in a few years that are currently unavailable. My cardiologist has told me that the way medications are going, some future open heart surgeries may become obsolete. 

    I know that with what you are  experiencing, it can be difficult to remain calm but you really need to get a clearer picture from your doctor help give you some peace of mind. 

    I wish you all the best in your treatment and recovery!

    Jim

  • amoeba
    amoeba, September 28,  2019  7:48am EST

    "Regarding treatment, remember that in this high tech world we live in, treatment for heart issues are excellent and always improving.There are always break throughs and we could very well have treatments in a few years that are currently unavailable." 

    This cannot be emphasized enough as we head into the 2020s. The killer app seems to be stem cell treatments for heart failure, which will enter human trials next year and those leading the trials are very optimistic the trials will be successful - even leading to the end of the need for heart medications. But in the meantime, new promising medications are also being developed. We should also know the results of the effectiveness of Vitamin B3 derivative NR (Nicotinamide Riboside, sold as "Niagen") on those with an EF under 35.

  • jerzeycate
    jerzeycate, October 3,  2019  7:14am EST

    That's a whole lot to swallow at once for such a young age. I am so sorry this has happened. I know that when my heart went "off the reservation" I could barely face the day. I also had a very low BP and a heart that went off the rails with movement. But move we must. The worst thing we can do is sit around, even when that feels like the only safe place to be. You are early in the process and still full of so many questions. Do you have an appointment coming up with either doctor? If not I suggest you call the office and ask for an appointment Prepare your questions when you go in, or you could print up your post and take it with you. This way you will be sure to get the information you need to help you at least feel prepared to deal with the situation as it is today.  I found that to be quite helpful. Being able to begin to understand my condition, how it was impacting my life, and where we were heading helped me regain a semblance of control. I was also able then to figure out what I could do to help my bd start to stabilize. Cutting out salt/sodium, eating a heart-healthy diet. Those things really can make a big difference in our heart health along with enabling the medications to work efficiently.

    As for projecting about the future, I learned that it is one place we can't really go. I was told that without a transplant I had 3 months and that I was not eligible for transplant. My husband was told to "Take her home. Make her comfortable. Get her affairs in order. The Cliff Notes version is that it's nearly 7 years since I got sick. My heart has gone from an EF of 11% to 65%, BNP from over 5000 (on the 100 scale) to under 50. My kidneys and lunges have returned to normal function with o residual effects. I am still quite SOB and have periodic escalations in my symptoms. But hey... I was supposed to be long gone by now.

    So, get an appointment. Continue to share, and have faith...

    It's A Great Day to be Alive...

         Cathy

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