Meme21
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Meme21, December 24,  2018  3:30pm EST

Born with TOF

Hello I’m 25 and was born with TOF I have had 2 surgeries as a baby and a open heart 9/10 I forgot lol it’s been 16 years going on 26 I will be having surgery next month to replace heart vale, this year has been the worst! Had  symptoms all year and o lot got worse, I had a few questions, I notice a few years ago 2015 it started with palpations and doctors said I was fine 2016 I was some what ok but at the end of that year it started giving me problems, I did a crazy workout and I notice my heart was out of beat would slow down then start racing fast in 2017 of October saw my doctor and said things had got a little worse but wasn’t time for surgery also started haveing and still have shoulder pain idk of that’s a sign as well anyways I was still eh okish in 2017 but by 2018 only 9 months after my last visit with doctor it got worse shortness of breath couldn’t workout or my heart will start acting out this August I had finally saw doctor and that lead to them saying it was time but I’m just in aw on how fast things truned around, I don’t get how I couldn’t do surgery last year befor things got worse it’s a little upsetting but I fee like doctors should listen more to the  patient  More then timing of surgery idk I notice to anxiety is another  symptoms I still never had and still don’t have swollen feet or chest pain thank God, but any tips on how to manage these  symptoms ?  It’s hard to even explain them tbh I get tired,short of breath and also forgot end of 2017 I stated having tight chest and still do but I find it strange when I eat  Cayanne pepper  It goes away just so strange I hope all these problems go away after surgery it’s so annoying and no one understands even doctors I understand they help trust me but I’ve learn no one knows ur struggles with this but people that have it even  heart doctor dosnt know how it feels idk just ranting lol 

3 Replies
  • AmbassadorC
    AmbassadorC, December 28,  2018  7:01am EST

    Good morning Meme21, 

    It’s perfectly normal to try to make sense of everything you have been through by reviewing what your signs and symptoms were in the past and how the timing of surgery is determined. The tricky issue with valve disease Or any heart disease is that often times it can be confused with the natural aging process (shortness of breath) or the symptoms mistaken for the everyday stresses of life I.e. palpitations, fatigue, etc. The upswing is that in your case, it appears that you have a history with your cardio as well as a compilation of testing results which the Cardiologists use in conjunction with your symptoms to determine the timing of surgical intervention. For me, my leaking valve went from mild to severe within a period of two short years. I became symptomatic rather quickly and I was in pretty decent shape. This perplexed me as well, however I had a very confident relationship with my cardiologist and trusted his recommendation. I was always told however, to keep in touch if I felt symptomatic. The takeaway to others that are reviewing this post is that it is key to be your own Advocate and speak up if you become symptomatic. Don’t wait or it could be too late. 

    Keep on fighting with heart❣️

    Ambassador C

  • AHAASAKatie
    AHAASAKatie, December 29,  2018  7:09am EST

    Good morning, Thank you for sharing what is happening in your world. I see that AmbassadorC has responded and provided some great advice. I can share with you the Heart Valve patient education resources that we have as well. Please keep us updated on how you are doing and what your next steps are. Best Katie 

  • Ntamel88
    Ntamel88, December 30,  2018  9:26am EST

    I just finished reading your post and a weight was lifted off my shoulder cause that’s exactly how I feel. Doctors will never understand you unfortunately cause they may have never experienced your symptoms. I like that you add cayenne to your regimen, I would also recommend trying nature’s sunshine hawthorn berries. 

    I was diagnosed 2 years ago and still haven’t been told weather I need surgery or not but my symptoms worsen by the day. 

    We keep fighting and best of luck to you 

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