And We Wait

10/18 was supposed to be the day. 
The test I had yesterday was supposed to be the last test I needed for my heart transplant evaluation. Everything has been pointing to heart transplant: increased fluid retention, shortness of breath, nausea with walking, and extreme fatigue. However, things went differently than expected. 
Preliminary findings suggest my heart is pumping enough blood out, but since my heart rate didn’t surpass 126bpm at full exertion; the doctor believes this is why I’m short of breath. So the sympathectomy (irreversible) I had November 8th, 2016, which left me with limited use of my right/dominant hand, and also prevents my heart rate from accelerating is believed to now be the problem. Of course he said he needs to review all the data but this is what stuck out to him. 
Based on that, he doesn’t think I need a heart transplant (at this time) but changing my pacemaker parameters will make me better. He wants to try this for 2-3 months and then see how I feel. His theory is that by allowing my heart to beat faster, it will supply better blood to my body and reduce the shortness of breath.
 I don’t think it’ll work.
I’m not being negative but I legitimately do not think it will work. My heart was beating faster last year around this time, 150bpm out of nowhere, all the time, and I felt bad then too. It’s actually what got this whole sympathectomy surgery started; me trying to get better. I’m always trying to get better. 
So to recap, in the last year I’ve been through excruciating pain, lost my job, depression, increased debt, along with countless other mishaps all as a result of last year’s surgery. After all of that, I’m now being told I just lost my hand function to only make my heart worse?! Like are you following me? I have endured all this, to only find out the sympathectomy I was told was a new method for treating ARVD patients, is in fact an old surgery technique. The doctor I saw today told me sympathectomy surgery was used to treat Tachycardia before internal defibrillators were created. 
Needless to say, I spent the rest of my day going from anger, to sadness, to guilt, to frustration to relief. If in fact, if this can all be fixed by a pacemaker tweak then glory be to God. I want nothing more than to feel better and go back to work but I don’t foresee anything being that easy. So now I wait. 
I see the heart failure doctor on 10/30 to get the official results and discuss treatment options. Which, sounds like one: play around with my pacemaker settings.


 

Posted in Now

4 thoughts on “And We Wait

  1. Praying for you! You are the sweetest, most loving person I have ever known! And to see you keep going inspires me! Even on your worst day you don’t give up! You are so strong!

    Liked by 1 person

  2. Oh poo.
    Ok, I mean, next step.
    Praying for EASY solutions in a timely manner (is this too much to ask?!)
    I imagine it all seems so senseless but KNOW none of us would have brought together if this wasn’t your situation (HA THIS WAS SUPPOSED TO CHEER YOU UP-I suck )
    Ok, I’ll pray. I CAN do that(I’m actually REALLY GOOD AT IT🙏🏼😍

    Liked by 1 person

    1. I was telling my therapist today that despite the bad things, my Maskcara sisters have been one of the biggest blessings since this started 💖

      Like

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