February 20, 2020

Cardiology Update: February 2020

One of the hardest things. If not the hardest thing about living with an invisible illness is that no one else REALLY sees it. You say you're tired but you still show up for things. You say you don't feel good with a smile on your face. You don't look sick so people don't know how sick you really are. I struggle with this a lot. Even on the worst of days, I smile, laugh and joke around.

For the past few months though, I have been struggling to keep my head above water. I have been short tempered, permanently exhausted, I cant catch my breath, everything hurts and I was feeling bluer than blue. I put up a front and dealt with myself behind closed doors. During the day when I was home alone or at night after everyone had fallen asleep. I sat crying in a closet and sobbing in bed because how the hell is anyone supposed to live like this?

And then came today. My cardiologist follow up where I was expecting to get my results from all my tests and heart monitor. I wanted to cancel it because going to the doctor in a foul mood never ends well. But I needed to know so I sucked it up, slapped on a smile and showed up. Early even!
When the Dr comes in she said "Well everything looks pretty good. I know we didn't get a full 48 hours on the heart monitor but we will talk about that later!"
So good news first I guessed.

I had an echocardiogram and an ultrasound of my carotid artery done a few weeks ago. After my heart attack in 2017 there was a few things not working 100% anymore. A few leaky valves but no major damage. Well good news is there has been no change there! And my ultrasound showed a little build up in my carotid but nothing that would cause any of the problems Ive been having. So, technically still good news.

Now for the reading off the heart monitor. There was a little mix up on the time and instead of 48 hours she only got 30. But she said for those 30 hours my heart was looking like I was in the running a marathon. Even in my sleep my heart was racing. And that is not ok. Ok, theres the bad news.

But then she looked at me and said with a steady racing heart rate like this I should be exhausted, dizzy, short of breath and I should have chest pressure/pain. Well that explains so much! I smiled at her when what i really wanted to do was break down in tears because I felt like everything I have been pushing though was validated. I wasn't just feeling sorry for myself, it wasn't all in my head. It was real and she understood and explained the why. I have never in my 12 years of dealing with doctors and chronic illness felt so... visible? If that explains it.

As I sat waiting for my friend to pick me up from the hospital I realized I was also feeling a little let down.  Over the last few years, I have been mentioning all these symptoms to my transplant clinic and the most advice I had gotten from them (up until my last visit) was to keep pushing though and I would feel better.  Keep workin out to lose weight.  Just keep going.  My body was telling me to calm the hell down and I didn't stand up for myself.  Instead I pushed myself and then felt like a failure when I couldn't do things.  I am my own worst critic and I need to stop that.  Because the only person who knows how I feel, is me.  And if Im not going to take care of and stand up for myself who will. 

And now here I am, TWO doses in to the new medication and YOU GUYS!  My heart rate his 60.  Its been a long time since I have looked at my watch and seen that number and have still felt good.  There have been a few times I hit below that but I was on the verge of passing out each time.  But Ive been awake and moving around for hours and I have only maxed out at 82 so far.  Thats usually a low for me. My heart isn't in my throat.  I can't hear the pulsing in my ears.  Maybe I am just being optimistic.  I don't even care.  If I only get these few hours feeling like this, that is more than I have had in the last few years.  I feel... good.  I have hope again!

In two weeks I will double my medication and then I go back to the doctor in 6 weeks for a follow up.  Just wanted to say a quick thank you to everyone who has checked in on me, commented, sent me messages and stayed up all night keeping me company when I couldn't sleep.  Y'all are amazing and I am so thankful for each and everyone of you! 

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