On Monday, June 25, 2018, I had a cardiologist appointment. I knew I was going to be going to this appointment alone. Sometimes I prefer that, other times I don't. But I was indifferent this time. I do enjoy feeling independent.
First, I met with device nurses who had to make sure the heart monitor in my chest was still working as it should, which it is. The picture of me with that big ass thing over my chest is a device that the nurses use to make sure it is working. So, I have to sit in a chair with that thing on my chest for about 10-20 minutes. It is different every time. I have to pretty much wait for her to print out all the episodes. Episodes, in this context, mean the times I had to press the button on my clicker to make sure my monitor records how I am feeling. So, if I am having a symptom that I want to record on it, I can press a button and it will record my heart rhythm and rate and is sent to the device nurses.
Then I met with my cardiologist. He is a pretty great doctor. Since I was going alone to this appointment an didn't want to forget anything, I made a list of concerns and questions that I needed and wanted to ask. This is a disabled person's guide to seeing their doctor. Seriously, this helps you keep the appointment on track. It helps you feel like the appointment was not only successful but helpful. Those are rare feelings to have after you leave a doctors office.
One of the first things on my agenda was to ask if they had found anything with the recorded episodes. They did find things but nothing to be concerned about. The reason they have this monitor in my chest is to see if my arrhythmia is anything to worry about. So far it isn't. They found a couple of PACs and PVCs also known as a premature contraction (early beat of the heart that disrupts the heart's rhythm) which is apparently a normal thing for someone who has POTs. It only lasts for up to a minute. And then my heart corrects itself. PACs happen in the upper chamber of the heart and PVCs happen in the lower chamber of the heart. This is all from the American Heart Association website. It is quite helpful in understanding some things as well as explaining some things to y'all. In conclusion, nothing to worry about, yet.
It is extremely validating that what I am feeling in my chest, whether that be tachycardia or my arrhythmia, is actually happening when I decide to record an episode. Before when I wore the temporary short-term heart monitors on the outside of my chest for a week to a month at a time, that wasn't as validating. Now it is like I feel something and it is real. That is amazing to a girl that has been told that she "just has anxiety."
Then I asked my cardiologist what my super highs (high heart rate) and super lows (low heart rate) mean. He said not to worry about it unless it goes over 160 bpm. My heart monitor will automatically take a recording if my heart rate goes over 160 bpm. He also said that I can record an episode if it bothers me or if the heart monitor on my iWatch says something different (if it says it is over 160 bpm). But the super highs and lows still concern me. It explains why I am so exhausted all the time. My highest heart rate for a day could be like 140 bpm and the lowest of the same day would be 40 bpm and that wouldn't be when I was sleeping or anything like that.
My face has been super puffy. I am pretty sure I have something else going on or it is a reaction to my medication. So, I asked about that and my cardiologist said it isn't a side effect to any of the medication that he has prescribed me. That just means I have to talk to my primary doctor about that problem.
My physical health, my POTs, has been affecting my work schedule. My average work week is about 30 hours. That is not sustainable for me to live alone in the Twin Cities. So, I have been trying to fight through the shitty symptoms to get more hours in and it is soooo difficult and annoying. Thankfully, I don't have to worry about losing my job because my boss understands and my schedule is super flexible.
If you have been reading my previous posts: "My Legs Have Failed Me" and "Why I Have Been Thinking About Getting a Cane..." you know that my legs have not been very cooperative for me on certain days. Well, most days I have some sort of trouble walking. But I try not to make it noticeable. In recap of those posts, my legs get weak, shaky, painful, and sometimes numb. And this is from the POTs. POTs doesn't just affect my heart, it affects all different parts of my body.
I explained all that because I have also been thinking about getting a Disability Parking Permit. I talked to my cardiologist about it. I explained to him that I would only be using it on my bad days and as needed because I know I am supposed to walk and exercise as much as my body will let me to keep up what little strength I have. Fortunately, I have a great doctor who understands my frustrations and worries. Because not only are my legs weak but sometimes I feel like I am going to pass out by the time I walk from Target to my car and then I also have to deal with groceries. And just to mention, I do live alone (besides my kittens).
Yes, I am getting a Disablity Parking Permit. I never thought I would actually have to but I need to do what is going to help me get better.
Future posts to come about the emotions surrounding this new part of my life.
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