It's Been A Rocky Road

Back in December I was medivaced from Phoenix to California because I was experiencing atrial flutter (AFL). The doctors were able to pace me out of it and I got to go home right in time for Christmas. But just two weeks later, I was back in AFL and had to fly up again. They were, once more, able to pace me out of it, and now there is a setting on my device that if I go back into AFL, my pacemaker/ICD will make a sound letting us know. On top of that, I was also started on a few new medications, one of which is Coumadin.

I’ve been out of the hospital for a little now, and while I am no longer having AFL, I am having some other symptoms. For a while now, my appetite has just not been what it used to be and when I eat even just a little, I tend to get sick to my stomach.

On top of that, I am so tired so much of the time and I am getting out of breath more than I used to in the past. The doctors think that it is a side effect of a new medication they put me on for my pulmonary hypertension (PH), so they are going to switch me back to my old one. They aren’t sure why I am getting out of breath so much quicker, but they have scheduled a CT scan for this week to see if it’s my lungs. If it isn’t my lungs and the symptoms don’t go away after a few days of being off the medication, then it is most likely the right side of my heart and/or my PH getting worse – in which case there is talk about a cath and starting an IV medication.

The idea of having an IV medication has never been one that I liked, mainly because of how I would look with a pump. We have been able to put it off for a while now – but I’m worried that the time has come for me to suck it up, stop being vain, and get it.

It’s a double-edged sword, getting answers as to why I’m feeling so crummy. I want to know so we can fix it, but on the other hand, I don’t want to know because the solution may not be one that I like. I think that at age 21, I’ve dealt rather well with having to get surgeries and a pacemaker, use new medications, implement lifestyle changes – and anything else I’ve had to do for my health.
I feel like I want to throw a temper tantrum because I am so tired of having to do all of this. I know it’s not a very mature response, and I’ll end up doing what I’m supposed to do because I want to live, but I can’t help but feel sorry for myself right now. And I’m not sure how to get over it…

The stay in California while we tried to figure out just what was going,  was a hard one but the amount of support I have gotten is amazing. I want to thank all of you for your love and support over these difficult weeks. Camp Taylor and the amazing people from there have been so supportive and loving - I am so glad that I have found this new heart family to be a part of. Thank you to all my family, friends and my church family . You all have played an important role in my journey and I will never be able to thank you enough for all the love and support.

Hope and Love,


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My Life As A Chronically
Ill Young Adult
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