Chronic Love Club

CLC MEMBER FEATURE: Hi! Maudie Kay here and I have a chronic illness you can’t see. I was 14 years old when I received my first ICD (pacemaker/defibrillator) after being diagnosed with Arrhythmogenic Right Ventricular Dysplasia (ARVD). The main symptom being treated was tachycardia and I was told developing heart failure to the point of needing a transplant was rare with this disease.

*Eleven and a Half years later…*

I will be turning 26 next week* and my illness has multiplied 10x since my first ICD. In a last attempt to stop my tachycardia because I was maxed out on meds, I had a bilateral sympathectomy performed in November of 2016. The surgery stopped my tachycardia but caused permanent nerve damage to my right hand. Unfortunately stopping the tachycardia wasn’t enough and by March 2017 my heart failure symptoms were exacerbated. My deteriorating health crushed my spirits and I developed anxiety and depression. Even though I’m told it’s normal for those with heart failure, it doesn’t make me feel better having to acknowledge I have a mental illness.

I have now been undergoing evaluation for a heart transplant for almost a year with no definitive answers. Daily I suffer from severe fatigue, chronic pain, nausea and headaches. Not everyday is a bad day, but it’s been a long time since I had a great day.

I’ve been trying to accept that feeling great probably isn’t possible anymore but I can still feel better than the day before. When that happens I am grateful and on days I feel worse, I try to accept that it is what it is. That’s a saying I tell myself often because I know I can’t change my heart disease, my right hand damage or any of my other countless symptoms. I have more specialists than I have friends and I take more pills than I want to.

Despite everything I’ve gone through, things I can’t even begin to touch on, I am still grateful. For without darkness we would never appreciate the light; and through every single negative and terrible thing I have been able to find something good that came from it. It takes work, a lot of work, but no matter how big the mountain is you have to climb, there will be joy at the summit. 💗

Check Out Chronic Love Club’s Blog or follow them on instagram @chronicloveclub

*This post was originally written in February but due to back log, just now published lol just to clear up any confusion for those who know when my birthday is.

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