It was an extremely snowy and frigid January night, and I found myself pouring a bath – as usual; I’m a water sign – soaking is pretty much a necessity. Immersing in my coconut lavender bombed water, I felt my body and mind release. I was extremely calm, focused, and yet this disturbing message took hold of my mind even further. “You are going to die soon.”
It’s ominous and insane but it is something I clearly remember, and a feeling that I still can’t shake. My anxiety elevates even reflecting on it. You see, all of late 2016 and that new year of 2017, I had been struggling to breathe. For a month now if my heart rate were to raise slightly at all I lost my breath, my oxygen, and eventually consciousness. Any PH’er who has had one of these episodes knows the extreme pain you experience until the minute you lose consciousness, and the gratefulness you know when you wake up. I knew my medications weren’t working, and my Pulmonary Hypertension was progressing. I walked the worst six minute walk test of my life – my blood pressure, oxygen, and meters walked were all extremely low. I sat through a forty five minute echo for my doctor to tell me that my heart function was dropping into scary numbers for “sudden death.” The results confirmed my bath time meditation.
I had just opened a store a month earlier, and the weight of my literal life and decisions was a substantial load. The ache and pressure in my chest reflected it – my daily activity was so nerve racking and alarming that I felt I was living moment to moment. Paranoia was leading, and the bathtub premonition rested in my mind. February first after coming home from Albuquerque not two days earlier, we returned for a ten in the morning self admission to the Intensive Care Unit. We stopped for gas around eight, and I walked slowly inside for a snack barely making it in the front door with a strong dizziness taking over. I complained the entire time to my mom that my chest just felt heavy and I wanted oxygen. I called my doctor when we neared the hospital that I didn’t think I could walk inside, or to my floor in which two of my three doctors waited for me in the lobby with a wheelchair and cracked jokes with me about the check in. We were all tense and just trying to lighten the smell of death in the air.
My first night in the hospital with my three IV’s – I had a transplant doctor stop in to ask me what my thoughts were on my organs being replaced, and that I needed to start seriously thinking about it. Overwhelmed already with a huge impending change in treatment (and trying to run my store from a hospital bed) I stopped communicating and had an internal mental collapse. She decided to dose me with an anti-anxiety drug in which I unwound even further. I was so paranoid about dying that if I felt “weird” or “high” – that it would really be me dying. I watched my monitor constantly, to the point that my nurse turned them away from me so I wouldn’t focus on numbers – and my respiratory rate was rising by the minute. I talked myself out of the black hole that can surround you when you are traumatized. Paranoia has a funny way of morphing you into someone you don’t even recognize. Later in the evening, I thought I had really lost my mind when I heard a distant guitar and suddenly a man appeared in my room gently strumming. He stood in the doorway playing a light but relaxing tune, and left me with a smile continuing down the ICU hallway. Through my worn grin I clung to hope that I would leave this place.
The next ten days I learned about my new medication, how to mix it, my pump, all the while being dosed with oxy for severe pain, adjusting my bed to every angle to try and rid the nausea, and wishing I knew what outside smelled like. I couldn’t look at pictures of Rocco or I would sob. It felt never ending, and most people feel this way as one in three ICU patients develop PTSD. Finally, when the day came for discharge – I went straight to the hotel in Albuquerque and had my first shower with my pump. I was ecstatic to be in the water but also paranoid watching my central line, and weaving through the tubing that now sat in the shower with me. It was a bittersweet moment, and the beginning of a completely new life for me. But – I did have LIFE – something I was not guaranteed even days ago. My long time PH friend Sean, who passed away April 13, 2018 texted me to remind me of that. He beat the “but you are alive” into me – teaching me how to be grateful.
I truly will always believe that I called it close that January, and if I would have waited even days longer to start IV therapy – my premonition would have come true. My mental struggles were holding me back almost to the point of taking my life. I am so grateful for a doctor that helped me understand my aggressive disease even further, my friend Sean, and other doctors who helped diagnose my PTSD. My first Pulmonary Hypertension conference, I saw some patients walking around with gold stars on their name tags. I discovered that a gold star stood for being a long term survivor which means you lived eight years past your diagnosis. “Only eight years?” I remember thinking. And here I am today – July 20th 2018 – eight years past when I was told that this new condition would not go away. Eight years of thinking this would go away, feeling miserable, feeling great, being in denial, losing friends, struggling in more ways than you can imagine, but making it to the eight year mark…and I damn near didn’t.
It has been a very long eight years, full of fighting for my life no matter what it takes. I didn’t think I would be on IV therapy seven years into it but I just want to keep “making it” until I don’t have Pulmonary Hypertension. Whatever it truly takes. Stay G O L D.
-haley.
