I’m That Difficult Patient.

Something very commonly overlooked when living with Pulmonary Hypertension is the meaning of “progression.” Or at least when it came to me, my brain has a tendency to forget this huge “one up” this rare disease has on us: progressive…it could always get worse.

When I finally became somewhat comfortable with my shitty lungs, and started writing about them I also adapted a very invincible type of mindset. I had my disease, but I felt like I also had control, something that we don’t have very often with Pulmonary Hypertension festering in our lungs. I ultimately had control over how long I wanted to live, IF I wanted to take my meds, and where exactly this disease could take me. It was great to be feeling “healthy”, to be positive, and to ride out the illusion that I somehow was in control of two of the most important organs in my body that already had a reputation for throwing us all curve-balls.

surgery

My newest specialist is someone who in my eyes is all about preventative care. Her biggest emphasis is something that I, and all my past doctors have repeatedly not watched; the fact that Pulmonary Hypertension is a progressive disease, and it could get worse. I, on the other hand am all about the “now”, and gettin’ it while you can as Janis would say. I’ve moved into a rougher environment (which I don’t, and will never regret!), blown off weeks worth of medications, done things that have negatively affected my body for a temporary high, and basically thought I could keep tucking my disease away for a later time. That’s what happens when you are technically still not accepting your disease – hint hint. After taking the guidwires out, shutting down the fluoroscopy machines, my new specialist informed me that it was a great thing we did a new cath after almost four years. My pressures have not changed after all this time, and my cardiac failure has gotten intensely worse. I may feel “alright” right now, but a year from now could be questionable. Which has now led us to three new medications that are going to feel very “intense” for a while until my body starts responding. Here I sit with my morning cup deciphering through my “now” type thinking versus a future that I’m not sure I want to even keep pushing for. Is it worth it? Or is it just doctors leading us on like a cat chasing a string; am I going to be paying a ridiculous amount of money, and living in pain to only be here another ten years?

Overall, it’s a shock once again to the system. It feels like we’ve re-winded back to when I was being told for the very first time that my heart, and lungs both were a problem. After years of writing about PH, I started running from it. I felt suffocated by what I was creating, and felt the need to tuck it away quietly. It has finally come back to find me, and it’s earth shattering, hopeless, and just unfair all over again.

Despite writing, contests, shirts, and everything else I have come to discover that never have I ever been fully okay with my disease, but will we ever really be?

New song of the week finallyyyyy.

-haley.

What Now?

As many of you know I just got back from Houston! I was visiting my lovely specialist and of course I had a heart cath done. But before that, there was a ton of confusion and craziness.

Thank goodness my best friend Candice decided to tag along and made this trip enjoyable! She was right there (along with my dad) to hear everything the doctors said and of course take pictures. And believe me, we shopped like crazy. At the appointment I told my doctor about a recent episode I had (the first one in years) along with all the exhaustion I’ve been having. She decided to look at the veins in my neck then made an off comment. When she came back into the room I only had one question to ask. “Am I in heart failure?” She made a face accompanied with “Well…” and I instantly flipped out and broke down. For the first time ever this disease actually scared me and it was an insane thing to experience.

Candice

From day one this disease has never really scared me, which is hard to imagine considering all the news you’re given. But for some reason, it  just hasn’t. I’ve always felt like normal “Haley” that could never have anything happen to me. Yes it’s probably part of the being young and invincible mentality but oh well. For a doctor to see something in me then hesitate telling me that I’m in heart failure sent me into a shock I’ve never experienced before. I no longer knew what confidence was, IF I was going to live long at all and what my funeral would be like. Every second, every word and every action for this whole day became questionable. I was also extremely nervous for my heart cath because this would give us the concrete evidence if I was in fact in heart failure. And at that point I began to think “What happens after heart failure at twenty?”

Echo

Needless to say the next day in the heart cath, we found out my pressures are even lower and everything is fine. But it definitely re-opened my eyes that Pulmonary Hypertension can grow on you and after a while you get use to it. It becomes something you live with daily. The needles, doctors, medication and hospitals get old and you somewhat forget how serious of a situation you’re in. I guess always take it seriously because you never know when your body could suddenly reject treatment and before you know it you’re trying to keep your head above rising water. Heart failure scared the living crap out of me for about a day and now it sits forever in the back of my mind. You should always remember this risk, however don’t become a burden to yourself. Live your life and don’t forget what you are capable of. Be aware of your disease, but don’t let it take all the power away from you.

Pre-Surgery

Surgery

Recovery has been great along with all the support! Thank you for the stories as well as all the nice things y’all have been saying. It makes this disease a little easier to PHight and I am enjoying all the comments. Never hesitate to contact me or ask me anything. I am here for support too! Enjoy the rest of y’alls week as well as the weekend!

-haley.

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