Some of my closest friends know that the past three years of my life have felt like a huge mountain to climb. Considering I can barely walk up a hill, the thought of having my own 'Everest' is kind of daunting.
Being diagnosed with pulmonary hypertension feels like surviving some kind of nuclear apocalypse. Sure, I survived, but what is left? What can be salvaged? Isn't everything destroyed? Do people really want to live to see whats left at the end the world? These are some of the questions I have been trying to find answers for.
But I've also had questions that relate more to my diagnosis. I know as a rare disease, pulmonary hypertension remains as a bit of a mystery. However, I knew from my diagnosis I didn't fit into the 'diagnosis box' I was placed in. This is very frustrating, and quite frankly, terrifying. Because I am not convinced of my initial diagnosis I have been on a hunt for the 'right' specialist since my diagnosis. I am currently on my third PH doctor in three years.
Thankfully the newest doctor that I have been seeing is visibly confused by me, and has made several comments about something not seeming right about diagnosis. I am not denying that I have pulmonary hypertension, but I feel like that is just a puzzle piece in a larger picture. My doctor has seen some of these puzzle pieces and thought maybe my ASD that I had upon diagnosis had something to do with. So, a heart cath was set up to see how that old hole in the heart was doing.
I foolishly began to feel really excited about this RHC. Maybe all I needed was an ASD repair. Maybe my pressures were low enough to repair it! Maybe once they are able to fix the hole in my heart, I can continue my life as I planned it. I started dreaming about finally travelling to Disney, and getting married.
If you have had a RHC, you probably know the you are usually awake for the procedure. In typical Serena fashion, I also had a student doctor perform the RHC on me as practice- meaning there was a lot of discussion as to what was going on inside the old lung bags. I laid there hearing what my pressures were, knowing that they hadn't really dropped since diagnosis. I heard them say the hole had closed on its own.
Nurses wheeled me back to my room while I bawled my eyes out. I was asked if I was in pain. I felt stupid, but I was crying because my heart felt broken all over again. I wasn't going to Disney, and my life wasn't going to have that miracle I had fearlessly been hoping for. Instead, I remain stuck surviving somewhere in ground zero.
I followed up with my specialist about my RHC and happy to share that my results were positive overall. The fact that the hole closed on its own, is also a very good thing, but now my diagnosis makes even less sense. I am meeting with a rheumatologist again in a few months. I saw one prior to this, and that doctor also believed that someone else was going on- but couldn't quite put their finger on it.
Of course I feel grateful that I had good results, but at the same time my pressures are still higher than normal. My oxygen still drops. I have symptoms. I have to sleep with oxygen, and I am still living with a fatal disease. Although I had a good follow up, I am not out of the woods. In fact, I am not supposed to out of the woods, ever. It is incurable, and apparently fatal. Yes, I feel grateful for the way things are right now but is okay to feel scared?
A lot other things surrounding me symptoms wise don't add up. This isn't just PH- I have suspected this all along. I am comforted by doctors confusion, interest and willingness to explore. He is one of the first to do this, and without me begging him too. It has all been on his own accord, which is refreshing, and the way I think doctors should function. Patients are unique individuals, and cases certainly vary from patient to patient. Shouldn't we have an individual and approach in terms of our treatment?
I guess this is why I am scared. I feel as if something else is going on. There is something else creeping beneath the surface. Some other doctors have refused to see it or look for it. Others were afraid to find it or do anything about it because my initial diagnosis. I have been turned down from other specialists, such as a neurologist, because I have PH.
I wonder if anyone will ever be able to figure out what is going on beneath the surface. There was a point where I was on medication that actually can cause cancer in hopes of treating whatever else was going on. Unfortunately, it was interfering with my quality of life so I stopped taking it. Knowing that there is a chance that there may be a better treatment out there that could help me live a longer and healthy life gives me hope- but it also makes my heartache, because I know there is a chance we may never figure out what exactly is making me sick.
I think about my future and I wonder if I am cursed to live in the remains of my scorched earth, or if I can ever make lush greenery ever grow back. Although I lost what remaining hope I had left after my RHC, everyday I try planting more seeds of hope. Everyday I plant those seeds hoping that something will grow back.
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