Monday, March 28, 2016

Just Breathe.

Photo Credit: Chintermeyer

Well. It happened. I received the phone call I've been {un}patiently waiting for. My cardiologist's nurse called me this morning and let me know that I do indeed have pulmonary hypertension (PH). I am scheduled for a right heart catheterization later this month to assess the damage, severity & see if there is anything else of note. I also still have two leaky valves and now I have two valves that have fibrocalcification & also a heart murmur no one has ever picked up on. I am officially diagnosed with both heart and lung disease. After the RHC we may have more answers as to why, but we may not. Is it due to Localized Scleroderma (Morphea)? Isn't supposed to work that way! 

How am I feeling? I honest to God can not answer that question. I'm not sad. I haven't cried. I'm not angry. I haven't thrown something or yelled. I really feel as if I should be showing some emotion & yet I'm not. That in itself is confusing. Why am I not an emotional wreck? My entire life has just been turned upside down. 

I can never carry a baby. We planned on trying to start our family this summer. I know this will more than likely relate to my cause of death at some point in the future. My living to a ripe old age of 90 & sitting on the front porch in a rocking chair with my husband by my side is probably a pipe-dream at this point. In the next 20 years I will likely rely on oxygen to get through the day or night. I can't have an elective surgery. I can't go under for surgery without a greater risk than I've ever signed off on. 

I don't have answers to all of my questions right now. I don't know how to even begin thinking of how to tell my parents this news. Other family members? Friends? From what I've learned over the last week is that the majority of people will not understand the severity of this disease & what it means for my life. I feel like throwing my hands up and saying "I give up". But I know that's not what I can do or will do. I've lived with a very rare disease for 27 years & I've never once given up. I've fought for awareness and for the people around me & closest to me to understand. 

I have fought everyday of the last twelve years just to thrive. I will not give up now. I will fight every single day to just breathe. 



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