Friday, May 17, 2013
The news today was shocking. After struggling with health problems for the past 5 years, which I will get into more detail about, this morning, my family, husband and I met with a lung transplant doctor at New York Presbyterian hospital.
In my doctor's minds, my illness (a combination of severe Pulmonary Hypertension, the possibility of Pulmonary Veno Occlusive Disease, which is an extremely rare lung disease, and an auto immune disease) is a life threatening one, and therefore drastic measures must be taken. After hearing about the risks and life expectancy of a double lung transplant patient, (1-5 years) I became scared shitless; quietly scared shitless since I'm not one to express my emotions in public, but truly scared shitless.
There are cases where people have lived 15-20 years after a transplant, but the doctors seem to not talk about those people enough. I learned about the medication that has to be taken for the rest of one's life prior to a transplant and became even more scared shitless, as I am on one of the meds now and it is causing nausea, so I've had to temporarily stop it. After a transplant, stopping medication is not an option if one wants to remain alive. I also learned about weekly bronchoscopies, blood work and check ups that have to take place post transplant. Basically, all of the info we got today has made it feel like I've been sucked into a nightmare and I can't wake up.
All of a sudden, all thought of a future disappeared and instead of being sad I became numb.
I've been home now all day thinking about life and what it really means and I'm realizing more and more that life is only now. It is this moment. Nothing else is promised to us.
I am not one to discuss my emotions and I am very private about my life, but I feel compelled to write about my experience. Hopefully it can help someone out there who may be going through a difficult time. For my own personal benefit, it simply feels good to get out what's going on within.
My intention is to heal my body with the help of my wonderful husband (without whom I probably would have jumped off a cliff by now), my own strength, raw vegetable juices, my oxygen tanks (which I now wear 24/7) time with family, prayer, and laughter!!! Lots and lots of laughter!!!
Despite what the doctors say, I am determined to do all that is in my power to heal myself.
Thank you for reading this. See you at the next.