Ok, so I have been sitting on this post for some time. If you follow me on social media you know my story and if not here is the crash course. For years I was suffering, slowly dying as my body struggled to get the oxygen required to live. In January after years of struggling and searching for answers I was diagnosed with a rare lung disease, CTEPH. November is Pulmonary Hypertension month so I do want to use this opportunity to raise awareness.
Pulmonary Hypertension is a rare disease itself and often misdiagnosed. CTEPH (Chronic thromboembolic pulmonary hypertension) is one of several forms of PH. It is rare, so rare that I struggled and fought for the diagnosis. Many doctors I encountered knew little to nothing of this disease. It is caused by blood clots, pulmonary embolisms, in the lungs. For most people the clots will dissipate on their own but for about 3-5% of the people that get pulmonary embolisms it will turn in the CTEPH. This was my case.
For years I was misdiagnosed and by the time I was diagnosed correctly I was on oxygen 24/7. If you have followed me for some time you know I have a rare clotting disorder, Antiphospholipid Syndrome (APS) which caused my stroke in 2016 leaving me permanently blind in one eye. I was so very lucky to have an old friend who had become a heart surgeon and had followed my health journey on social media. He knew I had this clotting disease and when he saw me on oxygen he was the one to suggest CTEPH be considered as the cause. I took this information to my doctors and over the next six months I would go through a battery of tests to reach the CTEPH diagnosis. Again, there needs to be more awareness about these diseases and it’s become my personal mission to be a part of the awareness campaign.
Throughout this time I did my best to carry on my business partly because it is my livelihood but mostly because of how much I love the work I do. But in May of 2018 I shut it all down. I wrapped up all the clients I had and went on hiatus. I was being sent to San Diego to hopefully have a life saving open heart surgery called pulmonary thromboendarterectomy (PTE).
This condition is so rare that few hospitals even do this surgery. San Diego it turns out has the most experience in the world with this surgery. They are the hospital that pioneered this particular procedure. My doctor here in San Antonio and my dear friend were both adamant I go there because I was considered high risk having had a stroke once already. I had to go in blindly not knowing if I would be a candidate.
Only after team in San Diego ran their own tests would then tell me if they would do the surgery. So I went in July of this year. I went and hoped beyond hope that whatever the universe had in store for me would be my course for the greater good. I was lucky to be in such a beautiful place and every day after tests at the hospital I would go to the beach to watch the sunset meditating as I asked the universe to guide me on my path. I sat at the top of the cliff unable to walk down to the shore and I watched as I saw people doing the things I love. All I could hope was that I could one day do those things too.
Surrender can have a negative connotation but to me it’s positive. I surrender to me means I willingly give myself to the moment and trust. And that’s what I did… I surrendered myself to the universe, to these doctors, to the moment. Today is my three month PTE surgery anniversary. The surgery that saved my life and I can’t help but reflect on all that has transpired and how far I have come. The human body truly is an incredible beast. What it can endure and come back from is phenomenal.
Three months ago my life would be forever altered by the hands of a man I had just met. I think of him and his team often as I’m sure so many who have been in my shoes do. He held my life in his hands that day. The responsibility he takes on is not to be diminished. The courage and trust he has in himself and the team he surrounds himself with is something I can only be forever grateful for. Three months ago I surrendered my body to his hands with complete trust.
On August 7th of 2018 I was the 3916th patient to undergo PTE surgery at UCSD. It was hard and painful but so worth it because now I can breathe again. I now have my life back full of possibilities I couldn’t fathom before. To Dr Pretorius, the man who has saved so many of us with CTEPH, thank you. Thank you!!
So this brings me to today, where am I now? I am alive and feeling better than I have in years because I can breathe!!! I’m not 100% and my body is still healing from the surgery and from the years of struggling to get oxygen. I will forever have the disease APS that caused all this to begin with and I will be under strict supervision by my team of doctors but I will live and I plan to live it up. I feel like I have been given yet another chance at this thing called life and I plan to use it for all the good I can. I have big plans and photography is just one of the passions I intend to pursue. This experience has only made me more passionate about helping people to accept, appreciate and love their body. My mission remains to help people live their best life with purpose and passion and to never hold back from being their authentic self.
I will be coming back to my business soon, very soon! Stay tuned for that announcement and subscribe to the mailing list to get notified when bookings for 2019 officially open. And for everyone that has been a part of my journey a HUGE thank you. You all mean so much to me.
All my love.
**Side note....I noticed I started doing portraits every month around the anniversary of my surgery so my plan is to do this over the next year. My way of honoring my body and appreciating it for all it does and how it lets me live.