On Tuesday my doctor personally called me to go into the E.R. That morning I woke up feeling off so I took my blood pressure at 8am & it was 86/61. I googled ways to raise it & began to eat salty foods because I am already a hydrated person. At 9am I took it again & it was now at 81/52, which was the lowest number I have ever seen for myself. I chatted with my personal nurse lol, Karlene, & she told me I should go in because what happens is the body goes into fight or flight mode & protects the core causing blood pressure to drop. Along with my heart condition & surge headaches I was having it wasn't a great sign. I took my blood pressure at 10am after trying to eat more & it was 97/64, which was way better. My doctor told me to go in still because I was feeling light headed & this could be a pre-rupture symptom, I explained my frustration with the E.R. doctors writing me off because I "look" healthy. He told me exactly what to say to them so they understood the severity.
When we went in I told them that I was having low blood pressure during the day, thunderclap headaches, & that I have an aortic root aneurysm measuring 4.8cm. They immediately took me back, hooked me up, drew blood, & then I went back for a brain, neck, & chest CT. Due to my gene mutation, I am susceptible to aneurysms because my blood vessel walls are weaker. Luckily, no new aneurysms but, my aortic root was now measuring 5.2cm. They sent me home after being there a few hours & then told me I needed to take it easy until my appointment with the surgeon on Thursday, Originally I had 3 appointments on Thursday, ophthalmology, brain & neck MRI, & surgeon. Because I did a brain & neck CT, I no longer needed the MRI. Luckily that happened because I had my pupils dilated for the first time & I could not see well after my first appointment, I had my sister come pick me up for a few hours because Beau & I didn't think I should drive. As the appointment with the surgeon approached I felt nervous, I was going to know what my next steps were. Beau joined me this appointment & the surgeon was honest & nice. He explained how uncommon & complex my surgery would be, he said if it was his daughter he would send her to Marc Moon in Texas. He worked side my side with him & he is now the chair at the Texas Heart Institute, basically the best. I linked his bio to show that he is the real deal & I find so much comfort in that. The surgeon we met with doesn't even remember the last time he did my surgery, maybe 15 years ago or back in training. They overnighted my case filed & he texted the surgeon in Texas about me. I was supposed to hear back in a week but, I heard back the very next day. Dr. Moon's nurse practitioner called me to go over what to expect with the surgery & answer any questions I had. She will be calling me with updates this weekend & I will know my surgery date by Monday but, it will be within the next 2 weeks. My surgeon is out of town but knows about me & will personally call me when he gets back but they are wanting to get this ball rolling. Now, I just wait for the call to tell me when I need to book my flight to Houston. The surgery chosen for me will make it so that I don't have to be on blood thinners for the rest of my life & I'm ready to come back stronger than ever. Even though it feels like things continue to move sooner than expected, I am grateful for everyones effort & humanity. My gene mutation plays a big factor in things, it makes me prone to dissection. With the gene mutation I have Ehlers-Danlos Syndrome, another rare thing to add to the list. When I updated my cardiologist, he said the sooner the better. As I want to stay for Halloween & watch my kids trick or treat I do understand that this is not a surgery to wait on. I continue to have the best support system, my mother & father in law are always willing to meet us or take the kids without hesitation so that I can make sure I'm okay. My personal nurse, Karlene, always keeping me in check & making me realize I need to take care of myself & surprised us when she walked into the E.R. on Tuesday night. She's even going to join us in Texas, support doesn't get much better than that. All of the friends & family that have reached out wanting to support & help in any way they can, I love you. I'm feeling all the emotions this week and as things play out I feel in alignment with the universe & myself. All the healing I have done this year has led me to be empowered in this moment I would normally feel week or helpless. https://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/symptoms-causes/syc-20362125#:~:text=There%20are%20many%20different%20types,Stretchy%20skin. https://www.texasheart.org/people/marc-moon/ https://my.clevelandclinic.org/health/treatments/17421-valve-sparing-or-valve-preserving-surgery-reimplantation-surgery
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