Ali's Heart Surgery

I know this is completely out of character for me but if this wasn’t important, I wouldn’t be on here asking for your help. As many of you know, I was diagnosed with a rare heart condition that is in the sinus node of my heart. The sinus node is basically your body’s personal pace maker. I was diagnosed with sinus node dysfunction as well as IST (Inappropriate Sinus Node Tachycardia). Prior to this diagnosis, I was diagnosed with PSVT (Paroxysmal supraventricular tachycardia); which basically means my heart rate will sky rocket randomly causing me to pass out.

In addition to the heart conditions, I was diagnosed with Dysautonomia after getting the Covid shot in April of 2021. A week after I received the second dose, I was barely able to get out of bed. After many doctors appointments, I was finally put in touch with a dr in Raleigh who was able to determine my diagnosis. Dysautonomia is a common side effect of the vaccine for people in my age range. What this means is that the autonomic nervous system in my body does not work properly. It causes my body temperature to be irregular, my heart rate to run erratic which is causing me to pass out, massive headaches, weakness in my legs, memory loss, brain fog and other unexplained issues with my body. Dysautonomia has made my heart condition worse.

Due to the inconsistency of my health, I have not been able to work since Last May (2021). I have tried to get assistance and have met with all kinds of roadblocks and right now I am relying on my parents and fiancé to cover all financial expenses. It is embarrassing and is very depressing.

In August of 2021, I had a procedure done by an EP (a Cardiac Electrophysiologist). The goal was to go in and ablate the part of the heart that was causing the heart rate spikes. This is when they found out that it was in my sinus node. They were unable to complete the operation due to it being too dangerous. He did not feel confident with ablating because It could have permanently damaged that part of my heart causing me to need an actual pace maker. ( He said I was too young for a pace maker).

Now here comes the cool part… After being told over and over again by many doctors that I will have to live with this heart problem forever and that I will just have to find a way to “deal with it,” my father came across an article while he was reading his morning news. The article was about a girl who had the EXACT same heart condition as me and was told the exact same thing. Ironically enough, she had the same EP as I did when she was diagnosed and he told her as well that it was too dangerous to complete the operation. She didn’t take no for an answer and after jumping through many hoops, she ended up getting an appointment with a phenomenal doctor at Kansas City Heart and Rhythm Institute. He explained that in fact there was a procedure but they only had the research and professionals there in Kansas City to complete the surgery. She was able to schedule the surgery and ended up being the youngest to successfully have the surgery.

I ended up finding her on Facebook and reached out to her to see what the steps were to get on the right track to a better, healthier life. She was phenomenal and gave me all the information I needed to contact the doctors in Kansas City.

On June 11, I had a stroke. It was small and in the stem of my brain. It then caused me to have a seizure on Sunday, June 13. The neurologist said that it was likely a result of not having my heart medicine for 4 days.

So, After the stroke, we decided we needed to find a way to get me the surgery in Kansas city. First thing Monday morning, we called the doctor in Kansas City and was told that he was on a year and a half waitlist. Now here is what truly made me believe in the power of prayer. The lady told me that just 15 minutes prior to me calling, someone had canceled their appointment for the next day. I got all the records he needed and I was able to do a phone visit with Dr. Lakkereddy. He determined I was indeed a candidate for the surgery. After several weeks of waiting for a date for surgery, we finally got it… September 21, but I will need to be there for testing on the 20th. We kept hope that insurance would approve, but it didn’t… so it’s in the appeal process. We were told to estimate at least $180,000 (and that is just for the medical part of this and not the travel, lodging or transportation). … Following The surgery I will need to be in the ICU for at least 4 days and spend at least 2-3 days in a regular care room.

I am asking for donations to help pay my medical and travel expenses related to my surgery. If you prefer to donate via Venmo, you may send all donations to @joniprew.

No donation is too small. Thank you so much in advance. If you are unable to donate I just ask that you keep me in your prayers for a successful surgery and healing.

THANK YOU SO MUCH!!!

With love,

Ali

If you want updates on my journey, click the link below and sign up for updates. https://www.caringbridge.org/public/aliprew