Ali Prew

First post: Sep 18, 2022 Latest post: Oct 14, 2022
 Back Story
Ali was diagnosed with a rare heart condition that is in the sinus node of her heart which is basically your body’s personal pace maker. She was diagnosed with sinus node dysfunction as well as IST (Inappropriate Sinus Node Tachycardia). Prior to this diagnosis, she  was diagnosed with PSVT (Paroxysmal supraventricular tachycardia); which basically means her heart rate will sky rocket randomly causing her to pass out.

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

Due to the health inconsistenciies, she has not been able to work since Last May (2021). We have tried to get her assistance and have met with all kinds of roadblocks and right now she is relying on us and her fiancé to cover all financial expenses. It has been embarrassing and is very depressing for her. 

In August of 2021, she 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 her sinus node that wasn't functioning properly. They were unable to complete the operation due to it being too dangerous. The dr did not feel confident with ablating because It could have permanently damaged that part of the heart causing the need of an actual pace maker. ( He said I was too young for a pace maker).

After being told over and over again by many doctors that she'd have to live with this heart problem forever and that she'd just have to find a way to “deal with it,” Terry came across an article about a girl who had the EXACT same heart condition as Ali . Ironically enough, this young lady had the same EP as Ali did when she was diagnosed. This young lady was persistent and after jumping through many hoops, she was referred to drs at  Kansas City Heart and Rhythm Institute. At her appt they  explained that in fact there was a procedure that they had researched and were trained to do that other drs couldn't do, but it would have to be done in Kansas City.  She was able to schedule the surgery and ended up being the youngest to successfully have the surgery.
Ali found this young lady 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 her all the information needed to contact the doctors in Kansas City.

On June 11,  Ali had a small stroke in the stem of her brain which later caused her to have a seizure.  The neurologist said that it was likely a result of not having her heart medicine for 4 days.

So, After the stroke, Ali reached out to the drs in Kansas City and was told that typically the doctor had a year and a half waitlist, but said that 15 minutes earlier someone had called to cancel their appointment for the next day.  Talk about DIVINE intervention...  she got all the records the dr  needed and I was able to do a phone visit with Dr. Lakkereddy as planned. He determined that she  was indeed a candidate for the surgery. So here we are getting ready to go to Kansas City. 
Prayers and sending good energy are greatly appreciated. 




Preliminary testing :  Tuesday Sept. 20
Surgery: Wednesday Sept 21

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