Help Jackie Return to UCSF for Potentially Lifesaving Care

Hello, and welcome to my fundraiser for a relocation back to San Francisco so I can get my health and medical needs met in the UCSF system of care. UCSF is where I used to get seen while living in San Francisco for 11 years, and credit their stellar and groundbreaking Cardiac Electrophysiology team to both saving my life and buying me some years of being a more physically able and functional person than what I've now become, today.

Sinus Node Dysfunction, or Sick Sinus Syndrome as it is sometimes also called, is when the sinus node of your heart is not working as it should, and cannot regulate heart rate and rhythm, properly. I was officially diagnosed with this by UCSF in 2016, but likely had it for years, before that. This type of heart disease causes cardiac arrhythmias of varying kinds. My body is most affected by abnormal atrial flutter, atrial fibrillation, and often go into general atrial tachycardia, as well as the occasional bouts of bradycardia.

I've been struggling with cardiac arrhythmias since 2009. Which originally stemmed from a very common congenital defect, a VSD, or a hole in one's heart, not being closed until I struggled and almost died from endocarditis stemming from a staph infection in 2001. This necessitated open heart surgery and a prosthetic mitral valve, all of which caused the original scarring on my heart which lead to the disruption and misfiring of the electrical systems within my heart, and thus, arrhythmias.

During "Covid World" in 2021, I found myself in an abusive living situation and was offered help by my grandmother to move back to the midwest, where I could be closer to her. So I left the toxicity behind me, as well as the safety net of the UCSF medical system. My specialists were worried about the medical care I would receive, with that move.

As such, the medical systems in the midwest have proven to not be qualified to treat the specific complexities of my cardiac issues that are not ischemic (I do not have high cholesterol, basically, and thankfully) in nature. Misdiagnoses, mistreatment, and not being taken seriously even with hard data to back me up have all played a part in this.

In 2023 my body started experiencing extreme bouts of fatigue, coupled with more arrhythmia episodes while in these fatigue or "spoonie" crashes. Suddenly, this person who walks everywhere to get needs and errands done, could no longer safely do so. I reached out to UCSF and was urged by them to get seen at Mayo if I could. I did, and it took them almost a year (due to the long waits to be seen by specialists, there) to determine that I do not have POTS as they thought I likely had, given my symptoms.

In September of 2024, due to the physical demand and stress load I placed on my body trying to attend school two days a week, my heart went into overload. I found myself needing emergency care while in arrhythmia, with my atria beating at over 300 beats per minute. I had to leave one medical facility that wasn't skilled enough to treat my already significantly damaged heart and wait for an opening at Mayo for my 8th cardiac ablation. Within a few days while my heart was in extreme overdrive, they had a last minute cancellation and I was offered the spot. Thanks to some dear and generous friends of mine who drove me, I was able to make it.

My recovery from this latest ablation has been the roughest I've experienced. There was zero aftercare and follow through provided by Mayo. And somehow the arrhythmias keep coming, despite the procedure. I am quite literally running out of places to safely ablate, largely due to my mechanical mitral valve and the complications that it presents. I am also running out of time.

This entire experience here in the midwest has given me a good scare, and new perspective. I should not be living somewhere that the only medical facility qualified to treat me in such an emergency is at best an hour and a half away. I need to be able to call 911 and have an ambulance take me to a hospital that can adequately treat my complications within a reasonable time frame.

I have more recently been seen at a local hospital, and both they and the staff at Mayo think I need to be on a hardcore antiarrhytmia med that one needs to be in the hospital in order to transition onto it. This medication comes with many high risks, in addition to side effects that would exasperate other serious medical conditions I have, like chronic vestibular and hemiplegic migraine, and my quality of life would go down even further than where it is, today.

UCSF invented cardiac ablations and are top tier with their skills. It could be that they could figure out a way for me to avoid the medication being recommended. Or, it will come down to a procedure that will make me pacemaker dependent for every single beat of my heart. If it comes to this, I want the procedure to be done at UCSF, and I want to live out the last of my days where I've been most physically comfortable, climate wise, with my myriad other health conditions, in San Francisco.

Legally and federally, I am considered disabled, and have been on SSI for well over a decade, which leaves me with limited personal resources and funds. I struggle to get my needs met, as it is. A huge amount of my money goes to basic living expenses like rent, and then there are all of the supplements I take in an effort to maintain as much functionality as possible. My grandmother, now 94 and facing the end of her own life, cannot financially help me out with this relocation. So out of desperation for a safer and better life, I have started this go fund me.

The current goal is $6,400. The actual move will cost just under $5,000, as quoted to me by Colonial Van Lines. The rest is for a buffer zone of a few hundred dollars, as well as to help me pay for storage in the Bay Area while I try to secure affordable housing in San Francisco, again. The amount of money that go fund me also takes out of donations is also accounted for in this amount.

I am really hoping to get back to a better health care system, more accessible public transportation, a climate that takes less of a physical toll on my already struggling body, and to where I feel that I belong. It will not be possible without your help, small or large.

I thank you very much if you took the time to read all of this and try to understand what it's like to repeatedly face death as a younger person struggling with disabilities. At present, I am 43. My mother, who also had a complex health journey with ischemic heart disease, died at the age of 45. I am launching this gofundme on what would be her 69th birthday, if she were still here. I know without a doubt that she would want this relocation back to San Francisco, and a saner and safer health care system for me, and would help me, if she could. So in a way, this is also done in her honor.

In Hope and Gratitude,

Jackie