Hi, my name is Kelsi Wells. I am currently a 23-year-old woman who was diagnosed with POTS and dysautonomia in December of 2015. I just recently graduated college with a degree in Exercise Science and am now interning for the same doctor who transformed my life with stem cell therapy before I apply to Physician Assistant school. Here is my story.
From the outside, I have always looked perfectly normal. Anyone who sees me most likely assumes I am like any other young, healthy person in the prime of their life. There is nothing to suggest I have endured things no young person should ever be faced with. And yet, for the past 9 years, my life could not be more different from my peers.
When I was 14, I was just like any other freshman in high school. I would go to cheer practice, hang out with friends, and go to school like every other kid — that is until I caught an unknown virus in September.
At first, it only started with a few symptoms. Every time I went from sitting to standing, my heart rate would increase 45+ beats per minute, I would get short of breath, and start to become dizzy. A few minutes later I would be okay, until the next time I had to stand up or bend over. After months of these symptoms, with no answers (even from a Stanford cardiologist who said I just needed a therapist for anxiety), I met with a neurologist who had finally reached a diagnosis for me – POTS and dysautonomia. POTS stands for Postural Orthostatic Tachycardia Syndrome and is the most common form of dysautonomia, or dysregulation of the autonomic nervous system. Dysautonomia is an umbrella term for many different conditions of the autonomic nervous system, a branch of your peripheral nervous system that is responsible for most automatic processes in the body like heart rate, blood pressure, and digestion. And while this diagnosis was a saving grace from all the ambiguity and confusion of my rare symptoms, I don’t think I could’ve ever predicted the road I was about to embark on.
What makes this diagnosis even more frustrating, besides the lack of awareness and acceptance, is the lack of knowledge and research relating to its etiology and underlying mechanisms that can contribute to the condition. This is then compounded by the fact that every patient who is diagnosed experiences a varied list of symptoms, as each person’s autonomic nervous system is affected differently. With all those factors, it incredibly difficult to diagnosis, let alone treat and/or cure, this condition. So, even though my neurologist could identify the symptoms I was experiencing, there was no way to guarantee help. And though some young people with this condition can “grow out of it” over time, I was not so lucky.
Unfortunately, as time went on, more symptoms continued to appear. In addition to the constant dizziness, fast heart rate and shortness of breath when changing positions, I then struggled daily with nausea, insomnia, brain fog, fatigue, headaches, hyperhidrosis, GI dysfunction, standing/exercise intolerance, fibromyalgia, numbness/tingling and poor circulation. Not to mention, I also must watch out for migraine attacks and possibly fainting unpredictably. In addition, I have had to manage intense anxiety and depression for years, manifesting either out of nervous system dysfunction or due to all the uncertainty, hopelessness, and isolation I am continually left with as I navigate this new life. Never mind the constant doubt I have in trusting myself that what I feel is real — even with my disabling symptoms, it sometimes feels hard to trust myself after all the years of doctors, some friends, a few family members, and most of all society telling me that I look completely normal therefore I must be fine.
Since receiving my diagnosis, I have endured more than 7 intense treatments and surgeries (including long hospital stays), seen over 15 doctors, been prescribed upwards of 20 medications and tried more supplements than I could possibly count. I have also experimented with many diet and exercise regimes and have gone through many non-traditional routes of treatment to find any bit of relief. I have constantly researched and reviewed newly published studies to see if I could ever make any connections myself. Not to mention, I have experienced some of the worst pain ever imaginable, more than just a couple of times, all in an attempt to find treatment that would give me significant improvement. This pain came in the form of aseptic meningitis, manifesting as a severe adverse reaction to IVIG treatment which I went through a total of 3 times. Every single time I would contract aseptic meningitis, despite more and more precautions taken, and the reaction would worsen in severity and length each time I completed a new treatment. However, I was determined to continue after the first and second treatment as it was the only thing that gave me more energy on a daily basis. Sadly, I finally had to throw in the towel after the third round of IVIG, since the aseptic meningitis was so severe that it took days before the inflammation finally dissipated.
Although I was not doing great before the pandemic, catching COVID multiple times made my condition immensely worse. Though vaccinated, I got COVID in January of 2022 which launched me into one of the hardest 6 months I have had to endure yet. No matter what medication or supplement I tried, my insomnia had gotten tremendously worse, and the continual lack of sleep only exacerbated every other symptom. And after taking a semester off school the previous year, I was determined to finish this semester despite all these worsening symptoms. Somehow, I was able to finish the semester, but not without help of my professors and on-campus disability services that allowed me accommodations. Even with that help, the semester was one of the worst times in my life since I only had the energy to focus on school. Throughout that semester, I not only suffered from the intense fatigue every day, but I also rarely saw my friends, barely left my apartment, and suffered through constant anxiety and depression due to the sleep deprivation. I was barely living.
Finally reaching my rock bottom, I could not fathom going into another semester without improving my condition. My quality of life had gone down exponentially, which is why my mom started researching newer treatments and found one that seemed to have promising results without horrible side effects – stem cell therapy.
After talking to a previous dysautonomia patient who underwent this therapy, I felt reassured that this treatment could possibly bring me significant relief. At this point I had nothing left to lose, so it made sense to give it a shot. After getting the mesenchymal stem cells extracted from my abdominal fat tissue in May of 2022, I finally received 3 rounds of IV stem cells, over a period of 3 weeks, along with 1 round of intranasal stem cells in July.
The results were inexplicable.
Immediately after the first infusion, I was already tired enough to sleep. Having not slept well for over 6 months, I was so surprised at how tired I felt only 10 minutes after the infusion started. That night, I slept a total of 12 hours. 12 whole hours! I almost could not believe it! After months and months of trying anything I could to improve my sleep beyond a max of 6 hours, I was finally able to actually rest with no issue. I then continued to sleep that much every night afterwards, with my body finally able to start catching up on all the rest I missed out on. It felt as though the stem cells were able to finally let my body rest and repair itself after all the damage that was done in the months before.
Week after week, I saw improvements. My bowel movements became very healthy and regular — something I did not know was a normal experience for most people. My POTS symptoms improved to the point where I was no longer worried about possibly fainting whenever I stood up from a chair. Although the POTS symptoms did not completely vanish, they improved to a level I had not ever experienced since my diagnosis. My nausea seemingly disappeared. Instead of dreading what to eat for breakfast because I was afraid, I might throw it up, I was actually hungry in the morning. My circulation dramatically improved – I no longer would look down at my feet to see a greyish, blue skin tone. The standing intolerance increased; for the first time in years, I could go to events without the fear of there not being a place to sit down every 15 minutes. The fatigue lessened to the point where I was finally able to start working out again, let alone have the energy to hang out with friends and resume hobbies I had given up before.
Since my first infusion with stem cells in July of 2022, I have had another 2 infusions at different dates. The second infusion was in May of 2023, performed for no other reason than to assist with more healing and improvement that was first seen with my previous infusion. This treatment helped lower the severity of my symptoms even more, even if just for a few months, before I sadly contracted COVID once again.
Even with catching COVID again in August of 2023, seeing the same progression in my disease state as the time before, I received stem cell treatment in October which had the exact same beneficial effects as before. I cannot even describe how amazing it was to know that I had a treatment option available which I knew would help me again. Now with a total of 3 treatment rounds under my belt, as of October 2024, I am feeling the absolute best I have since my diagnosis. I am able to live a life I could have only dreamed of since my diagnosis. The tremendous improvement in my condition can only be attributed to the incredibly innovative treatment of stem cell therapy. I truly cannot thank Celltex and Dr. Jones enough for the wonderful work they do to help people like me. And now, I am even lucky enough to work under Dr. Jones as an intern before I apply to PA school with the eventual goal of treating other people like myself. I cannot wait to see how stem cell therapy continues to flourish and help other people who previously had no hope of any improvement.