Hello! For those who don’t know me, my name is Kayla. I have been asked to create this account to keep family and friends up-to-date, as well as be able to ask and receive help and donations throughout my medical journey. 

I am happily married to my high school sweetheart Russell, we have 4 wonderful kids and we truly love the Lord! Over the past year and a half I’ve been diagnosed with hypothyroidism, POTS, hEDS, ME/CFS, MCAS and gastroparesis. I am currently being fed via a peg-j feeding tube. Here’s some of my story:

*Head’s Up: This update will talk about all of my diagnoses so it will be pretty long! Thanks if you stay to read it all.*

In early 2024, I began feeling very dizzy a lot of the time, and was tested for and diagnosed with hypothyroidism. After a few weeks of treatment my thyroid levels regulated back to normal, but the dizziness only got worse. My doctor kept reassuring me that this was normal and it would eventually get better (I stopped seeing this doctor after this). On April 29, 2024 I was unloading my dishwasher when my back locked up and I couldn’t stand up (I already had disc issues and chronic pain in my back from a car accident in November 2022). After an ER trip for steroids and medicine to relax my muscles (and about 24 hours later) I could finally stand, but I was still in a lot of pain. The dizziness only got worse and after about a week I began passing out. I passed out 4 times at home before it was decided that I needed to go to the ER. I assumed at this point that the passing out was from the back pain.

On May 10, 2024 I was hospitalized for 15 days and after lots of tests I was diagnosed with POTS. At my admission my heart rate was very high, and I passed out after a CT scan (I again thought was from the back pain), which caused the ER doctor to be very concerned about my heart and begin the testing. A heart monitor was placed on me during a large portion of my hospitalization and it continuously showed my heart rate increasing tremendously when I stood up. A cardiologist ruled out other issues and said my heart looked perfectly normal, so they decided to do a tilt-table test which confirmed his suspicion of POTS and I was diagnosed. (Side note that my back was also in the worst pain I had ever felt and the majority of the tests run were of my back which is why my hospitalization was so long.)

During the summer of 2024 I went through physical therapy for my back, and my sweet (and favorite) physical therapist had mentioned the possibility of me having Hypermobile Ehlers-Danlos syndrome (hEDS), and upon bringing it up with my primary doctor I was tested and it was confirmed. hEDS is a connective tissue disorder causing joint instability, chronic pain and it can also affect several systems in your body (GI being one of them). I was also diagnosed with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) which I had struggled with for years (especially the random throat pain a day or so after exertion) but kept being told I just needed to sleep more. 

After working to get my POTS under control over the summer, August 8th I woke up very sick, and assumed I had gotten a stomach bug. After about 2 weeks of being unable to eat normally and being the only one sick in our house, I called my doctor and was given Zofran and referred to GI. I spent the next several months being able to tolerate less and less foods until the point I could only drink two protein or Ensure shakes a day. In November I finally got in with GI and at that point I had lost about 30-40lbs. GI began to do tests which kept coming back normal, but GI was attempting to treat me for gastroparesis despite the tests because that is what my symptoms were pointing towards. 

Unfortunately the treatments didn’t work and I continued to decline, with the exception of a period of weeks where I was able to keep down a vegetarian diet (I still ate less than 1,000 calories every day because I got full to the point of being sick after only eating a few bites). In late March 2025 I began not tolerating any food or shakes and could barely keep down sips of water. After 7-weeks of not eating anything without vomiting, having to consistently get IV hydration from my primary doctor or ER, and more rapid weight loss, my GI decided to send me to Emory for further testing. At this point I had lost 20lbs in one month and over 80lbs in total since August. 

On May 15, 2025 the GI at Emory had me to go the ER where I was admitted for 12 days for electrolyte imbalance and feeding issues. Through the course of my hospitalization I kept vomiting everything up (including medication) and it got to the point where I almost was put in the ICU from my electrolyte levels. A lot of tests were run and finally on May 23rd GI made the decision to put in a peg-j feeding tube so I could finally receive some nutrition. At this point I had lost right at 100lbs since last summer - while I am happy about the weight loss, this is not how I wanted to do it!

Prior to getting the feeding tube, an upper endoscopy was done and a biopsy of my stomach and esophageal tissue revealed elevated mast cells. After a urine and blood sample were tested to confirmed, I was officially diagnosed with MCAS. MCAS stands for Mast Cell Activation Syndrome, and it basically means my body has inappropriate allergic reactions to things it is not actually allergic to. With my current situation my GI system is having an anaphylactic reaction to seemingly everything. The feeding tube bypasses my stomach and feeds formula into my jejunum slowly (basically a drip) throughout the day to keep me nourished. I am SO thankful to the Lord for the nourishment! I also have the gastric portion of the tube for some of my medications and also for “venting and draining” - I’ll spare you the details of this one 😅. 

I am now home and working with my doctors, nurses and nutritionist to find the best formula for my body, and also trying to find what will work for treatment of MCAS. I also have a “soft diagnosis” of gastroparesis, which literally means paralysis of my stomach. Basically my stomach is not digesting anything properly, causing food and liquids to sit in my stomach for a long time which causes severe stomach pain, vomiting, etc. I say “soft diagnosis” because I haven’t been formally diagnosed because I’m unable to complete the test needed to diagnose me (you have to eat solid food with radioactive dye in it and keep it down), but I was told they’re pretty positive I have it as well. 

As you can imagine, this last year and a half has completely turned our world upside down. Instead of being able to care for my children, prepare meals, keep my home and function normally, I am basically bed bound, in near-constant pain, and am back to passing out regularly. My two oldest children are absolute champions through all of this, as they have stepped up and taken on so much responsibility and are doing a great job at handling everything that has been thrown at them. My son especially has shown so much growth and maturity, and takes on the brunt of the responsibility by preparing meals for him and his sisters, helping out with the two littlest girls, and being a leader every day! They both also take care of me when I pass out or am feeling very ill - which always makes me cry. I wish my children didn’t have to take on all of this responsibility, but at the same time I couldn’t be more proud of them for how they are handling things! 

I would love nothing more than for all of this to be resolved and to get my life back - I miss playing (actively) with my children, going on fun dates with my husband, family walks every night and being able to function normally without a second thought. I literally woke up one day to my body completely betraying me and it has completely changed my life since. 

However, the Lord has me going through this for a reason. He will be glorified through my suffering and I pray that I suffer well. I hope to one day be able to advocate for others going through these issues, and to make sure people who are in similar situations know that they are not alone! There is so much that is not posted here but suffice it to say that the medical system is so broken and the way (women especially) are treated when something non-routine is happening to them is very, very concerning. 

This path has been filled with a lot of loneliness, pain and days where I didn’t think I could take another breath. But, this path has also been filled with so much grace, love, and amazing family and friends who have stepped up and gone above and beyond for my family and I. I cannot express the depths of my gratitude for the community that has rallied around us this last year! God has so truly blessed us and I cannot be more thankful. 

If you would like to follow my journey and receive updates (they won’t all be this long I hope 😅) please click the “follow” button and you’ll be notified when I post an update! I’ve also been asked to update my family’s needs here for things like meals for our children, financial needs, transportation to appointments and miscellaneous needs, so I will do my best to keep those up to date as well. I am working to apply for disability to help cover our financial needs but as you may know, this is a long process. So any donations to help towards my medical expenses are so greatly appreciated, as are any offers to bring meals to my family as well! 

If you have read this entire post, you deserve a gold star because it was super long! I appreciate you! As you can tell I am a very open person and try to be as detailed as possible so others can understand what we’re going through. I ask that you please join my family and I in praying for my health to improve so I can at least get back to functioning level, our family to be strengthened through this, and ultimately that God be glorified above all! Thank you ❤️