Why I Started LahSET: My Healthcare Journey

On October 28th, 2022, everything changed for me. It was the first time I called 911, the first time I rode in an ambulance, and the first time I was a patient in the hospital (besides when I was pregnant and delivered my kiddos). I was used to being the caregiver, the nurse. I had been sick for the previous few days with fatigue and mild GI symptoms, but nothing too worrisome. The day I called 911, I could feel my heart pounding out of my chest, I couldn’t breathe, I was hot, but freezing at the same time. I felt like I was going to vomit and black out. I was shaking. I didn’t know what was happening. As a nurse, a million things go through your mind. You think back to every patient you have had in the past. Is it a-fib? Is it a bowel obstruction? Am I septic? Do I have COVID? Something has to be wrong.

The ambulance ride felt like it took forever and based on my normal EKG and vital signs, I was placed in the lobby. This is the sickest I had ever felt in my life. My symptoms were all subjective. I did not feel validated or heard. Being an ER nurse for 8 years, I understood how triage works and the waiting process, but at that point in time, I could not understand. I was finally taken back about 30 minutes later. The ER physician treated me mediocre and completed all of the tests I thought should have been run, and of course, everything came back normal. I was grateful for no emergency, but could not comprehend how I was feeling in comparison to my normal test results. They gave me some medicine for anxiety (which I had never tried before) and even prescribed me something for home. No anxiety medications took away any of my symptoms.

After returning home with the same symptoms I had gone in with, I made an appointment to follow up with my Primary Care Provider (PCP) the following week. The days leading up to seeing my PCP, I developed large amounts of gas in my abdomen. I was belching every couple of minutes, all day long. I could barely eat because I felt completely full at all times. My bowel sounds we hyperactive and I felt extremely anxious. Weakness began to set in due to not being able to eat much. I drug myself out of bed and into the car so that my husband could drive me to the doctor. I could barely sit in the waiting room. When I got to the clinic room, all I could do is lay down. My PCP determined I had some kind of GI upset, most likely from a virus, and gave me a medicine to decrease the acid in my stomach. I got no relief at all. She also recommended that I see a GI specialist. At that point, I was even too sick to pick up the phone to make my own appointments. My husband called to make the appointment to be seen and they said they wouldn’t be able to see me for a month. This was the worst news ever. My husband demanded I be seen that week with how sick I was, and magically, an appointment was able to be made for the same week. I kept resting, hoping, and praying that this “virus” would leave my body soon.

I returned to the ER in the middle of the night after attempting to go to sleep for several hours with my belly full of gas and having low grade fevers. Again, I continued to worry that something was wrong that no one had found earlier. Do I have an ulcer that caused an intestinal perforation? Am I leaking stool into my abdominal cavity? The ER physician ordered an abdominal CT, which showed tons of gas (duh!), but nothing else. The ER physician sat down by me and said, “Yeah, you seem super anxious”, to which I replied, “Yes, I am very anxious, I’ve been laying in bed for several weeks now, wasting away to nothing with no answers”. That ER visit greatly discouraged me and discounted everything I was feeling. I still had no answers. I laid in bed for a month. I would cry hearing my kids and husband downstairs, wishing so bad I could be down there with them. I had no energy to even hold myself up.

After my husband talked to a few of his co-workers about my symptoms, someone had mentioned that their wife was diagnosed with Celiac Disease out of nowhere and that maybe eating a gluten free diet would help give me some relief, so I began eating gluten free (or so I thought). Who knew soy sauce and broth has gluten in it? What the heck? I thought I’d be safe with no bread and no pasta. NOT! I did not feel an immediate difference going gluten free. I also decided to cut out caffeine on my own to see if it would help. Now I couldn’t have two of the things I loved the most: a chick fil a fried chicken sandwich and a Nespresso latte (which I had every morning).

After seeing a GI Nurse Practitioner (NP), they ordered an endoscopy and colonoscopy for me. At that point in time, I had lost about 10 pounds. Also, let’s not skip over the fact that the GI NP did not even listen to my abdomen and had horrible bedside manner. I felt like she gave zero craps about me. She said I would need to eat gluten for accurate endoscopy results. I returned for my endoscopy and was wheeled back by a male nurse. Before I knew it, I was in the procedure room with a male nurse and a male physician by myself. I did not think that the situation was right, but I also had never had an endoscopy before. Maybe this is normal? I’m sure I’ll be awake, I just won’t feel anything. Next thing I know I’m being woken up in a recovery room by a nurse telling me to get dressed so I can leave, all while vomiting into an emesis bag. I see my husband helping me get things together so he can drive me home. I learned that if I don’t feel comfortable with a situation, I need to say something right away, and should have done so. My husband told me that I was making friends with all of the recovery nurses. They liked my neon yellow nails and said I should work there. Sounds like I had fun, I just don’t remember any of it. I vomited for the next day and a half. My endoscopy biopsy results basically showed inflammation everywhere, but that they could not determine what it was from or say that it is for sure Celiac Disease. They ordered a dietician to call me, but no one ever called, even after following up about no one ever calling me. I ended up researching it all myself. The colonoscopy was cancelled since it was “maybe probably” Celiac Disease. I was told to remain gluten free and that they would retest me in a year to see if being gluten free for a year helped. I was thinking, I sure hope that whatever this is is gone in a year.

I remained gluten free and symptoms began to improve, but never got completely better. From around Thanksgiving to Christmas, I felt better to the point that I could go out again, which was terrifying after staying at home for almost a month. I was constantly worried and fearful that I would have an episode similar to the one I had when I called 911. My bowel habits were definitely abnormal and something I had to plan around when going out. I am going to petition the Costco bathroom locations. However, it was better than being in bed.

On Christmas, I began to feel sick again with all of the same symptoms. I didn’t do anything different that day. It was back. NOOO!!! I spent the next month lying in bed. Again.

I was lucky enough to have some wonderful friends and family by my side, whether they were physically here or checking in on me from another state. One friend I had recommended that I go see her chiropractor. She said they had helped her and that they have a holistic approach to care. I had not grown up going to chiropractors and thought they were specifically for musculoskeletal problems, but would try ANYTHING to feel better. I went to the chiropractor for the next 6 months and was getting adjusted several times a week. I also began taking several supplements and was told I had Yersinia. I heard differing opinions about being treated for Yersinia and still don’t know much about how that affected me. My PCP was also still running numerous amounts of tests on me to try to figure out why I was still sick. She tested me for Lyme Disease, adrenal gland problems, pheochromocytomas, pretty much anything and everything that it could possibly be. Shout out to my PCP! Everything kept on coming back normal. It’s sad to say that, at that point, I wanted something to be wrong, so that it could be fixed. She referred me to The University of Iowa, as well as The Mayo Clinic. The Mayo Clinic denied being able to see me, but I did make an appointment with The University of Iowa.

I prepared for my appointment, making sure they had all of my documents and that they were well prepared for my arrival. I even sent them a document I had made myself of a timeline of my symptoms and what tests I had done and the results. When the appointment came, the physician walked in and said “What are you here for? Some routine care? Do you need some vaccines?” I knew I would be receiving no help at all. I was right. I left with no answers and no new ideas.

With a friends help; I was able to talk to a GI specialist in Ohio over video and it was, thankfully, completely free. She suggested that I might have POTS (Postural Orthostatic Tachycardia Syndrome) and should be seen by a neurologist at the Mayo Clinic. I referred myself with their online self-referral button and answered all of their questions. To my surprise, they offered me an appointment 3 months later. Something was better than nothing. My PCP referred me to the Mayo Clinic 3 times and I was rejected all 3 times. I referred myself and got in.

In July, I stayed in Rochester for one week with my husband in a hotel. We had to pay for the hotel ourselves and shuttle back and forth to The Mayo Clinic. The Mayo Clinic ran like a fine oiled machine and the physicians were all amazing. The first physician I saw was a neurologist and, after talking with me, immediately said “You have anti-POTS”, meaning she didn’t think I had what I had come there for. I had numerous POTS tests, saw a GI physician, and was also told I needed to see an OBGYN. She joked, saying “You might be able to see OBGYN in 2025”. I didn’t laugh. I had to eat radioactive eggs and a quarter pound of turkey (weird I know!) for a gastric emptying test. I definitely felt like a test subject. It was also overwhelming to see all of the people who looked deathly ill. One day, I walked around wearing a heart monitor, a blood pressure monitor, and my pee that I collected for 24 hours. Only at The Mayo Clinic would that be considered normal. I kind of wanted to high five the other patients I saw with pee jugs. 24 hour pee twins! At the end of the week, I knew nothing. I had done all of these tests and then knew nothing. It was an exhausting week with no answers. I could see some results, but did not know what some of them meant. For example, I had a sweat test and the result was: no sweat. What does that mean? Normal or not? The GI physician did order a genetic Celiac Disease test. He said, “If it’s negative, you know you for sure don’t have it, but if it’s positive, you could have it or not have it. A third of the population tests positive for it without having it.” I was hoping for a negative test so that I knew for sure. It came back positive. I also talked to an exercise cardiologist who was able to review my exercise stress test. She was amazing and said that I had been deconditioned from being sick for so long (I had been alternating running 2-3 miles and rowing 4000 meters every day before getting sick). She said to take it slow and work my way back up to that. I was attempting to push myself too hard, to where I used to be before I had gotten sick.

I am happy to say that a week after I returned from The Mayo Clinic, I started feeling so much better. I slowly started easing back into working out. I’d row 500 meters, take a breather, then do another 500 meters and working my way up from there. I am currently back to where I was before I got sick. Thank God! Last Friday, I had my video follow up appointment with the neurologist from The Mayo Clinic. She went over all of my results and mentioned that everything looked normal. I would have loved to get an answer for why I was sick for almost a year, but I didn’t. I still have an OBGYN appointment scheduled at The Mayo Clinic in October. We’ll see what they say.

I do know that this illness happened to me for a reason and that I realized how much of healthcare goes wrong for people. The only reason I knew or questioned anything was because I am a nurse. I thought I was an empathetic nurse while I worked in hospitals, but I realized, I was only to a certain degree. I will never act like I know exactly what someone is going through, but it’s much easier to understand what a patient is going through when you become a patient. There were times when I was explaining what containers I needed from the lab to the lab techs, asking why my lab hadn’t resulted yet (it was not run correctly), questioning why I needed to redo a lab I had just done (lab’s mistake again). All I could imagine through this, was one of my grandparents dealing with this all alone. Driving back and forth for labs and appointments and healthcare workers forgetting to call them and update them. We don’t have an answer, so sorry. It broke my heart. I only knew these things because I was a nurse and in my right mind.

In all honesty, I don’t know what made me better, but I am thankful to my family, friends, and healthcare workers who truly cared about me and what I was going through. At times, I was angry and sad at what was happening to me, but I was also trying to contemplate why. The why was: teaching me to not complain about my imperfections that are so minute, be thankful for the time I get to spend with my kids and husband, realize it’s not so important to have a latte every morning or a chick fil a sandwich for dinner, be grateful to be able to stand at my counter and brush my teeth and ultimately gave me the idea and nudge that I needed to start this company… this list could go on and on.

I am dedicated to making healthcare better for people. I want to walk alongside the sick and those who may need some extra care and attention. The fact is, we know healthcare facilities are short-staffed in every aspect of care. They don’t have the time to spend with you, even if they want to. I am here for you. I will research. I will advocate. I will help you every step of the way.

“God allows us to experience the low points of life in order to teach us lessons that we could learn in no other way” -C.S. Lewis