Where to start? First I should explain what a “zebra” is in this context, since we’re not talking about the cute black and white striped horselike creatures =P In medical school, doctors are taught to look for the obvious problem. The saying goes, “When you hear hoofbeats, think of horses, not zebras.” A zebra is someone who has either a rare condition, or a rarely known condition, or some weird thing no one has ever heard of… an “exotic” diagnosis. I’ve been called a zebra by multiple doctors, but I’m good with that haha at least they know.
I’ve pretty much been unhealthy since I was 12. That was the first time I got mono, and I haven’t been right since. Between my health and my anxiety/depression, I was homeschooled the last few years of middle school and throughout high school on and off. This was the beginning of my isolation from the “normal” world. I struggled with my health and my depression, battling it alone (aside from my mom who is my best friend). I got mono twice more: as a teen, and when I was 20. I took 2 years off before starting college. I knew I wasn’t ready, mentally or physically. I started college in 2010 to get my bachelor’s degree in psychology. Going to school is what made me realize something was wrong, more than what I had been dealing with before. The stairs were hard to climb… I couldn’t go up a single flight of stairs without feeling like I was going to pass out. There’s an elevator that’s intended for use by disabled individuals, and because I didn’t consider myself “disabled” at that point, I suffered using the stairs. I would arrive to class sweaty and out of breath. I started realizing my heart was racing, even just sitting down. I would go to the urgent care for a cold or whatever ailment, and they would say “your pulse is high, are you nervous?” and I didn’t think anything of it. This happened often and still does sometimes. A lot of the time, people would blame my symptoms on anxiety. Yes, I do have anxiety, but this was different. This was my body, something was out of whack. In my college biology class, we did a simple lab in groups of 4. We had to take each other’s pulse and blood pressure. Once everyone submitted their data, our professor compiled a graph. Every single heart rate was in the normal range, except for 1…. mine. I was the outlier. My heart rate was 117 sitting down. I just have to throw this in here because I’m so proud of myself. I finished my last semester of school from home (which sucked) and graduated summa cum laude. It was the best thing that had happened to me in a long time. I needed that high GPA to help me get in to grad school, which may or may not happen now but we’ll see. Back to my body realizing that it hated me haha. Another red flag, my body trying to tell me something wasn’t right. And then I decided to give blood. I don’t know what possessed me to think that was a good idea, feeling the way I did. I didn’t weigh enough to give blood and hadn’t eaten anything that morning because of my nausea and stomach issues, but lied about my weight and said that I ate breakfast so they would let me donate. I would come too realize this was a horrible decision. I felt incredibly ill while I was giving blood, sweaty and nauseous, heart racing. Afterwards, I felt faint and could barely walk on my own. My brother had to come pick me up. The sequence of events with my health getting worse is not clear, it seemed like everything happened gradually and then hit me all at once. I also noticed over the course of time that my feet turned purplish blue when I sat down or stood still for too long. They were also ice cold, along with my hands. It wasn’t until I mentioned my symptoms to my counselor, I think I was 24 at the time, and she said “I have a few clients with this exact problem. They have POTS.” Of course I had no idea what it was, so I went home and googled (yep, good old Dr. Google). POTS stands for postural orthostatic tachycardia syndrome, a type of dysautonomia (autonomic nervous system dysfunction). I read through multiple sites and couldn’t believe it. Everything fit. The heart rate issues, the sweating, the trouble with going up stairs, problems with my stomach, the blue feet, and a few other things I’m sure you’d rather not know about. So I googled some more and found a cardiologist/electrophysiologist who was supposed to be one of the good ones for treating autonomic dysfunction. I made an appointment. When I went there and sat in the waiting area, I noticed that I was the only young person. I started to think hmm maybe I don’t belong here, maybe it’s not that serious and I should just suck it up and deal.
During intake, the nurse asked me why I sought out Dr. J, we’ll call him. I told her that I thought I have POTS. And her response was, “Oh God you’ve been googling.” I found this to be offensive. If it weren’t for my counselor mentioning it and my googling, I never would have figured out what was wrong with me and I would probably STILL be wondering and sick with no answers. Autonomic testing was scheduled. The first being a tilt table test, and let me tell you, this was the worst test I have ever had to endure. They gradually tilt you up to a 70 degree angle, while you’re hooked up to a blood pressure monitor, pulse ox, and EKG. In normal people, this has no effect on them. In people with autonomic dysfunction, things get a little crazy. While tilted, I immediately started feeling nauseous, sweaty, lightheaded, etc. At 19 minutes into the test, my heart rate went to 170 and my blood pressure dropped to roughly 82/48. I started to black out, so they put me down before I would have a chance to pass out. This was a definitive that I had autonomic dysfunction. I went through all the heart testing and my heart is just fine. The tachycardia (fast heart rate) comes from the autonomic nervous system “misbehaving.” I also had hemodynamic testing, to measure blood pooling (if any) and low blood volume. We found that I have severe venous pooling (hence the colorful feet). This means that the vessels in my legs aren’t pumping the blood back up through my body when I stand. It just stays there, which is what causes the lightheadedness and tachycardia upon standing. Secondly, I have moderately low blood volume (red blood cell volume and plasma volume), about 19% low, which also causes tachycardia. Thank God for figuring out what the heck was wrong with me, but what did it mean? There is no “cure” for POTS, and no single medication or treatment that works. It’s all trial and error, and we’re still trying to get things regulated. A good percentage of people with POTS become disabled and unable to work. At this point in time, that’s me, but I’m hoping for a change in the near future. All Dr. J told me was that I needed to eat 5 to 7 grams of salt (it’s a lot) and drink 2 liters of Gatorade a day (to help increase my blood volume), and exercise. I thought, how the hell does he expect me to eat that much salt and drink that much Gatorade when I’m struggling to eat as it was. And exercise?! It seemed impossible. So I got depressed. He wouldn’t prescribe any medication, he wanted me to try the lifestyle changes first, which I tried and couldn’t manage, but he wouldn’t listen. He also told me I needed to be treated locally, instead of by him. The only helpful thing he did suggest was IV infusions to boost my blood volume, but that I would have to get them prescribed through my primary care physician (PCP), which I didn’t have at the time. When I found a new one, she was awesome and I knew from the beginning she would be one of the best doctors I will ever encounter. Since Dr. J had already said infusions would be okay, Dr. S had no problem prescribing them. Yay! My first infusion, I couldn’t believe how much better I felt. I went twice a week to the infusion center at the hospital, and each infusion took 4 hours. After 4 and 1/2 months of enduring 8+ hours a week at the infusion center, and running out of usable veins, Dr. S gave the okay to have a port put in. I was so thankful. The procedure went horribly, but I’ll post about that separately. So I have my port now and I love it; it’s so much easier than peripheral IVs. I was also now able to get my infusions at home!!!!! They taught me to de-access my port, and I’m hoping they’ll teach me to access it soon. Yessss!
My stomach started getting bad I would say before last Thanksgiving, but then got increasingly worse. I’m now to the point where I can’t eat but a few bites without wanting to throw up. I have no appetite. They’re thinking I have gastroparesis, which means slow gastric emptying. It causes a feeling of fullness quickly, can cause a big bloated belly, nausea, pain, and vomiting. I’ve lost 30 pounds and still losing. I’m 5’5″ and at 99lbs. My heart races even more than it did, from lack of nutrition and from being dehydrated despite the infusions (POTSies need 2-3+ liters to drink daily which I can’t manage). I’m getting weaker. My cognitive functioning is worsening. I’m depressed, I’m sick, and I’m tired of it. I did have a recent Cleveland Clinic hospital admission to give a NJ feeding tube a try, but that whole situation was a mess, which I’ll post about separately. On 5/10/16, I’ll see a nutrition doctor who is on a team of doctors with my gastroenterologist, to evaluate my nutritional needs and whether or not we’re going to put in a tube. Honestly, I want the tube. I just want to feel better, and I’ll do whatever it takes.