Postural Orthostatic Tachycardia Syndrome
Finally, the answer that we had all been waiting for (well mostly me, since I was suffering for so long)!
This is the (long) story of how I FOUND my diagnosis.
To give the run down on the WHOLE thing would take up too much of your time. The thing that I want to stress here is that, I am a complicated patient! Simply put, that is why this diagnosis was hard to come by. What makes me complicated? Not the asthma. Not the weird Gastroparesis-like symptoms. The frickin Latent TB, that's what! When you have spent your whole year, sick as a dog on Super Strength antibiotics for TB, you are not looked at as a regular patient. When on LTBI treatment everything you describe is noted as a "side effect". So when my list of "side effects" covered pretty much everything under the sun, it started to cause concern. Concern to mainly me, because "Hello?" I am the one sick day in and day out. My concerning list of infinite "side effects" sparked empathy from my Infectious Disease Dr. but not much more. Looking back, I am shaken by the fact that she did not investigate deeper. The reason for the quotations around side effects is because I did not always believe that they were just that. Possibly, maybe, but not quite sure "side effects". 9 months of treatment came and went and 2 months post treatment, I was still left with these "side effects". See, I told you, not side effects. The only thing that changed was that my pee was no longer orange...Thank you Rifapentine. Oh and I wasn't AS incredibly nauseous. See, something was not right here. I felt like I was ripped out of a Kids Highlight's magazine because I was stuck in a game of "What does not belong?" Which symptoms were not like the rest and could maybe point me in the general vicinity of a diagnosis.
For better or for worse, I was on my own with this. I had since met a wonderful pediatrician, who there are not enough joyous words to say about this woman. She is like the Arizona Robbins (from Greys Anatomy) of my general peds. practice. I was so hesitant to see this doctor because I had had nightmarish experiences with pediatricians in the past (that will certainly be another post) so I was quite skeptical. Anyway, she won me over and it was so comforting to finally have a GP in my corner. Before that, my pulmonologist was pretty much my GP, which was yeah, not really doing it.
2 months post TB meds and I was still sick. I had adopted this weird mindset of "It is what it is and whatever it is I will just have to adapt". See, not quite pessimistic, but I was certainly no optimist. I was caught in a trance between what I felt and knew about my body, which was 'something is not right', and what all my doctors have been saying to me for years, 'Just give it time.' That statement I find troubling. Just give it time?! Hello, that is not something you tell to a chronically ill teenager, I can tell you that! All I can say is that I have not gotten a B.S., an M.D. nor am I board-certified in anything but I do seem to know a lot more about empathy and patient care then most of the doctors that I have seen. I also will take full faith in saying that I know my body best. So when I am telling you that I am sick, I am sick.
So my symptoms. The biggest one was fatigue, I know right? How broad? But that is what it was. Along with my crippling fatigue, there was lightheadness, extreme weakness, brain fog, heart palpitations, a nearly constant racing heart rate, and headaches. Now, after a year of hellish antibiotics, this symptoms were honestly not that bad, and I was feeling ok and managing my life fine with these chronic symptoms, but why should I have too? Because, at the end of the day, nobody believed me yet. I knew that it wasn't just the medications, there was no way; even my doctor had said that! So, I just waited. I waited until it got worse. Oh boy, did it get worse. The block that made this Jenga puzzle come crashing down was going back to my job at In-N-Out Burger. I loved that job, but it was apparent that it was way too physically demanding for me. I had one BAD shift that left me thinking, "I can not live like this anymore", I should not be staring at a cash drawer and not able to make simple change. I should not have to lean all my weight onto the counter in front of me, in order to keep me upright! I am a 17 year old with a 4.0 GPA and I am on track to become doctor, I should NOT have trouble making change and keeping my body vertical. My brain and my body were not the same. Not only were they not the same, but they were damaged. They were damaged and I needed help to fix them.
A couple days after that shift from hell, when I finally stopped the pity party, my curiosity took the front seat and I sat down with my trusty friend, Google, and typed in the following phrase.
"What does POTS stand for?"
I have no idea what made this acronym come to my head. Certainly not the fact that I thought that I had it! This story is probably just as strange for you, as it is for me, I am sure of it. 6 months earlier while on a family vacation to Puerta Vallarta, Mexico I was sitting at the pool reading through the blog of a friend I had met in passing at grief camp. She had a blog about her journey with chronic illness and I laid at the pool drinking my virgin pina colada and reading about her battle with POTS and EDS. As a medical nerd fascinated by anything and everything medical, I was engaged by her writing and still am to this day. I also thought it was 'cool' that we had both lost a parent and were both sick. See I told you, strange!!
All of a sudden, my entangled mess of symptoms started to make sense. All of them! Down to the fact that I had been having near-fainting spells every time I went from a sitting to standing position... For YEARS! Also, the random severe GI symptoms seemed to be perfectly explained by POTS.
This was it. It had to be. I had never had this feeling before, but I anticipate that it is similar to the feeling a doctor gets when they finally diagnose a complicated patient. I am that complicated patient. Except, the doctor wasn't the one with "the feeling" in their stomach, it was me.
Within the week, I saw my amazing pediatrician who mostly agreed with my hypothesis and referred me out to cardiology at my local Children's Hospital (AKA my second home). She was more shocked than anything and I could tell she did not want to believe me because, POTS doesn't have too many treatment options. I then saw the cardiologist, who specializes in adolescents with POTS, and he confirmed the diagnosis and then ordered some more tests. With a family history of Marfan Syndrome and life-threatening heart defects/arrhythmia's, and a murmur of my own, he wanted to be sure he wasn't sending me home with a ticking time bomb in my chest.
So as you can see, my story has a somewhat happy ending. The answer was found, the puzzle solved. Could most of my suffering be avoided? Possibly. All I care about now, is that I have a care team that has my back, understands my physical and emotional needs, will support me no matter what, and above all, believes me! The fact that some patients have to fight SO hard just for a doctor to take them seriously, disgusts me. As someone who WILL go into the medical field, this keeps me up at night.
If you take anything from this post, let it be this: Always be your own advocate. That may not mean, diagnose yourself on WebMD, but always stand your ground and if you think something is not right, fight for an answer! Do not expect the first doctor to be the one. Do not be ashamed to get a 2nd, 3rd or 4th opinion. Someone will listen to you. Just keep fighting until you find a doctor, who like me, will NEVER EVER turn someone away with "vague" symptoms that could be psychosomatic. Fight for you. Fight for your body! In the end, it is yours, and only yours to fight for!
Stay Strong,
MJ
This is the (long) story of how I FOUND my diagnosis.
To give the run down on the WHOLE thing would take up too much of your time. The thing that I want to stress here is that, I am a complicated patient! Simply put, that is why this diagnosis was hard to come by. What makes me complicated? Not the asthma. Not the weird Gastroparesis-like symptoms. The frickin Latent TB, that's what! When you have spent your whole year, sick as a dog on Super Strength antibiotics for TB, you are not looked at as a regular patient. When on LTBI treatment everything you describe is noted as a "side effect". So when my list of "side effects" covered pretty much everything under the sun, it started to cause concern. Concern to mainly me, because "Hello?" I am the one sick day in and day out. My concerning list of infinite "side effects" sparked empathy from my Infectious Disease Dr. but not much more. Looking back, I am shaken by the fact that she did not investigate deeper. The reason for the quotations around side effects is because I did not always believe that they were just that. Possibly, maybe, but not quite sure "side effects". 9 months of treatment came and went and 2 months post treatment, I was still left with these "side effects". See, I told you, not side effects. The only thing that changed was that my pee was no longer orange...Thank you Rifapentine. Oh and I wasn't AS incredibly nauseous. See, something was not right here. I felt like I was ripped out of a Kids Highlight's magazine because I was stuck in a game of "What does not belong?" Which symptoms were not like the rest and could maybe point me in the general vicinity of a diagnosis.
For better or for worse, I was on my own with this. I had since met a wonderful pediatrician, who there are not enough joyous words to say about this woman. She is like the Arizona Robbins (from Greys Anatomy) of my general peds. practice. I was so hesitant to see this doctor because I had had nightmarish experiences with pediatricians in the past (that will certainly be another post) so I was quite skeptical. Anyway, she won me over and it was so comforting to finally have a GP in my corner. Before that, my pulmonologist was pretty much my GP, which was yeah, not really doing it.
2 months post TB meds and I was still sick. I had adopted this weird mindset of "It is what it is and whatever it is I will just have to adapt". See, not quite pessimistic, but I was certainly no optimist. I was caught in a trance between what I felt and knew about my body, which was 'something is not right', and what all my doctors have been saying to me for years, 'Just give it time.' That statement I find troubling. Just give it time?! Hello, that is not something you tell to a chronically ill teenager, I can tell you that! All I can say is that I have not gotten a B.S., an M.D. nor am I board-certified in anything but I do seem to know a lot more about empathy and patient care then most of the doctors that I have seen. I also will take full faith in saying that I know my body best. So when I am telling you that I am sick, I am sick.
So my symptoms. The biggest one was fatigue, I know right? How broad? But that is what it was. Along with my crippling fatigue, there was lightheadness, extreme weakness, brain fog, heart palpitations, a nearly constant racing heart rate, and headaches. Now, after a year of hellish antibiotics, this symptoms were honestly not that bad, and I was feeling ok and managing my life fine with these chronic symptoms, but why should I have too? Because, at the end of the day, nobody believed me yet. I knew that it wasn't just the medications, there was no way; even my doctor had said that! So, I just waited. I waited until it got worse. Oh boy, did it get worse. The block that made this Jenga puzzle come crashing down was going back to my job at In-N-Out Burger. I loved that job, but it was apparent that it was way too physically demanding for me. I had one BAD shift that left me thinking, "I can not live like this anymore", I should not be staring at a cash drawer and not able to make simple change. I should not have to lean all my weight onto the counter in front of me, in order to keep me upright! I am a 17 year old with a 4.0 GPA and I am on track to become doctor, I should NOT have trouble making change and keeping my body vertical. My brain and my body were not the same. Not only were they not the same, but they were damaged. They were damaged and I needed help to fix them.
A couple days after that shift from hell, when I finally stopped the pity party, my curiosity took the front seat and I sat down with my trusty friend, Google, and typed in the following phrase.
"What does POTS stand for?"
I have no idea what made this acronym come to my head. Certainly not the fact that I thought that I had it! This story is probably just as strange for you, as it is for me, I am sure of it. 6 months earlier while on a family vacation to Puerta Vallarta, Mexico I was sitting at the pool reading through the blog of a friend I had met in passing at grief camp. She had a blog about her journey with chronic illness and I laid at the pool drinking my virgin pina colada and reading about her battle with POTS and EDS. As a medical nerd fascinated by anything and everything medical, I was engaged by her writing and still am to this day. I also thought it was 'cool' that we had both lost a parent and were both sick. See I told you, strange!!
All of a sudden, my entangled mess of symptoms started to make sense. All of them! Down to the fact that I had been having near-fainting spells every time I went from a sitting to standing position... For YEARS! Also, the random severe GI symptoms seemed to be perfectly explained by POTS.
This was it. It had to be. I had never had this feeling before, but I anticipate that it is similar to the feeling a doctor gets when they finally diagnose a complicated patient. I am that complicated patient. Except, the doctor wasn't the one with "the feeling" in their stomach, it was me.
Within the week, I saw my amazing pediatrician who mostly agreed with my hypothesis and referred me out to cardiology at my local Children's Hospital (AKA my second home). She was more shocked than anything and I could tell she did not want to believe me because, POTS doesn't have too many treatment options. I then saw the cardiologist, who specializes in adolescents with POTS, and he confirmed the diagnosis and then ordered some more tests. With a family history of Marfan Syndrome and life-threatening heart defects/arrhythmia's, and a murmur of my own, he wanted to be sure he wasn't sending me home with a ticking time bomb in my chest.
So as you can see, my story has a somewhat happy ending. The answer was found, the puzzle solved. Could most of my suffering be avoided? Possibly. All I care about now, is that I have a care team that has my back, understands my physical and emotional needs, will support me no matter what, and above all, believes me! The fact that some patients have to fight SO hard just for a doctor to take them seriously, disgusts me. As someone who WILL go into the medical field, this keeps me up at night.
If you take anything from this post, let it be this: Always be your own advocate. That may not mean, diagnose yourself on WebMD, but always stand your ground and if you think something is not right, fight for an answer! Do not expect the first doctor to be the one. Do not be ashamed to get a 2nd, 3rd or 4th opinion. Someone will listen to you. Just keep fighting until you find a doctor, who like me, will NEVER EVER turn someone away with "vague" symptoms that could be psychosomatic. Fight for you. Fight for your body! In the end, it is yours, and only yours to fight for!
Stay Strong,
MJ
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