cardiac

POTS, Not Pans

~ KJ ~ 14 Comments

Part of my hesitance in going to the doctor is because I don’t want any more diagnoses. I feel like I have enough. Hell, even disability forms have spaces for 10 diagnoses, and I had already exceeded that. I don’t want any more diagnoses. I don’t need any more problems.

As much improvement as I’ve made in seeking out medical help, as soon as the possibility of something more comes up, I push it so far back into purposeful forgetfulness in the hope that it will never come up again. I did it last month when I attended a COPD support group. The respiratory specialist pulled me aside after group, asked me a few questions about my history, and recommended I come back to be tested for Cystic Fibrosis. She seemed concerned. I told her I would come back; I never did.

It’s a lot easier to forget shit when it doesn’t affect you every day. I’ve had breathing issues most of my life. I’m used to it.

What I’m not used to is passing out onto the floor. That I can’t forget. The concussions. The bruises. The people who have to surround me when I get up because they all know I’m going to end up on the ground unless they catch me. The very thing that led to me losing my job.

I thought I had answers, at least in part. Clearly something was off with my heart rhythm. They said it was an arrhythmia. They just couldn’t tell me which one. That’s why I had the cardiac implant. It was going to tell me what was wrong with my heart.

So when I went to my cardiologist appointment on Tuesday, I was fully expecting a simple answer. Just tell me what arrhythmia it is. Just tell me how we can fix it. I need to work again. I need to be normal.

But that’s not how the appointment turned out. The doctor scanned through the information from my monitor. I had the PACs and PVCs as suspected. He could have prescribed a beta blocker to help regulate my rhythm, but because of my age, he thought the risks were greater than the benefits. But even with that, the irregularities weren’t enough to cause my consistent passing out.

The cardiologist sat there and started to tell me there was nothing left that he could do, that he ran all of the tests he could and none of them could fully explain my symptoms. He brought up seeing a neurologist to rule out seizures, but I knew these weren’t seizures. I knew that something was wrong. But I felt defeated. All I could say was okay.

But my friend is not like me. She was not about to back down and say okay and leave my doctor’s office without any real answers. And I think the doctor realized that. So he brought up more things, some fancy words, but still nothing concrete. He mentioned something about blood pressure, and I told him well that’s complicated in itself. He asked me to explain. I reminded him that’s what led me back to him in the first place, when the PHP program found an irregularity in my blood pressure — high in one arm, low in the other. Drastically low at times.

Something must have clicked in my doctor’s mind, because he told us to follow him to his office. He pulled up my records on his computer. And the more my friend described what was happening to me, the more firm he felt in his belief about the diagnosis.

I have POTS: Postural Orthostatic Tachycardia Syndrome. It explains why my heart rate can go from the 30s to the 130s in a matter of minutes just from moving. It explains why I pass out when I stand up, or after I’ve been sitting down for a long time. It explains why my head gets so foggy sometimes out of nowhere. It explains why my blood pressure changes so drastically. POTS explains that all.

I got an answer. A diagnosis. But it’s not an easy one. In reality, I would rather my issue just have been an arrhythmia. They are easy to fix. Simple. POTS isn’t so simple. POTS isn’t so easy to fix. And when you really start to look into it, it’s only a piece of a much larger puzzle. Because POTS is never just POTS. POTS is a part of a larger problem.

POTS is one form of Dysautonomia. A big word, but basically it’s the dysfunction of the autonomic nervous system, which controls all of the automatic processes in the body: heart rate, blood pressure, breathing, digestion, and temperature control. It’s also the system responsible for the fight-or-flight response. The system that’s been overworked since I’ve been born.

So much makes sense now, and not just the passing out. People with Dysautonomia can have problems with malnutrition. They can have trouble regulating their temperature. It explains why I always end up vitamin and protein deficient even when I’m eating right. It explains why I can’t feel temperatures like everyone else can, why I don’t realize when it’s too hot or too cold. It explains why I can’t always feel pain when something is hurt, and when I don’t realize I am sick when I’m really sick. The system that’s responsible for the basic necessities of life is broken.

There’s no direct link between Dysautonomia and trauma, but I can’t help but think that there’s a connection. The very system that plays a role in the body’s response to trauma is the same system affected by these conditions.

Maybe the autonomic nervous system is like a car. A car only lasts for a certain amount of mileage before it starts to break down; that’s how it’s designed. If you drive it a lot, it’s going to break down faster.

What if that’s how the ANS was designed? Maybe it’s supposed to last a good 80 years of regular use. But when it’s overused, when trauma happens and it’s constantly activated for years and years, it breaks down faster. Because the human body wasn’t designed to endure consistent trauma. It’s why trauma survivors rarely suffer from just the psychological effects of what happened to them. There’s physical damage, too.

It frustrates me in more ways than one. Another diagnosis, and one that I can’t ignore. And even though there are things I have to do now — take medication, increase my salt and fluids, wear compression socks to push the blood back to my heart — it’s not a cure. I’m still going to pass out. I’m still going to be affected. It’s another disabling condition.

I sat in my cardiologist’s office in wavering denial. My friend asked him about my ability to work, how no one wants to employ someone who’s going to pass out like I do. She asked him straight out if I could work, and he wouldn’t give a straight answer. He circled around to talking about keeping myself safe. He wouldn’t tell me what I really wanted to hear.

It’s another diagnosis I didn’t need.

You’re so young

~ KJ ~ 3 Comments

But you’re so young.

I heard that exact phrase at least two dozen times over the last two weeks.

It wasn’t the first time I heard it. I’m sure as hell it won’t be the last. But hearing it over and over and over again day in and day out made me want to scream out loud. I didn’t, of course. I only screamed on the inside.

I know that the people saying it weren’t saying it to be negative, but they didn’t realize that every time I heard that phrase, it was like a tiny jab to my already damaged heart. I know I’m young. You don’t need to remind me. I know I’m sick. You really don’t need to remind me.

I can’t blame them, though. I’m 31 years-old with a disease that affects the elderly. They see my COPD diagnosis and they don’t understand it. And then they want to ask questions. How much did you smoke? How long were you a smoker? I can never seem to tell them I only started smoking after I got sick. I can never explain to them how I grew up and lived in a (literal) toxic environment, how I spent most of the last 17 years in and out of hospitals. It wasn’t just the cigarettes that gave me COPD. It was my life.

It’s hard for many people to realize just how much trauma affects the body. I see it all the time. I’ve never met a person with PTSD who wasn’t struggling with at least one type of physical problem. The effects of trauma aren’t just on the mind.

My body started giving up long ago. It wasn’t just about the broken bones, the bruises, the damage it withstood on a regular basis. Every last bit of energy is spent trying to survive. After awhile, the body can’t fight anymore. There’s no way to win the war. So things break down in ways they shouldn’t, way earlier than they should. Broken mind, broken body.

But most people don’t understand the connection. They don’t want to hear about the trauma, about the battle you endured that brought you to this point. They want hard facts spoken in brevity.

I don’t bother with facts. I don’t bother with the truth. Just bad luck, I guess. That’s what I tell them. As if luck has been the one and only cause of my destruction. Luck took away the cartilage in my knee. Luck caused me to get COPD. And now luck has led me to a heart problem that has yet to be solved.

Fuck luck. Fuck genetics. I want people to realize the connection to trauma. I want them to stop telling me I’m so young, and start asking how I really ended up here. I want somebody to stand up and realize that I am breaking, not because of luck, not because of genetics, and not all because of my own doing. There was and is something more here.

I want to be able to tell them the truth. My heart is weak because it’s tired. Thirty one years of my life has been constant stress and fear. I’m surprised it still beats at all, to be honest. Why hasn’t it given up on me yet? Why does it try to quit and then get knocked back into beating?

And just when I thought it was over, the appointment was done, the surgery was done, the questions were done — it happened again.

The manager of cardiac unit called me the following day to check and see how I was doing post-surgery. I told her everything was okay (except for some mild pain), and then there was an awkward silence. Then I heard her again. Do you mind if I ask?  You’re so young, why did you have this done? We’ve only ever had to do this with older patients.

I really wanted to say wait, you mean not every 30-something has a heart monitor implanted into their chest? Instead I told her the basic passed out a few times, they found an arrhythmia, completely downplaying the fact that I passed out way more than a few times and I had a collection of issues that included more than just an arrhythmia.

She’s right. All these people are right. I am too goddamn young to be dealing with this shit.

But I am dealing. I am living life as if nothing is wrong. Because that’s how I learned to live.

And that’s what got me here.

Changes, Part 2

~ KJ ~ 9 Comments

I wish I could say I knew what was going on with my health. Since I last wrote, things have only gotten worse, and answers are very few and far between.

My tests revealed a stenosis in my left shoulder. It was enough to explain some of my symptoms, but not all of them. It didn’t explain the passing out or the dizziness. It may have explained the difference in blood pressure, but aside from that, something else was going on, but no one knew what.

As I sat in his office, I started to feel it again. The feeling I have trouble explaining. It starts as a tightness in my chest. My head gets heavy and I start to get dizzy. It feels like a grand effort just to keep upright. I remember him telling me I didn’t look right. He asked me if I was on anything (insinuating drugs, which I don’t blame him for, because he does know my history). I couldn’t tell him what was going on. I just told him I was tired. I told him I’d be okay. If I had just been able to tell him in that very moment what was going on, maybe he could have helped me better, because what has followed since then has been a series of concerning and frightening events.

I couldn’t tell you the exact date, though I could look through the growing pile of hospital papers I have acquired in the last several weeks alone because of this. I was sitting in group at PHP. I felt the pain in my chest. I tried to focus on breathing, but the pain wouldn’t go away. My heart was fluttering. My head felt weird. Dizzy, empty, full, I can’t describe it. I remember sitting in the chair after group unable to move. A few people walked by and asked if I was okay, but I couldn’t answer. My body was so weak, I could barely speak. I remember the therapist sitting in front of me asking if I was okay. The next thing I remember, I was flat on my back on the floor confused as fuck.

Apparently I had passed out cold right out of the chair and onto the floor. All I could do was apologize. The therapist was there, the nurse, and the psychiatrist. They checked my blood pressure and pulse, and both were way too high. Not my normal at all. It felt like my heart was going to beat out of my chest. I tried to calm down but all I could was panic. I kept telling them I was fine, but they had called 911 and I ended up being rushed to the emergency room.

I remember the paramedic checking my blood pressure in the ambulance and it came up extremely low; 60/40. He asked if I felt okay. I told him I’m fine, I’m just tired. My usual response, you know. He figured it was just a bad read. He didn’t know any better. He didn’t know all the times my blood pressure readings were so extreme the nurses and the paramedics just assumed they were “bad reads”.

The hospital did blood tests, a CT scan, x-ray. It wasn’t a heart attack. But they couldn’t give me any answers. They listed it as dehydration, and told me to drink more and make sure I was eating enough. I could give them that. I probably wasn’t eating enough.

So I made an effort to eat more. I ate a granola bar for breakfast. I bought a snack for between group sessions at PHP. I hoped this all would stop if I just ate more.

But it didn’t stop. I got that feeling again. The chest pain, the weird feeling in my head.  I sat in the nurse’s office in fear that I was going to pass out. She checked for a pulse and could barely feel it. She checked the other side and noticed an irregularity. Not only was my pulse slow, but my heart was skipping a beat. She felt it again and it was still the same. The total opposite of what it was when I passed out before. Instead of my heart racing, now it was barely beating at all. They called 911, and I ended up in the hospital once again.

This time was no different. My blood tests were fine. No heart attack. I stayed bradycardic, but otherwise they weren’t concerned enough to keep me there over night. I was discharged once again with no real answers.

I think the nurse and psychiatrist at PHP were as frustrated as I was. The nurse asked if I could have the hospitals send copies of my EKGs sent to them, so I called up both hospitals I was in and they quickly faxed them over. The psychiatrist noticed something in both EKGs that no doctor or hospital every told me. There was an irregularity in both EKGs, which no one ever addressed and everyone seemed to ignore.

And as if twice weren’t enough, it happened a third time. I was within group and got the pain in my chest. I tried to stay calm and sit through group, but it became increasingly difficult to focus. The woman sitting next to me asked if I was okay, because she said I did not look good. I said I was fine. I didn’t want to go through this again. I just wanted it to go away. But it didn’t. I hesitantly got up to go and ride it out in the bathroom, hoping the pain and dizziness would pass. The nurse saw me on my way there and she knew just by looking at me that it was happening again. I told her I was fine, but I don’t think she believed me, because when I made it out of the bathroom (still no better than before), she and the psychiatrist made me sit down and she took my pulse and blood pressure.

And there it was again. I had a weak pulse, and my heart would skip beats, just like before. I told her I was fine. She kept asking if I was having chest pain and I didn’t want to answer, because I knew if I said yes, she would call 911. The psychiatrist called my cardiologist (who happened to be on call at the hospital) and talked to him directly. He told me to come straight in. Another hospital visit, just days after the one before.

This time wasn’t quite the same story. The doctor came in and told me I had an arrhythmia. He explained that something was off in the part of my heart that controls how it beats, but they just weren’t sure exactly what the problem was yet. They were checking for AFib and put me on a 24-hour monitor right away. Finally, here was an answer. Not a full answer, but certainly better than dehydration.

But it wasn’t a cure. I was still passing out. One morning on my way to work, I passed out as I was closing the front door to the house and fell down stairs of the front porch, sliding down until I hit my head on the concrete. I woke up after 10 or so minutes, I don’t even know. My only worry was getting to work on time. With a scraped up head and bruised up legs, I managed to make it to work on time. I told myself I was okay. I said everything was fine. But it wasn’t fine. My head was pounding, my eye was swollen, and I apparently couldn’t say a coherent sentence without slurring my words. My supervisor was worried I had a concussion so he sent me home. All I could say was I was sorry.

That wasn’t the last time I passed out. Last weekend, I collapsed on the front porch during a retreat for my support group. They called 911, but I refused to go to the hospital. I’m sure the paramedics weren’t happy with me. I told them my list of problems: a stenosis in my left shoulder, heart arrhythymia, tachy/brady, irregular blood pressure, COPD. I told them I’ve been through it enough to know I’d be okay. The hospital wouldn’t do anything for me anyway but have me rest.

I’ve passed out at home (that time, at least, on a carpeted floor). I’ve come close to passing out in work, at stores, even walking across the street. It’s gotten to a point that I’m afraid to go anywhere because I don’t know when I’m going to pass out, and I don’t want to be alone if and when it does happen. Almost every day now, I get the pain. It’s unpredictable. I sit, I lay down, I try to relax. Sometimes it passes quickly. Sometimes it passes after an hour. And sometimes I pass out. It’s a lottery, and I never really know what result I’m going to get.

It’s frustrating not knowing any answers. I fear that in some way, I will end up like my father (who had heart disease which eventually killed him). I don’t have diabetes, I don’t have high cholesterol, I don’t have high blood pressure. Yet somehow, I ended up like this.

I spend my life sitting in waiting for that feeling to happen again. It feels like your body is fighting against you, like your heart wants to quit (literally), yet something kicks in and makes it start going again.

How symbolic.