Childbirth Plan for POTS Patients & Catch Twenty-Two

I needed rest. I took the medical leave. I have dizzy spells at home frequently and I don't drive much these days. But overall, I'm feeling better because I can lie down whenever I need to. My anxiety and depression have improved considerably.

But while I’ve been feeling better by taking medical leave from my work prior to the birth of the baby, I haven’t been able to get a straight answer regarding my “birth plan.”

A birth plan is how you plan to give birth. It considers at-home birth, c-section, vaginal delivery, what types of anesthetic you’ll use, and so forth.

Given my POTS, and given my history of blacking out and pre-syncopal episodes (pre-syncopal or pre-syncope means pre-full-black out. This is when the room starts to go black around the sides, but I’m able to stay awake if I quickly lie down and raise my feet), and given my rare genetic condition concerning choline, I have stated several times now that I feel it might be best to have a c-section. I truly believe I’d black out during labor. I nearly blacked out during my last papsmear for God’s sake.

It’s not a squeamish thing. In layman’s terms, it’s the vagus nerve (which runs from the neck down to the pelvis) getting improperly stimulated, causing the body to black out. Even a bowel movement can create a situation where I’m pre-syncopal.

The problem is I haven’t completely, fully blacked out in years. How is this a problem and not a good thing? Because then doctors use this as an their excuse that I’m doing “great.” Nevermind all the pre-syncopal episodes I still suffer during the year.

It's a catch-twenty-two.

In short, I’ve learned what will cause a black out and I’ve learned earlier signals (like extreme fatigue), and so I’ve prevented black outs by not doing activity—often basic activity—and just lying the hell down. But because I’ve become so great at preventing black outs, that comes across as my health problem isn’t that bad. And often pre-syncope seems to be taken either with a grain of salt or as an exaggeration. Unless I lose consciousness it’s not considered serious enough. This was the problem that made it difficult to get diagnosed in the first place for so many years.

So my OBGYN referred me to a cardiologist for testing and consult to figure out my birth plan of action. He’s been under the opinion that if I have a c-section, he’s considering it “elective,” which then means my insurance company will not cover two thousand dollars worth of the surgery.  It will be an out of pocket cost because the doctor has not deemed it necessary.

I had hoped the cardiologist would be able to offer her opinion that a c-section would be best. Instead, I got put through the lousy holter monitor that didn’t always work, and an echocardiogram (which is where I caught that terrible virus with bronchitis back in August – a fluke disaster). I’ve had many of both. But whatever. I went along with the basic tests as a formality.

Her 15 minute follow up appointment she stated, “I don’t want to get into trouble,” meaning sued, for recommending a c-section, “just in case something goes wrong with the c-section.” She said, “There just isn’t the language to state to the insurance company that would recommend c-section for POTS. We don’t have the research to back it up as necessary. Other women have done fine.”

I get it. It’s her livelihood. I wouldn’t want to be sued either. But I really feel like she only spent two 15 minute appointments with me and barely knew my health history, yet charged hundreds of dollars for these consults. And I really feel like she has no understanding of the varying degrees of POTS severity. Some women ARE indeed fine with vaginal birth. Some women don’t have POTS severely. I, on the other hand, have had POTS severely. She’s definitely by no means anywhere close to being an expert. She told me she had done “some reading.”

I told her, “I gave you the NIH documentation stating that I have an abnormal baroreflex response. All of child birth is the baroreflex.”

The baroreflex is the bearing down reflex you use for a bowel movement and for child labor.

“There’s just nothing to back up needing a c-section.”

“Can’t we retest the baroreflex then?” It’s a simple, fairly painless test where you bear down on a device in your mouth, but something tells me Winnie Palmer probably doesn’t even have that test on hand.

She couldn’t answer this and adjusted her notes.

I started to cry and said, “So, okay, I need to know: if I have the vaginal birth and I black out during labor, what is the protocol?”

She got strangely hesitant about answering this.

I said, “If I black out—which is most likely going to happen—will the baby be cut out in an emergency c-section?”

Mind you, an emergency c-section can be worse than a planned one. The incision can be bigger and also sometimes sliced at a different angle (up and down the abdomen/ pelvis as opposed to a smaller incision across the lower pelvis). It can be harder to recover from.

I never got an answer out of the cardiologist. She deferred to my OBGYN and changed the subject to how she’d confer with an electrophysiologist about c-section and POTS.  An electrophysiologist has nothing to do with the baroreflex or testing this and I said that. She agreed but said he might have ideas about whether the c-section could be deemed necessary. Whatever that means.

Here I come to find out, there IS NO protocol if a woman blacks out during childbirth. In fact there’s not much protocol for a lot of emergencies during childbirth for the entire United States.

Check this out:

https://www.bustle.com/articles/99126-why-american-pregnant-women-die-at-a-shocking-rate-and-what-we-can-do-to

Prenatal or Antenatal Depression & Anxiety

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The face of depression. This is a painting I did during a depression a couple of years ago. 

So much of chronic illness for POTS patients is the unseen. 

Pregnant women are supposed to be elated and actually I do feel excited about my baby. I didn’t really in the first trimester so much, but I do now. And yet, that doesn’t stop the depression and anxiety. 7 to 20 percent of pregnant women experience prenatal or antenatal depression. It's often a precursor to postpartum depression if not treated properly.

POTS patients already have a tendency towards anxiety disorders to begin with. There’s multiple reasons why. For some it may be a thyroid issue or some other imbalance that will never quite be resolved even with medication. Perhaps we all had a lot of stressful childhoods. Or it may be that having an autonomic nervous system that’s so easily stimulated or on overdrive day in and day out lends itself to anxiety. Maybe trauma of previous bad experiences relating to Dysautonomia/ POTS triggers underlying anxiety.

The thing is—it’s very real and exhausting. It can also create a cycle of feeling sick.

Before pregnancy, I had suffered at least four severe periods of depressions in my adult life, and also daily issues with anxiety. SSRIs usually made me sicker. Wellbutrin was a relief. However, it also increases heart rate. So the treatments for depression and anxiety can often exacerbate POTS symptoms like heart rate and blood pressure instability.

At this point in the pregnancy—almost 28 weeks—almost third trimester—it’s difficult not to worry about finances. I think that’s my biggest worry. On top of worrying about how to care for the baby and also maintaining a loving, romantic relationship with my fiancé.  I still take 150mg of Wellbutrin XL, but often it’s just not enough. I really need a higher dose and perhaps a combination of a medication I’ve taken during depressions— Brintellix.  But really, it’s better for the baby if I don’t do these things.

With depression and anxiety, my POTS and overall health deteriorates, which in turn gives me more depression and anxiety. And if I get upset enough I can feel it stressing out the baby, which is unhealthy for the baby, which in turn makes me feel awful. If only I could put her in a safe bubble outside of my chaotic body.

I have to make the difficult decision to go along with my doctor’s recommendation of disability leave, which will leave me without pay for two weeks definitely, and then potentially I could get 60 percent my old pay if my insurance doesn’t deny the claim. IF. IF. IF slides down my body in a wave of heat and shorter breaths. The thing that first gave me relief in the doctor’s office days ago—a way out—a way to get more rest and relax—have less work obligations—gives me stress just thinking about the financial repercussions.

I can’t win.

Or maybe I can some. Maybe if I have the rest I won’t be on this much of an edge. I don’t know. It’s exhausting even thinking about it. The dread is overwhelming. It can be suffocating. How will there ever be enough money on top of my student loan payments, my car payment, groceries, taxes, medical bills, and on and on and on. I dread being a burden on my partner. I consider myself a strong woman and yet it's all overwhelming.

Hey, You're Fat. You must work here.

So when I was really overweight from the insulin resistance, almost every single time I was in a place like Target or Walmart or sometimes some place else, I’d get mistaken for an employee and asked about products. Almost without fail. Even if I wasn’t wearing the colors of the store. I rarely had it happen to me prior to the weight gain. No one assumed skinny me worked at a store.

When I lost all the weight, things went back to normal. I rarely got assumed to be an employee of any store.

But now I’m pregnant. I’ve gained thirty-five pounds and though all the weight is on my front, particularly belly, my baby bump is not a perfect round shape yet. Angled at just the right way, you might assume I’m just obese.

Today I was at Home Depot and bending down to get something. So at the angle I was at, you might not have been able to see I’m pregnant. Mind you I was wearing black capri pants and a dark turquoise T-shirt with “Zoo York” on it. My cart was full of stuff I was buying. There wasn’t a single bit of orange on me (the Home Depot color). And yet, a woman just presumed I worked there and started asking me questions like I worked there. I stood straight up, rubbed my belly in that maternal way everyone knows, and said, “I don’t work here. I’m pregnant.”

I wasn’t mean about it, but on the inside I was furious. Again?! Seriously?! Why is it assumed that if you’re fat that you’re there to wait on people? Am I the only one that this happens to? It only happens with significant weight gain.

"You'll Finally Be Whole/ Wise/ an Adult Now That You'll Have a Child"

Ohhhh reeeeaaaaalllllllyy.

I'm adding onto my last vlog about things people say to pregnant women, and my personal take as someone with an underlying chronic illness.

On Trying to Be a Better For Her

Like many moms to be I want to be the best mom I can be to my daughter to be. I want her to be able to look up to me as a role model—as a thriving writer and artist—as someone who pursued and continues to pursue being creative because that is who I am to the core.

 This is complicated in a weird way. I was so chronically ill for years that my career fell behind. I often feel like I lost about ten years of my life. I’m playing catch up. And yet, it’s kind of hard to catch up with a baby on the way.

I feel the weight of financial stress—of trying to prep for baby, of trying to save up money for all the impending medical expenses, of trying to save up for a wedding too. There’s that nagging If Only, If Only, If Only . . .

If only I had figured out a stay at home career in my twenties that could’ve supported myself. If only I had even been well enough to begin with. If only I had researched biochemistry earlier to figure out my genetic issues.

 I know. I can only live for the present and hopeful for the future. I can’t dwell on the past. But as a memoirist finishing up a book, I had pretty much forgiven myself for all of these things—for not being “good enough” because I was so sick—for not being as successful as I could’ve been.

 But now with the baby on the way, call it the hormones or whatever, but those feelings are coming back up. Doesn’t everyone re-assess their lives when a baby is on the way? And how do you reconcile that with a life of chronic illness?

My Body is Not my own - Pregnancy v. chronic illness - Healthy weight gain v. Insulin Resistance

The thing is – when I was at my worst points of POTS (Postural Orthostatic Tachycardia Syndrome) or NCS (Neurocardiogenic Syncope), I’d have the sensation that my body was not my own, that I had no control over it—how it acted, how it lost or gained weight, how it stayed upright, how much energy it could grant me. There were always negatives associated with this lack of control, and sometimes changes meant permanent bad change or worse symptoms to come.

And now that I’m 22 weeks pregnant, I’m feeling that same sense of “my body is not my own.”

My only history of that feeling is coupled with a chronic illness that at times took years away from my life. It’s hard not to feel panicky sometimes because of this. It’s hard not to feel a sense of dread and impending doom. It’s hard to see the impending joy that so many people keep telling me about.

Weight and body shape is one way in which I’m feeling lack of control similarities between my chronic illness and my pregnancy.

The weight that I’m putting on? Though it’s normal for a pregnant lady—it’s starting to remind me of back when I went for years undiagnosed with insulin resistance.  I went for years trying to get doctors to give me the glucose tolerance test (GTT) WITH insulin measurements at each interval. Back in 2009, before my weight had gotten up to 200 lbs, I even asked a trusted doctor who I admire whether being on Metformin (a blood sugar medication) might benefit me. The conversation never really went anywhere. In 2010 (?), I tried to get the rare diseases doctor handling my case at NIH (back when I was a research patient) to run the GTT.

She refused and said I was fine blood sugar wise if my fasting blood sugar and my A1C was always normal. (Actually, this is absolutely not true for insulin resistant patients. My fasting blood sugar and A1C are usually quite normal).

Even after I got my first GTT, my general practitioner at that time didn’t read the results correctly. I needed a really great endocrinologist years later (end of 2013) to know how to give the test and how to read the results. Then, after taking my history and doing lab work, she felt that I had probably dealt with insulin resistance even as a dieting skinny teenager. People can have an underlying genetic issue that predisposes them to insulin resistance. People can even be skinny when they start out with insulin resistance. For years.

While undiagnosed I went from my lowest NCS/ POTS weight of 125 lbs up to 230 lbs before I stopped looking at the scale. And most of that weight was on my abdomen. I looked like a pregnant woman, but I didn’t have the impending joy to go with it. There were no baby kicks, there was no loving partner, there were no friendly faces. In fact I stopped going to the beach after two young men walking behind me on my way out to the sand made cracks about my weight and what a real fatty I was.

At some point between 200 – 230 lbs I took a vacation with my parents before I started my current teaching job, back in September 2013. At that point I figured I’d take a photograph of myself in a bathing suit, because I couldn’t believe how absolutely out of control my body had become. It looked foreign to me. I remember saying, “Holy shit, I look pregnant.” Only I wasn’t. I was just very improperly diagnosed at the time.

NOT pregnant - Insulin Resistance out of control - September 2013 - in my bathing suit at hotel

Once diagnosed, I was put on Metformin and taught about how carbohydrates and protein effected my blood sugar. I was given a Diabetes booklet on how to eat. Within three months I lost the first 40 lbs. At one point I got as skinny as 130lbs again. Just before I was pregnant I was at 149. Healthy.

At 21 weeks while getting over Bronchitis no less.

At almost 22 weeks.

Bump

On one hand I’m joyous looking at my baby bump because now it’s a bonafide baby bump. On the other hand, every time I look in that mirror I think back on that picture of me in my bathing suit from 2013 absolutely freaked out about my shape.

Let me be clear—it wasn’t just the weight itself though. It was all the health issues associated with that weight—the shortness of breath, the exhaustion, the back pain, the feeling like I had a weight belt around my stomach at all times that I wished I could just take off, the overheating because of the extra fat, the blood sugar crashes, the bouts of feeling starving and needing to eat way more than I should.

And then there’s the anger.

How many times was my insulin resistance overlooked? How many times did I ask to have that checked? How much of my career was lost because my blood sugar was so unbalanced that it would provoke my POTS and NCS symptoms? (Dysautonomia patients are actually more likely to faint due to changes in blood sugar).

The bottom line though?

Chronic illness has greatly shaped my view of pregnancy symptoms. And part of functioning day to day is working on changing my own perception of “my body is not my own” as something that has the potential to be extremely positive. It’s not easy though. The past still haunts me.

Sunday Before Week 20 - Hi

August 21st, 2016

showing off horror flick moves in utero

I’m starting this blog because while I found a ton of info, articles, and blogs on whether or not I should conceive while chronically ill, I didn’t find a whole lot regarding the in-over-my-head feeling I have now that I am pregnant while chronically ill.

This really came to a boiling point this week, because on Monday, August 22nd, I’ll be twenty weeks pregnant (5 months)—the “half way point” of pregnancy—and I've felt the worst I’ve felt yet, while every pregnancy app out there says stuff like, “You’re probably feeling like you have much more energy now! Most women feel this way in the second trimester.” To top it off I woke up yesterday with a sore throat, headache, and cough, which will mark the fourth time sick while pregnant (I’ve already dealt with Shingles and Epstein Barr reactivations), because when you have a chronic illness, getting a cold is pretty darn easy.

I’m a writer and artist. It’s what I do. I suppose I need this in order to process the isolation at times, but the more I thought about it, the more I realized, If I feel this way, how many other women must too?

So I dedicate this to you, ladies. We are the “high risk” ladies. We are the knocked up chronically ill. We are the invisible illness ladies and the not so invisible illness ladies, working on making a human while trying to function basic tasks. I toast this start off message with a non-alcoholic beverage just for you.

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My journey begins as a POTS (Postural Orthostatic Tachycardia Syndrome) patient, co-diagnosed with Fibromyalgia, Chronic Fatigue Syndrome, Insulin-Resistance, Hypothyroidism, and a couple of amino acid or vitamin deficiencies that are the first of their kind documented in the entire world. I was a research patient for about six years. I’ve had more tests done on me than I care to remember. I wanted to make a difference though for other POTS patients. Finally, this research paper was written and published about my cells. (See: http://www.ncbi.nlm.nih.gov/pubmed/25466896 ) Hopefully it will help others.

Just before I got pregnant I had the worst bout of Shingles in years and period that lasted a month (they found a polyp and presumed that was the cause). I didn’t anticipate my body was even well enough to conceive, let alone maintain a pregnancy beyond the first trimester. And we weren’t trying to conceive. I simply miscalculated my ovulation because of all the previous bleeding like a total moron and the lousy mathematician I am.  My mother had asked, “How did this happen?”  Well, Mom, the usual way combined with sheer stupidity, really.

In fact I had already decided I wasn’t well enough to try to have a pregnancy. I had set up an appointment with a fertility doctor to discuss getting my eggs taken out. I had filled out forms to receive information about adoption. My significant other hadn’t proposed yet, but I’m thirty-five. I figured it was high time I plan stuff. Frozen eggs and adoption info seemed logical. And terribly responsible. I would have children at forty via adoption or surrogacy if—and only IF—I was well enough then. I was pretty proud of my well-planned genius self.

Here's a snapshot of a dorky thirty-something couple with almost everything figured out during Christmas vacation.

But we got pregnant and I figured if out of all the miraculous things that had to come together in order for my body to even conceive, I would help this life the best I could. There are parents out there dying to conceive. Maybe, I thought, this is the lucky gift I get after so many years of suffering a serious chronic illness? 

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