Category Archives: Infertility

Can Versus Should, Take 2

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(Second in a series of occasional posts on pregnancy, children, and chronic illness.)

It was wonderful to hear from so many of you at different stages of decision-making, pregnancy, and parenthood. The feedback from my recent post on pregnancy and chronic illness unraveled so many interesting angles, from questions of inheritability to adoption to child care, and I’m interested in pursuing all of these in more depth.

The most compelling and complicated question remains, of course, can you versus should you. However, the theme I’d like to explore is the sentiment that “it takes a village” that my friend mentioned in a comment. I’m partly drawn to this because I think it’s emblematic of living with chronic illness in general, and also because I’ve been thinking a lot about health care reform and chronic illness.

After all, anyone who lives with chronic illness already knows the juggling it requires, the multiple roles the people who love us take on for us, and the complications it adds to life decisions.

Pregnancy, infertility, adoption, and parenting are extraordinarily challenging and life-changing no matter your health status; factor in the demands of chronic illness and my immediate thought is yes, it really does take a village. If what makes effective health care is a hot political topic right now, than carving out a niche for the many women living with chronic illness who are pregnant or want to be parents is appropriate.

There are both medical and personal implications of this notion of a village. If there’s anything I’ve learned from twenty-eight years of being a patient, it’s that when different doctors and specialists work together, the patient benefits. I love that my (new!) primary care doc, my lung doc, and my other specialists know each other and confer with each other about my care.

Many chronically ill women have high-risk or medically intensive pregnancies, and just like women in high-risk situations who did not have additional existing chronic illnesses, their needs demand close monitoring and thorough, attentive care from their obstetricians. But for many women with chronic illness, the best situation is one in which all of the doctors who make up their health care team work with each other—whether it’s discussing risks of certain medications on fetal development or the best way to handle a disease exacerbation in late pregnancy, this communication is essential.

But of course this medical village is only the beginning. Issues of infertility and high-risk pregnancies aside, what I’ve heard from many of you, and what corresponds with what I discovered when talking with patients for my book, is that caring for the child once he or she is in your life is an immense challenge. (Notice I didn’t say once you’ve given birth, because no matter how you decide to become a family, you’re still trying to balance the same problems.)

“How can I care for a baby on the days when I can barely take care of myself?”

I’ve heard that question posed many women with many different types of chronic illness. Some are incapacitated by pain, other battle life-threatening exacerbations, but the universal question remains the same. And the answer, of course, is that you can’t do it alone.

So who would make up your village? Would spouses, relatives, and good friends be able to bridge the gap for you? If you needed regular help with child care, could you afford it? If you need to maintain some sort of income after maternity leave, does your job have any flexibility?

More simply, do you have a plan in place so that you can be the parent you want to be without completely sacrificing your own health?

It isn’t easy, and in an ideal world the cost of chronic illness and health insurance and child care and all those variables we have to consider would be more reasonable. In an ideal world, we could count on our bodies to be somewhat more reliable, and we wouldn’t have to choose between the immediacy of the present and the potential long-term outcome so often.

But we’re not there, we’re here. So whether it’s assembling a medical team that works for us or figuring out a back-up plan for those days when our bodies fail us before it happens, building a village that is strong and restorative is the best thing we can do.

And in the end, aren’t so many of us already living proof that yes, it does take a village to thrive?

Pregnancy, Children, and Chronic Illness: Can Versus Should?

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One of the most complicated chapters to write in
Life Disrupted was the one about pregnancy and parenting when you have chronic illness. There were so many variables to consider, and so many questions that don’t necessarily have answers.

As one of my doctors once asked, just because you can get pregnant, should you?

That’s not something that can be answered in a single blog post, a series of posts, or a chapter in a book, but it’s one I think many patients face in some form or another. I know it’s one we face, and have approached from all sorts of angles the past couple of years.

What makes it such a complex question is that the variables that go into it differ from person to person. From where I stand, there are two major concerns that dominate this discussion: (1) getting pregnant and safely carrying a baby when you have chronic illnesses; and (2) being able to care for said children when chronic conditions flare.

Like the severity and diversity of chronic illnesses itself, these concerns run the spectrum. For example, one young patient in my book suffered from chronic pancreatitis and wondered how she would manage child care during her severe pain episodes were she to have a child. She also worried about passing her condition on to her child. Another patient with cystic fibrosis became pregnant and was prepared to sacrifice her life for her child—and that was a legitimate possibility. She faced serious health challenges before delivering her healthy child, and had to agree to have full-time help caring for her baby afterwards before her physician would sign off on her pregnancy plan.

(For another poignant story of the risks and challenges of pregnancy and childbirth with CF, check out Confessions of a CF Husband.)

These are just some examples. I know pregnancy and type 1 diabetes has its own set of blood sugar concerns, or that multiple sclerosis exacerbations may actually improve during pregnancy but MS medications should be avoided while pregnant, and the list goes on…

And of course, there are chronic conditions that can cause infertility. I’ve written before about how PCD affects both conceiving and carrying a baby, and those concerns are separate from the issue of being able to care for children during prolonged exacerbations or hospitalizations.

I think the latter concern is particularly universal—whether it’s pneumonia or a viral infection, a severe migraine or other pain flare, or a lupus or arthritis exacerbation, the issue remains the same: How do you care for children on the days when you cannot care for yourself? Those of you already balancing these competing needs, I’d love to hear your input. I’ve collected some patient stories on this, but it’s a conversation that continues to evolve, and the more voices the better.

If your chronic illness influences fertility or causes high-risk situations, how do you draw the line when it comes to medical intervention, whether it’s assisted reproduction or deciding when it’s time for a pre-term delivery?

There’s another distinction that fascinates me, and that’s the distinction between wanting to be pregnant versus wanting to be a parent. I don’t think I realized there could be a distinction until recently, and maybe there isn’t for everyone…but when you’re weighing what’s best for the mother and what’s best for a potential baby and what’s best for a family, I think it’s a relevant one.

In terms of the “can versus should” question, I wonder how many women prefer adoption? Is chronic illness an impediment to adopting, or does showing your conditions are under control suffice?

It’s an exploration that’s been on my mind ever since I wrote this Salon.com-inspired post about choice, and I think this angle is a natural extension of any talk about children and chronic illness.

I realize these are deeply individual choices, ones tied up in personal preference, disease progression, risk tolerance, religion, economics, and health insurance, to name but a few of the factors. There are no easy answers, and there are no “right” answers. Not everyone can afford to have help with childcare, not everyone can afford medically intensive pregnancies or to not work during high-risk pregnancies that require bed rest, and not everyone who would like to can afford the cost of adopting or having IVF.

(I know adoption and IVF are expensive regardless of existing health status; I’m merely focusing this discussion on people who are considering these options in conjunction with chronic illness.)

I guess in the end the variables and “can versus should” deliberations boil down to a different consideration altogether: how to be the parent you want to be when with a body that doesn’t cooperate.

So, if you’ve been through this, are actively discussing it, have plans for parenthood down the road, or became sick after you had children, please chime in.

The Measure of Choice…

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Read this Salon article, “The Baby I Turned Away.” Go ahead, click away from my page, read it, gauge your initial reaction to it, and come back to me. (C’mon, have I ever given you a bad reading recommendation?)

I couldn’t not write about this, but even after reading it a few times, sleeping on it, reading it again, wading through the letters posted, I’m still all over the map. Here’s what I’ve come up with so far:

Whether you think the author, Jessica Berger Gross, is a superficial “baby shopper” lulled by a romanticized ideal of India and motherhood or a woman who simply knew her limits and made the right choice (most reactions tended to split down these two lines), you have to respect the honesty here. It’s not easy to lay bare your most painful decisions, your fears, and your limitations, especially with such an emotionally charged issue.

I’m not interested in dissecting, praising, or bashing the author here. I’d rather explore the whole idea of choice. Choice, both within the context of this one article and in much broader terms, is a luxury. For example, the author had the option (read: financial security) to pursue an expensive foreign adoption. That alone is not something every person who wants a baby but cannot have one on their own can do, and she knows they are the “lucky ones.”

But so often the luxury of having a choice brings so many additional possibilities and consequences. In this case, the ability to pursue this adoption put them in the position to face tough, tough questions. As the author writes,

“I wished we were different people, the kind who would welcome this child, welcome the risks, with no questions asked. I wanted to help her, to make her OK. But what if I couldn’t? Could I love her anyway? To a parent, this question must be unthinkable. You love your child no matter what, accepting all limits and gifts. But we had a choice, and the magical thread that had spun us around this child for the previous two days was beginning to unwind and tangle.”

Ahh, the downside of choice. It forces us to confront our weaknesses, it shatters our perceptions of perfection.

Obviously I am approaching all of this from a different perspective than a lot of people who either applaud or condemn Gross. I’m not the parent of a special needs child, nor am I currently pursuing an adoption. But the whole idea of what is “normal” or “healthy” (Editor’s note: Go on and read this, too–it’s relevant to my position) and what happens when the future we envision is far different from the reality we inherit is an important one to me. And I think whether you’re talking about disease or developmental delays or emotional problems or whatever the special circumstance may be, it all boils down to the same fundamental debate.

What do you do when life doesn’t conform to your plans?

On the one hand, this sentiment from a Salon letter-writer, Late Again, gave me pause:

“Why would you CHOOSE something with so much heartache if you didn’t have to? Thank god there are people who do. But, really, most of us wouldn’t choose a difficult path given an alternative. The major advantage of adoption over biological birth is the notion of choice. Good for you all if you would check the box on the adoption forms that says “I’ll take anyone.” Most people wouldn’t. This is just one view…”

It’s a good point to raise in the discussion. Objectively, why take the harder road when you don’t have to?

But (and you knew there was a “but” coming) could you be cheating yourself out of unforeseen positives on that road? Could you be selling yourself and your potential to meet challenges short? I don’t know. There are a lot of parents out there who are much better equipped to speak on this, who have spent time in the trenches.

It’s tough. If I have a child, of course I wouldn’t wish for the child a life of sickness. Who would? (It certainly wasn’t in my parents’ plans for me, but then again, neither was all they have gone through and endured.) But I would be the first to say that that child’s life would be undeniably rich and fulfilling even in the face of illness. I’ve never had the luxury of health, not for one day on this planet, but I do not lament that things aren’t any other way.

The absence of choice is just an important facet of this discussion. You can’t always control the human body—who can conceive and who can’t, what diseases can be prevented or detected early and which ones cannot; you can plan for and hope for and expect good health (and all the accoutrements that loaded term brings) but that does mean it will happen, or that you have any say in that.

Sometimes you roll with the punches, and you do not have a choice. Challenges present themselves, even ones you want no part of, and somehow you meet them and keep on rolling. But if you’re lucky, you’re too busy living your unscripted life to even notice what you can or can’t choose.

Pragmatically, not everyone is this lucky. I know that. While I do not have many answers or conclusions, just lots of questions and speculations and thoughts that clearly run in circles here, I know at least one thing. I, too, am one of the lucky ones.

Ups…and Downs

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I was struggling with a way to tie all the things I wanted to say into a neat little essay-type piece, so I decided to chuck the structure constraints and just go through them.

1. It’s officially springtime. Not that you’d know it from the snow on the ground and the fact that I’m wearing gloves today, but it’s a start. It occurred to me as I walked my dog this morning that I made it through a winter without being in the hospital. It has been at least a decade since I’ve said that. True, I’ve suffered from various plague-like infections since October, I haven’t been able to hear out my left ear for a couple of months now, and my peak flows have been horrid, but no matter. No steroids, no hospitalizations. Now, if my immune system and my antibiotics can hold out for a few more weeks, I think I’m in the clear.

2. When I am not jealous of Dr. Jerome Groopman (a famous doctor! A staff writer for the New Yorker! A widely-published book author! The man has that whole left and right brain strength thing going on that I can only imagine) I am wholly appreciative of and fascinated with what he writes. His newest book, How Doctors Think, tackles a subject near and dear to my heart, misdiagnosis. He argues that misdiagnosis results from mistakes in thinking, “cognitive pitfalls” that occur when doctors assume certain things based on a patient’s history or complaints and “anchor” themselves to one idea/diagnosis instead of considering broader possibilities. (See a great article taken from the book here ). Having been involved in this exact scenario for years, I really appreciate the clarity and insight Groopman brings to this discussion, and am looking forward to reading the whole book. (Plus, it makes me feel a little less crazy after all those years of answers that didn’t match my problems and a little more understanding of the physicians behind those diagnoses.)

3. There are days when I seriously question what I do and how long I can do it. There are also those wonderful, uplifting, soul-buttressing days, though, when I have no need to question. I have some amazing students. Thoughtful, inquisitive, and intellectual students whose projects and interests truly excite me, whose questions about science and public health and society make me want to read more and whose research reassures me just a bit about the future of our country’s health care system.*

4. Three people in my personal life are pregnant right now; two just made the announcement recently. Wonderful, exciting news, the kind of news you need when it’s cold and miserable out and you just want spring to start, when you just need to reminded that everything is a cycle and there is always the chance to start anew, when you can feel yourself getting happier just by virtue of their happiness reaching out to you. **

5. I had an amazing conversation with an incredibly wise and insightful CF patient the other night, one that left me with so many questions and so many things to think about. It was the kind of talk that left me humming with energy, my mind going in so many different directions. ***

*Sometimes I still question the choices I’ve made. Just when I think I’ve set up a schedule that is conducive to my health and my writing, I am plagued with doubt. Am I being lazy? Wouldn’t things like medical bills be so much easier to stomach if I took on more classes? In theory I am making an investment in the future by proceeding this way now, but that lag between theory and practice can be difficult sometimes.

**Apparently this spate of fertility has prompted well-meaning people to approach my mother and ask when we’re going to have kids. Not surprising, since people have been asking us that since we were engaged, but since that’s a complicated question with an even more complicated answer, this unsettles me. Right now there isn’t much to say about it, and I find myself not wanting to discuss what is there to discuss. I suppose I just wish the good news—the pregnancies—could remain all about the pregnancies and the people involved in them. I mean, I know it’s human nature and an inevitable (and innocent) question, but I’d rather just focus on the three babies, not what anyone else may or may not be doing in the near future.

***At one point, I was asked “Do you know anyone like you?” I answered that no, I didn’t personally know anyone with PCD but that in the past couple years, I’d found groups online. I read from time to time, but rarely post. This segued into a really interesting discussion about the nature of community at different points in illness—for example, how if you’ve been sick all your life you might not need the same community you did as a child but if you’re sick for the first time as an adult, you might really need to seek out people with the same condition. I said that no doubt it would be valuable to know someone with PCD face to face, but that I know enough people with significant illnesses that I can extrapolate what I need to. Since I’ve never known anyone like me (except my parents, to an extent), this hasn’t bothered me.

I got home that night still thinking about community. In my inbox was an e-mail saying someone from the PCD Web group had died at 42. It was not anyone whose posts I had ever read, but I felt really down. It hit me that with community comes the burden of reality.

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Who Moved My Fallopian Tube?

It was supposed to be the no-brainer procedure of the batch of standard infertility evaluation tests, the one diagnostic test that was more formality than functional. Hysterosalpingograms test whether fallopian tubes are open or blocked, and for women trying to get pregnant and not succeeding, the immediate results of this test can make a huge difference.

In my case, no one suspected I had any problems with my tubes, but my medical team decided it was worth it to know for sure and rule it out since a lot of the time, women have blocked tubes and don’t even know it. I had enough problems we already knew about that the last thing we needed was a separate condition going undetected.

I am careful not to turn this site into an infertility blog—my goal is to explore issues surrounding living with chronic illnesses in general, rather than focus on a specific condition or topic. The thing is, though, these two topics seem to overlap more and more these days.

Tubes aside, my reproductive challenges are two-fold: there is the question of can I get pregnant and the inevitable question of should I get pregnant. The “can” part is somewhat dubious—if I don’t have cilia in my reproductive system (and there is no way to test this) then things can’t move along my fallopian tubes to get where they need to be. Other than simply trying and never getting pregnant, a high-risk specialist told me one of the only other indications of whether or not I had cilia would be an ectopic pregnancy.

Equally complicated is the “should” question—some of the numerous concerns there include increased infections and hospitalizations and further decreases in oxygenation, all of which mean a significantly increased risk of seriously pre-term delivery (and that’s just the beginning).

In the middle of these two questions are assisted reproductive techniques like IVF, and here again the can versus should debate is ever-present: were I to elect this path, I could only have single-embryo implantation because the high risks I already face mean multiple births are simply not an option, and the same high-risk factors need to be weighed.

So as we’re processing all of this information and trying to make what seem like impossible decisions, this one test was supposed to be the easy part.

“So you don’t have a left tube, correct?” the doctor asked me during the test.

“Um, as far as I know I do. I’ve never heard that I don’t,” I said.

“Well, the right one looks good but the left one isn’t here,” she said. A pause.

“Don’t get too worried, most of the time this just means the muscle is spasming and the dye can’t get through,” she continued. “At this point, I don’t think more invasive tests are necessary, but we’ll revisit that issue if we need to.”

I nodded, slightly stunned. It wasn’t so much that I didn’t believe her—and intellectually, I knew she was the expert and had seen enough of these to know—as it was that I just hadn’t planned on hearing anything other than “Just like we expected, everything’s fine.”

But after all these years, why is it that I am still surprised when my body doesn’t act the way I expect it to? It never has.

And the more I thought about that, the less inclined to worry about my currently Missing in Action fallopian tube. Things looked grim and wrought with complications, but I’d faced grim and complicated situations many times and somehow, my body always managed to do what none of us expected it to: survive.

The one thing I can say with utmost confidence about my body is that it is unpredictable and anything can happen–which is exactly why I’m not giving up on it just yet.

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And So It Goes…

Usually, I try to craft posts that can stand on their own, essay-type pieces that converge on some central insight or theme about illness and identity that go beyond the minutiae of my own daily life.

That’s usually.

Today I have no larger issue at stake, no idealistic nugget of reflection or speculation.

Right now, I am just frustrated. Frustrated that I woke up yesterday morning and for no apparent reason (or infection), could not breathe and had searing pain in my chest. Frustrated that instead of attending my Saturday fellowship meeting, I was hooked to a neb for hours. Frustrated that I missed my friend’s party and didn’t get to the pile of work or the trip to the gym because I couldn’t sit up without losing my breath.

But deep down, I am more frustrated by the amount of information presented to us at a fetal medicine high-risk consult this past week—or, as it were, all the variables involved in this quest that we have no control over. I am frustrated because I feel so overwhelmed, and every scenario on the table is rife with conditionals and unknowns and extenuations. I am frustrated because right now I can barely find room for joy amidst all the risks and percentiles and negotiations, frustrated that even the encouraging pieces of news seem momentarily drowned out by everything else. Frustrated because I thrive on being in control and crave concrete facts, and I cannot each out and get either of those right now.

I am frustrated because lately when I see babies, tears spring to my eyes without warning and I have no control over that, either. I am frustrated because my body has brought me nothing but complications since the moment I was born and right now I want just one thing, this one thing, to be uncomplicated. I don’t want to have to fight so hard, or give up so much.

And lastly, I am frustrated because I know sound whiny and self-indulgent and everything else I dislike so much and while I should have control over that, too, I don’t.

And that’s it, no threads or parallel narratives to tie together, no concluding statements that wrap it all up neatly and succinctly. Not today, anyway.

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Why I’m Not a Numbers Girl

“You have a 75 percent chance of not being able to have children on your own,” the fertility specialist told me matter-of-factly, barely looking up from the computer screen where she was clicking through research studies on the topic.

Instantly, I disliked her. Usually, I appreciate a no-frills approach to medical information. I know enough about terminology and facts to converse with the most technical of physicians by now, and prefer cutting through translations. But this terrain was unfamiliar to me. Suddenly I wasn’t confident, unflappable me; I was reduced to a number, and it wasn’t even a number either of us could quantify one way or another.

I barely heard the “on your own” portion of her assessment, so taken aback by the odds. I’d known women with my condition (primary ciliary dyskinesia, or PCD) have trouble with fertility, but I hadn’t realized exactly what “trouble” translated to mathematically.

The specialist launched into an overview of my options should I fall into that 75 percent—surrogacy, IVF, and medications, as well as their prices—but I wasn’t ready to hear my options yet, never mind process them. I wasn’t willing to abandon the chance I could be in that fortunate 25 percent.

The shock of that particular doctor’s appointment reinforced how much I hate numbers. I always have. I slogged grudgingly through geometry and calculus in high school, doing well enough but spending more time on math class than I did on my other eight classes combined. In between journalism internships, working on the school paper, and writing papers for English class in college, I took computer science and marine biology courses just to escape math class. When I entered a graduate program for writing, I figured the verbal part of my brain that had carried me for so long would finally be allowed complete domination.

But if I wanted them to, numbers could define my daily life in all sorts of ways:

1,000 is the number of documented cases of PCD in the United States (though up to 25,000 people are thought to have it but have not been diagnosed). 20+ is the number of surgeries I’ve had, though we stopped counting so I cannot be sure. My medications now number 8 a day, a two-year low, but with winter coming I expect those to increase. I have 7 different medical conditions, a number that fluctuates when temporary problems flare.

I get chest PT 1 time a day, 7 days a week, 52 weeks a year, but my insurance will only cover 3 visits from my physical therapist per week so I need to improvise. 5 is the number of health insurance plans I have switched to in the past 12 months, and 3 is the number of said companies that have denied coverage of the very preventative care that allows me to stay out of the hospital. 4 is the average number of days per week where I have notable difficulty breathing. 26 is the number of years I have been sick.

There are certainly a lot of statistics, but little that jumps out and describes my life, my motivations, or, in the case of my 75 percent odds, my possibilities.

When I look at such a sampling of numbers, I am reminded why I am not and never will be a numbers girl. I cannot add all those parts up and get a whole me.

And on rough days when all the English degrees in the world cannot help me find the words I need, it’s important to remember that I cannot start speaking the language of numbers–they will always fail to capture what is both intangible and essential: hope.