Patient Story: Sarah

Sarah Age: 38 Polycythemia Vera (PV)

"What I can say with absolute certainty, though, is that despite everything my body actually did a pretty good job of nurturing a healthy new life into existence. And for that beginning, my husband and I will feel eternally lucky."

On Beginnings

In 2007 I wrote an essay for the MPN Update called “On Normalcy.” In it I chronicled my stunned reaction to my PV diagnosis, my misguided stoicism when I suffered a heart attack six months later, and my on-going struggle to cope—in some sort of reasonably dignified fashion—with what I imagined ahead as a life of barely-controllable itching, continued lost productivity, and nagging anxiety about the progression of my illness. At the time I had neither the space nor the inclination to write about how I came to be diagnosed in the first place. But since 2007 that unshared part of my story has taken on a life of its own, both literally and figuratively, and I now find myself eager to talk about it as much as possible.

Simply put: a few years after getting married my husband and I decided to start a family. I remember mentioning this fact quite casually at my next annual physical and that in response my doctor, equally casually, suggested I have a simple blood test to make sure I wasn’t going to begin a pregnancy already anemic. Of course, because of my as-yet-undiagnosed PV the counts came back completely the opposite of what we all expected, and I then entered the cycle of tests and specialist appointments familiar to other MPN patients. My husband and I put our baby plans on hold during all of this, and especially after my heart attack our doctors urged us to wait some unspecified length of time until my physical condition was deemed strong enough to support a healthy, full-term pregnancy. I was 31 years old.

Over the next few years a key element of my PV treatment, beyond reducing my bone marrow’s hyperactivity and lessening the severity of my symptoms, was to avoid anything that might impede my ability to become pregnant later. This mostly meant enduring 4-5 serious doses of Interferon-alpha per week rather than the more-easily tolerated hydroxyurea, since that drug was known to negatively effect the reproductive system. But when, at the age of 35, my doctors finally cleared to me to return to our plan to start a family, nothing happened. And so, frustratingly, my husband and I eventually entered another cycle of tests and specialist appointments: the type familiar to couples with infertility problems.

For my infertility treatment, the focus was the reverse of what it had been for my PV. In other words, this time the point was to try to become pregnant while avoiding anything that might increase my bone marrow’s hyperactivity and the severity of my associated symptoms. This meant exhausting all our less-invasive, low-hormone options first and generally taking things much slower than other couples our age might have. Then, when it appeared In-Vitro Fertilization was our last option, our doctor carefully planned the procedure to give us as much statistical possibility of success with as little medication as possible. It worked on the first attempt, I’m happy to report in retrospect. But the joy we felt on hearing the positive news will never entirely erase our memory of profound confusion and fear during the moments before the first injection, wondering what we were about to do to my body and our future together. After all, since there are no real studies about infertility hormone treatment and PV, and none of my doctors had ever had a patient like me, educated intuition and hope—rather than science and experience—were all we had to help navigate the maze of pros and cons that confronted us at each step in the process.

The pregnancy progressed reasonably well. I took blood thinners to counteract any potential hormone-induced clotting problems, so we were scared but not entirely surprised when I had to make a few bleeding-related trips to the emergency room early on. And, all the good reports we were getting about our baby’s development helped us cope with the fact that the same medication protecting me from clotting was also going to eventually put me at real risk of hemorrhaging during the delivery. Ironically, by the last few months one of the most complicated aspects of the pregnancy was how to treat my rapidly advancing anemia. The doctors conferred and I did, ultimately, take a very lose dose of iron for a short time to ease the fatigue, difficulty breathing, and other problems that very anemic pregnant women face. But along with every iron supplement I ingested came the worry that my red blood count would jump too high and cause additional, potentially serious problems.

Finally, now 38 years old, I went into labor. We had chosen to give birth naturally because of the risk of paralysis associated with combining blood thinners and epidurals, so I could feel everything. My medical history up to that point had trained me to interpret pain as a harbinger of bad things to come, but as much as possible I tried to keep in mind that the type of pain I was feeling at that moment was productive, each powerful contraction an indicator of progress toward the outcome we had waited for and worked toward so earnestly.

Our son was born perfectly pink, and with his strong lungs already screaming he was placed into my arms. Naturally, my husband and I were completely infatuated—so much so, in fact, that we didn’t really notice when the doctors and nurses around us started scrambling for more supplies and brighter light. An hour later, when I couldn’t get out of bed without fainting, we learned I had hemorrhaged. Two days after that, when I still couldn’t get out of bed, my cardiologist was concerned enough about the continued effect the massive blood loss could have on my heart that she ordered a transfusion and an extended hospital stay. Even after I was home and able to walk without help, it was weeks before I was physically strong enough to carry my son, change his diaper, or care for him in any way other than nursing. Moreover, because breast milk supply is associated with healthy red blood cell counts, when he experienced his first major growth spurt I didn’t even have enough milk to nurse him satisfactorily. Perhaps the hardest part of this experience, looking back on it now, is that I was so pale and spent that I was afraid to look at myself in photographs later. So, while we have plenty of him, we don’t have a single picture of the three of us together from those early weeks. We know we were elated, of course. But the circumstances denied us a visual record of that happiness, and I admit I haven’t quite made peace with that part of the story just yet.

Why I started hemorrhaging is a mystery. It could have been the blood thinners or even the PV itself for some reason—or perhaps I might have hemorrhaged anyway and those other things just made the bleeding more severe. Why we had problems conceiving is also a question that remains to be answered. Maybe we would have discovered our infertility when I was 31, or maybe the fact that my poor health forced us to wait until I was in my mid-30s put us in a situation we would not have experienced otherwise. And, while I’m on the subject of origins, I might as well add that how I came to have PV and what caused one of my major heart arteries to become blocked are also still unresolved. I suppose, as one doctor put it, unfortunately I am the kind of person who “finds the limits of medical knowledge” more often than others. What I can say with absolute certainty, though, is that despite everything my body actually did a pretty good job of nurturing a healthy new life into existence. And for that beginning, my husband and I will feel eternally lucky.

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These represent first person accounts of real people living with Essential Thrombocythemia, Polycythemia Vera and Myelofibrosis. It does not represent the views or opinions of anyone associated with the MPN Research Foundation. Please consult your doctor before taking any action to manage your health.

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