By Dr. Annie Brewster
In April, Sue Levy of Brookline shared her story of living with Lymphangioleiomyomatosis (LAM), a rare, progressive and potentially fatal lung disease. Now, in the audio file above, she shares her story of navigating infertility, a journey that started years before her LAM diagnosis but ultimately was informed by it.
Sue underwent six unsuccessful cycles of IVF before she and her husband decided to explore alternative ways to have children. They initially pursued domestic adoption but ultimately decided on egg donor and gestational carrier.
Eleven percent of American women of child-bearing age have a difficult time getting pregnant or carrying a pregnancy to term. While assisted reproductive technology is used much more commonly today than it once was, the term “infertile” is still fraught with negative connotations, especially for women. Dealing with infertility can bring up feelings of shame, failure and loss.
Today, Sue can honestly say that her inability to get pregnant was a blessing, in part because her lung condition is estrogen-responsive and can worsen in pregnancy, but mostly because she cannot imagine having any other children than the two young daughters she has now.
The first pass was just trying to conceive on our own, and it not working, and getting involved in some reproductive health. And we ended up doing six rounds of IVF. And IVF is not for the faint of heart — injections, pumping yourself full of medications. I was very responsive to hormones and the moods — and trying to keep a full-time job and keep going with everything…
I fundamentally believed in the science and I thought, ‘This time it’s going to work.’ And you also have to figure out, how do you keep yourself safe in case it doesn’t? How do you deal with that crushing blow of, ‘They’ve implanted, I’ve seen the embryo on the screen, I’ve watched them put it inside of me, it’s got a 10 rating, it’s awesome, we’re in’ — to then, two weeks later, checking every time you go to the bathroom: ‘Am I getting my period? Am I not? Am I getting my period?’ And then saying, ‘Oh my god, it didn’t work.’
After six rounds of it, you can imagine you would just cry. And I remember saying to my husband, ‘When are we going to know when to stop? Continue reading