I think I’ve mentioned on this blog before that I’m a member of an online support group for women with Cystic Fibrosis who are mothers, pregnant, or trying to conceive. It’s a really remarkable thing, actually – run completely by and for CF Moms. Just a few days ago was the six-year anniversary of its founding by two new moms in the UK, and today the group has grown to over 700 women from across the world.
Members vary from women who got pregnant accidentally to those who have been trying with IUI, IVF, or other assistive means for years – highlighting the wide variability in fertility of women with CF. Some use surrogates or adopt. An informal survey of over 200 members back in 2013 showed that 1/3 of the mothers were only able to conceive with ART and of those still trying to conceive, 75% met the criteria for infertility (unsuccessful after 12 months of regular, unprotected intercourse). These numbers are obviously much higher than in the general population.
The group has been such a huge source of comfort and support for me over the last year. Worldwide there are about 70,000 people with cystic fibrosis, of which approximately half are women. Of those 35,000, only a handful are old enough and healthy enough to consider a pregnancy. There’s so little known about pregnancy and fertility in women with CF and often our doctors don’t have much information to give us. So, finding an online community where we can discover what we have in common and share both our experiences and questions has been immensely rewarding. With 700+ members across practically every time zone I can ask a question anytime and have it answered within minutes.
Besides this being a love note to my support group, I wanted to share a sweet and funny coincidence. Several weeks ago, two other members and I discovered we were all in the midst of stims for an IVF cycle at the same time. One woman is in the UK and already has a young son conceived on her first round of IVF several years ago. The other, like me, is a first-timer in Connecticut. Completely by coincidence we all ended up having our egg retrievals on November 16th and 17th, and we all had 5-day blastocysts that were transferred on November 21st and 22nd. Over the last couple of days we’ve discovered that all three of us are pregnant! The English woman’s due date would be August 8th, and we two Americans would be due August 9th.
I know it’s still very early – we’re all still going for our second betas this week and will be having lots of scans and tests before it’s a bit more of a sure thing. But isn’t that a crazy, wonderful coincidence? There aren’t very many women in the group going through IVF at any given time, and to have three of us successfully cycle together totally by chance is amazing! I feel such a connection to them, even though they live thousands of miles away. I’m really, really hoping all three of us have healthy pregnancies and will all be enjoying our newborns nine months from now.
I don’t have any real news to report today. I’m still feeling incredibly tired and alternately famished and queasy. Last night I went to a party and could barely keep my eyes open after 10 pm – and I’m normally such a night owl! My husband has been such a sweetheart about making me food and putting up with my intermittent grumpy spells.
We’re nervous but hopeful for tomorrow’s second beta test. The only thing that’s worrying me is that I’ve had mild cramping on and off over the last few days, but from what I can find online that’s normal. I haven’t had any spotting which is good.
Please keep us in your thoughts tomorrow as I have my second beta done. I’m really hoping everything is on track.