Volume 19 May 2020
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CFReSHC Newsletter!

Thank you for taking a few minutes to keep up to date on our activities.
Did you miss last month's newsletter?  Find it HERE.

Pregnancy and Prenatal Care in CF
On May 14th, PTF members listened to Dr. Jeanne Sheffield, Director of the Division of Maternal-Fetal Medicine, Professor of Gynecology and Obstetrics at John's Hopkins, discuss her work helping women with CF navigate their pregnancies. One of her specialty areas is in high risk obstetrics. While there are 2000+ CFTR mutations identified, not all can by identified in pre-genetic testing. However, Dr. Sheffield advocates pre-genetic testing, especially if there is a history of CF in the family. It is important to note that testing is not perfect due to false negatives. She also finds prenatal testing important if one of the parents is a carrier. Echogenic bowels in a fetal sonogram can indicate CF concerns and prompt carrier testing.

Dr. Sheffield mentioned that pregnancy can impact CF patients. Since the diaphragm rises 4 cm, this can impede expansion and can cause shortness of breath. In addition, since patients might have increased difficulty clearing secretions, pregnant patients can experience higher rates of pneumonia and endure more exacerbations. During pregnancy, patients' blood volume can increase 30-50% to compensate for losing nearly a half of liter during delivery. This biological change can increase the chances of blood clots. Another concern is CFRD before, during and after pregnancy. Because of these issues and others, Dr. Sheffield suggests pregnant women consult a maternal fetal specialist and inquire about a multi-disciplinary team to manage a patient's care during pregnancy. 

While the numbers of pregnancy for women with CF is low compared to healthy peers, the numbers have doubled from 1998 to 2018. In fact, having a lung translplant is not a contradiction to a CF pregnancy. Miscarriages and stillbirth rates are slightly higher and premature delivery rates might be increased. Many pregnancy outcomes are dependent on FEV1 function, where women with lung functions under 50% have an increased risk of complications. Therefore, it is important to work with a team to manage CF care and medications during pregnancy. Dr. Shefflied pointed out that enzymes, some antibiotics, cortisteroids, inhaled medications and CFTR modulators can be acceptable or adjusted due to need and dose. Patients might consider discussing their nutritional status, respiratory functios, fetal monitoring testing and anesthesia concerns prior to pregnancy. Dr. Sheffield's presentation will be available on the website.
No information shared in this newsletter is intended to be be used as medical advice and/or treatment. 
SEXual FUNction

There can be many factors that affect a person's sexual function. This can include: incontinence, shortness of breath, painful intercourse, vaginal mucus, vaginal dryness, fatigue, chronic illness, or experiencing an exacerbation. Women can experience concerns with body image (size/scars), embarrassment related to coughing (which tightens the vagina), urine and/or fecal leakage during penetration or low libido as a result of medications, such as antidepressants. It is important to identify any barriers and discuss any potential treatments with a provider or partner, depending on the issue. For example, some women might find relief from vaginal dryness by using a water based, natural (sans glycerin which contains sugar and can cause yeast) lubricant during penetration. Other women might need to see a pelvic floor physical therapist to help with pain reduction, scar tissue manipulation or to treat incontinence. 
Many women at our PTF indicated that their CF clinics were not comfortable discussing issues relating to sexual function, including discussions about contraception, sexually transmitted illnesses and sexual positions that can help both males and females with shortness of breath. A first step would be for providers to accept that women with CF are indeed having sex at the same rate as their peers. Patients indicated they would like their providers to find ways to discuss the topic or to amass a referral system to handle issues related to sexual function.

In addition to women feeling comfortable discussing sexual function with their providers (CF or OB/GYN), they would also benefit from discussing it with their partners. Phronsie Sprenger, the sex therapist who attended our PTF meeting, answered some questions from women by advocating open lines of communication and a willingness to invest the time to find a solution. This led to a discussion of suggested reading materials to help women better understand their sexual function and how to work through issues like differences in sexual desire or physical limitations. While few patients might have access to a sex therapist, reading a book and working through exercises might make a big difference in one's sexual function. Some other suggestions include: do a breathing treatment or inhaler prior to sexual encounter, ensure your partner understands abstention while treating for a yeast infection, or discuss medication side effects with your provider.  
Sexual Function suggested reading materials and links: (Links indicated by purple text)
No information shared in this newsletter is intended to be be used as medical advice and/or treatment. 
Pregnancy Blog

A Journey Through Pregnancy and CFRD by Megan Lepore

Last summer at the age of 34, I was thrilled beyond measure to give birth to my son Henry. I knew, both from my primary care physician and my CF team, that due to thicker cervical mucus sometimes found in women with CF, I might have a harder time conceiving. But my team believed that my health was strong enough to safely carry a pregnancy and they supported me in my desire and journey to have a child. Our journey to Henry took 7 months of trying to conceive on our own, followed by about a year and a half of various infertility treatments, culminating in 3 rounds of IVF. While I was working full time in a challenging career throughout fertility treatments, once I became pregnant, my focus shifted significantly to scaling back my career and focusing on my health. I took extended leave through the first trimester as I struggled to manage my blood sugars and learn how to use my new insulin pump, while taking time to get plenty of rest throughout the day. After the first trimester, I started working part time, and from home so that I could rest. Blood sugar management was definitely the biggest challenge of my pregnancy, but a continuous glucose monitor and insulin pump were invaluable tools for me. While Henry is now a healthy baby, his first few days were a little bumpy. After 9 months of living inside my diabetic womb, followed by a long induction resulting in a c-section, Henry struggled with hypoglycemia when he was born and he needed a few days in the NICU. This was a surprise to me and very difficult during those first few emotional days. I knew that while babies of diabetic mothers sometimes had low blood sugar in the beginning, I had worked so hard to maintain a good range of blood sugars, and my endocrinologist and MFM had both been happy with my management. Ultimately, as all of the doctors had assured me, Henry was perfectly fine. We took him home two days after my own discharge from the hospital and a new, much longed for, chapter in my life had finally begun. 
Family Building Blog
Celebrating Pride: The Diversity and Empathy of CF Families by Xan Nowakowski

What does “family” mean outside of a dictionary? For me right now, it means the people close to me who resonate with the pain of our community being assaulted as we stand up for Black people all around the world against police brutality. If that seems a bit political for a CFReSHC blog post, good. What I want to convey, first and foremost, in describing what family can mean is the fact that family is inherently political. We, as people living with cystic fibrosis, understand this intimately, whether or not we are part of the LGBTQIA+ community ourselves.
When you have CF, other people with CF become family to you. The power of these connections cannot be overstated, especially given the danger in patients having physical contact with one another. Likewise, people find family by many other means—including connecting with those who share experiences of marginalization and hardship beyond health. This is the basic notion of Pride that the LGBTQIA+ community celebrates every summer.
In 1969, an uprising at the Stonewall Inn sharply highlighted the need for community support and mutual aid against queerphobic and transphobic violence. We celebrate Pride each year in continued action for resistance, and in appreciation of all those who have truly become family to us. This feels very similar to all the action we take as people with CF to uplift ourselves in systems that treat us as if our lives do not matter. And likewise, it feels very wonderfully reminiscent of the family we find with our peers in patient community.
So why is this relevant for CFReSHC? The simple fact that families can look very different while sharing something powerful in common through the collective experience of managing CF. All of us with CF occupy different identities that invoke the spirit of Pride. We have different sexualities, and different sex and gender identities. If you’re curious about what those things mean, you may want to check out the summer issue of CF Roundtable, which features an article exploring sex and gender diversity in CF community.
From a sexual and reproductive health standpoint, our diversity can be even more expansive as we look beyond ourselves to the context of family. Everyone with whom we share love brings different identities and experiences into their interaction with us. Likewise, we do the same with our loved ones. So families can look very different from one another, both within and beyond the CF community.

CFReSHC works to uplift all different types of families impacted by CF. This means making space for all the different sexual and reproductive health needs that being family can create. We are doing the work of making space for the immense diversity of our patient population and all those who love us. What does this look like? A lot of things, really—some examples are below.

We discuss how safe sex with CF may look different depending on the genital anatomy of oneself and one’s partners. We think about the safety and health needs of people with CF who have multiple sexual partners. We understand how patients whose partners are living with bloodborne conditions like HIV or herpes may need specialized resources. We explore how to prevent and manage pain during sexual intercourse. We make space for the history of sexual abuse so common among women, females, and femmes in general as well as people with CF who identify within the LGBTQIA+ community.
We describe how reproduction may look for patients with same sex partners, or partners who are using hormones for transition. We explore the many pathways people take to becoming parents—or to deciding *not* to become parents. We discuss the experiences of people with CF who are pregnant, or who are preparing to build their family through pregnancy, surrogacy, fostering, or stepparenting. We make space for experiences of miscarriage and stillbirth, as well as infertility.
In all of these activities centering diverse CF families, we think about how the trauma of living with a fatal progressive disease can intersect with the trauma of queerphobic and transphobic violence, and how these experiences can shape sexual and reproductive health. And in all of this, we support all people with CF and their families in leading healthy and fulfilling lives.
No information shared in this newsletter is intended to be be used as medical advice and/or treatment. 
Governance Board Updates
The Governance Board meets monthly and is divided into four subcommittees. The Group Norms subcommittee is writing documents regarding on-boarding and off-boarding members and submitting them to the GB for approval. The original plan was to have members serve three year terms. However, with grant funding, this timeline was suspended to complete current projects. With Dr. Emily Godfrey stepping down as chair, this is the prime opportunity to revisit the issue and to find new members for the GB. One of the reasons that CFReSHC developed the Patient Task Force Leadership Committee was to help patients partners become more familiar with the CFReSHC organization. Now we are looking for providers and researchers to join our collaborative in active leadership roles. The goal of the Grants subcommittee is twofold. First, members are committed to finding funding sources for CFReSHC. Second, members also work to match researchers interested in conducting Patient Centered Outcomes Research (PCOR) with patient partners. The committee meets monthly and is in the process of finalizing internal documents and establishing processes for future grants. The Communications Subcommittee is happy to report that there are over 250 women with CF on our mailing list and climbing! In addition, the committee established processes to prevent zoom bombing during virtual meetings by requiring enhanced RSVP procedures and login passwords. The meeting planning committee has scheduled the final three PTF meetings, Family Building, Parenthood and Menopause, for this Impact Award cycle. Please see below for dates and times to RSVP. We always welcome CF Clinics to share information about our upcoming focus topics with their patients.    
Please Join Us in June

Please join us on June 14, 2020 from 1-3 pm ET (12-2 CT/ 11-1 MT/ 10-12 PT) to learn more about Family Building in CF. Cheriz Kunkel will discuss fostering with CF. The Family Building team will present information from their chapter for the resource guide written by patients for providers and patients and attendees will discuss their unique families.

Please RSVP to get login and case sensitive password. All PTFs now require RSVPs to avoid zoombombing, however, you can RSVP on the day of the meeting. Send an email to: to RSVP or click button below.
RSVP for Family Building PTF Now
RSVP for PTF Now
How are you handling COVID-19?
Do you want to share your sexual and reproductive story?
Submit your 300-500 word blog to: 
The CFRI Summer Retreat by Georgia Brown
I had heard about the CFRI Summer Retreat for years. I never attended, until last year. While I was there, other members from CFReSHC texted me to ask how it was going. In a word, it was wonderful. From the moment it ended, I could not wait to go back. Then COVID-19 happened. As you probably guessed, this year's retreat will be a virtual event. (Okay so the Retreat Planning Committee spent a whole hour cursing the world and begging to be extra vigilant if we could still have it in person; to no avail because like any year, our health comes first.)

The CFRI Summer Retreat was created to enhance education, to offer positive coping skills and to provide social support for the CF community. I think this year, especially, we need all of that! So this is a great opportunity for people who have never attended to join in the fun.

The CFRI Virtual CF Summer Retreat: "Roaring Reboot 20/20" will be held Thursday July 23 - Sunday July 26, 2020. Members of the CF community from around the globe can participate in daily activities, exercise classes, arts and crafts, support groups and educational workshops. This year, two members of the CFReHSC Governance Board will serve as guest speakers. Dr. Emily Godfrey will discuss CF sexual and reproductive health and Leigh Ann Bray-PhD, RN, CNL, will discuss body image issues within the CF community. A care package with goodies and supplies will be sent to you with your FREE registration!  Visit: to register. 
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Cystic Fibrosis Reproductive and Sexual Health Collaborative · 1959 NE Pacific St · Box 356460 · Seattle, Washington 98195 · USA

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