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Volume 20 June 2020
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Family Building PTF

On June 14, 2020 we discussed how women with CF choose to build their families. We had a very informative discussion on fostering when you have CF. Then, attendees listened to the Family Building chapter team discuss the myriad of ways in which to build your family when you have CF-with or without children.

Cheriz Kunkel, a women with CF, reflected that she had discussed family building with her future husband. They knew they wanted a family but that she would not be able to have children. They called adoption agencies and they suggested taking classes to be a foster parent. In most states, these classes are offered online or in person. After taking the class, they stopped pursuing surrogacy and adoption to focus solely on foster care. There are many steps involved in fostering: physicals, CPR training and lots of paperwork. Her doctor told the agency her health was stable and they set up childproof safety procedures to store her medications.

 
To help defer costs, there is a stipend provided. The state provides information on how to spend those funds. Cheriz discussed the two hardest part of fostering. First, the children share their stories, some of which are very difficult, and the children arrive with nothing. There are four different types of fostering. You can request a long term placement, a short term placement, be open to emergency placement or provide respite care. Before any placement, the agency gives you information on the child or children and if they have any special needs. While it is hard to do so, Cheriz says you can say no to a prospective placement. However, she realized that her no is another family's yes. Fostering can bring about different time management issues. In addition to tending to your needs, you have to tend to the child/children and ensure they attend medical appointments, family visits and court appearances. She wanted to ensure that her placements were not scared of her health or the treatments she needs to do to stay healthy. When she is sick or in the hospital, they can decline placements and they also have a strong support system to help out during those times. The thing to remember when you foster is that the goal of the system is to reunite children with their families. Cheriz said saying goodbye is difficult but she knows that she played a role in advocating for that child and providing that child with love and a home during a very difficult time. She gave up her career to focus on fostering full time when she is healthy. She feels her CF has given her more empathy and a stronger desire to advocate for special needs children. She and her husband are open to adopting a child through fostercare but that has not happened yet. 
Parenthood PTF


On June 29, 2020 a panel of women with CF discussed becoming a parent while having CF. They spent time discussing their unique situations and the lessons they have learned. Then they shared advice for others planning to become a parent. Afterwards, attendees broke into groups to discuss parenthood when you have CF.

Kristin Dunn was able to become a parent via surrogacy. While she did not physically endure the pregnancy, she did do plenty of preparations for the baby's arrival. First, she did a tune up one month prior to the birth. Second, she set up her support system to help her balance being a mother while taking care of her health. She prioritized doing her treatments and getting enough sleep so she was better able to care for their baby during the day while her husband worked. Third, she worked out a daily schedule. For example, her husband took night time feedings so that she could get enough sleep at night. Finally, like most new parents, she read parenting books and thought she knew what she would not do. Like many parents, some best laid plans change through experiences. For instance, she always felt that co-sleeping was not the best option. However, she and her husband realized their son slept better and longer when he was with them. She also learned that the later he went to sleep, the more he was awake in the evening when his father was home. This gave Kristin time to take care of other things around the house and to tend to her medical routine. She also opted to not put her son in daycare to avoid getting germs. His pediatrician mentioned that it did not prevent her son from bringing home germs, it just put it off until he starts school. She has been upfront with her son about her CF. He helps with treatments, helps with cleaning her nebs and attends clinic vistis with her. They explain her hospital stays as a "very long doctor's visit." Many parents with CF rely on their immediate family for extra support. Unfortunately, Kristin's support system shifted with the passing of her parents. She has worked to find other opportunities to support her husband and her through their parenthood journey.

Jen Bleecher has a daughter, Claudia, who is 24 years old. Jen had been a pediatrics nurse for over 20 years. She has been a single parent, a remarried parent and a step-parent. She made her care part of the family routine because she felt it was important for her daughter to see her taking care of her health. While she did not strive to make CF the main focus of their routine, she wanted to normalize her disease. As her daughter got older, she was able to give her routine tasks around the home which helped lessen Jen's load of being a single parent. Jen's first hospitalization occured as her daughter started kindergarten. This disrupted her routine because Claudia had to stay with Jen's parents. She was very grateful for their help during the early years. Luckily, Claudia had great friends whose parents helped out, as well. This has forged lifelong friendships for both Claudia and Jen. Jen advocates for answering children's questions about their parents' health honestly but in an age appropriate way. When her daughter worried about her health, Jen told her that she would tell her when to worry, otherwise everything would be okay. She maintains this outlook even as she registered to be on the lung transplant list. Sadly, Claudia's father died in a car accident years ago. When discussing the tragedy, Claudia admitted she had tried to prepare herself in case her mother passed but never thought of losing her father. It is hard to hear that your child has had anxiety about your health. Jen says that being a parent made her take better care of herself so that she was able to share in her daughter's milestones like her recent graduation with a Masters in Occupational Therapy!
No information shared in this newsletter is intended to be be used as medical advice and/or treatment. 
Infertility Blog
Failed by Science: My Infertility by Carrie Ives

We’ve decided to stop trying to get pregnant. We won’t prevent, but we’re going to stop tracking, stop the guaifenesin (Mucinex) at the first half of the cycle, stop using the PreSeed lube and stop trying to have sex during the “right time” of the month.

We feel that we have tried all of the things we can try to increase our chances. I’ve stopped with all caffeine. I’ve tried whole-fat dairy and limited dairy. I’ve done acupuncture. I’ve tried Chinese herbs. We purchased an expensive Ava bracelet (a very good tool) to track basal body temperature, heart rate, and various other indicative measurements and I diligently wore it every night (91% of the time) for months and months. I went on the drug Trikafta, a CF drug known in the community to be “amazing” and “miraculous” with its conception ‘side-effect,’ specifically to help with getting pregnant - even though the other side effects disrupted my health for months and changed the way I have to eat. We’ve both had our levels of various things checked, in some cases multiple times. We’ve gone on vacations and tried to forget where we were in the cycle. We’ve had sex “unromantically” (such a nice euphemism) more than once.

We’ve been trying for 18 months total, including 15 cycles with Ava and 6 months with Trikafta. Many couples try to conceive for years. I know that 18 months is a drop in the bucket comparatively. But I’m sure many of those couples start younger and are often otherwise healthy. I’m 42 with CF, CFRD and post-transplant. Each month increases the risks to myself and to the health of the baby.

I’m tired. I’m tired of doing everything I can think of and still failing. I’m tired of feeling like I’m failing when I know I’m “just” not being successful at something that clearly requires some factor that is missing.

It annoys and frustrates me that the scientists who work with CF patients have not done any good scientific studies on CF women’s fertility/infertility. There is a general understanding that the cervical mucus is thick, but there’s no quantifiable method to test it in an individual, at home or through a regular (or CF specialist) gynecologist. There is some knowledge that the pH balance and amount of fluid in the uterus is different, and somehow that knowledge is available to Canadian CF doctors, but not to US doctors.


I have been able to gather that there was one study of cervical mucus in 1973 using 3 women with CF, without taking into account the timing of their cycles. Since then, the latest study is one happening now (2020) with a total of 33 women - 11 with CF on modulators, 11 with CF not on modulators, and 11 non-CF women. Even that is pretty small.

We hoped the Trikafta would adjust all three of those levels - cervical mucus, pH and fluidity balance. Many of the women who have been getting ‘surprise’ conceptions after years of infertility have been conceiving within the first six months of starting Trikafta. So either we have a longer wait, or it’s not working for me as well as for other women.

In addition, there is an unknown level of increased infertility that comes from being post-transplant. Whether that’s from a particular medication or something else, well, no one knows that either. So maybe that’s what is keeping me from conceiving, even if all the CF stuff is now “fixed” through Trikafta.

Because there is such little data, the best the reproductive endocrinologists can say is “the next step is to try IUI.” This will help if thick cervical mucus is the only issue, but if there is a pH balance or fluidity issue, IUI won’t do anything. IUI in normal circumstances increases the chance of conception to a grand total of 10% success rate per cycle. Really? This great option increases conception rate to 10%. And if we were to go the IVF route - which we don’t want to do due to the increased strain on my body and the potential for endless emotional and expensive cycles of treatments - that success rate is only 20% or so. And of course, there isn’t data specific to IUI or IVF in women with CF.

In my whole life with CF, I’ve been trained to get as specific a diagnosis as possible. Which bacteria is growing? What antibiotic is it susceptible to? Do we need a combination of drugs? Ok, we’ll do that. In this one area, I feel the CF scientists have betrayed me. We have no good knowledge of how the typical CF woman’s body behaves, and we have no way of testing me to find out how my body is behaving. I didn’t believe my “fix” would necessarily be an easy one. It might be “we know what’s wrong, and there’s nothing we can do.” It might even be “we know what typically happens with women with CF, and you aren’t fitting that picture.” But having no scientific/medical answer for even the average CF woman is shameful.

Is it because it’s a “women’s issue?” But breast cancer has gotten tons of research. Is it because it’s a fertility issue? Congenital absence of the vas deferens in men with CF has been common knowledge since the 1970s. Somehow, in some way, for some reason, the CF scientific community has failed us women in this matter.

 
No information shared in this newsletter is intended to be be used as medical advice and/or treatment. 
Parenthood Blog

Lessons Learned by Katie Crossland (mom of Michael, 11)
My name is Katie. I am a wife, mom and friend. From an early age, I knew that I wanted a family. My husband Cody and I married when we were 21. He is my biggest supporter and he has cheered me on with my family. When Michael was born, life was a little crazy. I had some complications with him (not CF related) and he was born 6 weeks early. He spent 4 weeks in the NICU. It was hard for me not only coming home with no baby but having had a c-section too. I had to balance getting back to my CF daily regiment and going to the hospital every day to see him. Thank goodness for my mom and family because they were my support system from day one.
 

Once he was home, life was a big adjustment. When he was little, I could just put him in his bouncer beside me while I did a treatment. When I went back to work, I got up at 5 am to do a treatment and to get ready before he woke up and I would do a treatment after he went to bed. Those were long days and late nights. To be honest, I did not work out very much because it was hard enough just doing what I needed to do.
 
As he got older it was easier. He would sit with me while I was doing a treatment. He used to sit and strap my vest on like mommy. He would put on gloves and push my pole around acting like he was a doctor when I had home IV’s. It was the cutest thing ever. Then when I would disappear for a week b
ecause I was admitted, my husband would bring him to the hospital to show him I was okay. During the summer, I started taking him to clinic so he could see what I went through and to understand that everything was okay. I never hide my treatments from him or the medicine I take. He always asks me if I have done my meds and most days, he plays cards with me while I do a treatment.
 
Now that he is 11 (preteen!), it is easier to juggle my health and my family. When he was younger, it was hard to take care of myself. I wanted to do everything: be the best mom & wife, cook, clean, and be on the go so I did not miss out. I had to realize that it is okay if the house does not get picked up. No one would worry about a mess but if I did not take care of myself, people would worry. My parents really help as much as they can. Whenever I go to the hospital, my family steps in.  I cannot tell you how important it is to have a strong support system. When I can not take him to baseball practice, or be at a school function because of my health, my family steps in. They have been amazing. 
 
It is crucial to make a schedule. From day one, Michael was on a feeding and eating schedule so I would work around that to fit in my CF care. Even now he is still on a schedule and it makes it so much easier to take care of myself. Once I stopped working, I took my health more seriously. I started to make time to work out. Michael would talk to me when I was on the treadmill or I would make him read to me. Anything to distract him so that I could get my exercise in! He's older now so he wants to take walks with me and lift weights with me. He is very entertaining to say the least. I also have a great friend that pushes me to work out and encourages me and tells me I can do more. That has been the biggest improvement in my exercise.

No information shared in this newsletter is intended to be be used as medical advice and/or treatment. 
Governance Board Updates
The Governance Board will have some openings during the remainder of the year so the GB is actively working on an an offboarding process and an application process. Presently, the board is comprised of 6 patient partners and 5 researchers/providers. Each GB members serves 3 years and serves on a subcommittee: Group Norms, Communications, Meeting Planning or Grants. Each group meets separately to work on their assigned projects and reports their activites during the monthly GB meeting.  

The GB is also actively working on grant applications.
 The goal is to secure future funding for CFReSHC activities in the coming year. The Eugene Washington Award through PCORI will end in August. The team has submitted the paperwork for a one year extension. Another group from CFReSHC is applying for a Eugene Washington Award. The application is due by the end of July and it is uncertain when decisions will be made on awarding new grants. The Grants committee is meeting monthly to find other grant opportunties and to match researchers with patient partners to apply for applicable grants. 
Please Join Us in July

Please join us on Sunday, July 12, 2020 from 7- 9 pm ET (6-8 CT/ 5-7 MT/ 4-6 PT) to learn more about Menopause in CF. We will have a panel of women with CF (Toni Riggio, Julie Desch, MD. and Jeanie Hanley MD.) talk about their experiences with menopause. The Menopause team will present information from their chapter for the resource guide written by patients for providers and patients and attendees will discuss their unique menopause experiences and/or concerns. This will be a great discussion for those facing menopause or for those interested in what menopause looks like for women with CF.

Please RSVP to get log-in and case sensitive password. All PTFs now require RSVPs to avoid zoom bombing, however, you can RSVP up until the time of the meeting. Send an email to: info@CFReSHC.org to RSVP or click button below.
RSVP for Menopause PTF Now
How are you handling COVID-19?
While the CF Community is used to social distancing, MOST people are not.
Do you have humorous stories to share?
Do you have something fun you are doing with your time?
Let us know! 
email: info@CFReSHC.org
Breaking the Boredom Blog by Laura Melville
 
VIRTUAL CF SUMMER RETREAT--FREE REGISTRATION!
 
CFRI’s annual CF Summer Retreat will take place virtually from Thursday, July 23, to Sunday, July 26, 2020. The retreat is open to those with CF, their family members and their caregivers. Holding the event virtually is a great opportunity for members of the CF community from across the world, who have not been able to attend the retreat before and/or are curious to see what it is like, to enjoy some fun activities. Proposed activities include:
  • Educational presentations: Financial Planning, Body Image and Sexual & Reproductive Health
  • Exercise classes: Yoga & Pound
  • Special events: Movie Night, Talent Show & Improv Class
  • Games: Jeopardy! & JackBox Party Games
  • Arts & Crafts
  • Support group sessions
CFRI holds the Adult Retreat each year to enhance education, positive coping skills, and social support for people who share common experiences with CF. I have attended the retreat twice and this is my second year to be a part of the planning committee. The retreat is a great way to learn something new and to do something different while meeting others in the CF community.

You are welcome to attend as much as you can. Before the event, we will send you a link to join, a detailed schedule, and a welcome care package via regular mail. Myself and the other members of the committee hope you will join us to break free from the boredom of COVID-19 and have some fun! We look forward to meeting you during the four-day event. 

Registration is required. Click link to register: https://cfri.org/virtual-cf-summer-retreat/ 
Sponsored by AbbVie and Gilead Sciences.
Register for FREE CF Virtural Retreat

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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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