Relationship with care team
Jun 03, 2019 04:44 pm | Tré LaRosa
Replies: 0
Patient relationship with their care team is of the utmost importance. Studies have shown that patients who have good relationships with their doctors attend appointments more frequently and better adhere to their treatment plans.
- What is your relationship with your doctor like?
- In what ways could it be better?
- What are some things you’re appreciative of?
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Genotype
Jun 03, 2019 04:39 pm | Tré LaRosa
Replies: 0
Mutations play a large role in CF – outcomes, access to meds, and more. It can also make people feel lost when they have a rare mutation or a hard-to-fix one.
- What are your mutations?
- What is your general health like? (Feel free to not answer if you aren’t comfortable.)
- What are some things you’d like to better understand about mutations?
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Being a Dad with CF
Jun 03, 2019 07:22 am | Luisa Palazola
Replies: 0
Original post found here.
Day 30 of 31 Days of CF⠀
Topic: Being a Dad with CF⠀
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This is Chad’s story⠀
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The Grinch’s heart may have grown three sizes when he discovered that Christmas didn’t come from a store, but I think mine grew ten times when I held each of my boys for the first time. ⠀
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Being a dad with CF certainly comes with its worries and challenges. I worry that this disease may rob me of the chance to see them have their first day of middle school, cook their first meal for our family, drive a car, or for them to decide what their dreams are and a take a risk to get there. I worry, that it might rob them of a dad to teach them that it’s ok to cry, that it’s ok to love and that it’s ok to ask for help. I worry that I am missing part of their life as I struggle with the challenges of balancing hours of treatments, clinic visits and my care with the regular parts of being a dad. ⠀
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But both of my boys, Liam who is about three weeks shy of his 9th birthday, and Tate who is five, have taught me more about living in the 9 years that I have been a dad than in all the previous 29 years combined. I wait to hear the sound of their feet each morning as they run down stairs to sit with me while I do my treatments. We dance and sing our way to school, we build legos, dig in the dirt and go for family bike rides. I am a shoulder to cry on when they have a tough day, a kisser of boo-boos and a master tickler. Despite the hurdles, the two of them (along with my incredible wife) are my inspiration and the source of my strength, smile and laughter. ⠀
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Yes, having kids has, at times, added to the weight of this disease but I would not change it for a second. While my family provides me with the inspiration and strength to work harder, CF has given me the ability to value and appreciate each moment with them. |
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AffloVest Giveaways Helping to Support CF and Legacy Foundation, International Biophysics Says
Jun 03, 2019 12:29 am | Cystic Fibrosis News Moderator
Replies: 0
International Biophysics is helping build CF awareness and support through its partnership with the Underwood Legacy Foundation and AffloVest donations. Read more about their work together here.
What do you think of this partnership? |
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Stomach issues
May 31, 2019 07:16 am | Tré LaRosa
Replies: 2
Last week I was having some severe stomach pain. It was to the point where it was debilitating and I almost had to go to the ER. I drank some Miralax and upped my dosage of omeprazole after chatting with my doctor. It seems like it’s significantly helped with my stomach problems.
- Have you had stomach pain? Do you know what caused it?
- Are you on omeprazole?
- What solved the problem, if it was solved? (I’m so sorry if it wasn’t!)
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A Mother’s Fear
May 31, 2019 05:27 am | Luisa Palazola
Replies: 0
To see original post, click here:
Day 29 of 31 Days of CF ⠀
Topic: A mother’s fear⠀
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This is Becky’s story: ⠀
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Let me start by telling you that this has been the hardest thing I have ever tried to share. Days upon days have been spent in tears, revisiting this because saying it out loud almost feels taboo. ⠀
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There is a fear that has stopped me in my tracks at least once daily for the last eleven years.⠀
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From the very beginning of my daughter’s life I have had to live with the reality that one day I may watch her lose her fight. The moment I laid eyes on her I could not fathom a world that she wasn’t a part of. And within days of her birth, I have had to try & process the dark cloud of stats that looms over a CF diagnosis. And if she is lucky enough to surpass her life expectancy, I will still spend countless days watching her suffer and in pain while I stand by, helpless. ⠀ ⠀
The stats tell us less than half of CF patients live into adulthood. That many patients will need a transplant because of the damage CF does to the body. CF related diabetes, feeding tubes, and ports are a norm within the CF community. She will think nothing of taking dozens of pills and spending hours daily maintaining some resemblance of health. ⠀ ⠀
With every loss in the CF community my mind goes to this dark place. There is someone living my biggest nightmare.⠀ ⠀
I know that one day her body may be held hostage by a bacteria or virus that practically feeds off of antibiotics. I know that this can happen at any age and be potentially fatal. I carry the heartbreaking reality that she will at times fight for every breath. ⠀ ⠀
It terrifies me how she will process this for herself mentally?⠀
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I am most scared that one day she will be gone and I will have regrets. I didn’t take more chances or sacrifice more to make her wildest dreams come true. That more days and dollars were spent trying to do all we could to keep her healthy than were spent living; throwing caution to the wind because tomorrow isn’t promised. ⠀
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I feel guilty that the stats haunt me because I do have hope for the future. But, she is my girl and it is heartbreaking to not be able to take this burden from her. |
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Dating, cystic fibrosis, and when it comes up
May 31, 2019 05:15 am | Luisa Palazola
Replies: 0
Dating and CF:
My therapist and I talk about dating a lot. We also talk about my CF a lot.
I told her that I’m pretty open with my disease. That sometimes I practically say “Hi, I’m Luisa and I have CF.”
Maybe not exactly, but CF comes up pretty quickly. Which, she didn’t quite agree with, so she suggested I wait and let my dates get to know me, and allow me to get to know them.
That I’m not my disease.
She also sent me home with an assignment: to write who I am, good and bad, and only mention CF at the very end.
I understand where she is coming from, I truly do. But, the more I’ve marinated this idea and gone out on dates. I’m recognizing that my disease is and perhaps always will be intrinisically connected to who I am. And, leaving that detail out not only feels unauthentic to me, it also makes it hard to explain my job, my passions, and connections. I see my life through the lenses of having always been sick, my perspective is and always will be influenced by growing up and living with a chronic and terminal illness. I kinda want to live a life where I can embrace that.
1.How do you approach dating?
2. When do you open up about CF — have you experimented with timing? |
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Breakfast
May 31, 2019 02:15 am | Tré LaRosa
Replies: 0
We’ve all heard that breakfast is the most important meal of the day. I believe it, but eating a consistent solid breakfast has been difficult for me. I’m not the best cook and I don’t think it’s great to eat heavy sugar cereals every morning.
- Do you eat breakfast? What do you eat?
- I’ve noticed I’m not very hungry when I wake up. Are you? When are you most hungry?
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Ensuring we get a good night’s rest
May 31, 2019 02:12 am | Tré LaRosa
Replies: 0
It seems too good to be true that getting consistent good rest could have concrete positive effects on our lives. But it really does make sense. Our bodies and minds need time to rest and recharge. Unfortunately, anxiety and not feeling well can make it difficult to get a good night’s rest. And on top of that, certain medications that assist with insomnia may help us get to sleep or stay asleep, but a lot of times they disrupt REM sleep, so maybe we get to sleep, but it isn’t very good rest.
- Do you consistently get good rest? Have you noticed how much better you feel when you’re well-rested? Or how poorly you feel when you’re not?
- Do you have any strategies or routines that help you to get good rest? What are they?
- Do you use any medications to help you sleep? What are they?
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