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Rudy Steele became a registered member 9 hours, 19 minutes ago
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William Ryan replied to the topic What do you find is the reason behind most of your hospital stays? in the forum Adults With Cystic Fibrosis 5 days ago
It’s awesome you’re able to take a modulator, even with a rare mutation. Hopefully there are quicker hospital stays for you along the horizon
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Timothy Bransford replied to the topic What do you find is the reason behind most of your hospital stays? in the forum Adults With Cystic Fibrosis 6 days, 2 hours ago
Hemoptysis. Brought on by a lung infection that just won’t die with oral antibiotics. Usually, the hemoptysis is of a magnatude that I can’t put it off any longer. At that point I’m told to go the ER and get inprocessed so they can monitor and, ultimately, insert a PIIC line for IV antibiotics. It is usually a 4 day stay in the hospi…[Read more]
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Kevin Schaefer started the topic A message of hope for parents in the CF community in the forum Friends and Family of people with Cystic Fibrosis 6 days, 5 hours ago
Read Jennifer Chamberlain’s latest column here.
Jennifer writes about learning about her daughter’s diagnosis when she was pregnant. She expresses the hardships of learning about CF, as well as how she and her husband adapted to it. She then provides a message of hope for other parents in the community.
Here’s an excerpt, “Being Claire’s mom…[Read more]
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Kevin Schaefer wrote a new item 6 days, 5 hours ago
Read Jennifer Chamberlain’s latest column here. Jennifer writes about learning about her daughter’s diagnosis when she was pregnant. She expresses the hardships of learning about CF, as well as how she and h
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William Ryan replied to the topic What are some books you’ve been reading the last month? in the forum Adults With Cystic Fibrosis 1 week ago
What book would you recommend to start?!
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William Ryan replied to the topic What do you find is the reason behind most of your hospital stays? in the forum Adults With Cystic Fibrosis 1 week ago
We must always realize the truth you said, we cannot have good days without some bad.
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William Ryan replied to the topic Favorite sports fandom memory? in the forum Adults With Cystic Fibrosis 1 week ago
The best! Go Melissa!
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William Ryan replied to the topic Monthly wins? in the forum Adults With Cystic Fibrosis 1 week ago
Vacation, especially in Hawaii, is always a win!
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William Ryan replied to the topic Side effects from antibiotics? in the forum Adults With Cystic Fibrosis 1 week ago
It’s a double edged sword, but it’s a sacrifice we must make!
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Gina Michele replied to the topic What are some books you’ve been reading the last month? in the forum Adults With Cystic Fibrosis 1 week, 2 days ago
Anything and everything Colleen Hoover. She has a wonderful way of detailing and writing her characters in ways that make them relatable and endearing – so much so that I temporarily forget that they’re just characters in stories (and not real people)!
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Gina Michele replied to the topic What do you find is the reason behind most of your hospital stays? in the forum Adults With Cystic Fibrosis 1 week, 2 days ago
Unfortunately, most of my hospital stays are with one of my loved ones, playing my part as a caretaker and doing all that I can to ensure that they are receiving the highest quality of care possible. However, I take all the good days with the bad and would move mountains for any of my loved ones… and remember, there are no good days without…[Read more]
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Gina Michele replied to the topic Favorite sports fandom memory? in the forum Adults With Cystic Fibrosis 1 week, 2 days ago
I apologize… but I truly cannot choose a favorite sports memory because I am in no way a sports fan – but I am a passionate competitive cooking show fan! One of my favorite moments from a competitive cooking show has to be when an underdog contestant, who seems in general to be a very likable and retable person (big fan here!) won Top Chef…[Read more]
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Gina Michele replied to the topic A farewell of sorts in the forum Adults With Cystic Fibrosis 1 week, 2 days ago
Hi Jenny – it’s been a pleasure reading and connecting. I wish you all the best and thank you so much for your thought-provoking discussions!
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Gina Michele replied to the topic Monthly wins? in the forum Adults With Cystic Fibrosis 1 week, 2 days ago
While I cannot pinpoint a monthly win in particular, I can say I try to take time each day to practice gratitude and remember all of the wonderful things in my life that I have to be thankful for. I also just recently returned from a great and eye-opening trip in Hawaii… if that can be considered a win!
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Gina Michele replied to the topic Finding community as a person with CF in the forum Diagnosis Information and General Questions 1 week, 2 days ago
When dealing with feelings of isolation, I usually try to rewire my thinking and appreciate the quiet time to sort through my feelings, headspace, and attempt to keep busy with whatever tasks I can. However, when it becomes too lonely or difficult to endure, I talk about my feelings with those close to me, like my husband, best friends,…[Read more]
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Gina Michele replied to the topic Side effects from antibiotics? in the forum Adults With Cystic Fibrosis 1 week, 2 days ago
Unfortunately, antibiotics and other medications that I have to take regularly (particularly, for migraines) give me a lump in my stomach and ruin my appetite. However, I always feel so much better once I make it to the other side.
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William Ryan started the topic Side effects from antibiotics? in the forum Adults With Cystic Fibrosis 1 week, 4 days ago
All of us are no strangers to antibiotics. Some antibiotics carry side effects that we’d prefer not to have and that do not agree with our bodies. From personal experience, I experienced migraines for a few days on one antibiotic.
What are some side effects for you that you do not want to deal with? What are some side effects that you can push…[Read more]
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William Ryan wrote a new item 1 week, 4 days ago
All of us are no strangers to antibiotics. Some antibiotics carry side effects that we’d prefer not to have and that do not agree with our bodies. From personal experience, I experienced migraines for a few days
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William Ryan replied to the topic Finding community as a person with CF in the forum Diagnosis Information and General Questions 1 week, 4 days ago
Usually, I deal with feelings of isolation and loneliness by writing my thoughts out or just spending time with my dogs and wife. They’re the best company you can keep! Nowadays, I find community through the larger cf community online by relating to their stories and hopefully, maybe, they’ll relate to mine.
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