@edinboro
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Patti Rowland replied to the topic Hemopytsis, hormones, and life in the forum Adults With Cystic Fibrosis 1 week, 5 days ago
My daughter has noticed an increase in coughing up blood. Fortunately hers have always been small amounts (teaspoon size) and even if she coughs up a few days in a row, she may then go for up to 3 weeks with no Hemopytsis. Still its scary and sometimes embarrassing for her.
She is on Trikafta and since she was in the clinical trial may have been…[Read more]
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Patti Rowland replied to the topic Patients denied transplantation because not covid vaccinated in the forum Coronavirus (COVID-19) and CF 4 months, 2 weeks ago
Thank you Lisa for posting the link to the article. I enjoyed it, especially since it was written by actual Doctors!
I hope the worst of this pandemic is behind us. Not everyone has the luxury of “isolating themselves during flu season” or taking off work from Dec – March.
My adult daughter is the one with CF in my family. I was in the Moderna…[Read more]
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Patti Rowland replied to the topic Patients denied transplantation because not covid vaccinated in the forum Coronavirus (COVID-19) and CF 4 months, 3 weeks ago
Taking these people off the transplant list was the right thing to do.
Is the patient not worried about the inflammation to the heart caused by COVID itself?
The same people using the no vaccine because “fetal cells were used” excuse are getting monoclonal antibodies that also used cells derived from fetal tissue year ago. It’s just become their…[Read more]
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sarais var and
Patti Rowland are now friends 10 months, 3 weeks ago
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Patti Rowland and
Jenny Livingston are now friends 1 year, 1 month ago
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Patti Rowland posted an update 1 year, 1 month ago
@timothybransford I am actually the mother of a 27 year old CFer. Nothing warms my heart more than having you say “the ramblings of a 65 year old Cfer!” When she was diagnosed at 10 I worried those were words she may not get to ever say.
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Patti Rowland and
Timothy Bransford are now friends 1 year, 1 month ago -
Patti Rowland posted an update 1 year, 1 month ago
does anyone else feel like all CF patients are just given a standard treatment plan regardless of the progress or lack thereof, of the patient?
Is everyone else kept on a daily, no break from inhaled antibiotics no matter the PFT number, weight and current health of the patient? Even when the sputum samples are clear?-
Patti, yes. This is definitely something I’ve been frustrated with in the past. However, I found that in some cases, I’ve been able to initiate a discussion about these things with my care team, leading to a change in routine or medications. I feel very lucky to have a team that is is so willing to work with me to find the best care plan for…
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Patti Rowland became a registered member 1 year, 5 months ago
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Hi, Patti! Thanks for joining us here on the forum. I’m Jenny, one of the moderators here. I’m 33 years old with CF and an 11 year old daughter who is the light of my life. I saw in your profile that you’re a mother as well! If you ever have questions or need help, please don’t hesitate to reach out to myself or my co-moderator, Bailey. We are…[Read more]
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Hey Patti, it’s so nice to meet you! My name is Bailey, and I am one of the moderators here along with my friend Jenny (whom I’m sure you’ll meet soon!) We post daily thoughts and topics to be sounding boards to or from, but are also here to support you in any other way needed. Happy scrolling, and let us know if we can help with anything
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Patti Rowland
Jenny Livingston
