Cystic Fibrosis Q&A (Part 2)
"3 words to describe living with CF?"
1. hard
2. tiring
3. limiting
"How many different medications do you have and when do you take them?"
I have eight different tablets and two nebulised medications that I take everyday. I have seven different tablets in the morning but the majority are two or more tablets for each different one, then there's three different ones at night. I take Creon with food and I do the nebulisers in the afternoon with physio.
"Did you know you had CF as soon as you were born?"
No, I was diagnosed with CF via heel prick test when I was 4 weeks old.
"What's the hardest thing about CF?"
Without a doubt it's having other friends with CF die. A couple of weeks ago I had at least one person that I knew with CF die a day for about a week. It's definitely hard.
"What's the best way to describe CF in a few words?"
I always used to say it's like Asthma but worse and affects more organs. Now I try and give a brief explanation of CF. Most of my friends have actually just found out that I have CF from social media and have Googled it themselves to find out about it.
"What's the worst/best hospital visit you've had?"
The best? I'm not really sure. I did meet the Swansea City football team in clinic once though! The worst is probably the second time I had a bronchoscopy which was early 2016 or 2017. I went down to theatre fine but during the bronch I went sick, this ment that whoever was in the room during the procedure had to turn me quickly otherwise I'd choke and die! I spent the next few days laying still in my hospital bed in so much pain, I could barely move. I could barely talk! Another bad hospital visit I had was in maybe 2013. I was in a small room for a doctor to insert a long line (they only do these when the patient is knocked out now, a few years ago you were awake when they did them!) and the doctor and a nurse were stood to my right, my mother was on my left, a play nurse and another nurse were stood at the foot of my bed. The doctor put the needle in my arm and there was suddenly blood everywhere, all over his shirt (he wasn't wearing an apron, and the nurse wasn't wearing gloves either) and then my mother was on the floor. She had fainted! I was freaking out so much beacuse I hated having a long line inserted anyway but with all of that happening I was a mess.
"Does CF affect your confidence when meeting new people?"
Definitely! There's always that little bit of me that says to stop because I don't know how long I'm going to live and I don't want to hurt so many people. There's also a part of me that's worried to bring it up at all because of things people have said in the past.
"Have any of your relationships suffered because of CF?"
Not that I'm aware of. The majority of my friends just deal with CF and help me as much as possible.
"How does CF affect you in your everyday life?"
Obviously I have to remember to take a bunch of different meds at different times which is annoying, I have physio to do in the afternoon too which sometimes I have to skip because of plans. The worst thing is when I'm unwell and I have to get through a normal day whilst feeling like I'm dying.
"What is the earliest age you can be diagnosed with CF?"
Babies can be diagnosed at about 4 weeks old via heel prick test however if a pregnancy is at high risk of CF then tests can be done to diagnose the baby whilst still in the womb!
Thanls again for asking more questions!
Shannon x
1. hard
2. tiring
3. limiting
"How many different medications do you have and when do you take them?"
I have eight different tablets and two nebulised medications that I take everyday. I have seven different tablets in the morning but the majority are two or more tablets for each different one, then there's three different ones at night. I take Creon with food and I do the nebulisers in the afternoon with physio.
"Did you know you had CF as soon as you were born?"
No, I was diagnosed with CF via heel prick test when I was 4 weeks old.
"What's the hardest thing about CF?"
Without a doubt it's having other friends with CF die. A couple of weeks ago I had at least one person that I knew with CF die a day for about a week. It's definitely hard.
"What's the best way to describe CF in a few words?"
I always used to say it's like Asthma but worse and affects more organs. Now I try and give a brief explanation of CF. Most of my friends have actually just found out that I have CF from social media and have Googled it themselves to find out about it.
"What's the worst/best hospital visit you've had?"
The best? I'm not really sure. I did meet the Swansea City football team in clinic once though! The worst is probably the second time I had a bronchoscopy which was early 2016 or 2017. I went down to theatre fine but during the bronch I went sick, this ment that whoever was in the room during the procedure had to turn me quickly otherwise I'd choke and die! I spent the next few days laying still in my hospital bed in so much pain, I could barely move. I could barely talk! Another bad hospital visit I had was in maybe 2013. I was in a small room for a doctor to insert a long line (they only do these when the patient is knocked out now, a few years ago you were awake when they did them!) and the doctor and a nurse were stood to my right, my mother was on my left, a play nurse and another nurse were stood at the foot of my bed. The doctor put the needle in my arm and there was suddenly blood everywhere, all over his shirt (he wasn't wearing an apron, and the nurse wasn't wearing gloves either) and then my mother was on the floor. She had fainted! I was freaking out so much beacuse I hated having a long line inserted anyway but with all of that happening I was a mess.
"Does CF affect your confidence when meeting new people?"
Definitely! There's always that little bit of me that says to stop because I don't know how long I'm going to live and I don't want to hurt so many people. There's also a part of me that's worried to bring it up at all because of things people have said in the past.
"Have any of your relationships suffered because of CF?"
Not that I'm aware of. The majority of my friends just deal with CF and help me as much as possible.
"How does CF affect you in your everyday life?"
Obviously I have to remember to take a bunch of different meds at different times which is annoying, I have physio to do in the afternoon too which sometimes I have to skip because of plans. The worst thing is when I'm unwell and I have to get through a normal day whilst feeling like I'm dying.
"What is the earliest age you can be diagnosed with CF?"
Babies can be diagnosed at about 4 weeks old via heel prick test however if a pregnancy is at high risk of CF then tests can be done to diagnose the baby whilst still in the womb!
Thanls again for asking more questions!
Shannon x
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