Added: 5 months ago
From: hollyrosanna
Views: 3,020
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  • you should keep making videos not just about your CF but your daily life. Just an idea :)

  • All this regimen..i can't imagine it. You must have a strong personality to keep focused. Thanks for explaining it , it was very interesting. Actually i was going to say you could be a presenter or journalist, you have a realy engaging way of presenting informaiton.

  • Hi, just interested to know, do you have to flush out your portacath in between hospital visits?

  • hey um, i have cf but i dont hav ea portacast, i rreally dont want one cause ive got a sevre fear o fneeles and things goin into me, sorry im just really scared now, im 14 and ive only been in hospital twice, do you think ill have to egt one?? D:

  • @supersmileyface97 hi i have cf aswel and have a port cath. if you have only been in hospital twice in your whole life. you won't be getting a porta cath soon. they would only give one to you, if you get admitted into hospital more than at least once a year. good to hear you are so healthy!!!

  • O...M...G! That almost made me cry watching that... I haven't had IV's in 17 years now but they're well and truely in the post... I know I have all this to come myself. Can I just ask a question? In your 1st clip, you said you was infected with a very nasty specific resistant bacteria... I "only" have chronic Pseudamonas infection, I've heard of the Capacia species, is this what you have? I would really like to know :) Btw, IV's may have destroyed your veins but not your good looks! Take care :)

  • How come they do no allow you to do your antibiotics at home? why do they make you stay in the hospital?

  • This is so interesting! But it shows that my baby's life with CF has just barely begun....

  • @FalseDisposition Keep strong! I have CF and I was very sick when I was younger, BUT around 6 or 7 I got wayy better. Ever since then my CF is only bad when I'm sick which usually isn't often. You never know your baby could have a mild case of it and still be a healthy happy kid. Just keep praying and stay hopeful =)

  • Hi Holly,

    Thanks so much for sharing. I'm in the hospital now for a 2-wk tune up & probably going to get a port placed next week. It was nice to see that you have a port & that it doesn't stick out like a sore thumb even though you are very petite (as am I). It's my biggest worry that I won't be able to wear what I want because the port will stick out too much (pure vanity - I know!!). Thanks again for sharing. Be well! :-)

  • Well that was cool. Holly I hope your ok. I felt sick with the blood. I can't beloved that you are in there by yourself.? I'm only 13 but I would never be able to stay at a hospital alone. Then again you 18 so.

  • you are way too pretty!

  • You look way prettier than I ever did in 2 weeks in the hospital. :)

  • Thanks for ur Vids, It has certainly made me aware of what CF is about! best of luck for the future xx

  • stay strong, i'm living the same, did your PFTs go up?

  • This was very comforting for me =] I am 14 years old , i have CF i was diagnosed when I was 2 years old ; I am on the IV right now ; I should be in the hospital but im at home ; I have a medi-port on my right side too!

  • A port is a last resort when using veins isn't an option anymore.

  • @83N170 , im 13, and i got mine inserted when i was 4.

    And @hollyrosanna, i love your videos ! I have CF also. Breathe easy ! Oh, you should also check out @candlewaxidents youtube channel. He has CF and is selling bracelets ! All money going to the CFF

  • Wow, very informative. I assume they had to wait until you stopped growing before they could install the portacath in you. Otherwise they could have saved scarring the veins on your arms. Do you have internet connectivity during your hospital stays?

  • Good video!,

    You go Glenfield ? i recognise that orange chair anywhere lol

  • Very interesting, Holly! Do ports clog very often?

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