Living with Cystic Fibrosis 3
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- čas přidán 15. 11. 2013
- Hello all!
Just a brief video updating you all on my life and how my health is!
If you have any questions don't hesitate to comment and I'll answer them in my next video.
My friend Emma's youtube channel is / cocomatova she also made videos about CF. To donate to the Cystic Fibrosis Trust visit www.cysticfibrosis.org.uk/get...
Thank you!
Holly
x
Hi Holly, as a medical student in China, watching your videos has taught me a great deal. I especially love your personal discussion on how you feel, the treatments you are taking and how this condition is shaping your life. I always read about CF in the books, but never really appreciated what this disease was all about. You, my friend just became my greatest professor on CF and every where I go, whichever exam question on CF I get or in the future, any CF patient I attend, I'll always remember you. Hats off to Holly Rosanna, my CF prof!
I will continue to pray for you as you wait for your new lungs. I don't know if you are religious, but miracles do happen. Stay strong and never give up.
my thoughts are with you holly, keep us updated and stay strong!
You will fight this, stay strong we are all here for you x
You're doing so so well! Don't lose hope and stay strong!!!
What a beautiful inspiration! A true warrior! I pray all is well!
Praying for you. Glad to hear you're still keeping your head up with your bucket list and your party! You're an awesome role model. :)
It's good to hear from you again! I'm so sorry to hear about Emma.
I've been following your videos here for a while and I just want to say good luck with everything! I hope you're eligible for a transplant. I'll be cheering for you. Stay strong!!
Thanks for all that you've taught me about CF, your videos are an inspiration for me to do my best in everything.
Stay strong and keep fighting ❤
Take care and stay strong Holly. Wishing you all the best with your tests, and I sincerely hope you can get on the transplant list! All my love
to make such a big decision is brave and your now on a big journey with emma by your side. Take care of yourself Holly xxx
SO glad you are still fighting, I have thought of you often when on you tube, so glad for the update...Praying for you and with you
You're so brave can't imagine what you're going through, all my prayers and hopes go to you and your family and I hope you can beat this condition. :) you're an inspiration and I hope others with cystic fibrosis will take the same route you have..
I am so sorry to hear about your friend. U are such a brave person I hope my 2 brothers will be like u when they grow up because the both have cf and they are all ready brave. They are only 5 and 4. This videos are really helping me. My prayers are will u!
Hey Holly, I hope you are getting better, cyster. My thoughts are with you and hope you are getting stronger! Breathe easy, luv.
It made me cry when you told us about your friend she was so young :(, but you seem a very brave person and I really hope you live a long and fun life like you deserve and I hope you get the lungs you need ,it makes me sad seeing you get worse but you will fight back :) , keep us updated xox
Thank you Holly! You really just changed my life with these videos that I have watched. As I've told you I live with CF as well but I had not been taking it very seriously these past few years... As sad as your conditioned has worsened, it has taught me a life lesson that will stick with me... on top of my uncle dying recently. Life is tough, but we suffer for a reason. Will power is the best thing that keeps us going, stay strong and stay hopeful! I'm sure you have an angel watching over your beautiful soul protecting you.
Holly, I hope you're doing well. I'm so sorry for your loss and the worsening of your condition. My prayers go out to you.
Good for you and your decision! I hope and pray you get approved! Having grown up with someone else's liver (I had my transplant when I was 11months old ish), I often take for granted how much of a complicated decision it is to make when you're older because obviously my parents just decided for me.
You are such an inspiration and this actually makes me want to make videos or write blogs etc myself on what its like living with a 'terminal' illness. It's really nice knowing there are young people out there dealing with similar situations as yourself.
GOOD LUCK ON YOUR TRANSPLANT JOURNEY! xoxoxo
Stay strong beautiful! I hope your doing wonderful now since its been awhile! Really miss seeing your videos! Your so so strong I'm praying!
Stay strong through all of this! You are very inspirational to us all and I hope all is well! We miss you!
Jesus this is so tough to watch. What a beautiful young lady, going through so so much. It really puts things into perspective. Love
You're so brave to sit and make this video and talk about Emma. May she rest in peace and I hope you get the go ahead for the transplant list. Best of luck for all your tests, it sounds pretty grueling and you really do take it in your stride. You're a beautiful young lady who really does just inspire other people and although this is a difficult video you always manage to find something positive and that's something I really look up to you for. I don't think you realise how amazing you actually are and if I could tell you over and over again I would. This part of your life and how you share it with others who have CF and may be scared or to those who don't have CF and are questioning things is something not a lot of people would choose to do, I think it's great. You're a great person and I have nothing but respect for you. Sending you lots and lots of love and hope for your tests. x
You are so brave.. I actually went to school with you.. you were a year older than me.. you have inspired me to also make youtube videos.. I have multiple sclerosis and want to start a channel... you have inspired me to do this you are so brave Holly and I wish you the best of luck with everything! Thanks for doing these videos! Stay strong my fingers are crossed for you! Alice Xxx
You're an amazingly strong, brave, and beautiful woman! I'm sorry to hear about your friend Emma. I wish you the best of luck on your tests! I hope you get your transplant and beat CF! Stay strong! I'll pray for you and Emma. Regards, Mike
I'm so sorry to see you're poorly enough to be going on the transplant list, but I am very happy to see that you changed your mind! You're a wonderful girl and we need you here :) I can see how upsetting your friends' passing was, very sorry for you and her familys loss :( it's so heartbreaking. The transplant list is another battle, I know. Recently the 2 yr mark passed that a good friend of mine with CF received his double lung transplant and I am happy to say he is doing AMAZING, it was a long journey to get them, the recovery was tough and there were complications that cropped up but he is living & breathing and doing things he wasn't sure he'd ever get to do again. I hope to see that video from you one day! Sounds like you've got an excellent support system, stay strong
Hey Holly - I just stumbled upon your video while learning about cystic fibrosis. I'm hoping you're doing well and you get the transplant as soon as possible! Sending you good vibes from Canada! All the best!
I'm sorry to hear about your friend. Best of luck to you!
My oldest daughter had a Mad Tea Party for one of her birthdays parties as well! You're often in my thoughts, and I appreciate the check in. I'm sorry to hear about Emma and that you're having to start the transplant testing, but am glad that are still fighting. Hang in there, sweet girl!
You're an inspiration to others with CF to living a full life & not letting CF ruining all your hope & outlook towards life, despite all it's debilitating effects on QoL, all the best Holly :-)
hope you are doing better now. be strong as always. love, thoughts and prayers are with u.
Stay strong and keep positive! Wishing you the best of luck
Very inspirational to see you staying so strong and brave through everything. Stay strong and know that there are thousands on your side through this!
Not sure her hearing how your friend died from a disease she has is the best thing........
Very true, and a shortsighted mistake, thank you for bringing it to my attention. Apologies to all.
Kevin Turner do you think she is not well versed in the realities of CF Kevin? I'm not sure what Jared posted but I'm sure he was just relating to her struggles. It's important for people to know they aren't alone in this. It's a terrible illness, and I imagine most of us here have lost someone or know someone in Holly's condition. The point is we are rooting for her to stay strong and do everything she can. I think your comment was just rude, sorry.
So strong to talk about your friend, i am not good talking about my friends and family who have died. Good luck with getting the transplant, i hope you hear some good news about the list soon. enjoy your trip!
Good luck with all your tests. I'll be thinking about you and hoping everything goes well.
i cried watching this video staystrong
Your amazing... I check every chance I have to see how everything is going! Stay strong!
hello rosanna, please keep on fighting! i've watched your first video and was kind of shocked to see you now in the same condition as i am in. so lets stay strong, best regards from germany :)
You are BEAUTIFUL! Keep smiling :) And I really hope you're doing OK. You're in my prayers and I hope the transplant works out. God's got you taken care of...no matter what happens :)
Never give in, people with CF are the strongest out there.
Good luck to you Holly! My friend passed away 9 years ago while on the list for a lung transplant for CF. I think about her and how incredibly brave she was. I wish you all the best. And please keep us updated. I love watching your videos.
Hi Holly. i've been following your struggles and your progress on your youtube channel. i could call you "Brave". but you might not like that word very much. As you said in one of your previous videos, you're doing what you have to do to live as meaningful and healthy a life as possible. In a slightly different way, i can understand that a bit. I am sightless. though I don't face your own life challenges, i do try to face my own the best I can. i do congratulate you and think you are a very determined and corageous young lady. I haven't seen another video about your journey. i hope you're ok under the circumstances. i guess i just wanted to say that I consider myself one of your biggest fans, and that I wish you the very best of luck. You've truly educated me about this disease; and i hope to be in a position to contribute very soon.
I pray so much that you get your lung transplant, you're such a lovely, genuine, down to earth person and as someone with CF as well, I'm right behind you, Keep Fighting! big hugs x x x
I hope it all goes well, I just did my work up for the transplant as well, I myself have CF live in Canada and am 30, I'm glad you changed your mind about the transplant. :)
so much respect for you,, get well soon
I think ur amazing and a beautiful lady .I wish you all the best .you deserve so much n ur video ,s are invaluable so people understand ur suffering n ur strength..bless ya
I sincerely hope you get a healthy and successful transplant. Luckily I have a very mild form of cf so only my lungs are affected but I can get mucus up without physio so I dont get infections and I dont know the true horror of cf. You're an inspiration to us all :)
I wish you all the best!
It looks like you managed to put on a little bit of weight. I hope so (for your health- I know you talked earlier in another video about how it was hard to keep weight on)!
Take care and I send my love!! My aunt managed to get a pancreas transplant and it really changed her life. I am cheering for you!
Stay strong! I'll pray for you!
Hi Holly, I'm thinking of you. I hope you're able to get the transplant and I hope it all goes well. You're tough and you're gorgeous and I hope for the best for you. I'm so sorry to hear about your friend. Much love xxx
Fight it girl. I'm fighting too! I'm here in bed on meds for my pain. Hope you can find a good lung. My disease effects many organs so no transplants for me . Glad you posted. Been waiting!
Hello Holly.
I hope this comment finds you well.
My name is Abby, and I am studying Nursing here in Brisbane, Australia, and my fellow students and I were referred to your video series during our studies of Cystic Fibrosis.
Thank you so very much for sharing your stories.
We have found you so very inspirational and brave to be willing to share them.
Each and every one of us here in Brisbane are wishing you all the very best with your treatments and future transplants.
Please keep us as updated as you can.
With much love - Abby, and fellow Nursing students. xox
Hi Holly, I just wanna say that it is really lovely of you taking the time to share your life with CF, in these videos. One of my best friends has CF and your videos have been really helpfull. I've gotten a way better understanding of what CF is and what it might be like to have it. I've got a question I hope you or anyone who is influenced by CF might be able to answer.
My friend just recently got on the transplant list and I want to ask if you've got any advice on the best possible way for me to support and help her through the experience. Please let me know. My own knowledge only goes so far and having someone else's input might be helpful especially someone who have been through or is going through the process themselves.
All The Best.
Fingers crossed that you get approved for your transplant!
your in my thoughts and prayers. you are very strong.
My friend is 23 he got the call for a transplant before and was denied. 3 weeks ago he got the call again. He went in got his Lung transplant and he is doing absolutely amazing. I wish you the best x
your in my prayers Stay strong
You beautiful human being
Sending best wishes and prayers for you journey! Stay Stong
Hi Holly, I really hope you are doing well and that you're still as optimistic. I want to have updates on you. Please don't give up, you're a very sweet girl. Wishing you the best xox
I wish you all the best and hope you get in the transplant list.
Good luck Holly! You'll love Lion King, it's spectacular.
You are a very strong girl! I am in awe of you. I just need half the guts you have.
I hope you are doing well. Bless you.
I have cf to, I can be tough be you have to stay strong and never give up:)
Hope your doing okay.
God bless you. Many prayers and love
I hope everything is going well and you got onto the transplant list.
I hope you do better,keep fighting.
I hope u do another video:) stay strong:) and keep fighting:)
Please update I hope you're okay
Sending you prayers and wishes for fast and full recovery, I hope you will find a matching donor for lung transplant, I hope you are doing well.
Holly, I have CF as well. I had my lungs transplanted 7 years ago. Complete success. If you get this before, or even after, your transplant, feel free to contact me on facebook and we can talk about what that journey will be/what it was. I would be happy to share my insight with you. Its scary, its tough, but its totally worth it. I hope you are staying positive. You rock. God Bless-Autio.
~Mark
looking forward to seeing your fourth video
Aw thats sad i hope the transplant goes well holly
God bless you and everyone with any type of disease hopefully one day there will be a cure for all of these.
God bless you - im 32 with COPD Stage 3 x
good luck hope all goes well
How are you now? My prayers are yours.
I hope you're doing well. xx
I'm so very sorry prayers always
How are you now Holly??? All praying for you...Stay strong xxx
peace and power to you beautiful soul
i wish you all the luck in the world
my prayers to you.
Like, even though your lungs are hosed, you're gorgeous. Wishing you all the best. You go, girl!
Hi Holly my name is Gracie I'm 12 but 13 on Saturday and I have CF as well, I am keeping well please let me know how you get on with everything I also live in Leicester too!! You stories really touch me all my prayers go to you lots of love Gracie xox
Keep fighting you can do this
My necie has cf an today was rushed into hospital I hope we soon find a cure
I'm doing the wirral costral walk to raise money for cf xx
Holly,
Thank you for sharing your journey. I was wondering if you had any advise for parents that are supporting and raising children with CF. Our son was diagnosed through the newborn screen and he is 1. We want him to live as normal of a life as possible while being disciplined to take care of himself. I have heard a lot of parents say that when their kids become teens and young adults they rebel against taking care of themselves. How can I be his best advocate as he gets older and more independent?
Thanks,
Jacqui
Stay strong 😄
first of all, ii looove your voice.
-ii have to wear oxygen every night && sometimes throughout the day too. && working on getting a double lung transplant as well.. how many liters do you use?
-i'm so sorry about emma.. ii talked to her a few times && it broke my heart when she passed :(
Holly- do another video. :)
Holly, how are you? Please post, we are looking so see how you've done. Cheers :)
I have it and it was uploaded on my birthday
Hello, my dear. Hope you're feeling good.
One of my really close friends just passed away of CF a few weeks ago, she was sixteen. Now my town is coming together to help get her story and awareness of CF get out to the world and hopefully on ellen. I hope you are doing well, good luck with the lung transplant. #curecf #colleenonellen
Hi Holly! I hope we get an update from you soon, or just let us know how you are doing?
She doesn't post too much on YT, but I found Twitter and she appears to have received her double lung transplant and is doing well: twitter.com/hollyrosanna :)
RIP emma
It'm so sorry to see how much your condition has worsened since your first video. I hope your lungs come soon!
hey , im from Austria (europe) and i also have cystic fibrosis. Please update us i hope you're feeling better