Living with Cystic Fibrosis 2
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- čas přidán 9. 07. 2024
- After the success of my first 3 video's I did as part of raising awareness for Cystic Fibrosis, this new video answers questions raised from those video's as well as an update of how my life is going and showing you new treatments I am on.
The website for the vest: www.hill-rom.co.uk/uk/United-Kingdom/Products/Airway-Clearance/The-Vest
For more information on CF: www.cftrust.org.uk
To donate: uk.virginmoneygiving.com/fund...
Thanks for watching!
Holly x
Just turned 40 with CF. Hang in there. Hugs.
Me too. 40 and still going. We CFers are a strong bunch.
Stay strong all of you!!
Leroy Garcia stay strong 💜💜💜 and good job!
i have cf in only young
My cousin died 7 weeks ago from cystic fibrosis, she was 23 years old and was diagnosed with CF at 9 weeks old.
Holy you are such an insperational person
Do you get the hiccups with cystic fibrosis
Holly! your positive attitude and outlook is very inspiring. Thank you for posting these videos :)
Steve .... the guy that commented that doesn't believe in God .. I think it is so sad he doesn't know the truth. I couldn't imagine life without God. My heart goes out to you . The day will come in the next life and you will see God is real. My prayers are with you steve im so sorry you must be so lost.God bless
You are amazing! I have a 6 year old little boy with cystic fibrosis. Cfers are the strongest people! Stay positive
Thank you for sharing your story. You taught me more than my nursing school ever could. God bless you.
You are such an inspiration! I wish you all the best!!!
Never been so impressed with a person before. Shocked. Makes me humble.
hi holly. well done for taking the time to raise more awareness to CF with your wonderful positive attitude.xxx
You're wonderful for sharing this. Many people don't realize how much is involved. I don't have anyone close to me with it, but I walk to raise money for the CF Foundation here in the US in memory of the late husband of a childhood friend of mine. However, despite all I've learned about the disease itself, seeing your video gives me another face to hold in my mind as a I walk with my daughters for our fourth year this year! I'll share your vids with her. Thanks again. You rock!
Thanks Holly. Good to see these videos. I see many CF patients, thanks for your inspirational story.
just felt i needed to comment, you are a really brave girl, and i wish you all the best.
Also dont wait so long to make another video!!! Your a great inspiration for people with or without a life threatening disease!!
You're attitude and spirit amazes me, you are truly an inspiration. God bless your good heart darling.
Your attitude and determination makes you so much more beautiful than you already are! Rock on!!!
What beautiful human being, you will inspire many more than you could imagine, me included, making me a better person just by coming across your video, thank you!
You're so beautiful, positive and brave. It made me so sad when you talked about life expectancy. I wish you all the best
Great video. You have remarkable poise and courage.
Please keep them coming as they are an inspiration.
I watched your old videos last year, and I've missed you! I'm so glad to see you again. I would really like to meet you some day, you just seem like an awesome person :)
You are beautiful just the way you are and i thank you for showing us your strength and sharing with us your experience. we all wish you are always feeling well and want you to stay strong and beautiful!!!
Thank you so much for the update. I was worried about you!
My two boys (ages 22 and 18) also have Cystic Fibrosis. We live in South Carolina, USA. Your videos are so helpful for my sons and for me as a parent. It helps seeing what other CF treatment plans are like, to stay positive, and motivated just like you! Thank you so much for your videos!
you are such a strong and beautiful individual! thank you for sharing!
Thank you again for your informative video's. I've learned a lot. Keep going strong!
You're such an inspiration
You're very beautiful! Keep being positive and brave, you inspire me so much!
I am just learning about CF. I really wish you good luck!
Im a student nurse and this video gives a great insight into CF, youre an inspiration!!!!
Hi Holly. I am in my 4th year at uni studying speech pathology. I enjoyed watching your videos very much. You are so brave and positive. I love your attitude.
Thank you for educating me by sharing your story.
You are an idol! Keep strong and stay positive. God bless:,)x
You are a very inspirational person!
i know a pair of siblings who died from this. laura died age 23 in 2011. noel died in febuary of this year.knew them since i was 14. im 27 now. guys i miss you and will carry your memory with me for the rest of my life. RIP
I watched your video all the way through. Never knew much about cystic fibrosis. Your a lovely girl with an amazing attitude :-)
I feel the same about not ever taking a transplant in the future... I was only planning on watching 10min of this but watched it all as I saw your first 1 last year. I'm also the same about going out clubbing etc, it used to be 2-3 days a week now it's 1-2x a month I haven't got the stamina myself you hit the nail on the head there, I wonder how many people without CF will really understand how serious it is - you're on a few treatments that I'm still dodging, stay well :)
Still smart and determined (saw your video in 2011.) Wishing you all the best...
Hope you are feeling well! Take care!
YOU ARE AMAZING!!
Yessss!!!!!!! I love tour videos!!!!!
She is Amazing with how authoratively she copes....Holly are you still around, we are worried...
You rock chicky!!
Hg-CF since 1987
your breathing hard while u r talking..i felt it..bcoz i have an asthma..but u have a courage..ur my idol!
***** take care my freind..
Love you much Holly!
Thank you for posting, really inspirational.
Thank you for the videos. You are have helped me so much. I am studying to be a nurse and you explain everything perfectly. I am running 10k next month to raise money for the Cystic Fibrosis Trust. You are very inspirational. Thank You x
Your amazing and so inspirational!
I have a little girl (now 2 months) with cf. I'm only a bit older than you. I worry so much about what her life holds for her but you give some inspiration and hope. :)
Thank you for the wonderful video
Hi Holly, thanks for taking the time to give people an Insight into CF, I love how you just get on with it and make the most of your life, Keep up the hard work you are an inspiration to everybody! Having lost a friend to CF I'm now on the organ donor register and make monthly donations to the CFT i urge others to do the same. We can beat CF :) Take care, Andy.
Ur so brave and an inspiration to evryone x
Well Done Holly
Keep fighting&&Be abs brave. dont give up, coz' your a fighter & You'll beat this!
Your so inspirational xxx
she is so eloquent. great video.
I totally agree
your videos are very informative and thorough :) i used your hospital admission video to show some people what a port is like. one of my peer's daughter has brain cancer and she had a port inserted a few hours ago to ease the hassle of poking her veins.
You ate so amazing!
you are such an inspiration and you are very beautiful too !
God bless you :)
Yes thank you
Yes she is
Another great video :)
I'm so happy to see ur ok... I was worried
Keep on fighting girl, no matter what, never give up. I battle too with CF, 33yo, married, one little daughter of three. I kinda know how its like :) although its for everyone different ey? Good luck on your endeavors, and remember you only live ones so make it count, every day :) Cheers.
Great video, have a lovely holiday! I have a feeding tube too, mine is in my intestine though since my stomach has shut down. I hope it's as good for you as mine has been!
Such an incredible girl
Dragunserf he was talking to the dude that posted RIP.
So it was the original guy : BoB Smith that's the one causing issues.
Which is bloody awful this lovely lass is giving us an insight into her life, which is hard so everyone should show respect and report these idiots.
hollyrosanna You're going through a very difficult journey and thank you for sharing your life with us!! Take care
omg, your are so brave, what did you do on your skiing holiday ? xxxx
God bless you honey!
Good your such a fighter keep it up
You are a beautiful young woman. Stay strong and keep going :)
My husband's relative (barely 16) had a double lung transplant last year. She also has CF. Now she's healthier than ever and has no signs of rejection or infection whatsoever. You guys are troopers though...seriously.
I came across you video while trying to learn more about CF. My friends nephew also suffers from CF, his father invented this thing he calls The Bag so that his son can have a more normal life. He hopes to make The Bag available to everyone who suffers from CF some day. I'm not sure if will work for you sense you said CF effects each person differently, but please check out their you tube channel and share it with others. Just search Cystic Fibrosis The Bag, the father's name is Brett Smith.
My little sister has CF and I'm fundraising for CF at my school x
Beautiful 'chubby' cheeks haha Thank you so much hollyrosanna for sharing your experience you're an amazing individual (Australian student dietitian)
Holly, I love your attitude about your CF. I do have a few questions. First, How is the feeding tube working? And, have you thought of a regular G-Tube? I wish you the best of luck and keep up your wonderful spirit! :)
i love you holly! you are fab darling xxoo
Hi holly.. my name's Jeffrey. . And I first wanted to commend you on such a terrific array of informative videos! I also would like to talk to you more.. perhaps on a one to one basis if possible.. I recall you did a bit of an intro regarding the hill rom vest system. I recently started using one but have a few confusions with said device. . I was hoping to get some advice from you. I have a form of neuromuscular disease, so am not exactly in the same situation as you. But we could chat it up
I randomly clicked on your video because I have Osteogenesis imperfecta. It's in my bones. I like to learn different things. This was cool to see even though I don't have this but I'm sure it'll help others like you. You're very pretty by the way :)
I could listen to u talk all day holly. im from texas and people are always commenting on my accent but your's is beautiful. is it to personal to ask what your faith is? sorry if it is, u just seem to have it all together so I was just wondering. lately ive been complaining that I don't think ill ever get back into the riding arena and not being able to find a place that will let me teach but I just saw this video and realize my issues are not that bad and I know I can get thru anything now. im not sick at all, I just came by your video and I felt so proud of u and don't even know you. how did happen? God bless u sweetheart.
I wouldnt like to speak for her but I would imagine she is probably athiest as majority of people in the UK are! Otherwise she would most likely be a member of the church of england
thanks for the response. usually people don't respond in a such a kind manner, so thank u so much. please visit my channel and maybe leave a comment. sherrie lm
um, ok. im a Christian and love my Jesus but I don't care for those Christians that beat people over the head w/ the Bible. in the US we call them "bible beaters" but God loves them too. I like to share The Lords love for all and leave it to Him to do the judging or whatever else He see's fit. there is so much hate in this world and so many people choosing to threaten w/ fire and brimstone and then talk about His love afterwards. to each their own, Im a Christian and im not perfect but I am forgiven and am loved by the Highest. thanks for the history lesson too
sherrie LM Being an intelligent and highly rational individual, she's probably an atheist
Hi Holly. You haven't posted in a while. I hope things continue to be OK after your lung transplant. Best.
create your purpose. do little things everyday to make someone happy or make their day easier. we have to combat the negative forces out there.
Please update us! We're so worried for u as u haven't posted in forever :(
Narisa Amel same 🥺 and hey army! haha
Oh yes, I was a chronic asthma sufferer and learned the technique to blow through a pinhole and count slowly (increasing after each exhale) to clear my lungs. This worked when I had no inhaler or medications and was having a bad attack; sounds like the technique you talked about.
I have CF too, with u ❤️
OMG u take a lot of meds! I feel bad for u! Get better soon :)
Goodness me you took that tube well!! I had that when I was 16 and I nearly died with it!! It was so uncomfortable!
Tips: 1. Insert the thing yourself. Then you have direct control over insertion, AND you can feel the feedback from what you're doing. 2. Get the narrowest size you can use without it clogging and with it still being long enough. 3. Take the guide wire out and don't use it - nasty thing designed to help nurses force their way through sensitive tissue. 4. Pull your upper lip down. This pulls the tube away from the sensitive bits as it goes down. 5. Go slowly! 6. Do NOT just force through any resistance - this is what causes pain, and understandably so. Instead stop, back up a bit, and try again until you find the way through. Tilting your head back can help open up the passage. 7. Once you feel it just above your gag reflex, swallow several times without advancing the tube. Eventually the swallow will pull it past the gag reflex on its own, and also past the danger point where it could go down the wrong way into the lungs, and then it's plain sailing from there. 8. After that, keep swallowing and threading slowly and steadily until you've inserted it to your pre-measured distance. Take little breaks along the way as necessary. Basically, be kind to yourself and remember there's no rush. Done this way you get NO pain, and any gag or swallow reflexes get a lot less very quickly with practice - kind of like getting used to contact lenses.
@@catherinespark thank you for the detailed reply!!! That's impressive! I had the tube for anorexia, so it's unlikely I'll need it again! I'm also a nurse now, I insert them into little premature babies all the time - poor little guys. Take care and hope you are ok xx
My dad had a breathing disorder while I was growing up. I used to have to pound on his back and lungs to break up mucus in his lungs several times a day and late at night when he was bad.from when I was 14 to 20 years old and slept with one eye open. I wish I could have bought one of those vest. US is so slow getting stuff for breathing.
it is a nasogastric tube for putting high calorie fluid through to keep up weight and nutrition.
il be at Glastonbury Festival!!! im a local there :) hope you have fun! xxx
Julia from the United States I'm 38 years old got diagnosed with this in 2018 and old man. It's very bad I'm constipated my stomach and chest hurts. I can't settle any food it's rolled back
I have the DF508 mutation. I'm turning 27 this year and I'm not too ill... I consider myself lucky.
How! Your awesome
you look beautiful i hope you are feeling reasonably ok today
I also have ehler danlos! It's always interesting to see how differently people are affected. My major problems don't really cause me to take any drugs, they just cause some pain
I have scoliosis and had two surgeries for it.
I have acid reflux, but rarely need to go on a course of medication for it.
I have severe joint pain, but that can't be helped really.
Our genetic condition seems to have so many different down sides and different levels of coping required. Either way it's always weird for me to meet people with the same condition as me lol.
oh wow that's very fascinating! it's crossed my mind before, that the EDS could coincide with CF in some way, at times. Also other genetic things, my hubby seems to have "half CF" but they don't take him seriously yet. He has the symptoms of chronic congenital pancreatitis, stunned puberty, very underweight etc.. i get really concerned about the weight especially. he seems to not aboard fats well, has all kinds of symptoms indicating it. it's either that or some metabolic condition. his grandfather had some mysteriously similar health issues. we have two little ones with similar issues, one EDS, one classic autism.so i push myself a lot, and end up sometimes feeling like i have to rest or i'll pass out. i've been starting to rest more to prevent getting to that point, because it's been happening more. it's been a struggle to have these things identified and understood formally. i speak out and blog, but that's a double edged sword best not elaborated, hehe. these things all probably have similar base. my hubby has aspergers, i also have aspergers, which is highly genetic too, and people with ASCs (autism spectrum conditions) are more likely to have the EDS and other genetic anomalies (i hate the word mutation lol) etc.. I am not sure about with CF, but i think the most presenting condition can upstage others many a time. I believe both treatment and research would be better and more fruitful if everybody's individual "constellation" was mapped out, examined, and explored as to how they all interrelate and why. I think more solutions would be seen "thinking outside the box" rather than in. time if money, but i still think there could be positive compromises. people would shift from hopeless to hopeful, when they look past their fingers and see that there could very well be answers to these things, and prevention measures, in places they didn't think to look before; "outside the box."Hence my name :P i wrote a blog on how gov'ts need to pay more attention and care to genetic illnesses and support them. most of the research that helped to improve CF treatment was via donation from the people who loved and cared for those with CF, not gov't or institution. Boooo!.... yeah, the pain cannot be helped, we have to get our minds around it or be miserable which only sells us short of the moment. Good for you for not taking any drugs for it, really it only worsens the systemic condition. i've gone that route and felt like i was going downhill. but there are some meds we do need obviously, i need things for my gut. benefit outweighs risk. it's a question of discernment. You have inspired me because you so eloquently rise above it all, something i should do more of. I'm getting much better, for awhile i let the pain get to my head and interfere with my happiness. medicals weren't' even supportive of that and threw labels at me, which only made it worse, but in retrospect forced me to have to rise above them and their subjective attitudes also. I always knew there was something "fragile" about my body hence why i was extremely averted to sports that were heavy on stamina and contact. I was always extra cautious. I knew about the AS too, and then at first i attributed the physicality to that, but there was always something "fragile" about my body tissues. i always felt weak, soft bodied, and it really hurt when i injured (not to mention, i felt i injured more severely.) When my sons' paediatrician pointed it out in him, the lightbulb went off. Before then the label was simply "fibromylalgia". now, i'm trying to find out the type, there has been though it's "classic 2" i'm mild to moderately affected. not the mildest of, but lets say "grade B" if you were to grade severity from A-D. Ok I've said enough. Thanks for inspiring me and thanks for your reply. Take care!
www.willienelsonpri.com/images/health-3.jpg Check this out, and talk to your doctor about it... Yes this is Marijuana :)
But do not take the medical benefits of this lightly. I have CF and I think it has kept me more healthy than I should have been over the past three years. My doctor is AMAZED at my health. She said I am the first patient she has seen that has never had to go in for a clean out at my age. Three months ago at my last check up my lung function was 107% which is greatly above the expected for a 21 year old male. I think she often wonders what my secret is but I am too scared to talk to her about it.... I strictly stick to eating edibles which is what you should look into it...
Is the Active Cycle of Breathing Technique (ACBT) for airway clearance, what you were taught by your physio? I couldn't quite hear what you said. Thank you.
By ptf do u mean peak flow metres
Hey cyster! You rock! We have CF but it does not have US! ♥
would you ever have the feeding tube put straight in to you stomach
then up you nose
i have cf too. how do you cope so well
Skiing??! Snowboarding is better ;) your story is amazing. Thank you for sharing
dose the vest help at all, 'cause i and debating getting one for university
Hello:) I was wandering what infection(s) you have on your lungs? I have and always have had pseudomonas, but my lungs cope well with it so im quite lucky! Im just curious to see what you have? All the best, x
Nasal gastric tube brings back memories. I had to continuously put it in every day at one point so I ended up just putting it in myself each time.
How come??
I got cf to this has made me want to make videos about it cause all people with cf are diffrent te doctors say I am one of two in the uk with the type I got
Hollys stuff I use often in my teaching of GCSE biology.. Sorry to ask please. Is dear Holly still with us?