Sisters living with Cystic Fibrosis
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- čas přidán 25. 07. 2016
- Sisters Kristie and Nikki do random acts of kindness as a way of teaching their kids generosity and getting the word out about Cystic Fibrosis, a condition that is causing both of their lungs to deteriorate.
Now that Nikki’s lungs are only working at 25% of their capacity, she's joined the active waiting list for a lung transplant. Rather than dwelling on their illness, Nikki and Kristie choose to celebrate each moment with their children.
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It's sad that Kristie died in March this year.. I wish her kids husband and sister strength and to continue their awareness of this terrible disease
OH WOW! RIP Kristy!
Stories like this are why I'm an organ donor in the United States. I want to help save a life even if mine ends.
its illegal to end your life to help someone else they only donate your organs after you die.
Sultan Saç she didn't say anything about ending her life?
You need to rephrase that awfully vague and ignorant statement. Moreover, sorry if you're offended by said comment.
That's quite vague considering the fact that she mentions "ending her life," in a sense.
That’s doesn’t even make sense. That’s so redundant, the point is that no one actually dies.
Rest in peace, Kristie :(
That is a horrible disease. I would not wish that disease on anyone. I wish they would be able to find a cure for this ugly devastating disease. Nobody should have to go through this.
Thanks for watching Aric! Hope you enjoyed the episode and yes it is a nasty disease!
You are very welcome. And I hope that your daughters are ok. I really hope that researchers and doctors can find a cure for this disease. I wish the damm government would get off their butts and found some research to help find a cure for this horrible disease so that no parent ever has to see their child go through this hell. And so that no parent has to bury their children.
Aric Mackenthun one of my closet friends had CF and past away the beginning of last year 😥😢
Cystic fibrosis is a horrible illness. Three years ago I lost a girl in my grade at school to it. She was only 12. One of my friends has a baby brother with CF. I myself live with two chronic illnesses. More medical research is so severely needed.
I know where my xmas donation is going to after watching this. I didn't realise CF was such a life-shortening condition. Yes, more donations will help in researching into this illness.
I knew a girl at school with it who died in her very early 20s. It's so awful & heartbreaking 💔
Such a brutal disease, they’re both awesome women and great Moms. ❤
I've a dear friend who had 2 children with CF. A boy and girl. Her daughter passed away at 17 and her son passed away at 22. They spent most of their childhood in the hospital, this was in the 1990's. They're stepfather basically couldn't handle losing them he had a mental breakdown.
CF is devastating. Sending positive healings their way ❤
I watch a couple who daily vlog... Mary (the wife with CF) vlogs
most of the ups and downs and her husband (Peter, who is a pastor) does therapy and other information. I feel I understand CF even though I don't know anyone personally. Mary also has a service dog named Oliver aka Ollie or Ollie Boy.
Their CZcams channel is called "The Frey Life
Shay EmeraldGypsyHeart love them so much, their vlogs are some of the best ones out there
Shay EmeraldGypsyHeart mary, peter, and oliver!! I love their vlogs
I've been watching their videos for about a year, and they've become my favorite youtubers. Watching their videos is pretty much a part of my daily routine now. :) Everyone, go check out The Frey Life!
Shay EmeraldGypsyHeart same!! ♡♡♡♡♡♡♡♡♡♡
Me too!!
These poor sisters
They have lived longer than other people with CF. Thank God for that.
My son is 8 months almost he has cystic fibrosis, you’re warriors 💜
😢❤
my best friend has CF (we're 13) and, it inspires me to live fully and smile every second. she's doing alright right now but eventually will need a transplant. its scary and every day is a risk for her, bu I'm grateful for every second with her. cf is so awful. id rather be at the beach with my best friend than hold her hand in the hospital, but that's what we do. this disease should not be fatal. we need to fund more research instead of just offering our thoughts and prayers. because if even 100 dollars can get be 100 more seconds with my bff, its worth it. stay strong cfers
Bless you for being an amazing friend. I hope she's still doing well x
Thank you for providing the link below with the update. I am so happy that she's doing well, that's wonderful news. My heartfelt best wishes for these two lovely ladies and their family.
Thanks for your kind words! Glad you enjoyed the episode!
I have given up smoking and alcohol. I want to be an organ doner. my 18 yr old daughter wants to be. And I have a 16 yr old son that I will make an organ doner as well. Every day of my life I am grateful for mine and my children's health.
Thanks for sharing Rebecca. we hope you enjoyed the episode!
I lived next door to a girl who had CF, and she never let on that she was sick. I used to accompany her on rounds for Girl Scout Cookies, and the girl could pose very well for the camera. The girl died in 1987 at the age of 34
Thank you so much for sharing your story. You love and strength inspires me. I'm sending you so much love, respect and strength from across the other side of the world. Your love has wrapoed itself around the globe, literally.... 💝
Thank you for educating me 💗 sending you all a big smile from England 😁
I am amazed at these sisters :) I used to babysit three children, the oldest has cf and I have done alot of raising awareness and money for research as its close to my heart, she is now eighteen and still going strong, I am so proud of her. one thing with these sisters that amazes me is that they are able to be together, as I know people with cf are not meant to be too close as they can make each other worse due to cf patients being contagious to each other, so that fact that they are able to be so close and support each other, literally be there by each others sides is such a wonderful thing :) I hope all goes well for you both and you can continue the amazing work youre doing for cf awareness and just being the best of sisters :)
Thanks for watching Anji!
Attitude your welcome, I am autistic and have physical damage from an accident so when I saw the title "love and disability" it definitely caught my eye and will be watching many more of your videos :) I have watched two so far. thank you for sharing them :)
A friend of mine has cystic fibrosis. She is 15 years old and I believe she's had somewhere around 20 surgeries. She's very skinny and can't gain wait and she has problems breathing. Very sad disease.
Thank you for sharing your story ! We hope you enjoyed the episode and thanks for watching!
It’s 2018, you are so brave, both of you.........Sending love & best wishes, bless you both x 💛💛 x
Like, even though your lungs are hosed, you're awesome. You go, girls!
Thans for watching Pantyflash, glad to see you're enjoying the episodes!
My twin sister and I have Cystic Fibrosis, our lung function is in the mid 20's... And we are on continuous oxygen and trying to get on lung transplant list.... We try our best and pray to God and He gives us strength. CF is HORRIBLE and I wouldn't wish this on anyone. We also live on a farm, we used to love running,and jumping and playing... CF took away our ability to endure alot of that...now "oh I want to swim too/mountain bike/climb a tree" it's "nope you can't do that and be on oxygen too, how are you going to do that and carry the machine?"
That part when she was writting in the book for her daughter i cried as its hard to think loosing a mum to cf
My big sister, Claire, has CF. I don't. My mum has the gene and my sister's dad does aswell. My dad, on the other hand, does not carry the gene. My sis is one of my best friends and I love her a lot. She has an oxygen tube on most of the time (she's a savage). CF is scary as hell but our technology and curative methods are advancing. My sister was also the only CF child to come off of an ocelator and live. She had a 1 percent chance of life and went into a medically induced coma at 14. I dont remember much but I just remember frozen applejuice, tutus, and loud beeping. Im hoping a cure is invented someday
Thank you so much for sharing your story and for you support, GayGlitter Gaming. 😊
3llie mitch3ll Both parents have to carry the CF gene to have a child with Cystic Fibrosis.
I am so sad to know that your sister passed away after the lung transplant.
Your sister claire was a warrior and it always showed how much she loved you @3lliemitch3ll
@@xandasms8088 people staying new donor lungs will get damage like their old lungs over time is that turth or not then is turth they can get damaged too like old lungs I dont understand that why people staying it then like Stephi Lee stay new lungs will get damage like old lungs and Nikki and kristie dad new lungs will get infected over time with cf again what do people believe is turth or not I Google it transplanted lungs will not have CF and will never develop it, I dont believe it turth or what let me know thank you for your time I hope you understand my typing I have autism my typing can get mess sometimes Thankyou for your time from jess sellars xxxxxx
beautiful docu! Hope they feeling well... so far as possibel
Thanks for your comment!
How old are these lovely ladies? All the best for them and their beautiful family.
I hope these fine women have a healthy and happy life for as long as possible and be here a long time with their children and familes. They're both awesome and fine women but the 1 sister seems like an angel,a mega sweerheart and very very gorgeous!!! I hope you 2 have a healthy happy life and wish i could even just meet you both. From America, keep your heads up ladies!!!! MUCH LOVE!!!!😁😁😁😁😁👋👋👋👍👍
More funding for Cystic F.is necessary to find a cure and save children’s lives
How do people get tested for Cystic Fibrosis? Its kind of impossible to navigate the US healthcare system. You have a hard time just going in and asking for something without resistance or wanting to bill you for months of nothing first. Dr's are unpredictable also and sometimes retaliate if you have an idea to ask about something if they didn't come up with it.
Perhaps because my sister died of cf and my brother had cancer we were raised knowing how important donation is I think I was 7 when after spending a night at the hospital w my big sister I told mom " if I ever die make sure Shelly gets my lungs so she can breathe... " I rember my mom crying. I signed up to officially donate at age 16 I can't imagine not wanting to help someone if u could.
I have CF and tbh, it's the worst yet the best thing about my life. It's ruined my life with the illness and the pain associated with it, but somehow I still have the lung function as almost anyone else, except for my pancreas is pretty much useless to me. It's also ruined my life because people often pick on me and/or treat me differently because of it. Many people think that it's contagious or something, so they scoot away or just avoid me completely. I've run into plenty of assholes who decided to pick on me because I wasn't that fast or athletic or I'd cough and wheeze a lot. I even had to switch schools once because I was being bullied by almost an entire class and even others from different classes and grades. However, without Cf, I wouldn't have the wisdom nor the experiences I've had over the years. Without CF, I would be like everyone else, boring and mediocre. I wouldn't have gotten to really say I've been to 4 countries ( including my own). I wouldn't have been able to say that I've done some pretty cool and daring things such as motocross and swimming with sharks at my local aquarium ( not once but 3 times). Plus, without CF, I wouldn't have gotten to know God on such a personal level that I do now. God has saved my ass more than a few times, and there's no word that can describe my thankfulness for those blessings and miracles. God is the main reason why I'm so healthy for my age. My lungs have barely suffered any damage and I've only been hospitalized twice in my life so far. And everyday I live as if it were my last. CF has been my main motivator to cross everything off my bucket list ( and add some stuff of course). Even though the life expectancy for CF is about 37 years old last I heard, and though I've lived almost half of that already, I'm almost glad that I have it. Well, it's a love hate relationship because if I had the option to take out CF from my life forever, and never have to touch a pill or a treatment ever again, I'd do it in a heartbeat. But since I have it, and since it's still considered fatal and incurable, I ought to live life to the fullest until God calls me home. My message to anyone who's reading this, regardless of whether or not you suffer from something, try something new and/or learn something new every day. And try a few crazy things too while you're at it! Ride a bull, bungee jump, learn how to hunt and how to fish. If you do what is unusual and/or difficult, your life will be easy because you won't have time to deal with hard things like boredom and depression.
Thank you for sharing your story Maya! Hope you stay tuned!
@@AttitudeLive people staying new donor lungs will get damage like their old lungs over time is that turth or not then is turth they can get damaged too like old lungs I dont understand that why people staying it then like Stephi Lee stay new lungs will get damage like old lungs and Nikki and kristie dad new lungs will get infected over time with cf again what do people believe is turth or not I Google it transplanted lungs will not have CF and will never develop it, I dont believe it turth or what let me know thank you for your time I hope you understand my typing I have autism my typing can get mess sometimes Thankyou for your time from jess sellars xxxxxx
My cousin's little girl was diagnosed with CF. She is only 5.
Very nice story. I show my students thi video every term.
I really hope Nikki is doing well!!
Thanks for watching ! Hope you enjoyed!
Hi Jessica! We have just released an update on Kristie and Nikki - watch it here: czcams.com/video/Y4nL_9nzz4w/video.html
I am 34 years old. I Five years ago my twin and I just found out we have Cystic Fibrosis. I would really would like to get involve or what to do because some time my family just don't understand. Plus lost a lot of friends because of my Cystic Fibrosis of being sick all the time and being tired. I have two kids. One I have with me at all time the other one is not I haven't got to see him since May of this still year. Because they his dad and step mom and Grandma are using because I am sick and going to die that I am to sick to see my 11 years old son. That hurts so bad. I am hoping I will start talk to someone that understand or find out what I can do. Thanks and have a great day!!
Hi Nina, thanks for sharing that with us. There are lots of organisations that can give you information. Here's a link to Cystic Fibrosis New Zealand: cfnz.org.nz/
You're saying you found out you had cystic fibrosis at 29 years old? I'm fairly certain thats impossible. You can't make it to 29 "accidentally" with CF.
Agree. As a nurse I can say that living with CF for 29 years without any meds isn't possible. For digestive as well as respiratory reasons.
I have heard of late onset CF in fact there are loads of info about it on the internet most of the time they are much more mild here is a a little insert from on of the articles I read, the reason I was looking into it is my sister and her partner both carry the gene, and have to do IVF with PGD so they do not have a baby with CF.
Some cases of cystic fibrosis are diagnosed in adults who have relatively mild symptoms. This may be due to some errors of the cystic fibrosis gene not being as faulty as others. The handling of sodium and chloride may only be mildly affected in these cases.
NIna Chivington. My brother has cf as well
Did she have the lung transplant? any news about the sisters...
Breaks my heart, Kia kaha
they do know they aren’t supposed to touch and be within 6 feet apart? they could catch earth other’s bacteria. can someone explain??
Siblings who grew up together in the same household develop the same bacteria. :) So you can be near each other. They probably don't share a bowl of popcorn or drink from the same glass for good measure, but being around each other is perfectly okay in this situation.
Two of my uncles and my aunt died of cf
has there been an update on them?
@Nupur P Kristie passed away in March, two years after her transplant. Her body rejected her new lungs.
when was this made ?? does anyone know if Nikki has her new lungs yet and how close she is to getting them
Kayela Benseman m.nzherald.co.nz/bay-of-plenty-times/news/article.cfm?c_id=1503343&objectid=11736983
Jade awww yay that's sooo cool they found hrr new lungs before it was to late :) thank u for that :)
Hey Kayela! We have just released an update on Kristie and Nikki - watch it here: czcams.com/video/Y4nL_9nzz4w/video.html
Attitude oh yay great thank u :)
hi my name is Jennifer I pray every one with any disease is healed and get through any struggles I have an illness too I have Di George Syndrome, VCFS Syndrome, Auto Immune Disorder And I Have To Get Infusions For My White Cells Every Month For 4 Hours, I have a learning disability and I deal with depression and severe anxiety I pray God heals everyone with whatever they're going through please hang in there there is a God and there is hope and he does do miracles and I had heart failure last Nov 2017 and have to use a C Pap and I'm 38
Nobody cares
Why would you have children knowing you aren’t going to live to see them grow up? That’s selfish imo.
This is so sad. Thank you for my health Lord! 🙌🏽 Such a sad case! Smh
why do u girls not have the vests??
gram gram you dont have to. They are to expensive for some
Talk about an inspiration! These sisters (and cysters) are amazing! So encouraging. I can learn much from them. I pray they both can receive PERFECT lung transplants and have many more happy years together!!
Thank you for your kind message Savedbygrace! The girls are truly inspiring young women and we know they will go far!
savedbygrace have you tried watching the Frey life here on CZcams??
Attitude b
Danica
i thought people with CF have to stay at least 5 feet apart from each other?
Man, that movie gives people bad information. lol Siblings who grew up together in the same household develop the same bacteria. :) So you can be near each other. They probably don't share a bowl of popcorn or drink from the same glass for good measure, but being around each other is perfectly okay in this situation.
is there any update about their condition now?
Hi Astari! Not yet we will be doing an update in the new year - hope you stay tuned!
Will do! Thank you :)
Awesome, happy to hear that! :)
Hi Astari! We have just released an update on Kristie and Nikki - watch it here: czcams.com/video/Y4nL_9nzz4w/video.html
Attitude If you can, will you please do an update or if you already have will you please send me a link to it? Thanks alot. Much love and thanks for all the inspirational videos you do about others and their lives. We all are quite unique aren't we?!!!!
how old is nikki
Nichola Matthews 25
are these girls doing OK?
Hi gram gram - watch this space for an update documentary being posted later on this year! 😀
Hi gram gram! We have just released an update on Kristie and Nikki - watch it here: czcams.com/video/Y4nL_9nzz4w/video.html
Attitude isn't this the same video as before. ?
If you watch the full video you'll see it's filmed 6 months later! 😀
Sadly, Kristie recently passed away. Two years after her lung transplant, her body rejected. She passed away in March.
Is there a cut-off age limit to be a donor?
You do realize that donating lungs necessitates dying, right? She said she might need a child donor because she's small, but they don't come often. As in, kids tend not to frequently die, and especially not without healthy and undamaged lungs that can be donated.
Cut-off limit for donors is generally around 65. However that's not set in stone, and there are so many factors that come into play to determine if your organs can be donated (how a person died, current illnesses, time since death etc). If you die after an unsuccessful attempt at resuscitation (after a serious trauma or heart attack for example) then your organs are eligible to be donated, but the logistics (timing etc) can make it very difficult to actually allow this to happen. The easiest organs to procure are those from brain dead patients in ICU. It's a shame, but a lot of eligible organs go to waste.
When it comes to lung transplants and CF, I’ve heard of numerous things now.. I’ve heard the new lungs remain “CF-free” so they aren’t affected anymore, but here they mention they will be affected by the CF-gene. This video I think is older than the other sources I’ve heard from so I’m curious to know if that’s just something that’s changed from one direction to the other? I know scientific knowledge is ever evolving and have been curious about it.
I have a friend who has a boyfriend who has CF and has had a lung transplant, but it’s not something I’ve asked about and not something I’ll just bring up in conversation unless they wanted to bring it up. Better to respect the level of privacy he wants to have. I think it’s better to refer to other sources and learn more that way, in general, about the disorder.
I wish these two sisters well! It has been 5yrs since the video came out so it’d be interesting to know where they are at now (if they wanted to share that, of course). I do also wonder how pregnancy treated them, knowing how hard pregnancy can be on the body? I thank them for the advocacy for CF. I think it can help with further research and hopefully better and better treatment over time. IIRC, since then, there is a great medication for those with a particular kind of CF? I hope it provides those with CF and amazing improvement in quality of life and that more and more great things for them can come out, maybe even a cure eventually or as close as possible to one (to be able to live as close to a normal life as possible). ❤️
Thank you to all of the research scientists and medical professionals that are working to improve the lives of those with CF..
Great documentary! I have this disease and it is a horrible disease! I would not wish this disease on anyone! I am looking for a cure for this disease because it is very debilitating! People say that cf is not a disability but it is! Just not what society deems disability! I wish people would consider invisible illness instead of just considering physical disabilities (I.e people in wheelchairs) There are all kinds of invisible illnesses including mental illness and even autism! If society had a better attitude about invisible illnesses the world would be more inclusive society overall!
Thanks for watching Bof Reed - wishing you all the best 😊
Will their kids have the same disease?
Not necessarily, but it is 100% possible that they carry the gene for it and it can pop up in their grandchildren
It's a very very sad thing
i can’t wait for un update hope they are doing fine
Hey! We have just released an update on Kristie and Nikki - watch it here: czcams.com/video/Y4nL_9nzz4w/video.html
It's sad that Kristie died in March this year.. I wish her kids husband and sister strength and to continue their awareness of this terrible disease
😢
Their Dad died too. 😢