Cystic Fibrosis - I Need To Breathe
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- Опубликовано: 25 мар 2017
- Cystic Sisters Update: Tauranga Sisters, Kristie and Nikki both have Cystic Fibrosis, a debilitating condition which causes their lungs to deteriorate. Instead of dwelling on their illness, they cherish time with family and do kind deeds around the community to raise awareness about the disorder. Functioning at just 25% of their normal capacity, Nikki’s lungs are so bad she’s getting a new set after being on the waiting list for more than a year. For Kristie, that journey is just starting, she’s going on the active waiting list as her sister comes-off it. It’s an emotional road to breathing-easy again, but one the whole family is invested in.
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both my brothers had cystic fibrosis and the youngest passed away a few years ago. I hope one day they find a cure so I don't have to lose another brother
I lost my sister last year over cystics fibrosis she was going to get a new set of lungs but sadly got worser and worser and sadly passed away she was only 23 years old but I do everything for her even though she's not hear am doing a walk for her to raise money for cf xxx ❤️ and others out there x❤️
Thanks for watching Abi!Hope you enjoyed our channel!
I’m sorry for your loss
Abi Kendall I'm so sorry for your loss of your sweet sister..I think it's amazing that you are still helping! You are in my thoughts and prayers ❤
i know its not much to say, but rip to her
Abi, are you on FB?
My school (Bishop O'Connell High School) just held a national fundraiser (superdance) as we do every year. This year we raised $125,000 for CF research.
Awesome work Skylar! Well done :)
Skylar Chumley way to go that's amazing
Skylar Chumley thank you
It's exciting but sad at the same time for the transplant.Knowing someone has passed away to save your life makes it very moving.
Thanks for watching Steph, hope you enjoyed👍
No one passed away to save another person.
Unfortunately someone died and the family out of the kindness of their heart decided to donate his organs. God Bless 🙏
Last year a friend passed from cf. She had the lung transplant and got at least 6 months. I really cant imagine what this is like but these two have such an amazing outlook and attitude. They are my heros
Ha it looks like my huband wrote this .
I saw a Cf documentary from 12 years ago and now I've seen this much newer one and the difference in treatments and outlook and people able to have kids is amazing.
Can't believe how little is publically known about CF, coming from someone only now at 27 years old educating themselves on it. Such fighters everyone who has it, also how beautiful is Nikkis hair!! She passed it on to her daughter too, how lucky 👌🏼💕
The Frey Life is about Mary, Peter, and Ollie a service dog for Mary. She has cystic fibrosis and vlogs, I watch The Frey Life every time they post.
same
Love the Frey Life
defo go check them out!! been watching them for ages
Sweet 'N Sour same
Me too!
Thank you very much for this. I have been diagnosed with idiopathic pulmonary fibrosis and a lung transplant is (possibly) in my future also. Loved seeing how these sisters deal with / approach it. Strength... wow! I can learn from these two!
Thanks for sharing John, we wish you the best of luck and hope you took something away from this episode!
Outstanding documentary this deserves a recognition award! Thanks to all who took part in making this film.
Thanks for watching Sunny Days - we really appreciate your kind words. Hope you enjoyed!
@@AttitudeLive I have question for you over pulmonary fibrosis. Can Idiopathic pulmonary fibrosis damaged both of lungs or only one of the lung
Just bought Five Feet Apart and cried - it’s Amazing
Kristie & Nikki are inspiring
Iv never sat down and watched something so touching to the heart. I cried from the minute the girls mentioned they had kids. To be that strong for yourself but having kids on top of it means you must be twice as strong. Hopefully they live on for many more happy years to come and enjoy every minute they spend together. Truly touched by this video xx
Thank you for watching and your kind words Shaneen!
Such an inspiration to see how well you cope with it I have cystic fibrosis and I’m 13 years old I am being told I will properly going on the transplant list at the end of this year it’s so amazing to see how you push yourself to get so far and to cope with things x
Thanks for watching Porcha Reynolds
I've had it for 14 years and do not trust a lung transplant. I would of been dead. Thank Jesus for my life
I hope all is well with you.
What a REMARKABLE FAMILY especially the GIRLS, and their HUSBANDS are just GOOD CARING MEN, Keep up the HOPE never lose FAITH.. My PRAYERS are with you ALL.
This was filmed with such care and sensitivity. The shot of the family together at 12:20 is beautiful.
To any who are watching this video and are curious about Kristie and how she's doing. Kristie was able to get lungs, unfortunately though the her body reject the lungs and she passed away in 2019.
🥲 so sad, thank u for the info
I feel so sad about this
So sad. Don't they have trikafta over there?
@@BelieverInChristJesus4ever they do now but I believe it wasn’t readily available when Kristie got her lung transplant because Nikki says had it been available it could have saved Kristie from needing a lung transplant which ultimately did not work for her.
😢 Thank you for the update.
My heart goes out to the family . She raised awareness and educated so many people as to what CF is all about . To live with so much love around her , that's a life worth everything ❤
Wow people with CF are fighters. Good that they have a positive outlook when it comes to their condition.
Thanks for watching Jennifer! They sure are fighters!
@@AttitudeLive hello attitude does cystic fibrosis end up taking over attack new donor lungs
@@Jess-wk5jo yes it said it the video that it will eventually take over the new lungs also
This is a great comment and thank you bc I have CF aswell
@@faithperry5394 hello faith is turth that cf can damged new donor lungs too thank you for your time love from jess sellars xxxxxx😀😘
I have CF, and even though it’s a horrible disease, I’m blessed to be as healthy as I am. I’m one of the healthiest CFers in the world at my age (17). Yes, CF is rough, but I’d never choose to live life over again without it. If I could cure it today, I would, but I could never live my past without it.
Hi I am Manisha And I have cystic fibrosis ,I am from India please share what u do to stay fit and what diet plan u have .please share I am 19 yr old and I have 90% of lung functions
@@Tricktocreate789 First off, congrats on the 90% lung function! That was my baseline LF before Trikafta. With Trikafta, I now have a baseline LF of 115%. So, that's cool.
As far as diet goes, I eat a lot of "whole" foods, like unseasoned meat, salted veggies, whole grain bread, etc. I don't eat much sugar, but I don't avoid it entirely (cookies are delicious). While this diet plan works for me, it may not work for you. Always consult with your doctors.
Exercise-wise, I am pretty fit. I love to hike, fish, and hunt, and I do my fair share of heavy lifting and stretching as well. I try to spend at least an hour being active each day, though if I feel up to it, I'll be out-and-about all day, hiking and fishing. While exercising, I drink a lot of water with electrolyte mixes in them, and carry beef jerky, pretzels, and something sugary (like gummy bears) as well, just in case.
Wishing you the best from the USA.
Such a wonderful family, heartwarming ❤
I hope both sisters are doing well and enjoying life. Thank you for sharing-- there is so much most people do not know about CF.I have CF and am now at transplant stage, yet have spent the last 8 yrs on oxygen 24/7. Transplant is always tricky as to the timing, but generally, you qualify as your lungs reach 30% or if you have had a rapid decline in your pulmonary function or increased need for hospitalizations with drug-resistant organisms. People with idiopathic pulmonary fibrosis and PH get put on the list almost as soon as diagnosed because they decline rapidly and progressively compared to most other diseases and there is no known reasonable treatment for them. The transplant dance for CF is that you have to be sick enough but not too sick as well as not harboring B. cepacia.
CF is a spectrum of different genetic mutations approx 17,000 of the CTFR gene. This gene provides the code that tells the body how to make the cystic fibrosis transmembrane conductance regulator (CFTR) protein. The protein controls the salt and water balance in the lungs and other tissues. Malfunction in any one of 5 different ways causes the protein that creates a sodium and chloride gate to malfunction and results in sticky mucus that clogs, the lungs, the pancreas and thickens cervical mucus. About 97-98% of men with CF have reproductive tract abnormalities which render them infertile, while most women are fertile, but may have trouble getting pregnant due to irregular menstrual cycles caused by low body weight from CF and thickened cervical mucus,
These variants are why some people with CF have milder disease, or why some have less GI or reproductive issues. GI issues are caused by a lack of the enzymes from the pancreas so that you can not properly utilize food. You have to eat more than most people when you don't feel like it and that leads to eating higher calorie food in smaller amounts or a need for tube feeding to supplement your feeding. However, in the last few years, there have been drugs created that can alter the shape of the mutant sodium/chloride channels and keep them open longer resulting in fewer CF symptoms and less damage caused by the thick mucus. Unfortunately, this treatment is not available for all mutations, nor is it available everywhere, but it does offer hope for those who do not already have a lot of damage to their bodies. This CTFR gene is in every cell of your body, but your new lungs will NOT have it or develop it. However, antirejection drugs make you prone to pneumonia and the type of organisms that her sister is colonized with places her in great danger of getting the same type of damage to her new lungs if she should become infected with pseudomonas. It does not cure the CF gene defects in the rest of your body
Transplanted lungs must fit your body and match, they are among the most fragile of organs transplanted and it is rejection which eventually destroys the lungs by obliterating the gas exchange surfaces in the lungs. Many people die waiting for lungs because of the lack of organs and the specifics of transplant matching in addition to fitting into your chest cavity. About 50% of lung transplant patients are alive 5 yrs after transplant and the average life after is about 6-8 yrs, although some have lived as long as 17-20 yrs post-transplant. In some ways, it is trading a bad life for a possibly good, but shorter life. It is a gamble, but when you spend 8 hrs a day doing breathing treatments and can only walk a few feet on oxygen, spend weeks every few weeks in the hospital or doing home IV antibiotics and you feel like you have NO quality of life left, its a choice you are glad to have, regardless of the outcome. This is where I am now and I am grateful for these sisters sharing their story and giving me the courage to go forth after fighting for so long. Thank all of you for sharing and for this amazing video.
Kristie passed away earlier this year 💔😭
@@chloemahr That is so sad, she was so strong and beautiful, it must be really hard for her sister, this disease just sucks, thank you
people keep staying on video over that 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
Hi deva I feel it turth that cf can come back after lung transplant for cystic fibrosis infected new lungs over time if wasn't turth cf people wouldn't be staying it in fast place so someone or Google is lying over new donor lungs over time getting infected by cystic fibrosis a again thank you for your time love from jess sellars xxxxxx
For some reason I’m so interested and also completely inspired by people who are fighting with CF. I watch a few channels of people living with CF and their daily life and what they go through on a daily basis with medications and treatments they do every single day is just insane. They are also some of the post positive individuals even though they are literally fighting for their life every day. It def makes me more grateful and try to be more positive myself on days that I am down and frustrated. Thankfully today medicine and treatments are more advanced and they have a better chance of many more years with their families. It’s so sad bc many when they were born their parents were told they would have duck a short life and over the years they have fought and medicine has improved and these beautiful people have a better chance and many more years!
One of the most beautiful health documentaries I've ever come across. Thank you so much for raising awareness about this. My father is suffering from idiopathic pulmonary fibrosis. I pray that modern breakthrough in medical science may lead to a cure ....
A!ways remember to put donate organs on your drivers license! Although it'd be sad to die, I'd rather have my life carry on in a small way in someone else (or a big way really). Such a strong beautiful family!
Amazing family. Great how open they all are, and how they involve the kids and normalise it, so it's not this big, scary thing.
Thanks for watching Maximus Prime, hope you enjoyed!
@@AttitudeLive I have question for you over pulmonary fibrosis. Can Idiopathic pulmonary fibrosis damaged both of lungs or only one of the lung
I'm thinking about Grégory Lemarchal, this amazing French singer, with a wonderful voice, who have the Cystic Fibrosis !
He fighted all his life to live his passion, to be able to continue to sing.
We discovered him at the beginning in a reality show which he won by dint of fighting and perseverance. He was a real model.
Rest in peace Kristie🎗️
I love their idea regarding spreading awareness!
I love watching these from the other side of the world - from London uk
Thanks so much for your support, keep an eye out for new episodes, Exploring With Jasmine!
This is heartbreaking! I hope they are both doing well and they are happy! Such beautiful women!
Kristie has died x
Olivia Lang oh no 😭
@@geegeegirl1887 March 2019 she passed, very sad x
Nice. I made a Cystic Fibrosis video 2 and a half months ago in memory of a friend. I spoke with another friend who has it but got a lung transplant and he explains the disease from his perspective.
That is so great that they both were able to have children. Most CF sufferers cannot. What strong young ladies and great parents. CF is a heart breaking disease. I really hope they can cure it one day. One of my friends has two daughters also with CF and it affects everything: lungs, digestive track, reproduction. I feel so sad for my friend because as she says the reality is that she is watching her daughters slowly die and she is sad because she already knows they can't have children of their own and she will outlive her children so in the end she will have no kids or grandkids. I feel so bad for her. Her kids are in the hospital a lot. Like these girls, one is worse than the other. Somebody please find a cure soon for all these people. They don't deserve to have this.
Thanks for watching Katie Kat!
Katie Kat God works miracles so don't count out grandchildren for your friend
For those interested in more about Cystic Fibrosis. Look up "The Frey Life" on youtube.
Thanks for sharing Trisha!
Trisha B I love their channel
Trisha B The Frey Life is my favorite vlog! Mary and Peter are amazing ❤️
Rhiannon Young-McDaniel It's amazing how positive they are! Always smiling!
I love the frey life too
I am soooo soooo happy for her, her sister will be next soon .
I wish we could donate lungs while live. hope these ladies are doing ok. thanks for sharing.
They do living lung transplants, you have to have 2 matching donors and the success rate is pretty good. They only transplant the lower lobe, from each of the living donors into the recipient, the donor loses about 15% of their lung function. They do not really do this in the US, it is more common in Canada and in Japan where the average wait time for a lung transplant is 80 months due to low amounts of donors. Most people would be gone in 80 months that need a transplant.
I lost a friend to cf, in 91, i found out later she took herself off the top of the transplant list, she really was a character, ...xx 💔
My heart is with you all. I am so glad there is a strong support system. Praying they both will do well.
My daughter had cf. Doctors, at salt lake children's hospital, and doctors at Seattle children's hospital, confirmed she had cf. Five doctors in our state said so to.
But, my husband, and in-laws, says she doesn't, and accused me of having munchausen mental disorder. He divorced me and the children thought I was trying to kill her, so they all decided to live with their dad. She really suffered I was told. But I haven't seen any of them since 1997. It breaks my heart that I was cut out of her life. I don't know if she still lives.
Love each other from the bottom of your hearts.
God bless them. They are surviving 😊
Very inspiring
wow that's beautiful but sad that the sisters can't hangout now
Thanks for watching Kayela
Attitude thanks for the update :)
💔Rest in Peace Kristie 💔
Oh no...! :(
I am so happy she was able to get her lungs, I really wanted to know how she went. I am very saddened though that the 2 sisters cannot be near each other. Bit off topic but it's weird how different it is in different countries. Like here in Australia you or your child must wear shoes all the time while walking around hospitals because of germs and diseases they will literally tell you to put them on where is in NZ it's kind of common everywhere.
Please keep us updated on their journeys.
Hi Sarah, we try our best to keep everyone up to date! Hopefully we do a follow up soon!
Thank you for this update, hope for another one sometime.
@@Sub-515 Kristie has died x
@@livvjanee oh thats sad, thank you Olivia.
It really hit me when the girl's father hoped for another 10 years out of his daughters...very sad. I wish them many years of happiness and health.
Thanks for watching Capellasampiere!Hope you enjoyed our channel!
@@AttitudeLive Why did Kristie and Nikki dad stay cf end up infected new donor lungs too when lung transplant doesn't have cf in them everymore i dont understand that let me know please thank you for your time 💕😘💜❤😀😃
@@Jess-wk5jo eventually, the disease will also attack the donor lungs.
@@RosettaStoned462 @CAPELLASAMPIERE when I Google cystic fibrosis lung transplant new donor lungs will never get cf In the them a again I think not turth I am not that sure that reason I ask you questions over it thank you for your time from jess sellars 😀
@@RosettaStoned462 it not turth new donor lungs will never get cystic fibrosis a again they are someone else lungs are people are wrong staying it
The Frey Life is a really awesome channel and also Clairs channel I forgot her last name. But they go through their daily lives and it’s so amazing seeing what they deal with on a daily basis.
Unfortunately, Claire passed away.
New content about how they are doing starts at 21:57.
Hey! This is amazing! I was wondering how they were!
Thanks for watching Bof!
Praying for a healing for her amen
your videos are good
Thanks Emma!
Aww this is touching. I hope the other sister gets a lung transplant and get back together with her sister.☺️
Thanks for watching MaMoBaek!Hope you enjoyed our channel!
Where do you gals live my son has cystic fibrosis he's 24 and he's just now starting to get a little bit more week and his cough is off and on but a little bit more I'm a single mother and it has been extremely hard emotionally and financially for us he has other things going on with him such as autism but he's high-functioning he certainly can carry on a conversation very smart he has a seizure disorder and he's a diabetic we were told he wouldn't qualify for a lung transplant I'm assuming because of all of his other things and we don't have the finances for the transplant so I'm thinking all of that together I'm so happy you were able to get yours and I hope and pray that your sister gets hers love and prayers for all of you and one more thing how are your children doing do they have CF I was told if Ray was ever able to have children they would all have cystic fibrosis 🙏🙏❤❤
My friends sister had a double lung transplant 15+ years ago, she’s had no symptoms since.
I went to school eith a boy who had cf qnd he ssdly passed away at 19.
He went to a normal secondary school but his best friend used to do his back massages to get all the dlam up at lunch time and give him all his tablets .they were literally joined at the hip and when it made our local paper that this young man had died my first thought was how hard it must have hit his best friend.
He was really small but feisty as hell for his size and always made everybody laugh. .
I was diagnosed with cystic fibrosis when I was seven and it was really hard but now i feel great but im sick im going to hospital for 2 weeks its been so long when i went to hospital it was like 3 years ago when i went to hospital but its sad i need to go on Wednesday but its life.. My name is Demi lee mans im 12 i got cf anyone that has cf CF well have fun try and stay healthy u only live once😆
Are you on FB?
CF is a terrible disease :-( The father told that a new lung will also be destroyed after getting a transplant? I knew one girl online here in Germany who got a lung transplant, and she told the new lung is safe and CF will not effect her "new" lungs, but it affects other organs as well like pancreas , liver, stomach etc. and this could not be cured so easily. Are there different forms of CF? Just asking because I am curious. I hope that Kristie got her transplant as well and both are fine today!
beautiful girls you must be really proud tfs
Thanks for watching!
never give up
Thank you for watching Dee!
Attitude i come back to your videos often because even though people tell me i am an inspiration to them...i find i need to be inspired more than people would think. Hiden disabilities are around each one of us daily. i have hyperacussis, complex regional pain syndrome, a neurostimmulation implant unit in my back, and im still retraing some muscle groups after having neck down paralysis reversed, as well as a few issues not mentioned. i dont share my conditions and health issues for anything other than a reminder that we all are working on or are dealing with something at any given point. I want to say thank you so much for these stories that inspire and remind at least me a few things i have always tried to live by...
1. it may be my smile or kind word that changes not only a moment or day, but possibly a life. i never have the right to turn someone else's day into a bad day.
2. never ask anyone to do something im not willing to do myself. (that does not mean things i cannot do for myself)
3. do what is right because its right.
thank you again for giving myself and others a place to be inspired. hugs.
Dee Raines I wish you a pain free life and I think one day we will be able to hit a night club and dance like it's nobodies buisness 😂 😂😂
Is this a duplicate?. I swear I've seen this before.
Hey! If you watch the full video you'll see it is 6 months later! The sisters have been very popular, so this is an update video as requested by our fans 😀
Attitude Thank you!
Attitude lol I was just about to say I'm sure this is a repeat of the first one 😂😂
Attitude my memory isn't that great due to medical problems and meds. I was wondering how the sisters were doing. Thank you for the update. I love your channel. I'm in Omaha Nebraska USA 🇺🇸 and I love watching stories from around the world. I also love Parris Goebel (spl?) and the royal family dance crew. Lol. I hope to someday visit New Zealand. 🇳🇿
Omg Nikki is so cute and her sweet soft cute voice. Nikki and her husband so very very young and cute.
I hope Kristie has gotten her new lungs at this point. There is a lot of research done in the field of cyctic fibrosis and it will probably be a curable disease in a few years' time.
Kristie passed away earlier this year 💔😭
I died at 23 and went to hell Jesus put me back in my body and soon after that I cried out Jesus come down imediatly and help me I saw a bright cross coming towards me till the cross was blinding light then I felt oceans of excstatic love so large I've never felt anything like it and I saw mountain of sin heaped above his body and come down on his heart and shatter his heart as he died evil ran from the cross in terror I saw a bright shing Lamb in heaven and my soul transformed into a lambs and after that I felt alive for the first time and new
There is a documentary about a young woman with CF who, as a child
called it "65 roses".
Her name is Eva Markvoort
Thanks for watching and sharing MrsPoodle!
Interesting that it's mentioned that new lungs will eventually get CF too. That's something I've never heard before.
I don't think it's actually true... lungs will be ok, but CF affects many other functions/organs (pancreas, sinuses, liver,...) and that doesn't change with lung transplant. Plus, getting a transplant is like getting a new disease, as you have to be very careful with stuff (anti rejection medicines,...), so.... it's definitely not a cure.
@@fabiorigamonti9932 can people with cystic fibrosis not always have problems with their liver and kidneys and pancreas at all I have always wonder that
update? how are they?
Hi gram gram! If you watch the video, you'll find out! 😀
Not all parent have to have CF but will somewhere carry the gene. None of my parents have it however I do
@Attitude hello attitude does cystic fibrosis end up taking over attack new donor lungs
Hopefully, we will be able to grow organs like lungs using the patient's stem cells. No one should have to wait for someone else to lose their life in order to save their own (especially given the fact that donated organs like lungs are likely to be rejected. In the case of lungs, only 8 short years). While this might still be decades away, advances in the research into this technology seem very promising
No one should have to suffer from conditions like these. These young ladies are amazingly beautiful and losing them is simply unacceptable
Do these people live in the same house? It’s incredibly dangerous to have patients with CF in the close proximity of each other due to risk of getting each other’s bacteria
It’s different when they are siblings
They use to live in the same house, but that is no longer the case. Kristie passed away in 2019.
This breaks my heart. Is there anyway we can keep up with them? Praying
Hi, don't know if you're still interested in this but Kristie died, her sister is still well though
Cystic fibrosis will infect her new lungs after transplant? I just heard that but I'm pretty sure that isn't true...
I was wondering about her transplant and her sister. I know with the Frey life she said that CF patients aren’t supposed to be around each other but since it is her and her sister and they grew up in the same home and around the same germs it was fine. But I never knew immediately after transplant how it worked. I know her sister had her transplant I think 3-4 years ago so they can’t be around each other now but I don’t think I watched any videos recently after her surgery
I remember nicole from primary school and her sister from Tauranga hospital along with another teen girl and teen guy with cf. unfortunately the young man passed away in his teens and I remember the nurses telling me not to get to close to them because they wouldn't live to be 18.
It was a huge shock to me to think these beautiful four people I met would pass away so young I'm glad that's not the case.
I'm sorry I stole your "milk shakes" from your lunch at otumoetai primary nicole I didn't realise they were nutrient drinks I just thought you had the best lunch ever. Stay strong
Seeing this during covid really makes you wonder how these people have gotten on due to restrictions and shutdowns....
The girl's father wore a jacket for Shanghai SAS (Shanghai American School) Weirdly enough I saw it and was like I recognize that logo! Was my rival school back in high school...
Did these sisters ever get their lungs? And where are they from? New Zealand? Or Australia?
Sadly i just read Kristie Purton passed earlier this year 💔
@chloe Mahr...where did u read that? That's what I was looking for!
@@amandaallen9460 if you google Kristie Tauranga, you'll be able to find the story about her passing.
This channel is amazing.
I knew a family of ten in grade school out of ten children 4 had CF. They found out after their second child they carried the gene . Not really sure why they kept reproducing. Its tragic to watch your child slowly die let alone 4 of them .I hope someone finds a cure for this terrible disease . Also what percentage do you're lungs have to be at to be considered end stage ?
@17:35 she tired pale White doing the breath test... Broke my heart... I can't imagine hot being able to breathe
I have cf I hate it I’m ill right now and I’m 12 x ❤️
i know you wrote this 3 years ago lol but i just came across this comment and i have cystic fibrosis. i’m 15 btw
I’m 15 too will be 16 in April
So does anyone know if there is a update on her and her sister?
Her sister got her pair of lungs, but unfortunately her body rejected them and Kristie died in 2019.
@@Sound_Spark ty
@@Sound_Spark ty
@@Sound_Spark ty :(
More funding for Cystic F. Is necessary to find a cure and save children’s lives
Glad that she got her lung transplant and I hope she is still alive and thriving 🙏
Unfortunately she passed away in March 2019
Sadly Kristie didn't make it. She had a lung transplant back 2017 but her new lungs failed. She died in March this year. I hate CF so much 😭 (btw here's the link www.nzherald.co.nz/bay-of-plenty-times/news/article.cfm?c_id=1503343&objectid=12215174(
So did the other sister ever get her lung transplant?
Kristie passed away earlier this year 💔😭
@@chloemahr awwww😭😭😭
I have a friend with CF,I all ways breakdown when I am near her.
they should give out a rose to someone everyday for 64 days as cf us sometimes called 64 roses by little children
Thanks for watching Bethany!Hope you enjoyed our channel!
I thought it was 65? The story I heard was that there was a little boy who heard the words cystic fibrosis and thought it was 'sixty five roses'.
+junbh2 Because sixty five roses sounds kind of like cystic fibrosis
There is a documentary about a young woman with CF who, as a child called it "65 roses". There is a documentary on her with that title. Her name is Eva Markvoort
MrsPoodle78 sadly she lost her battle with CF, she had a lung transplant but rejected the lungs. She's Canadian. I remember seeing her on tv at some point in a cf documentary.
The husband's hair😎
Are that your biological kids? Sorry maybe a personal question, but I would love kids. I never heard of someone with cf having biological kids. So I would like to know if they are if it isn’t too rude.. Sorry.
They showed in this video that they are. The girls did get pregnant.
Im sorry..no...more....darling🙍🙍🙍🙍🙍🙍
Whoever created this world is demented to create something like this.
Off subject but the guinea pigs they have ARE HUGE lol I have had many of them as pets but never that big lol
KONICA MINOLTA KONICA MINOLTA KONICA MINOLTA
17:33
I wonder what made grandma as well as her daughters think they could not have kids.
Oluchi Onoh j
Oluchi Onoh it's a miracle that they were able. CF affected the thickness of the mucus and like the lungs and digestive track, the reproductive system is severely affected too. Most CF sufferers cannot have children so parents of children with CF generally end up losing their children and what's worse is that you don't have grandchildren to help them through it. Both these girls are so lucky that they could have children. That's usually unheard of. They are lucky in that respect. I really wish they would find a cure. One of my good friends also has two daughters with CF and eventually she will be left alone after her kids pass which I hope is not anytime soon. They are still young at 17 and 15 but spend a lot of time in the hospital. Like these girls one is worse then the other. Their's really affected all there systems. So they have lung problem, g-tubes for eating, colostomy's, & problems with their reproductive system.
Because many people with CF can't.
Katie Kat thanks for the explanation. What I don't understand is why the grandma was told she could not have more kids. Because I wonder if she would have made a different choice if she knew she would have a chance of having second (even sicker) child with cf.
Oluchi Onoh there's a 1in 4 chance of having a child with cf, 2 in 4 chance of the child being a carrier, and 1 in 4 that the child will not have cf or be a carrier. I guess they went for the gamble and hoped for the 3/4 chance of not having a child with cf.
Dalam nama Tuhan Yesus, kamu sembuh. Amen
I am actually kind of surprised that they offer lung transplant to anyone who is bound to have the same issue within 5 years. I thought that one of the criteria to be on the recipient list was a likelihood of a relatively long life if the donor material is a success.. I mean if no one else needs a lung other than cf people than I guess they would get it because no doubt that 3 to 5 years is going to be treasured. I believe that quality of life is more important than quantity in general. So I would much rather see a person get a transplant who is going to appreciate their life and doesn't have 3 dozen other things wrong with them that will keep them from any sort of life other than just existing. If a person is going to be in a coma even with a transplant I do not see much reason to give viable lungs to them if someone else can use them. Do CF people end up being bumped down on the list if someone needs lungs that is likely to live another 50 years with them rather than hope for 5 years? Or is it based only on how long one can live without the surgery transplant? I just heard them say that the average life expectancy after transplant is more like 7 to 10 years.
Lungs in general don't have a long lifespan for transplants. It's not like a heart that people can have many more years. Anti rejection meds severely weaken the immune system so most people die because they get a cold or cough that turns into pneumonia and without an immune system the rest of the body quickly fails. 5-10 years is all you can expect, whether you have CF or not.
@@mandas677 people keep staying on video over that 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 xx
@@mandas677 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 I see video on RUclips call I need to breath sisters call Nikki and kristie narrator stay 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 Thankyou for your time from jess sellars xxxxxx
All three women got pregnant "by surprise"? Do they know what causes babies???
I'm not sure her husband is happy....
If a person who has CF why would they have kids, it's dangerous because they take medication
Maria Lerenzo not really
Her husband's locs look ugly on him. Not a look he can pull off.
I'm sure hes really concerned about meeting your standards of beauty.
Seriously, how rude. Why don't you put a picture of yourself up so we can judge your looks?
Do you think that's anything you have to say mean unkind ,
I wonder if they told her to try going mostly vegan while adding in some kelp(iodine) and raw wild sea food(salmon,etc). Worked for my friend. No cheating allowed.