Can we get a virtual hug train going? I'll start. ❤️❤️❤️ HUG ❤️❤️❤️

I remember reading a research paper in high school from a professor who lived with cf and did a lot of research on it, he was told not to go to a cf conference bc of the risk of getting ill and he went anyways because of how passionate he was about the conference and that was the last paper he ever wrote on the topic. It was so surreal reading it, knowing he had passed recently and how much he wanted to educate people on the importance of cf research. He was my bio teacher's best friend and I think he would be so happy to see how much of a breakthrough has been made on this. I'll kinda always remember how it felt to read about that and how it was a first step in taking the time to learn about and really care about people who live with chronic illnesses. So I'm so happy this kind of medicine is around, I hope the knowledge researchers gained from developing it can also be applied to treating other chronic conditions.

I've been on this medication since last December. When I started it I wasn't sure it would even work. Within two weeks I noticed a significant change in my breathing and energy levels. It's changed my entire existence. Like you, I just have a bunch of complicated feelings. I'm 31, going on 32 this year. I NEVER expected to even make it this far. I thought for the longest time I would never see my 30's and if I did it wouldn't be long into them before I died. I basically had my casket and funeral planned since I was a middle school child. I never planned my life because I didn't expect to have one long into adulthood. I can't explain the sheer joy and also the sheer panic at knowing that I'm going to live past 32. I finally have an idea of what it feels like to be a normal person. I vaguely remember the time before my CF got really bad where I could run and play without any problems, and I was quite young, and now I can finally breath again, walk, run, not have coughing fits for no reason... I can walk outside into the cold and not feel like I'm dying once I get inside to the warmth. The first time I could take in a deep breath in the cold was the best feeling in the world. Heck, the first time I could breath deeply at all was amazing! It's so surreal. But so amazing at the same time. We truly are blessed that they were able to figure this out and I hope they keep going so that one day people with CF never have to experience what we went through to get here.

💜 You already know how happy I am for you but I wanted to say it again. You deserve it so much 💜 I can't begin to imagine how you must feel, so many ups and downs. The fact you had to wake up every day coughing like that, something so many of us take for granted, I can't imagine. But as always, no matter what you face, you're handling it all with strength and grace. 💜

The courage that CF kids have to develop at a very young age is truly to be respected. Now, this wonderful miracle drug has come along. I am so grateful that it is available to you and your peers. Enjoy and embrace this part of your life, you so deserve it.💕

My beautiful baby is one month old an was diagnosed at 1 day old due to having meconium ileus in her bowels she had to have an operation so currently sitting by her bed side daily. This gives me a lot of hope for her future x

I remember the day I outlived my prognosis, my projected term of life! Your feelings are your feelings FEEL THEM! I try to enjoy each and every day, It is harder than most think, but treasure your little moments as they will still happen and share them with the people you love. Oh and your viewers too if your so inclined! Be happy! Others may not be and that is not your responsibility, express your concern and help where you can, but do not let others tell you how to feel or what you must do! I appreciate your art and I encourage you to continue to create as much as you can for as long as you can, you never know how long this will be. NO ONE DOES! oH! I am 58 and will be 59 if I get to celebrate my birthday this year, Not bad for a person who was supposed to be dead at 23! Thanks you for your heartfelt video, your a truly lovely person.

I feel like this is kinda the mirror image of what I'm going through... I'm still coming to terms with the fact that I'm now chronically ill, will never be normal again, and will probably not live to 85 like I always thought I was going to. In a weird way, I think your reaction to getting better is comforting to me, because it shows that it really is possible to fully make peace with a chronic illness. The fact you are devastated with things getting better means that someday I will come to terms with things getting worse, if that makes sense? I definitely think you and others going through this still have a place in the chronic illness community. I think part of being chronically ill is not being able to take your future for granted, and that's something everyone on Trikafta seems to be dealing with.

You are an amazing young woman, wishing you a long, wonderful life ❤️

Oh wow congrats that's so awesome! I can't imagine what you are going through in terms of the mental & emotional adjustment but I'm glad to hear, see, & learn of this amazing break through in medicine & you're health improvement/recovery. you look great, continued health & healing to you ❤

i’m so happy for you that you’re taking it!!! 💙 go breathe now!

I really missed you and is so happy you are better

So very happy for you! That is amazing news. Thank you for sharing. I wish this for every chronically ill person including myself. ❤️❤️❤️❤️❤️

Hi Monique! You are very brave for sharing your feelings. Of course your emotions are valid! I think many people struggle between gratitude and guilt, and with mixed feelings about various aspects of life. So it is completely reasonable that you feel this way considering how much your life has changed. I hope you feel better soon, and I wish the entire community all the best! I am so happy to see these new medical breakthroughs!

It makes me so happy to hear the medication is working so well for you even if it comes with very complex feelings 💜 I hope you keep doing well (and stay safe in the mess that is the pandemic)!

It’s incredible to hear about how much this medication is doing! And thank you for being so raw and candid about your feelings on it, both the good and the scary! ♥️

Look at people who were living in poverty and won the lottery. They struggle for years just to survive focusing on their daily needs. It's a part of their identity in a way. They aren't prepared for that level of wealth and sometimes go bankrupt as they can't adjust to long term planning. I think you have won the lottery. But your mixed emotions are spot on. Winning the lottery can cause family divisions, stress, and all kinds of unexpected turns. You definitely need therapy from someone who gets these very complicated and unique emotions. I feel like this has helped prepare me for the day I hopefully overcome my own health issues. I have spent so much time thinkIng about it I can barely picture what I won feel like being "normal."

You just basically word for word expressed my thoughts! Thank you!

Yes, sweet baby girl, it is very natural to feel how you are feeling. Your life has turned upside down and completely changed. You said it all so clearly. I’m so excited and happy for you and your future. If you are not already talking to a therapist especially trained in chronic illnesses, please do. I’m certain you will make it through to the other side of this because you are such a smart, strong girl!!!! Maybe this will help you some, I am now a 71 year old woman and I look in the mirror and don’t recognize “me”. I’m old, overweight, gray headed, my pretty green eyes who I’ve always been praised on are faded with sparse lashes. I realize this sounds so shallow but along with the physical changes I also suffer with spinal issues so my feet go numb and I can’t walk, arthritis has reared it’s ugly head and also been diagnosed with fibromyalgia. Life is change. You have never had change so it will take some time. Embrace how you are feeling but please please don’t feel guilty. Be thankful and proud of who you are. I’m sorry this is so rambling but I want so much to help you! I don’t know if you are a believer but I am and feel we are each given a purpose. I’m praying for the Lord to make himself known to you and give you rest in that you might not know what your future holds but He does. I hope I’ve not offended you in any way, certainly not my intention. Love to you sweet girl.. 💕

You look so amazing, so cute and radiant. I am SO glad you made this video because it’s okay to feel complicated and it not come from a place of being ungrateful. You are open and insightful here and completely vulnerable which people in your position, with your condition or similar need to see. Life isn’t so cut and dry. This will sound weird but I’m glad you don’t know anything because what an opportunity. 💙 Always sending you love. Thanks for sharing. I’m happy for you!💙

Thank you so much for making this video! As someone who had pre-menopausal stage 3 breast cancer, I can completely relate. Everything you said about body dysphoria, hospitals being a comfort, and how people view life in general changes so much when going through something difficult medically. I'm happy you're here, excited to see where life takes you and wishing you the best! Thanks again for sharing!

I am so excited for you and thrilled this medication came! Take nice deep breaths and enjoy them and the oxygen it gives you. Do NOT worry about your weight, you look completely healthy girl! I am thankful that you have not had a hospital stay especially with a pandemic. I get you are scared to live, continue to take one day at a time.

Hi Monique! Long time watcher, I just don't comment much. 💗 Wanted to say I'm sooo happy for you to be on this trial medication and that you're experiencing amazing results from it physically. As to the 'complicated' feelings that come with it, thank you soo much for sharing. I have a chronic illness (EDS and co), and having had it my whole life, I can in some ways understand how utterly confusing this new way of life must feel. I tried to think of what it would be like to wake up one day and not be in pain, not be moving and doing things in certain ways to avoid subluxing and dislocations, not have that defining difference between you and 'regular' people, not be automatically assessing and altering everyday situations to fit your capabilities on that day, depending on how 'healthy' you woke up..... and I thought, fuck - how utterly overwhelming. All that extra time, all those possibilities - what would I do with myself, what if I didn't make the absolute most out of my new life, etc etc... And that's without being anywhere near as impacted by my illness as you are with CF daily and life expectancy wise. So... Heck. That's a lot to process. 💗 Love your courage in sharing this mental aspect of your treatment. I hope people who don't have any sort of chronic illness can appreciate where you're coming from, because it is so valid. 💗 I have no doubt that as time goes on, you'll settle more in to this new way of life and things will feel less complicated (and maybe you won't because there are still so many unknowns with this treatment). Anyways, thanks for being real. Sending you big hugs, and despite the mental mindfuck, I am so glad you are looking & feeling much healthier physically. 😊

I’m so happy for you!!!!

This was phrased really well! Although I am not chronically ill, I can understand how it would feel to lose something that is apart you, even if that part of you makes your life more inconvenient. Otherwise, I’m so glad the medication’s doing wonders for your health! 😊💕

Sending you love. My daughter was diagnose with CF at 3 months. Your video brings hope to many CF patient. Your right because of trikafta my daughter has a fighting chance. You are going through a lot i hope you understand that it is ok to fear about the future. Death has always been glooming on CF patients and their families the change is worth it. However, understand that if you don't have CF you can always die from random things like cancers, motor accidents, other illness such as covid. Try your best to live in the moment and plan for the future cause we know its better to fight to reach our best life with health and longevity. Even if we might meet our end sooner then planned we still gave it a shot and we did the best we could. Im sorry that living with CF traumatized your life. You are more than your illness you can now live your life as your unique you. Sending you lots of ❤❤❤. Thanks for being the first few who open doors for CF patients. Be a speaker or CF advocate there are still many more variant mutation CFTR gene that does not qualify for trikafta. So more awareness and funding is still needed to battle this illness. Your still strong 💪 stay positive and its ok to have those days where your in disbelief that you have a chance of hope.

Hey Monique. Listening to you sounds like you're telling my story. I can relate to everything you've said. I thought my body was giving up then this fairytale breakthrough treatment came along and I am living a new lease of life. I love hearing these open, honest stories from my fellow CFers. Keep winning ☺️ x

omg Monique! I'm so happy to hear this. i can see the emotions in your eyes. I'm crying. I relate to so much of what youre saying. 💜

I am so happy for you! It is so great and so wonderful the way Trikafta is changing lives!! My cousin has CF and finally trikafta has arrived in Greece and my cousin started the treatment just 2 days ago. I am so happy! Like literally, I was crying out of happiness the other day because it is one of the best things in 2020. It is something my family was waiting for 30 whole years! My cousin's lung function had dropped to 31% and her condition has gone so worse but it come just in time! You CFers are heroes! I admire your courage and I am so proud for every single one of you! Keep up the amazing work! And remember, dont live for your treatments, but do your treatments so that you can live! Wish you health, hope and future! And even so much more 2021!!! Spread love and support ❤

What an amazing account of how this medication has changed Cystic Fibrosis. I too have Cf. I'm Irish living in Spain and waiting for EMA to approve of it here in Europe. Listening to your account has been truly amazing. I have thought long and hard about not only how it may change my physical being and health but also the emotional aspect too and how my outlook on life may change. I am fairly lucky as I've been able to keep myself in good health and hope others can do the same so they get access to this wonder drug. Thank you for shedding some light on the feelings you're going through, I'm sure this is true for others new to this medicine too. I empathize with you as only those with cf can and this further boosts my excitement to receive it and has prepared me for the quite unbelievable new perspective on life that comes with it . Be proud and don't feel any guilt, you deserve this and the time will come for others. Take care and thrive. Thank you.

Thank you for sharing. You aren't beating a dead horse. As another person with a rare disease, I applaud you for sharing so much. Rare diseases need people like you to speak up and tell people about what's going on. You never know, you may be some child with CF's hero. Speak your truth and I am so happy you get to be a part of the "guinea pigs". You look great, you have so much more color and don't worry about those 15 pounds. You look fantastic! I had the other end of the spectrum, my life got wiped out from under me and I went from normal to sick. What you're experiencing is totally normal, it's OK to not know right now. I'm just so happy for you.

wow sending good vibes your way ❤️

I know this is an older video but I've been researching because my son, Reed, turns 6 in August and will be eligible for Trikafta and I feel the best way to know what to expect is to listen to what real people's experiences have been. I want to take a moment to thank you and everyone else who has come before who have trialed all of these medications and made it possible for Reed and others like him to live a more normal life. I was in tears watching your video - thank you for sharing your journey and specifically your experience with this medication. Best wishes - keep fighting and keep being amazing. Thank you again!

i’m starting it today thank you so much for this video definitely gonna subscribe

I LOVE everything you said about living your life a certain way based on a timeline your doctors told you about. Then all of the sudden you're told to forget that, because you'll probably live much longer. I'd feel just as scared, and lost. I wouldn't even know where to begin. I'm a CF patient that doesn't qualify for Trikafta, but if I had, I wouldn't know how to deal with the change to life expectancy. I've thought about my mortality since I was 12 years old and have come to terms with it. So I knew exactly what you were saying. But, everything in life is about routine. I hope that one day you'll wake up and no longer feel afraid at the second chance you've been given. I can tell how strong you are and I'm sure you will figure out how to navigate your new life without fear. It will just take time.

Hope you’re well Cyster. Much love from Texas. Have been on Trikafta since 11/19. Continue doing well.

don't worry about menopause, it is not that bad, some cannot hardly tell, it is something our pharmaceutical run society somehow has turned into something it is not, a diesease that needs medicine, and it is not.

KZfaq didn’t show me this vid (hadn’t hit the bell - oops!) only seeing it because I seen you posting on Twitter. This is wonderful to hear about how the physical impact has been so good for you. Mentally, it’s understandable that you’re struggling with this. Take your time lovely.x🧡🥰

Thank you for sharing. Amazing meds. And talking about it may help you find your new normal self. You'll get there. I am on anxiety meds and the one i ws on before made me lose my creativity. I went off of it for a few years. Now i am on a different one and feel better. I am still able to be creative but not anxiety driven art work. It takes more work to be creative but it is possible. So you got this girl.

Monique I'm so happy for you, medical technology has made it possible for you and other CF patients have longer, fuller lives and I'm just over the moon for that. Also, it doesn't sound crazy that you were used to living a certain way and it was a norm for you and now you're lost. Tbh when I started receiving XOLAIR Injections for my Anaphylaxis and severe allergies, it was such a weird experience I could eat a banana without itching and swelling, and it was almost like I could feel my allergy cells being suppressed. I was so happy and excited and hopeful that one day even my worst food allergies and medicine allergies would be suppressed. And there's ups and downs on this med too. So I understand being happy, but anxious of the unknown of the future. Just keep taking it day by day and find yourself again over time😊💙

hope your alright i love you and art very much thank you for always being honest with us

Hi Monique, thank you for sharing this. Listening to your comments certainly brought a lot of thoughts and allowed me to reflect on my experience with Trikafta in ways I had not thought about before. Everything you said is spot on... Love the "Mind F@ck" comment about planning to live a certain length of time and then it all changing. I was told I would be lucky to live past high school and when I graduated I thought to myself about how that wasn't supposed to happen, now what? The life expectancy date kept extending and I realized I better get serious about planning a future. It has ben an unexpected blessing and I'll be turning 46 next month. I like you started Trikafta in November 2019 (shortly after it was approved). I was surely headed toward a lung transplant, or worse when the drug was finally approved. I knew it was going to be a miracle drug because I was following it closely for years, my family and I helped raise money for the foundation and I participated in every study I could qualify for leading up to its eventual release. Now, all that is in the past, and I can breath. No more coughing, tune-ups, no more fears of my life ending soon. A few days ago I raced, full speed against my youngest and oldest daughter down a very long hallway without coughing (I reflected back on when I taught my girls to ride a bike and how incredibly difficult that was for me) in a hotel in Washington DC where my oldest daughter was invited to participate with the CF Foundation and tell her story on Capitol Hill where she met with Senators, congressmen, and staff. She was fighting for us, for those with CF who can't take Trikafta. What a blessing, God is Good and he will provide. Stay strong, keep talking about your feelings and emotions and you will find your new you, your new life as a recovering CF lady. God Bless You.

What a blessing!

My younger sister died of CF in 2001, she was only 12 years old. CF is such a horrible genetic condition. I'm so happy for you and sad it was too late for my little sister.

Hey monique I too have cystic fibrosis and I'm due to start having the exact same treatment I'm glad to come across this video also I'm looking to see your other videos to gain another person experience and perspective with same condition hope your well monique

I don’t know much about the US healthcare system but here in the U.K. McMillan or the nhs through GP referrals provide ptsd counselling to cancer survivors or other long term / chronic medical condition sufferers to come to terms with changes, recovery etc. Its amazing that tricafta is helping you medically but the mental health side of this is tough to deal with.

Facing the complicated does not mean your ungrateful! It's incredibly overwhelming. Talking about it will help tremendously. ♥️♥️♥️

Thank you for sharing all of this 💙 I want to write something deep and emotional supportive but it's hard to find the words. Though there are difficulties and differences in your life now, I feel really happy that you are able to be on this medication. And the way you talked about how this medication has helped you gave me a lot of hope. Though the chronic illnesses that effect my life are different diseases, it makes me feel hopeful that maybe someday there will be more medications that can do for others what this one does for those with cystic fibrosis 💙 Also for other videos, since you said this medication is so new I'm interested in how you were able to get on it and what that was like!! Also just generally about having chronic illness during the pandemic. I haven't left my house since March and SO many people have been acting like I am over reacting when like??? No yall just arent taking this seriously enough.

I remember first hearing about this medication coming out and immediately thinking of you, and now look at how far you’ve come! As complicated as life may be for you now, I’m proud of you for still approaching every day so gratefully with a smile on your face. I can’t even imagine what a mindfuck this all must be, having everything you’ve ever known thrown into a tailspin. Has your sister been able to take Trikafta as well, or was she not considered eligible since she had her transplant already? I’m so glad this is working for you, you look so radiant and sound so clear! 💕 From one chronically ill woman to another, you’re always welcome in the spoonie community. Whether or not you currently experience the symptoms of CF, you’ve still lived with it for your entire life up until last year, and just because they’ve found a miracle drug doesn’t change that. Chronic illness isn’t always visible, and it doesn’t always have to be something untreatable that you suffer with daily. Having a treatable chronic illness is just as valid, even if you feel able-bodied now.

I wish there comes a day when a medication like this is created for M.E. I'm so happy for you and everyone with Cf that are taking this

Very valid feelings. I don't have cistic fibrosis but can relate 100% in my own way with my own chronic illness

My daughter is 2.5 and I'm raising her alone. Getting her diagnosis was terrible, and her 3 surgeries, meconium ileus, perforation, doctors telling me she won't survive...but a miracle happened, she's alive and I'm so grateful as well. She can get Kaftrio (Trikafta) at the age of 6. We live in Hungary. Thanks for opening up . I heard the medicine is difficult emotionally, it affects your mood. All the best ❤️

Monique your feeling are valid both positive and negative. Being scared and terrified and unsure doesn't make you ungrateful. You may be thin, but if 15 pounds is a big difference and a big deal to you then it is a big deal. Finding out that everything has changed in your life is terrifying even if thibgs are objectively changing for the better. Don't negate all the work and strength that you have put in your entire life. You are lucky to be on that medication. You were brave to try it. Try not to feel guilty because you are sharing this and proving that this medication can help so many other people. You didn't know how it would change your life. You took a chance and it paid off. You may not have the every day struggles that you previously had with CF but now you have this new struggle. People with other illnesses also go through feelings like this where there illness no longer 'defines them'. You're illness may have shaped your life but it isnt everything. You're strong and brave. Your creative and witchy(in a good way). Your a free spirit. You're a wife. You're a talented artist. And an inspiration. You are everything you we're, your disease has evolved and now you get to continue to evolve too

Well that made me cry lol at first happy tears and then tears because I can relate so much to what you are going through (different illness but similar feelings) very personal video that more people need to see to maybe understand what people with chronic illness go through (obvs it's different person to person) but might help people understand some of the feelings and experiences we have to deal with and how hard it is sometimes to deal with everyday things people can often take for granted (breathing for example)

You are so beautiful. My 21 year old daughter has cf too. She has been on trikafta since it came out. Her health has been amazing. Just relax and realize you will need to plan for retirement….cool as hell right! Please trust the science young lady. And this isn’t the end game..better is yet to come for you.

Thank you for sharing....you will still carry those great qualities in you they will just show up on different ways now....🙂🙂🤔🤔

I'm not crying because I am so happy for you and all the people that are going to get so much good out of it..... No... I'm not crying.... You are crying!

Im also a cystic fibrosis patient i start trikafta Thursday im underweight right now and have infections in my lungs i hope it helps.

Thank you so much for your inspiration🎉My daughter who’s 2 is getting Trikafka next week!!! Yaaay🎉

Oh my God, this is great! As a nurse who took care of/ administered treatments to children with cystic fibrosis kids that rarely lived to their late 20's (back in the 80's and 90's) they were in constant torture due to all the medical treatments (it's like they have glue in their lungs, for those who do not know) plus it affects other organs as well besides the lungs. So happy for you . And, do you realize how beautiful you are? This fact may make many people in the youtube world that don't know about this disease have had a hard time to understand how bad this disease is. Of course the low weight does for some reason help people to keep a youthful look.

A. HUZZAH! 2. *Hugest of hugs* iii. You are still you. You are still strong and compassionate and brave and honest and kind. That hasn't changed. It's ok to mourn the loss of your previous coping mechanisms. It's normal to feel guilty (not unlike survivor's guilt...?). It's ok to need time to figure out how everything is going to work. And it's ok to lean on your loved ones and your support systems, professional and otherwise. ♥♥ More hugs ♥♥

Hope your ok💕

Glad that so many people are doing well! My country won’t pay for the drug unfortunately. I have CF myself so I guess I’ll have to wait and in the mean time go to the gym as much as possible.

I know this is different but I have an autoimmune disease but I found a pain management therapist that specializes in therapy for people who have chronic illnesses. It was so helpful. It helped me work through all the emotions and there were also support groups so maybe if you can link up with the other trailblazers and discuss your emotions I am sure they are experiencing the same thing! God has provided you with so many new opportunities now and has a greater plan for you! He must have such huge plans and will use you to help so many other patients. You are going to help so many people and what a wonderful opportunity for you to use your platform to help those who have gone through or beginning their journey. I can not wait to see what your future holds but just know you deserve all the blessings with what you have been through!

Not thinking about the future is good. Go back to that state of mind. Keep living by the day like you did, only now not because of your health but out of Joy and freedom. Don't panic, nothing is under control. We know nothing. Not knowing is good. Let it go. Life knows better, it will do its thing and you only need to be present with that. Your identity is life itself. It's much bigger than the little person or the body.

You have no idea how happy i am to hear this! I'm so happy for you

Thank you so much for sharing this. I have multiple sclerosis (diagnosed 1998 but symptoms since the early 80s) and have had a similar part to my life when my relapses (up to 6 months long at least once a year) stopped because I started talking one of what they call Disease Modifying Drugs (DMDs) in 2003 and have not had a major relapse since then. I still have underlying symptoms which my life still has to revolve around and so I cannot imagine what the results of Trikafta feel like to you but I have had to mourn over and over again as I have lost ability after ability to this progressive disease and I can completely imagine that if there was ever a medication that close to a cure for MS I would end up mourning the loss of my identity as a chronically ill person.

Now you can be proud of how you are dealing with this new unknown frontier for the illness and how you are a pioneer for those to follow who may get this drug or its progeny. If you have one you can also talk to your therapist about your new sense of Identity, what's the same (you are still a women with a chronic illness, a woman with CF,), the shifts in that (now it is this brave new frontier of an untried drug you must navigate) the new parts of yourself that are able to express themselves which werent before (like being more physically able to DO things) and how you can be proud and happy about that and begin to identify as physically able. Etc. Maybe connecting to the things which are the same on a fundamental level (you are still a woman with genetic CF and that is still a huge constant in your life) and what else about your personality and sense of self (you are still kind/honest/self aware/ whatever your traits are) and you are still able to deal bravely with these DF changes to ground your sense of self, then start adding in the new self concepts slowly. You might also spend some time when alone just looking at your body in the mirror and by looking down at it and touching the parts, just getting a sense of the body now. COming into familiarity

THANK YOU for this video!! I was smiling the whole time. I am currently waiting to start Trikafta. I have to wait a few more months though, for drug company applications approval, etc. I am getting antsy to go on it. Does it help with the fatigue? I feel so drained all day everyday. I am so happy for you!! Thanks for making this video

Half way listening to this video. I don't know if you check your old channel, but I wanted to share my experience that is similar to what you, and possibly many other CFers, experienced pre and post Trikafta. My channel goes to some detail on my past condition, but I had bronchilitous obliterans. I don't remember the exact details but I believed it was obstructed airways caused by inflammation. I had that condition since I was less than a year old. At the age of 25, I had a double lung transplant, and if BO is similar in experience to CF, being able to breathe that full air without coughing or wheezing was amazing. I finally could breathe efficiently. Some of the experiences you were describing in this video mirrors my own. Your husband being tired out at Disneyworld? My brother and I were at a mountainous area 12,000 feet above sea level. Normally, I would be exhausted or outright not be there, pre-transplant. Post-transplant, I was fine. Some dizziness, but fine. My brother, on the other hand? Out of breath and struggling. And it was amazing 3 months after transplant. I was cleaning my room and I was getting many things done in the hour and not once did I feel tired or out of breath. If it was past me, it would have taken me a whole month to clean my room. But at the 3 month post mark, it only took me a day and a half. I don't know if I can say I have a new identity like you did. I mean, I'm taking a boat load of drugs because of the transplant, but as of now, I feel like I'm becoming who I always wanted to be. Though I will say, past me and current me are radically different.

i remember when you mentioned you were going on a new medication, and i researched as much as i could because i wanted to know what all it would do. and when you started improving, i was so excited! i'll admit, i tried to pretend you didn't have CF for a while, because it seemed really scary, and that's just on the outside, and that was kinda selfish. you kinda touch it in the video--things like CF, you're given this life expectancy. and i didn't like thinking about that, because i love you and i'm selfish and the thought of not having you around now that i have for the last couple years is haunting. so it's this.. weird opposite for me? you go off into a scary unknown, and for me, it's like this terrifying certainty has been lifted. and again, i know it's selfish, but every time you were in the hospital, and every time that hospital visit came sooner and sooner and sooner and i'd try and be positive and be like yeah, you're gonna be fine! the hospital's gonna make you feel better! and then you know, i would have to take a step back and tell myself you were gonna be okay and i was more scared about it than you were and i should trust you for not being scared because you knew it better than me. i don't think you can say none of those things apply to you anymore. you are incredibly strong, momo, and just because you are on a medication that is helping you does not mean you are out of the community. you're still ill. i guess, it's like mental illness as a comparison. if you have depression and you take anti-depressants, you're still depressed. that doesn't change. you just have a partner in the ring now. but you aren't wrong for feeling like you do, of course. it's terrifying, this sudden unknown without any certainty. you don't have to feel like you have to be grateful for anything--and that doesn't mean that just because you feel like you don't know what comes with life anymore, you're ungrateful. i know how much this medicine has done for you. i know you're super grateful for that. but as some who really hates when their routine is thrown off, i can't imagine having twenty some odd years of routine fucked over and thrown out the window. anyway. i love you very much. you are wonderful, and i'm glad the medicine is working, and i'm sorry it's so scary, but i'm here if you ever need to scream at the void (and perhaps have the void calmly listen and provide warm tea and cookies).

I totally get you, you lost (a piece of) your identity. You have arranged your life around CF. Once I told a client (in a similar situation) this : Your future was short and everything you had on your bucketlist had to be done in a short amount of time. Right now, you have checked of almost everything on your bucketlist and all of a sudden.... you got to make a new one. Not fair! But you deserve your future and the benefits of Trikafta. I hope you will find some peace of mind in the near future!

This video is very interesting as someone with stable conditions! I'm visually impaired, have a vertigo condition named POTS, and have severe anxiety. People wonder if I'd take a cure if there was one, and I have very mixed feelings on it. It's almost offensive the idea of being cured, but at the same time I'm curious what life is like without these complications. But I don't wish to have been born without them; they do define a lot of me. Many older people who are diagnosed with a terminal illness wish they could continue their lives as normal for as long as expected. Older people diagnosed with a non-terminal illness feel similarly, unlike me. So I've wondered for a long time what it's like for people like CF patients who have a shorter life expectancy from day 1. This new medication is amazing! But all the sources I saw on it in the mainstream were from doctors and media and parents, not the person with CF themselves. Thank you for this informative video on this history-making time! I added it to my playlist "disabled life past and present" for future reference. I love learning about our diverse community and our history!

I had a friend with Cystic Fibrosis. She did debate and her speech was about Cystic Fibrosis, it was titled sixty-five roses and it was fantastic

Holly shit i'm out of the loop. I have CF... but I skipped a few appointments. OMG. This feels surreal.

Hi glad u r doing well physically, sorry to hear about some mental issues u r having,like u say focus on the positives and live ur life to the fullest. Can I ask, was u on Symkevi before trikaftor? I'm on symkevi now and it has helped me from having 3 courses of ivs a year to 2 courses in 18 months. The docs said kaftrio is much better when it comes to spirometry results and breathing easier,I just hope my lungs aren't too damaged for me not to feel the benefit. Im 45 and on symkevi at the moment and due to start kaftrio (uk name) in a few weeks, exciting times. Sound silly this but I'm looking forward to being able to fall asleep without sitting up all night coughing 😀 best of luck to you,keep fighting 💪

Have a great life Monique, enjoy every day as much as possible, make each day into a pearl and at the end you will have a necklace. I think what the CF community feels with Trikafta is what the some of us feel about antibiotics. Its so great when science comes up with a silver bullet solution for a disease. Welcome to what is a hopefully a normal life expectancy 😆😁😄. Its a privilege to be born in a time like this. The trikafta makers deserve a Nobel prize in Medicine for this, despite the price. I certainly hope goverments and people worldwide will rally to help fund this life saving and overpriced medicine.

Yeah cystic fibrosis is awful to deal with so on paper if u had a cure or nearly perfect treatment it would solve everything and make you happy. But since illness is your normal it makes sense to be scared to have to experience something different. Im really happy for you and what the future holds. I hope you can adjust to this new life :)

Dr. Elizabeth Tullis, the Director of the CF program at St. Michael’s Hospital in Toronto, Ontario, Canada, emailed on Wednesday advising me that I was approved for Trikafta. I have to get a CT scan and a sweat test. I have heard great things about this drug so I’m looking forward to it..

Do you ever watch Mary from The Frey Life, she is on the same medication, she would be a great person to talk with. Wishing you the best of everything.

I feel like i understand what you mean. Its like you have to learn to be monique renee all over again and like you have survivors guilt xxx

Hey Monique ! I don't have CF but I've known those who have. I've lost friends to if. IM DELIGHTED to announce its now available in Australia !! As of a few weeks ago. $47 for those who work and can't get disability and $7 for those who are on disability ! So happy and over the moon. I know my long lost friends who passed in the 90s would be delighted !!! Sonia. Sydney, Australia

I wish it to be available in India very soon.

It's almost like you have to relive your whole life starting over at 20+, strange strange thing. Soo many things to re-learn, unlearn, and adjusting to a new way of how your whole life has been shaped. Like picture yourself in quicksand without arms, and then at the last second you're given arms and you don't know how to use them but they can help you get out of that pit. Idk weird analogy, but the psychology of this type of shock needs to be taken slowly.

You know what I noticed the most? Not coughing. I don't cough anymore, and it still feels weird to me.

Wonder if we will ever get access to this drug in South Africa. We are probably last on the list.

Thanks for video. I’m 49, diagnosed at 37 when the illness kicked in. I still have to take breathing treatments 2x day. Do you still need to? I have been off/on Trikafta four times because of adverse effects and weird sensations. Do you experience any adverse effects? Also, I felt the first time was most effective. Laughing with no cough and sense of dryness in lungs is a strong memory. But back on it again not the same results ie., laugh feeling. Weird. Have you been told by your team about yo yo dosing? Take care kiddo

Hi Monique! What age did you get diagnosed with cf? Also, did you have symptoms before that? Thank you!

would you please tell me about this medicine price and a will appreciate it ?

a cuanto el gramo ??

Monique, my chronic illness may be a mental one, but I still relate to a lot of what you said in this video and I wanted to tell you that all of your feelings are valid and important. I had no idea that CF was that difficult, but I am so happy that you are getting a chance to truly live. I hope that the meds continue to work and that things continue to improve for you and that you are able to cope with this life-changing experience. Thank you for sharing this.

Lets feel weird together and give each other a big virtual hug!

South Africa havent got Trikafta😢😢😢

Don't feel bad for anything, now with trikafta you have new opportunities.Take advantage of that 😀

How to get a acess

I have Cf how can we talk to other cf patients

How many days should i take this medicine?

My son takes the medicine Kenneth McGrath ( Danger )

😭😭😭😭Algeria 🇩🇿 no trikfta 😭

You do still belong in the community.