I'm so impressed with your ability to speak so genuine and with perfect articulation in very stresful situation. I hope you'll get better soon - thank you for being an inspiration!
I’m so glad I found you here. Your story is so similar to that of my best friend. She fell mysteriously ill while in medical school and, like you, ended up on a vent. We always wondered if she might have been poisoned by the chemicals she encountered in working on cadavers. She was never able to finish her studies, but she lived for about 30 years on the vent. She passed away about 10 years ago, at 53. She was a wonderful person. You remind me very much of her. I used to watch her clean out her tube. I’m a musician, not a medical person, so I would cringe the entire time, but she always got it done. Hope you get out of captivity soon! Janice always said the hospital was the enemy. 😊 Much love and prayers for you-feel better soon! ❤
@CHClark895 Thank you for sharing some of your friend's story with me. I am so sorry she went through so much. I cannot imagine everything she endured. May her memory be a blessing. Thank you for all your kindness.
Thank God you were able to clear that out. I don't know anything about nebulizers, tracheostomies, beyond what I've read/watched online. I'm blind, so I can't see the mucus. But I believe you, and could hear the huge change in your breathing after you cleared the mucus out! You're able to breathe on your own without the vent for brief periods of time? Very interesting. The relief in your voice was palpable.
Thank you for all the insight. Yes, I can breathe for a short time without my trachoestomy tube and ventilator. It is very tiring to breathe on my own, but it is possible for me to do so. I am glad you were able to hear the change in my breathing after clearing out the mucus. Thank you for all your kindness.
There are definitely others going through similar. You’re helping them to navigate this process. I spent 30 years of my life abusing my lungs smoking cigarettes. I thank God daily that I’m able to breathe. Praying for good health, joy, and peace for you.
Thank you for sharing, it helps those of us who do not experience severe chronic illness have understanding and appreciation for what those that do go through, and have empathy.
I just wanted to tell you how remarkable I find you and your outlook on life. Your videos are helping more people than you realize. Youve clearly always wanted to help people and thats why you dedicated your life to medicine, and though life is extremely unfair and it took one dream from you, It also gave you another way to dedicate your life to helping others and youre doing exactly that. You should be extremely proud of yourself for this. Thank you for sharing your knowledge and also your strength with the world - your resilience lifts so many spirits, you certainly lift mine
Thank you for making these videos. Your breathing sounds alot better now compared to before. Were very happy that the hospital was able to help you. Have a nice week too.
I have a degenerative condition (first showed up when I was 13 but most doctors don't know it exists so I managed to get a proper, official diagnosis only a few months ago as a 30-year-old; mind you- most people don't believe me when I say I have it as what's visible of it just makes my body uglier by the year and so people prefer judging me about things they don't know about me instead of believing they're being superficial about me due to my looks, but at least I do know why certain things have been happening to me and how to try and slow my condition down as much as possible) and a number of health issues. Maybe that's why but- I really like watching your videos; it feels like I'm connecting to somebody similar albeit with a completely different insight on dealing with health issues daily at a young age. Thank you for taking the time and being brave enough as to show us something most people would hide in fear others will ignore / overlook / misunderstand.
Thank you for sharing some of your story with me. i am sorry you have gone through so much. I cannot imagine everything you have endured. Thank you for all your kindness. I really appreciate it. All my best to you.
When you had to do that in your longer hospital video, you were so calm, cool and collected while recording, allowing us to see the process. Thank you!
I have some decades-long struggles in in my life that bring me great sadness. Watching your videos has inspired me to keep going in the face of crushing grief. Like you, I must find a new purpose after all of the dreams I sacrificed for have died. Thank you for inspiring me to not give up. Thank you for being an example to me.
I want to thank you for helping my son with health questions recently. His name is Joseph Carlisle. He is my son . He lost his battle with his life long illness yesterday. He had nemaline myopathy. You also helped me too Thank you so much ❤
Thank you so much for letting me. I really appreciate that. I am so sorry for your loss. I cannot imagine everything you must be going through. Sending lots of love and hugs. May his memory be a blessing.
Thank you. You can see my travel vlogs on my other TH-cam channel. Here is the link to my latest travels: th-cam.com/play/PLTvbHDoOBqfXq3wMkQrFIZU1E-K1apgqF.html
Again , a very important thing to know how to do in this situation! 👍🏻👏🏻👏🏻👏🏻❤️🥰😇 Thank you for teaching us these tips and tricks to make these things less scary and doable! ☺️
Hey, just wanted to let you know. Thank You for sharing this. I hope you get well soon or there are new medical breakthroughs to let you live better. I'm a type 2 diabetic myself, but you are having a difficult time than me. But still, living a really positive life. I learnt a lot from you. I will remember you in my prayers. Have a nice day, and remember so many people watch you and prays for you.
This brings back so many memories my dad had ALS n had a trach n as a sophomore in high school I knew how to take care of it from changing it to suctioning
Great job, good clear video to show how it's done. You are doing a valuable service to those with trachs and ventilators. And they are getting very experienced and meticulous training in clear videos. Another plus is your medical background and attention to detail. God Bless Russ
L O L when isn't it an emergency situation!? L O L 🎉 I work on a long-term vent unit & totally in awe of your self sufficiency! I try so hard to get patients to become more active in their own care. I can't suction 5 people at once😂Encouraging education to self care is met with resistance 99% of the time. I'm not lazy! But who wants to wait for me!??? I just don't get it! They all have inlines too.... it's so simple .... but most love to just lay there drowning in fluid ..... it's baffling! I'm not talking new pts either.....some have been on the unit for 20 years! they'll do virtually nothing on their own... just bonkers & sad
Maybe it’s because if you don’t deal with medical issues and then suddenly become seriously disabled, it’s TERRIFYING!?!!? I’ve always been disabled, but when I received an ileostomy stoma last year, I couldn’t look at it for at least the first two or three months. I don’t have the dexterity to change it myself, but when my mom would change my bag, I would just shove my iPad in front of my face so I didn’t have to see it. I had colonic dysmotility prior to having my stoma surgery, and it had progressed so much faster than expected. So seeing my stoma was a constant reminder of the fact that my body didn’t wanna work. Maybe before you judge someone for their choices or attitude, take a second to put yourself in their shoes. I think that if we’d all walk a mile in other people’s shoes, we’d all get along so much better and be so much less critical.
@carolanderson5075 totally get it..... but after a decade, it's no longer fear .... I'm very empathetic & have remained bedside because I love it.... I love long term... what i don't love is when a pt refuses to do anything for themselves.... its like they create their own prison cell lying in a bed.... I'm not judging anyone.... I'm admiring those who overcome
@@carolanderson5075 Thank you for sharing some of your story. I am so sorry you have been through so much. I cannot imagine everything you have endured. Thank you for sharing all your insight.
You are a huge inspiration! Thank you for your openness sharing your life, your positivity and beautiful smile! I hope you become big on youtube, I subscribed. Big fan! Keep it up ❤️
Probably not the best time to watch your latest video whilst eating breakfast! Good job I have a strong stomach 🤣 glad your back fully on the ventilator so you can rest easy xxx
Really fascinating thank you for taking the time to explain it even though it made you very exhausted to do so. Your ability to speak with a trache is astounding. Is yours in just the right spot it's not impeding on your vocal cords? Thank you for your wonderful words and education!
@LifewithaVent absolutely ❤️, I am just astounded as others I've heard have it they can't talk very well with it. Looking forward to more educational videos
Ana thank you for the great tip. I guess i have been lucky not to get a mucus plug near the end if my trach. I do gwr that thick sticky mucus towards the end of my tube. I take a long cotton tip qtip dip it in hydrigen perioxde stick it carefully down my trach tube swirl it around and take it out. It does bring up most of my mucus. Plus i do not have to take out my trach. Just another tip to try.
Hi, I love your videos and I love your story. I thought about you a few days ago when I researched how to qualify to do a Ted Talk. I thought about you because you have a compelling story and just based on the way you speak, I imagine you would be a great teacher... so I think you could give a compelling Ted Talk. I googled it for myself, and watched a few TH-cam videos, and there are "local" chapters that host talks, usually centered around a theme. Please look into this, for you may enjoy telling your story, making new contacts, and experiencing your community in a new way. Take care.
😢 I'm so VERY sorry you have to go through this 😢 Does it hurt when you put your Drake into your neck? It looks like it would hurt😢 I watch your videos all the time but I don't always know due to I usually watch on my TV. I'm living with lung Cancer And many other Chronic illness. I love your attitude your so Positive. As my 95 year old Father says staying positive is the trick. We are all stronger together 🦸♀️☮🦋
Thank you for sharing. No, it does not hurt to put the tracheostomy tube into my neck. I am sorry to hear you are living with lung cancer and many other chronic illnesses. Thank you for all your kindness.
Hope it gets better soon. Cool device right there. Have you ever been to genetic testing for any connective tissue disease(s) like EDS, Marfans, Mitochondrial disease?
I hope you feel better and are able to be discharged soon. Bummer about the suction not working there. Perhaps some sterile saline could help loosen the secretions. Not sure the catheter sizes they have available to you, but a larger one may have better results with increased pressure. When I did my clinicals years back we had a few to choose from with some offering a better seal depending on the patient. Your RT or pulmonologist might have some other options.
Thanks for making these videos! I'm glad your out of the hospital. Question, what does a ventilator do? Since you can breathe without the machine, can you go without it for a long time? Or is it something you need 24/7? I see you can push air around with your lungs without the machine attached. I am sorry if my question seems silly, I don't know how these machines work, they fascinate me though!
Thank you for your question. My ventilator pushes air in and out of my lungs. I can breathe for a short time without my ventilator, but soon my breathing muscles tire. If I do not connect back to my ventilator, my breathing muscles stop working, and I stop breathing. I stay connected to my ventilator for most of the day. I hope this answers your question.
You're such an inspiration! God bless you! Are there any specific tests that could be taken to evaluate mitochondria productivity? I'd appreciate knowing more scientific information about mitochondria disease, early symptoms, and how to diagnose them. Sorry for the noob question, but is it possible to pump the human body with ATP (Adenosine triphosphate) and somehow filter out ADP and AMP? One more question: Is it possible to transplant some cells with good mitochondria so that they produce more ATP for all organs? One more question: is it possible for you to train and grow muscles? Are you doing some kind of training? I'm an engineer, and I believe life support devices could be improved to become more advanced and easier to use. It is possible to invent non-clogging tubes (use a material that doesn't hold sticky things) or automatic unclogging tubes (use a rotating spring inside that pushes sticky things to the outside) or double tube (pressure and suction) that can be cleaned automatically based on pressure sensor and/or SpO2 level. Less bulky, less weight, more features: combined humidifier, ventilator, and nebulizer, TPN pump with internal mixer of vitamins of your choice, and maybe some autonomous health monitoring systems. It would be very nice to hear your thoughts on devices and equipment! P.S. One more question - does it make sense to combine ventilator and some oxygen concentrator, so it can automatically increase amount of oxygen in air for you when you are short of breath based on SpO2 and/or HR?
Thank you for all your questions. Buccal swabs can be done to test for mitochondrial function. Early symptoms vary vastly and are unique to each individual. Mitochondrial disease is diagnosed via muscle biopsy and/or genetic testing. (Some people are also diagnosed with Mitochondrial Disease based on symptom presentation and family history.) I am not sure if pumping a person full of ATP and filtering out ADP/AMP will work. ADP is needed in the electron transport chain. Without ADP, the electron transport chain will not move forward, and oxygen (which will break down into oxygen free radicals) will build up in the body. It is possible to transplant good mitochondria into the body. That subject is the basis for gene therapy. They take a person's bad mitochondria out of the cell and replace it with good mitochondria. The hope is to spread good mitochondria to the body. However, the biggest issue with that therapy is there is no guarantee the new good mitochondria will not also become diseased. Yes, it is possible to train and grow muscles. There are physical therapy programs which do this. However, it can bad consequences. A friend of mine was in one of these therapy programs. The stress the muscle training program created on her body caused her to have a couple of strokes. She ended up passing away. (Lactic acid is often high in people with mitochondrial disease. Doing muscle training often increases the lactic acid in the body which in turn can cause very serious health complications.) Gentle aerobic exercise is generally preferred over more intense muscle training (which tends to be anaerobic.) I try to do some aerobic exercise a few times a week. That is great to hear about all the advances to support devices. The tracheostomy tubes sound very fascinating. There is a device which has multiple functions on it--a ventilator, nebulizer, cough assist, suction and oxygen. (It is called the VOCSN Multi-function ventilator device.) There are two issues with this device. One, is it very hard to get insurance to pay for the device because the person needs documentation that all five options are medically necessary. (Not all patients on ventilators use all those devices.) And two, if one machine breaks down, the entire ventilator system has to be sent in to be fixed. A ventilator with an oxygen concentration will only work for people who have documentation that oxygen is medically necessary. (I do not use oxygen with my ventilator.) That sounds like a great device to automatically increase the amount of oxygen in the air, but it may not be something insurance companies approve of and may be limited to use in a hospital or long-term care facility. (Insurance approval is often a defining factor for many home devices. For example, even though I have a neuromusuclar disease and a cough assist machine would benefit me, I was denied a cough assist machine by my insurance because I have not been in the hospital enough times in the last six months with pneumonia.)
If you are in the hospital, I am wondering why you have to do this procedure yourself? Can’t they do it for you-or do you feel safer doing it yourself?
Thank you for your question. The only thing the hospital tends to do if there is mucus in the tracheostomy tube is suction the tracheostomy tube. I know from past experiences, suctioning will not clear the mucus if it is clogging my tracheostomy tube. The mucus will be too thick and too sticky to suction. My former pulmonologist told me to use an obturator to clear the tracheostomy tube. That was a technique she found to be very useful and effective. Even though I am in the hospital, I clear my own tracheostomy tube because most respiratory therapists at the hospital only feel comfortable suctioning the tracheostomy tube. They will not take out the tracheostomy tube and use the obturator to clear the mucus plug.
That looks really scary. I hope you feel better soon. I'm sorry that you're struggling at the moment. In a little bit of a medical update on me. I was getting a lot of pain in my feet when I was walking long distance due to my fasciitis. So I just saw my doctor about getting approved to get a power chair. Because I can't work anymore do the fact that I can't stand on my feet no more. I really enjoy the videos and learning about your ventilator. Sending 🥄 spoons and healing hugs from a chronic illness warrior 🪖 to u ❤
Thank you so much for sharing. I am so sorry to hear about all the pain in your feet when walking long distances. I hope all goes well with getting approved to get a power chair. Thank you for all your kindness. I appreciate all the spoons and healing hugs. All my best to you.
Wow i wojld hace been taught this was never even mentioned about that thing & getting out a plug i dated a lady & she had a trach & vent she did her own training but i was never trained this she also had a brother with the same thing as her & i worked for him & mever was trained either on this & this was mecer mentioned years later i was not workijg for him but he had nurses that worled for him 24/7 One night he got a plug & no one could suction it out & he sadly emded up passing away i beleive the thing u just showed comes with the new trach but never had anyone mentioned unwould use it to get the plug out wow I miss my friend he was 50 when he passed away
Hello! I dont know if you have mentioned this in another video but, what type of mitochondrial disease do you have? Because you didnt develop syntoms until your 20s. Thanks for sharing your story 😊
Thank you for your question. My Mitochondrial Disease does not have a name. It is a series of gene mutations. My first symptoms were noticed when I was three years old, and the symptoms continued throughout my childhood but were either misdiagnosed or brushed aside.
Mam inreally admired you my husband has a tracheostomy tube dure to annurism last may 9 he cant speak my question is that you can speak so clearly why you still have tracke tube in your neck? Is that forever
Thank you for your question. I have a trach tube because my breathing muscles are very weak. I can only breathe for a very short time on my own. I need to the trach tube to connect to a ventilator. The ventilator pushes air in and out of my lungs. I will have the trach tube forever.
@ follow up questions mam Is it possible that my husband will also be in tracke forever? He had annurism and his been in tracke for 7 months now he has cough and that makes him weak and cant tolerate if i close his tracke He catches his breath
Sister, i really cannot imagine myself living like that . I will be praying for you and hoping that the lord jesus will strengthen you & comfort you.. God bless Psalm 105:4: Seek the Lord and his strength; seek his presence continually
It’s crazy how suction doesn’t work for your trach. Maybe wider suction tubing would help the mucus go through so you don’t need to change the trach? I’m just curious
Hey! Can you use an inner cannula with your trach? I get a lot of mucus plugs but I just change the cannula. I've never tried to do it using the obturador but it's good to know, thanks.
Thank you for the question. I can use an inner cannula, but I do not do so because the inner cannula decreases the internal diameter of the tracheostomy tube. If I used an inner cannula, I would need to use a larger size tracheostomy tube. The larger size tracheostomy tube takes up a lot of room in my trachea, and then it is nearly impossible for me to speak because not enough air is able to flow up my trachea and through my vocal cords.
Maybe in future healthcare should be changing the care of at home or nursing home and hospital because patient with chronic diseases can go between hospital and homecare or nursing care who need supportive care level should be same level of care.
Bring your own nebulizer. That’s traumatizing having to remove your trach to remove a mucous plug. Thank you for sharing your knowledge and experience with us. You are amazing and the best teacher.
An inner cannula decreases the internal diameter of the tracheostomy tube. If I used an inner cannula, I would have to use a larger sized tracheostomy tube. A larger sized tracheostomy tube takes up more space in the airway. This prevents air from escaping up my airway and through the vocal cords. I tried using a larger sized tracheostomy tube with an inner cannula, but then I lost the ability to speak.
Monetizing creates a lot of legal complications. I would have to develop a limited liability corporation (LLC). I do not have the money to hire a legal expert to create the LLC. It would cost about $2,000. If monetized, this channel would only generate about $3 a week. (Right now, I receive $0 from TH-cam.)
@@LifewithaVent I am monetized on 2 TH-cam channels, and it is worth it. I don't know where you need an LLC, I just made a Google AdSense account, hooked it up to my TH-cam account once I qualified. And since then it's worked. You get about 400,000 views a months, so you would at least get $400 a month, if not more.
If you're having that much trouble keeping it clear switching to a shiley with a disposable inner cannula would make it a daily thing that's not a big deal. Your lungs are fine. Your issue is muscular and you can cough to clear it. You shouldn't let it gunk up like that. Edited to add: It's not the nebulizer. Get some saline vials, they can be pink or clear but it's just salt water. Squish in a couple cc's, it's sterile it won't hurt you, and suck it out. That will help take the mucus up before it gets thick like that.
My mom had a tracheostomy .... hers was all metal she could not get used to the plastic she had it for 14 yrs.. I would change her collars for her and youre right the home nebulizers are always so much better they were for her too... my moms trach was due to throat cancer she passed in 2023.... I hope you are feeling better fast .. sending hugs
Thank you so much for sharing some of your mom's story with me. I appreciate all the insight. I am sorry to hear of your mom's passing. May her memory be a blessing.
OMG !!! When You thake out the tub,, can not breath??? How can You speak? And please,, do not take out the tub is none one is with You!!!! I am sckare some Bad happened to You. I hope You are better now🙏🙏❤️🙏
Watching your video makes me remember how powerful human can be.❤❤ Plz read about Islam. It will change your life the way it did mine. Just rear about it. I promise your life would be a lot meaningful❤.
@LifewithaVent noticed from your past uploads that some hospital or staffs ddnt treated you well there are some private health care personnel that are so good in interacting and treating patients with special needs. Ones with an asian decent a private nurse or rt can help you with passion. Hope it can help you have a great day!
I'm so impressed with your ability to speak so genuine and with perfect articulation in very stresful situation. I hope you'll get better soon - thank you for being an inspiration!
Thank you. I appreciate your kindness.
I’m so glad I found you here. Your story is so similar to that of my best friend. She fell mysteriously ill while in medical school and, like you, ended up on a vent. We always wondered if she might have been poisoned by the chemicals she encountered in working on cadavers. She was never able to finish her studies, but she lived for about 30 years on the vent. She passed away about 10 years ago, at 53. She was a wonderful person. You remind me very much of her. I used to watch her clean out her tube. I’m a musician, not a medical person, so I would cringe the entire time, but she always got it done. Hope you get out of captivity soon! Janice always said the hospital was the enemy. 😊 Much love and prayers for you-feel better soon! ❤
Awwy poor u and your friend
@CHClark895
Thank you for sharing some of your friend's story with me. I am so sorry she went through so much. I cannot imagine everything she endured. May her memory be a blessing.
Thank you for all your kindness.
This lady blows my mind, she is seriously just incredible. I have so much respect and admiration for her.
Thank you. I appreciate your kindness.
Wow, I did not know you could take a trach tube out of yourself and put it back...your aptitude for medical procedures really shows here
Thank you.
Hope you feel better soon. Sorry you are struggling at the moment
I am doing ok. Thank you for asking.
The most educational yet distribing video ive seen. Not trying to be offensive!! I appreciate the video! ❤❤
You talking without the trach caught me totally off guard
Thank you so much for sharing. I appreciate your kindness.
Thank God you were able to clear that out. I don't know anything about nebulizers, tracheostomies, beyond what I've read/watched online. I'm blind, so I can't see the mucus. But I believe you, and could hear the huge change in your breathing after you cleared the mucus out!
You're able to breathe on your own without the vent for brief periods of time? Very interesting.
The relief in your voice was palpable.
Thank you for all the insight. Yes, I can breathe for a short time without my trachoestomy tube and ventilator. It is very tiring to breathe on my own, but it is possible for me to do so. I am glad you were able to hear the change in my breathing after clearing out the mucus. Thank you for all your kindness.
There are definitely others going through similar. You’re helping them to navigate this process.
I spent 30 years of my life abusing my lungs smoking cigarettes.
I thank God daily that I’m able to breathe.
Praying for good health, joy, and peace for you.
Thank you for sharing. I appreciate your insight.
You’re a very strong person and it’s inspiring to see how you manage things you’re going through so well and maintaining a positive attitude as well.
Thank you.
Thank you for sharing, it helps those of us who do not experience severe chronic illness have understanding and appreciation for what those that do go through, and have empathy.
Thank you. I appreciate your kindness.
I just wanted to tell you how remarkable I find you and your outlook on life. Your videos are helping more people than you realize. Youve clearly always wanted to help people and thats why you dedicated your life to medicine, and though life is extremely unfair and it took one dream from you, It also gave you another way to dedicate your life to helping others and youre doing exactly that. You should be extremely proud of yourself for this. Thank you for sharing your knowledge and also your strength with the world - your resilience lifts so many spirits, you certainly lift mine
Thank you so much. I really appreciate all the insight and all your kindness.
@@LifewithaVent thank YOU for the great content and for sharing your life with us!
Thank you for making these videos. Your breathing sounds alot better now compared to before. Were very happy that the hospital was able to help you. Have a nice week too.
Thank you so much. I appreciate your kindness. I hope you also have a nice week.
I have a degenerative condition (first showed up when I was 13 but most doctors don't know it exists so I managed to get a proper, official diagnosis only a few months ago as a 30-year-old; mind you- most people don't believe me when I say I have it as what's visible of it just makes my body uglier by the year and so people prefer judging me about things they don't know about me instead of believing they're being superficial about me due to my looks, but at least I do know why certain things have been happening to me and how to try and slow my condition down as much as possible) and a number of health issues. Maybe that's why but- I really like watching your videos; it feels like I'm connecting to somebody similar albeit with a completely different insight on dealing with health issues daily at a young age. Thank you for taking the time and being brave enough as to show us something most people would hide in fear others will ignore / overlook / misunderstand.
Thank you for sharing some of your story with me. i am sorry you have gone through so much. I cannot imagine everything you have endured. Thank you for all your kindness. I really appreciate it. All my best to you.
When you had to do that in your longer hospital video, you were so calm, cool and collected while recording, allowing us to see the process. Thank you!
Thank you so much. I appreciate your kindness.
I have some decades-long struggles in in my life that bring me great sadness. Watching your videos has inspired me to keep going in the face of crushing grief.
Like you, I must find a new purpose after all of the dreams I sacrificed for have died.
Thank you for inspiring me to not give up. Thank you for being an example to me.
Thank you so much for sharing. I am so glad my videos have inspired you. Thank you for all your kindness. All my best to you.
You truly amaze me. Wishing you all the best!!!!💙
Thank you.
I want to thank you for helping my son with health questions recently. His name is Joseph Carlisle. He is my son . He lost his battle with his life long illness yesterday. He had nemaline myopathy. You also helped me too Thank you so much ❤
Thank you so much for letting me. I really appreciate that. I am so sorry for your loss. I cannot imagine everything you must be going through. Sending lots of love and hugs. May his memory be a blessing.
You are an inspiration, best wishes and all vibes from Mexico
Thank you.
Hope you will feel better soon, we want to see your travel vlogs. Wishing you Swift recovery.
Thank you. You can see my travel vlogs on my other TH-cam channel. Here is the link to my latest travels: th-cam.com/play/PLTvbHDoOBqfXq3wMkQrFIZU1E-K1apgqF.html
I love your attitude, you are so cute.
Thank you.
Again , a very important thing to know how to do in this situation! 👍🏻👏🏻👏🏻👏🏻❤️🥰😇 Thank you for teaching us these tips and tricks to make these things less scary and doable! ☺️
Thank you. I appreciate your kindness.
Hey, just wanted to let you know. Thank You for sharing this. I hope you get well soon or there are new medical breakthroughs to let you live better. I'm a type 2 diabetic myself, but you are having a difficult time than me. But still, living a really positive life. I learnt a lot from you. I will remember you in my prayers.
Have a nice day, and remember so many people watch you and prays for you.
Thank you so much. I appreciate your kindness and your prayers.
You are unbelievably inspiring. God bless you!
Thank you.
I am absolutely amazed of your inner strength and your will to live.
Thank you.
This brings back so many memories my dad had ALS n had a trach n as a sophomore in high school I knew how to take care of it from changing it to suctioning
Thank you for sharing. That is so kind of you that you learned how to help your dad. I am sure he really appreciated all your help.
Hi, Thank You for your Informative and Inspirational Videos.
Thank you for watching.
Thinking of you and praying for you. I am so sorry for the troubles you are going through. Love and hugs headed your way!
Thank you so much. I appreciate your kindness.
You are such an inspiration and I am deeply impacted by your story. Thank you for your videos and for sharing your story with us!
Thank you. I appreciate your kindness.
You are amazing ❤️ Am so scared of needles and hospitals 😔.. I have immense phobia. God Bless You and hope i can get over my phobia ❤️
Thank you for sharing. I am so sorry to hear about your phobia. All my best to you.
Girl, what a fierce warrior 💕💪👑! Hope this is from your latest past hospitalization and not a current one.
Have an uneventful week 🤗
Yes, this was from last week's hospitalization. Thank you for all your kindness.
Great job, good clear video to show how it's done. You are doing a valuable service to those with trachs and ventilators. And they are getting very experienced and meticulous training in clear videos. Another plus is your medical background and attention to detail. God Bless Russ
Hi Russ. Thank you for all your kindness. I really appreciate it. I hope you are doing well.
L O L when isn't it an emergency situation!? L O L 🎉 I work on a long-term vent unit & totally in awe of your self sufficiency! I try so hard to get patients to become more active in their own care. I can't suction 5 people at once😂Encouraging education to self care is met with resistance 99% of the time. I'm not lazy! But who wants to wait for me!??? I just don't get it! They all have inlines too.... it's so simple .... but most love to just lay there drowning in fluid ..... it's baffling! I'm not talking new pts either.....some have been on the unit for 20 years! they'll do virtually nothing on their own... just bonkers & sad
Maybe it’s because if you don’t deal with medical issues and then suddenly become seriously disabled, it’s TERRIFYING!?!!? I’ve always been disabled, but when I received an ileostomy stoma last year, I couldn’t look at it for at least the first two or three months. I don’t have the dexterity to change it myself, but when my mom would change my bag, I would just shove my iPad in front of my face so I didn’t have to see it. I had colonic dysmotility prior to having my stoma surgery, and it had progressed so much faster than expected. So seeing my stoma was a constant reminder of the fact that my body didn’t wanna work. Maybe before you judge someone for their choices or attitude, take a second to put yourself in their shoes. I think that if we’d all walk a mile in other people’s shoes, we’d all get along so much better and be so much less critical.
@carolanderson5075 totally get it..... but after a decade, it's no longer fear .... I'm very empathetic & have remained bedside because I love it.... I love long term... what i don't love is when a pt refuses to do anything for themselves.... its like they create their own prison cell lying in a bed.... I'm not judging anyone.... I'm admiring those who overcome
@@kridswonderhowell4541 Thank you for sharing. Thank you for all that you do. Your patients are very fortunate to have you.
@@carolanderson5075 Thank you for sharing some of your story. I am so sorry you have been through so much. I cannot imagine everything you have endured. Thank you for sharing all your insight.
@LifewithaVent you're too kind! I do love my job & all the secretions LOL it's a team effort indeed with all my fabulous co workers!
Wow, it´s hard to watch at times but thank you for sharing. God bless you dear sister.
Thank you.
You are a huge inspiration! Thank you for your openness sharing your life, your positivity and beautiful smile! I hope you become big on youtube, I subscribed. Big fan! Keep it up ❤️
Thank you so much. I appreciate all your kindness and support. And thank you for subscribing!
Probably not the best time to watch your latest video whilst eating breakfast! Good job I have a strong stomach 🤣 glad your back fully on the ventilator so you can rest easy xxx
LOL! Thank you. I appreciate your kindness.
Love your personality and upbeat attitude. XxxX
Thank you.
Thank You for taking the time and effort on making this videos. We all Learn something new day after day... ❤🎉👏👏👏👍
Thank you so much. I appreciate your kindness.
You are an inspiration!
Thank you.
Thanks for another great video I am sure it will be very helpful to others. God Bless Russ 😊
Thank you so much. I hope you have a wonderful week!
Really fascinating thank you for taking the time to explain it even though it made you very exhausted to do so.
Your ability to speak with a trache is astounding. Is yours in just the right spot it's not impeding on your vocal cords?
Thank you for your wonderful words and education!
The tracheostomy tube is not impeding on my vocal cords. Thank you so much. I appreciate your kindness.
@LifewithaVent absolutely ❤️, I am just astounded as others I've heard have it they can't talk very well with it. Looking forward to more educational videos
Ana thank you for the great tip. I guess i have been lucky not to get a mucus plug near the end if my trach. I do gwr that thick sticky mucus towards the end of my tube. I take a long cotton tip qtip dip it in hydrigen perioxde stick it carefully down my trach tube swirl it around and take it out. It does bring up most of my mucus. Plus i do not have to take out my trach. Just another tip to try.
Thanks for sharing. I appreciate the insight.
Your A STAR!
Thank you.
Hi, I love your videos and I love your story.
I thought about you a few days ago when I researched how to qualify to do a Ted Talk. I thought about you because you have a compelling story and just based on the way you speak, I imagine you would be a great teacher... so I think you could give a compelling Ted Talk.
I googled it for myself, and watched a few TH-cam videos, and there are "local" chapters that host talks, usually centered around a theme.
Please look into this, for you may enjoy telling your story, making new contacts, and experiencing your community in a new way.
Take care.
Thank you so much! I appreciate the information. I will look into this. What a great idea! Thank you for all your kindness and for thinking of me.
Very difficult to watch, but appreciate your willingness to share all the details of your care
Thank you.
😢 I'm so VERY sorry you have to go through this 😢
Does it hurt when you put your Drake into your neck?
It looks like it would hurt😢
I watch your videos all the time but I don't always know due to I usually watch on my TV.
I'm living with lung Cancer
And many other Chronic illness.
I love your attitude your so Positive.
As my 95 year old Father says staying positive is the trick.
We are all stronger together 🦸♀️☮🦋
Thank you for sharing. No, it does not hurt to put the tracheostomy tube into my neck. I am sorry to hear you are living with lung cancer and many other chronic illnesses. Thank you for all your kindness.
Hope it gets better soon. Cool device right there. Have you ever been to genetic testing for any connective tissue disease(s) like EDS, Marfans, Mitochondrial disease?
Yes, I have had some genetic testing done. I have not had any genetic testing done for Marfan Syndrome or EDS.
I hope you feel better and are able to be discharged soon. Bummer about the suction not working there. Perhaps some sterile saline could help loosen the secretions. Not sure the catheter sizes they have available to you, but a larger one may have better results with increased pressure. When I did my clinicals years back we had a few to choose from with some offering a better seal depending on the patient. Your RT or pulmonologist might have some other options.
Thank you so much. I appreciate all the information. Thank you for all your kindness.
Thanks for making these videos! I'm glad your out of the hospital. Question, what does a ventilator do? Since you can breathe without the machine, can you go without it for a long time? Or is it something you need 24/7? I see you can push air around with your lungs without the machine attached. I am sorry if my question seems silly, I don't know how these machines work, they fascinate me though!
Thank you for your question. My ventilator pushes air in and out of my lungs. I can breathe for a short time without my ventilator, but soon my breathing muscles tire. If I do not connect back to my ventilator, my breathing muscles stop working, and I stop breathing. I stay connected to my ventilator for most of the day. I hope this answers your question.
@LifewithaVent That explains it, thanks! I really hope your lungs recover!
@@digitaljon1109 Thank you.
best wishes ❤🙏👍
Thank you.
I think your calling is greater than what you are doing. What about teaching physicians or other health care professionals. What about ministry? 🤗
Thank you so much. I appreciate the suggestions.
❤❤❤ u did good
Thank you.
Hope you feel better soon beautiful
Thank you.
@LifewithaVent you are so welcome 🤗 beautiful
@LifewithaVent how are you feeling
@@jamellehearn1389 I m feeling ok. Thank you for asking.
@LifewithaVent you are so welcome
You're such an inspiration! God bless you!
Are there any specific tests that could be taken to evaluate mitochondria productivity? I'd appreciate knowing more scientific information about mitochondria disease, early symptoms, and how to diagnose them. Sorry for the noob question, but is it possible to pump the human body with ATP (Adenosine triphosphate) and somehow filter out ADP and AMP? One more question: Is it possible to transplant some cells with good mitochondria so that they produce more ATP for all organs? One more question: is it possible for you to train and grow muscles? Are you doing some kind of training?
I'm an engineer, and I believe life support devices could be improved to become more advanced and easier to use. It is possible to invent non-clogging tubes (use a material that doesn't hold sticky things) or automatic unclogging tubes (use a rotating spring inside that pushes sticky things to the outside) or double tube (pressure and suction) that can be cleaned automatically based on pressure sensor and/or SpO2 level.
Less bulky, less weight, more features: combined humidifier, ventilator, and nebulizer, TPN pump with internal mixer of vitamins of your choice, and maybe some autonomous health monitoring systems. It would be very nice to hear your thoughts on devices and equipment!
P.S. One more question - does it make sense to combine ventilator and some oxygen concentrator, so it can automatically increase amount of oxygen in air for you when you are short of breath based on SpO2 and/or HR?
Thank you for all your questions. Buccal swabs can be done to test for mitochondrial function. Early symptoms vary vastly and are unique to each individual. Mitochondrial disease is diagnosed via muscle biopsy and/or genetic testing. (Some people are also diagnosed with Mitochondrial Disease based on symptom presentation and family history.) I am not sure if pumping a person full of ATP and filtering out ADP/AMP will work. ADP is needed in the electron transport chain. Without ADP, the electron transport chain will not move forward, and oxygen (which will break down into oxygen free radicals) will build up in the body.
It is possible to transplant good mitochondria into the body. That subject is the basis for gene therapy. They take a person's bad mitochondria out of the cell and replace it with good mitochondria. The hope is to spread good mitochondria to the body. However, the biggest issue with that therapy is there is no guarantee the new good mitochondria will not also become diseased.
Yes, it is possible to train and grow muscles. There are physical therapy programs which do this. However, it can bad consequences. A friend of mine was in one of these therapy programs. The stress the muscle training program created on her body caused her to have a couple of strokes. She ended up passing away. (Lactic acid is often high in people with mitochondrial disease. Doing muscle training often increases the lactic acid in the body which in turn can cause very serious health complications.) Gentle aerobic exercise is generally preferred over more intense muscle training (which tends to be anaerobic.) I try to do some aerobic exercise a few times a week.
That is great to hear about all the advances to support devices. The tracheostomy tubes sound very fascinating. There is a device which has multiple functions on it--a ventilator, nebulizer, cough assist, suction and oxygen. (It is called the VOCSN Multi-function ventilator device.) There are two issues with this device. One, is it very hard to get insurance to pay for the device because the person needs documentation that all five options are medically necessary. (Not all patients on ventilators use all those devices.) And two, if one machine breaks down, the entire ventilator system has to be sent in to be fixed.
A ventilator with an oxygen concentration will only work for people who have documentation that oxygen is medically necessary. (I do not use oxygen with my ventilator.) That sounds like a great device to automatically increase the amount of oxygen in the air, but it may not be something insurance companies approve of and may be limited to use in a hospital or long-term care facility. (Insurance approval is often a defining factor for many home devices. For example, even though I have a neuromusuclar disease and a cough assist machine would benefit me, I was denied a cough assist machine by my insurance because I have not been in the hospital enough times in the last six months with pneumonia.)
@@LifewithaVent Thanks a lot for such detailed answers! 🙂
Thank you !
Thank you for watching.
If you are in the hospital, I am wondering why you have to do this procedure yourself? Can’t they do it for you-or do you feel safer doing it yourself?
Thank you for your question. The only thing the hospital tends to do if there is mucus in the tracheostomy tube is suction the tracheostomy tube. I know from past experiences, suctioning will not clear the mucus if it is clogging my tracheostomy tube. The mucus will be too thick and too sticky to suction. My former pulmonologist told me to use an obturator to clear the tracheostomy tube. That was a technique she found to be very useful and effective.
Even though I am in the hospital, I clear my own tracheostomy tube because most respiratory therapists at the hospital only feel comfortable suctioning the tracheostomy tube. They will not take out the tracheostomy tube and use the obturator to clear the mucus plug.
@ Oh thanks so much! That makes a lot of sense!
Thank you for the video 🥰🙏
Thank you for watching.
God bless you 🙏
Thank you.
You are amazing!
Thank you.
That looks really scary. I hope you feel better soon. I'm sorry that you're struggling at the moment. In a little bit of a medical update on me. I was getting a lot of pain in my feet when I was walking long distance due to my fasciitis. So I just saw my doctor about getting approved to get a power chair. Because I can't work anymore do the fact that I can't stand on my feet no more. I really enjoy the videos and learning about your ventilator. Sending 🥄 spoons and healing hugs from a chronic illness warrior 🪖 to u ❤
Thank you so much for sharing. I am so sorry to hear about all the pain in your feet when walking long distances. I hope all goes well with getting approved to get a power chair. Thank you for all your kindness. I appreciate all the spoons and healing hugs. All my best to you.
Hope u feeling better. Did you experienced any neck pain or swelling in neck with a clogged tube.
Thank you for your kindness. No, I did not feel any neck pain or swelling in my neck.
Wow i wojld hace been taught this was never even mentioned about that thing & getting out a plug i dated a lady & she had a trach & vent she did her own training but i was never trained this she also had a brother with the same thing as her & i worked for him & mever was trained either on this & this was mecer mentioned years later i was not workijg for him but he had nurses that worled for him 24/7
One night he got a plug & no one could suction it out & he sadly emded up passing away i beleive the thing u just showed comes with the new trach but never had anyone mentioned unwould use it to get the plug out wow
I miss my friend he was 50 when he passed away
Thank you so much for sharing. I am so sorry to hear that happened to your friend. How very sad. May his memory be a blessing.
Hi there! You're remarkably brave... you're such a badass! Greetings from Mexico.
Hello. Thank you for your kindness.
Hello! I dont know if you have mentioned this in another video but, what type of mitochondrial disease do you have? Because you didnt develop syntoms until your 20s. Thanks for sharing your story 😊
Thank you for your question. My Mitochondrial Disease does not have a name. It is a series of gene mutations. My first symptoms were noticed when I was three years old, and the symptoms continued throughout my childhood but were either misdiagnosed or brushed aside.
Mam inreally admired you my husband has a tracheostomy tube dure to annurism last may 9 he cant speak my question is that you can speak so clearly why you still have tracke tube in your neck? Is that forever
Thank you for your question. I have a trach tube because my breathing muscles are very weak. I can only breathe for a very short time on my own. I need to the trach tube to connect to a ventilator. The ventilator pushes air in and out of my lungs. I will have the trach tube forever.
@ follow up questions mam
Is it possible that my husband will also be in tracke forever? He had annurism and his been in tracke for 7 months now he has cough and that makes him weak and cant tolerate if i close his tracke
He catches his breath
@@MikiKato-zr4sm That is a good question. I do not know. Please ask his doctor. His doctor should be able to answer this question.
Sister, i really cannot imagine myself living like that . I will be praying for you and hoping that the lord jesus will strengthen you & comfort you.. God bless
Psalm 105:4: Seek the Lord and his strength; seek his presence continually
Thank you.
Hello love, I was wondering if it hurt when you put it in?
Hello. No, it does not hurt.
It’s crazy how suction doesn’t work for your trach. Maybe wider suction tubing would help the mucus go through so you don’t need to change the trach? I’m just curious
Thank you for the information. I will ask about getting a wider suction catheter.
I'm not sure how u can talk Without a specific speech valve
Thank you. It has taken a lot of practice.
Hey! Can you use an inner cannula with your trach? I get a lot of mucus plugs but I just change the cannula. I've never tried to do it using the obturador but it's good to know, thanks.
Thank you for the question. I can use an inner cannula, but I do not do so because the inner cannula decreases the internal diameter of the tracheostomy tube. If I used an inner cannula, I would need to use a larger size tracheostomy tube. The larger size tracheostomy tube takes up a lot of room in my trachea, and then it is nearly impossible for me to speak because not enough air is able to flow up my trachea and through my vocal cords.
@@LifewithaVent That makes sense. Thanks for explaining!
Yikes! I had a tracheostomy 46 years ago temporarily. The dreaded mucous plugs!
Thank you for sharing.
I literally SPRAY mucus as thick as that every day. It's my very first time seeing mucus that thick in another person.
Thank you for sharing. I appreciate the insight.
That looks scary
Thank you for watching.
@LifewithaVent you are welcome am wearing my vent it feels weird how did you get used to it
Maybe in future healthcare should be changing the care of at home or nursing home and hospital because patient with chronic diseases can go between hospital and homecare or nursing care who need supportive care level should be same level of care.
Thank you for sharing. I appreciate the insight.
Every thing u have to clean utube and change u tube it doesn't hurt at all and u was born with it
Thank you for sharing.
Why don’t you use a couch assist device to help get the mucus
That is a great idea. I will ask my doctor about it.
I did my cna clinical where a young man was in a coma with a trach tube and laying flat on his back. He would get clogged.
Thank you for sharing.
Hey Doc, Thanks for the info. You’re helping me get back into nursing. URDB. 🙏 Praying for healthy mitochondria.
Thank you for sharing. I appreciate your kindness. I hope everything goes well for you.
❤❤❤
Thank you.
🙏🏾🙏🏾🙏🏾
Thank you.
Bring your own nebulizer. That’s traumatizing having to remove your trach to remove a mucous plug. Thank you for sharing your knowledge and experience with us. You are amazing and the best teacher.
That is a great idea. Thank you. I appreciate your kindness.
How low can you desat & still function? I bet pretty low! So impressive 🎉🎉🎉🎉🎉
Thank you. I appreciate your kindness.
why don't you use an inner canula so that when mucus blocks your airway you can remove it from the inner canula..
An inner cannula decreases the internal diameter of the tracheostomy tube. If I used an inner cannula, I would have to use a larger sized tracheostomy tube. A larger sized tracheostomy tube takes up more space in the airway. This prevents air from escaping up my airway and through the vocal cords. I tried using a larger sized tracheostomy tube with an inner cannula, but then I lost the ability to speak.
I am here for you if you need someone to talk to
Thank you. I appreciate your kindness.
If you need help breathing did you try just oxygen before you got your tracheotomy
No, I did not try oxygen before getting my tracheostomy tube.
Sis when your channel is going to monetize??
Monetizing creates a lot of legal complications. I would have to develop a limited liability corporation (LLC). I do not have the money to hire a legal expert to create the LLC. It would cost about $2,000. If monetized, this channel would only generate about $3 a week. (Right now, I receive $0 from TH-cam.)
Sister 3$ a week is nothing 😢
Please monetize it ...
I would like for you to be financially strong
Thank you for your suggestion.
@@LifewithaVent I am monetized on 2 TH-cam channels, and it is worth it. I don't know where you need an LLC, I just made a Google AdSense account, hooked it up to my TH-cam account once I qualified. And since then it's worked.
You get about 400,000 views a months, so you would at least get $400 a month, if not more.
@LifewithaVent That's Not Nearly As Colorful As Some Of The Mucus Plugs I've Had Thankfully
Thank you for sharing.
If you're having that much trouble keeping it clear switching to a shiley with a disposable inner cannula would make it a daily thing that's not a big deal. Your lungs are fine. Your issue is muscular and you can cough to clear it. You shouldn't let it gunk up like that.
Edited to add: It's not the nebulizer. Get some saline vials, they can be pink or clear but it's just salt water. Squish in a couple cc's, it's sterile it won't hurt you, and suck it out. That will help take the mucus up before it gets thick like that.
Thank you for sharing. I appreciate the insight.
💙💙💨
Thank you.
My mom had a tracheostomy .... hers was all metal she could not get used to the plastic she had it for 14 yrs.. I would change her collars for her and youre right the home nebulizers are always so much better they were for her too... my moms trach was due to throat cancer she passed in 2023.... I hope you are feeling better fast .. sending hugs
Thank you so much for sharing some of your mom's story with me. I appreciate all the insight. I am sorry to hear of your mom's passing. May her memory be a blessing.
My dads was metal as well
Hey Chrissy, I'm so sorry for your loss, mines too died due to throat cancer 2023. I wish you the best ! Sincerely
@@HamdushMohamed1 Thank you so much
Informative..yet gross...LOL
Thank you for sharing.
OMG !!! When You thake out the tub,, can not breath??? How can You speak? And please,, do not take out the tub is none one is with You!!!! I am sckare some Bad happened to You. I hope You are better now🙏🙏❤️🙏
Thank you for sharing. I can breathe for a short time without my tracheostomy tube. Thank you for all the insight. All my best to you.
@LifewithaVent ❤️❤️❤️🙏
how much did your insurance bill you for the procedure. lol sarcasm.
LOL!
Watching your video makes me remember how powerful human can be.❤❤
Plz read about Islam. It will change your life the way it did mine.
Just rear about it. I promise your life would be a lot meaningful❤.
Thank you. I appreciate your kindness.
Hope you recover soon! 🫶
Can I ask a question tho, did you insert the obturator on top of the inner cannula?
I do not use an inner cannula. Thank you for your kindness.
@LifewithaVent noticed from your past uploads that some hospital or staffs ddnt treated you well there are some private health care personnel that are so good in interacting and treating patients with special needs. Ones with an asian decent a private nurse or rt can help you with passion. Hope it can help you have a great day!
@@ShezoWrock87 Thank you so much. I appreciate the information. All my best to you.
Does it hurt when you take it out and put it in?
@LifewithaVent
You feeling better ?
No, it does not hurt to take it out and put it back in. Yes, I am feeling better. Thank you for asking.
I'm wishing you well and happy thoughts. 🫶💯
Thank you.