Because of you ,I had the courage to learn everything I could from the hospital to bring my husband home from hospital for the last year of his life.He couldn't do anything for himself.Your an amazing inspiring young woman. I Have messaged you before ,and my doctor agreeded with the medication you suggested.I will always be grateful,that my daughter found you chanel.
Thank you so much. I greatly appreciate your message. Thank you for all your kindness. I remember our conversation. I am so glad the doctor agreed to give him the medication. I am very sorry to hear of your husband's passing. My condolences to you and your family. May his memory be a blessing.
You're an inspiration. Thank you for sharing your story. Also, God loves you. Many people experience depression and disappointment due to unfulfilled dreams, but this life isn't about chasing careers and dreams. The meaning of life is to love God and love the people around you. Of course, it's challenging to do, but love is sacrificial in nature. You sharing these videos is helping a lot of people. Keep moving forward, and put your trust in Jesus. He will carry you through this difficult life journey. I'm praying for you and your family. Hope you have an amazing day! 😊
I really appreciate your channel. I’m a respiratory therapist in a long term vent facility. It’s interesting and informative getting your perspective. It gives me a sense of how some of our patients feel or what they are going through but are unable to express.
I literally have my med school,exams going on and was thinking it was too hard. It’s divine intervention that i found your channel. I just knowww you will do great things ahead ❤
Comment at the end of the video. This should be part of an educational program for people with tracheostomies. You have really demonstrated that life can be good + this is how. It would be so good for people with tracheostomies to see this.
You are super smart. Have you ever considered becoming an online consultant? I think medical device companies would value your opinions on their products. They organise advisory boards with healthcare professionals as well as patient advocacy groups (aka patients themselves)
Thank you for your video. This is UA-cam at its finest: informative, interesting and inspiring. Well done. Although it doesn’t compare to your experience, I had a tracheostomy when I was 2 years old. I’m now 73. I’m a male, living in Western Australia. The diagnosis then (such as it was) was “severe croup”/“suspected diphtheria”. The procedure was done urgently by a junior doctor, and was redone later by a more senior surgeon. As I result, I have scar tissue externally and internally. I have not had many side effects from the procedure, but my voice gets weak quickly if I talk too much (more so now that I’m older). Perhaps that’s not a bad thing! I wish you all the best for the future. Your positivity is wonderful to watch (I have seen a few of your videos), but I don’t doubt there are times when it fails you. I’m sure making videos helps you overcome those times. So try to keep in mind that you are making a difference to those of us who are fortunate enough to have found your channel. Your smile and good humour elevates us. Take care.
Thank you for sharing some of your story with me. I am sorry you went through so much. I cannot imagine everything you endured. Thank you for all your kindness. I really appreciate it. All my best to you.
Thank you for being there to give me hope, i am not javing exactly the same issues but my life is also not the very best, seeing how you have faced so much worse and still here fighting and doing so much, i will never run away from my problems and always fight until i am dead
Girl you're so funny and smart! Thank you for showing us and taking the time to teach us. You're amazing! It does scare me when you have any bit of trouble but i know you're so well prepared ❤❤
Your amazing. I'm an RN in intensive care in Australia and I love your videos I love hearing all of this explained by someone who actually lives with this. Very educational. Thank you for your honesty and sharing
Good stuff!!! The only thing I don’t like about the speaking valves are how they jut out so far, and how I’ll honk like a goose through it at the most inconvenient time. Only had my trach since the end of August, so still very self conscious about it and hate it when people stare.
I'm so sorry that people suck a lot of the time. What would be the best thing for you? If you could actually chose how we treated you. Would we talk to you about it or would it be better if it just wasn't mentioned? I know we wouldn't stare because nobody likes that. I'm not here because I'm ill (I am very very lucky) but I want to be better and I want to know how to make people feel more comfortable so if you feel like you could give me some insight into how I could do better, that would be great 😊 I know not to stare obviously but I could do a lot better than that.
You're such a beautiful, inspiring person. I've watched several of your videos now, and I have no doubt that you were put on this path so you could help many, many more people than you ever could have being a "conventional" doctor. You are indeed a doctor...just a different kind. Have an awesome week!
This video was very informative and educational. My daughter suffers with the results of a traumatic brain injury. She is no longer on a ventilator but still has the tracheostomy. We were hoping to try a speaking valve to see if she might utter some words. Thank you.
Your videos are so great to watch because you're very informed and explain things clearly, and you have a great sense of humor! I don't have a vent, but I am autistic, and I'd never be able to get through life without just laughing at my weirdness haha. Thanks for sharing with us!
You’re such an amazing and genuine person-I truly think you’re incredible! May you always be blessed. My own medical challenges pale in comparison to yours, but having dealt with numerous medical issues myself, I can’t imagine mustering the level of strength you have
You are truly talented in explaining things and making them understandable. May God give you strength for all this! “Therefore, Encourage one another and build one another up, just as you also are doing.” 1 Thessalonians 5:11 I wish you the very best!
Just had your channel recommended to me by UA-cam. Im glad! Subscribed :) I can't believe your spirit being in such a circumstance. It's very inspiring. I hope you're doing ok today. Thanks for sharing your life and story
You're looking strong today, like you're healthier. I hope you're feeling stronger and you are able to do some things that you enjoy. Health issues make you vulnerable, and that's an additional hard thing to deal with besides the Health problems. Thank you for your courage to share what you're dealing with and for your magnanimous spirit. God bless you.
Your videos are so well I learned a lot from you. Im going to find out Monday if my powerchair what's a proof through my insurance and then after that they will set up delivery for it and they'll teach me how to drive it iandmaintenance it. I already chose the color that I'm going to get I want it to be blue. So I will update you when I know more. Sending 🥄 spoons and hugs ❤
Thank you so much for the update. I hope all goes well with the powerchair. Blue, what a pretty color. Thank you for all your kindness, spoons and hugs.
I'm usually a fairly normal and healthy scientist. However, recently, I had an accident on my mountain bike. I had a head injury and a broken finger. As a result, I have wounds on my head. They recommended using white petroleum jelly, at the hospital, in order to maintain mousture and to.protect the wound. I didn't really want to use it, because bacteria feed on oils. The lubricant in this video reminded me of the jelly.
@RustyShakleford1 The same way that bacteria feed on oils to give people acne. The type of bacteria from certain types of cheese. They're called propionic bacteria.
@@Christopher-b1p interesting thank you very much please share any more info I'm going to research into it. I think it could be a possible cure to mycobacterium
@RustyShakleford1 Thanks for reply. I did see.one paper had a 2 mm zone of inhibition with Vaseline and Pseudomonas A. Mycobacterium are a.huge problem. Particularly, because women can carry them. i wonder how many experimental results have been ruined by them.
Firstly, thank you. That was really interesting. I am a little worried that you can't get your tube back in though. Maybe there's been some scarring and that is affecting it? I'm really just guessing here sorry, I am here to learn obviously 😊 your hair looks so pretty today by the way.
Thank you. I appreciate the insight and concern. I have been having issues getting my trach tube back in when inserting it. I am going to talk to my doctor about this. As you suggested, it is most likely scar tissue which is causing the issues. Thank you for all your kindness.
My late husband, who was a quadriplegic, had a trach AND had a red cap on it so he could speak. When the red cap was NOT on the trach, Perry, my late husband, could not speak.
It is best to not get lubricant jelly into the lungs, but if lubricant jelly goes down into the lungs, it will most likely cause the person to cough (if the person still has a cough reflex). If the person cannot cough, some people suction after doing a trach exchange to try to prevent lubricant jelly from going down into the lungs. The lubricant jelly I use is water based and will be absorbed by the body if it remains in the lungs.
Hi. He had a laryanectomy. Probably voice box removal. Cannot speak, and nose no longer works. Person breathes through hole in the neck/ stoma. Some people use valves to speak, others prefer to use no valves to speak.
Thank you for your question. No, changing the tracheosotmy tube does not give me a gag reflex. It does usually make me cough because the tracheostomy tube tickles my airway when it is inserted.
Great questions. I think exercise does help my lung function. At the moment, I still have the same primary care doctor. I am trying to get in to see a hematologist for my blood clots.
When my uncle had his tracheostomy, he lost the ability to talk. He was devastated because it was the one thing he could do because he had so much paralysis. He had post polio syndrome and had lived his entire adult life with one functioning lung.
Thank you for sharing some of your uncle's story with me. I am sorry he went through so much. I cannot imagine everything he endured. How heart breaking.
No, I did not receive any speech therapy services. I was sent home from the hospital and was told I would most likely never speak again. I took it upon myself to figure out how to speak.
@@LifewithaVent that is horrible!!! they absolutely shouldn't have told you that. speech after trach placement is totally achievable and you're living proof of it. just showed your video to a group of SLP grad students. your videos are so informative
My ventilator has a battery back-up. It can run on battery for about 8 hours. For additional information on what I would do if the power went out, please watch the following video: ua-cam.com/video/aKbmjBbnyec/v-deo.html
@LifewithaVent As an aside, there may be brain cysts that are caused by it. But, this area may need further research. Particularly near the third ventricle in the brain. These cysts are mucin like. Perhaps similar to what the bacteria produces.
@@LifewithaVent você teve algum dano no nervo vago devido a Ehlers-danlos? Se teve, já tentou utilizar acupuntura? Desculpe ter colocado em português e obrigada por responder ❤ meus sintomas não são tão graves quanto os seus, começaram após um c0vid e também passei por um período de muito estresse, tudo isso junto foi uma bomba que deu início aos sintomas mais graves , tive choque anafilatico, dores horríveis, gastroparesia...
@@tarotica82 Lamento saber dos seus desafios de saúde. Não tenho certeza se tive algum dano ao meu nervo vago. Eu não tentei acupuntura. Você já tentou acupuntura?
@@LifewithaVent sim!!! Acupuntura ajudou muito, principalmente em relação à gastroparesia. A acupuntura ajudou a diminuir as dores também. Também estou utilizando suplementos e senti muita melhora, são eles: quercetina( ajuda a modular a histamina), urtiga, colageno, condroitina, vit c, reverastrol, NAD, lisina... no Brasil não temos quase nenhuma pesquisa sobre a síndrome de Ehlers-danlos. Estimo melhoras, é possível ❤
Hey! Question if you are free. When you put the tube back in, is there any structures in your throat that stop it? I kind of assumed that it would be as easy as it was going in as it was out but that didn't seem to be the case.
Thank you for the question. It usually is very easy to put the trach tube back in. However, the last few times, I have had some difficulties. There are no structures which will inhibit it from going in. However, over time, scar tissue can build up at the tracheostomy site. Scar tissue can make it more difficult to insert the trach tube. I will ask my pumlomonologist the next time I see him about the issue I am having reinserting my trach tube.
I love your videos, did you have your cuff completely deflated? I turn the title volume up to 4 7 5 normally it's set at 400.cuff completely deflated so my wife can talk fairly normally. My wife uses the Philips Trilogy Evo Havent deflated the cuff using this new machine.
You would be an amazing doctor ❤seriously you should go finish medical school I believe you would be an amazing amazing doctor !!!!! You could specialize in respiratory ❤bless you
I have my left lung collapse due to typhoid in 2020 so I also go through little bit similar challenges like coughing while talking, breathing problems and getting tired easily, getting used to it day by day.
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. All my best to you.
Please please please look into the studies on reversing mitochondrial disease by bathing your brain in ketones. TPN is the worst thing you can do for your condition. I'm a previous Navy nurse and cancer patient having researched the keto/carnivore diet the last 5 years.
Thank you for sharing. I appreciate the information. May I ask, what would you suggest I use to sustain my nutritional needs? Is there something I can use intravenously instead of TPN?
And you do all this in your BATHROOM that is filthy and has mold spores flying around. Even when I was healthier I couldn't breathe properly and felt faint after an hour in the shower because of the toxic vapors.
I am sorry your bathroom has mold spores flying around. When I shower, I take short 5 minute showers. The water is set to 90 degrees Fahrenheit. A powerful exhaust fan runs which sucks up the air in the shower and disseminates it into the atmosphere outside the home. There is also a dehumidifier which runs year round and also an air purifier. There is no mold in the bathroom. Does the bathroom look filthy on the video? I ask because the bathroom is professionally cleaned once a week. I think the cleaning crew does a great job, but if you think it looks dirty, please let me know.
Hi, I would like to know if you have a support system of relatives and friends to help you… if you feel comfortable sharing this with us. What are your greatest needs, and what ministers to you? I want to be aware of how I can help others.❤
Thank you for the question. Yes, I have a support system of relatives and friends. They help out when they can. A friend of mine will call when she is at the grocery store and ask if she can pick me up anything. Others will visit me in the hospital or will visit when I am home. Some send notes and cards. One friend from time to time gives me a small bouquet of flowers. Mostly, it is just nice to know people care. If you want to help others, send them a note in the mail, an email, a text message or call them on the phone. Find out if the person needs anything. If calling, be prepared to spend 10-15 minutes (or more) talking to the person.
You should get paid for advising people on the use of a ventilator and all the ins and outs of the necessary equipment and monitors involved and all of the helpful information & advice that you can provide people with and work right in the comfort of your own home and obviously only when you’re feeling good enough to do so or be paid to advertise the equipment and supplies and show others exactly how to use them and which products are best… get paid for your expertise 🤑 why not ⁉️
You have lost so much, it reminds me of the story of Job in the Bible. You many not see healing on this side of eternity but I pray that if you haven't already, that you do develop a relationship with Jesus Christ and make him first in your life so that you can see healing on the other side.
Because of you ,I had the courage to learn everything I could from the hospital to bring my husband home from hospital for the last year of his life.He couldn't do anything for himself.Your an amazing inspiring young woman. I Have messaged you before ,and my doctor agreeded with the medication you suggested.I will always be grateful,that my daughter found you chanel.
Thank you so much. I greatly appreciate your message. Thank you for all your kindness. I remember our conversation. I am so glad the doctor agreed to give him the medication. I am very sorry to hear of your husband's passing. My condolences to you and your family. May his memory be a blessing.
wow, you have such a clear voice ❤👍
Thank you. I appreciate your kindness.
Your videos are so well done, simple and easy to listen too. I feel honored to learn about your routine.
Thank you. I appreciate your kindness.
Thank you. I have challenges in life that can't be seen with the eyes. You are such a brave and beautiful soul. It gives me comfort.
Thank you so much. I am sorry you have challenges in life, but I am happy my videos give you comfort.
You're an inspiration. Thank you for sharing your story. Also, God loves you. Many people experience depression and disappointment due to unfulfilled dreams, but this life isn't about chasing careers and dreams. The meaning of life is to love God and love the people around you. Of course, it's challenging to do, but love is sacrificial in nature. You sharing these videos is helping a lot of people. Keep moving forward, and put your trust in Jesus. He will carry you through this difficult life journey. I'm praying for you and your family. Hope you have an amazing day! 😊
Thank you so much. I appreciate all your kindness and insight. Thank you also for all the prayers. They are really appreciated.
I really appreciate your channel. I’m a respiratory therapist in a long term vent facility. It’s interesting and informative getting your perspective. It gives me a sense of how some of our patients feel or what they are going through but are unable to express.
Thank you. I appreciate your kindness and insight.
Girl, what a freaking warrior 💪💕 RESPECT!
I know this vis will be useful to others. Thank you!
Thank you. I appreciate your kindness.
I literally have my med school,exams going on and was thinking it was too hard. It’s divine intervention that i found your channel. I just knowww you will do great things ahead ❤
Thank you so much. I appreciate your kindness. I hope all goes well with your exams.
Comment at the end of the video. This should be part of an educational program for people with tracheostomies. You have really demonstrated that life can be good + this is how. It would be so good for people with tracheostomies to see this.
I was a nurse for 20 years and certified as a education specialist.
Thank you so much. I appreciate your kindness.
Thank you for sharing the important aspects of your life with a tracheostomy tube ❤😊
Thank you for watching.
I love your sense of humor.
Thank you.
You are super smart. Have you ever considered becoming an online consultant? I think medical device companies would value your opinions on their products. They organise advisory boards with healthcare professionals as well as patient advocacy groups (aka patients themselves)
Thank you so much. I appreciate the suggestion.
Love your videos. You are always intelligent. I wish the best for you.
Thank you. I appreciate your kindness.
I love your smiling😊 whenever I feel I'm in darkness, your existence console me! thank u for amazing videos!
Thank you for your kindness.
Thank you for your video. This is UA-cam at its finest: informative, interesting and inspiring. Well done. Although it doesn’t compare to your experience, I had a tracheostomy when I was 2 years old. I’m now 73. I’m a male, living in Western Australia. The diagnosis then (such as it was) was “severe croup”/“suspected diphtheria”. The procedure was done urgently by a junior doctor, and was redone later by a more senior surgeon. As I result, I have scar tissue externally and internally. I have not had many side effects from the procedure, but my voice gets weak quickly if I talk too much (more so now that I’m older). Perhaps that’s not a bad thing! I wish you all the best for the future. Your positivity is wonderful to watch (I have seen a few of your videos), but I don’t doubt there are times when it fails you. I’m sure making videos helps you overcome those times. So try to keep in mind that you are making a difference to those of us who are fortunate enough to have found your channel. Your smile and good humour elevates us. Take care.
Thank you for sharing some of your story with me. I am sorry you went through so much. I cannot imagine everything you endured. Thank you for all your kindness. I really appreciate it. All my best to you.
Thank you 🌹
Thank you for watching.
That is amazing how you to that amazing young lady God bless take care
Thank you.
Thank you for being there to give me hope, i am not javing exactly the same issues but my life is also not the very best, seeing how you have faced so much worse and still here fighting and doing so much, i will never run away from my problems and always fight until i am dead
Thank you for sharing. I am glad my channel has given you hope. All my best to you.
You so brave and so positive. Love it !!
Thank you.
You’re a warrior! Love your videos. You are truly inspirational ❤
Thank you. I appreciate your kindness.
Girl you're so funny and smart! Thank you for showing us and taking the time to teach us. You're amazing! It does scare me when you have any bit of trouble but i know you're so well prepared ❤❤
Thank you. I appreciate your kindness.
Thank you for sharing and teaching about this.
Thank you. I appreciate your kindness.
❤thanks for sharing this! Teaching people more than some physicians can teach.
Thank you for your kindness.
Your amazing. I'm an RN in intensive care in Australia and I love your videos I love hearing all of this explained by someone who actually lives with this. Very educational. Thank you for your honesty and sharing
Thank you so much. I appreciate your kindness.
Good stuff!!!
The only thing I don’t like about the speaking valves are how they jut out so far, and how I’ll honk like a goose through it at the most inconvenient time. Only had my trach since the end of August, so still very self conscious about it and hate it when people stare.
Thank you so much for sharing. That is really great insight. I am sorry people stare. All my best to you.
I'm so sorry that people suck a lot of the time. What would be the best thing for you? If you could actually chose how we treated you. Would we talk to you about it or would it be better if it just wasn't mentioned? I know we wouldn't stare because nobody likes that. I'm not here because I'm ill (I am very very lucky) but I want to be better and I want to know how to make people feel more comfortable so if you feel like you could give me some insight into how I could do better, that would be great 😊 I know not to stare obviously but I could do a lot better than that.
You're such a beautiful, inspiring person. I've watched several of your videos now, and I have no doubt that you were put on this path so you could help many, many more people than you ever could have being a "conventional" doctor. You are indeed a doctor...just a different kind. Have an awesome week!
Thank you so much. I appreciate all your kindness.
This video was very informative and educational. My daughter suffers with the results of a traumatic brain injury. She is no longer on a ventilator but still has the tracheostomy. We were hoping to try a speaking valve to see if she might utter some words. Thank you.
Thank you for sharing. I hope all goes well for your daughter. Thank you for your kindness.
I really love ur videos ! I look forward to watching everytime u post ❤thanks for being so cool and thanks for teaching so many people 😊
Thank you. I appreciate your kindness.
God bless you and I pray for what you're going through.
Thank you so much.
Your videos are so great to watch because you're very informed and explain things clearly, and you have a great sense of humor! I don't have a vent, but I am autistic, and I'd never be able to get through life without just laughing at my weirdness haha. Thanks for sharing with us!
Thank you. I appreciate the insight and all your kindness.
You’re such an amazing and genuine person-I truly think you’re incredible! May you always be blessed. My own medical challenges pale in comparison to yours, but having dealt with numerous medical issues myself, I can’t imagine mustering the level of strength you have
Thank you. I appreciate your kindness.
You are truly talented in explaining things and making them understandable. May God give you strength for all this!
“Therefore, Encourage one another and build one another up, just as you also are doing.” 1 Thessalonians 5:11
I wish you the very best!
Thank you so much. I appreciate your kindness.
Great video! Very informative! I learned a lot. ❤️
Thank you.
Maa Shaa Allah 🎉
Allah has given you power to fight like a brave person . May Allah bless you 🎉. AMEEN
Thank you.
Incredible video. ✊
Thank you.
Just had your channel recommended to me by UA-cam. Im glad! Subscribed :) I can't believe your spirit being in such a circumstance. It's very inspiring. I hope you're doing ok today. Thanks for sharing your life and story
Thank you so much. I appreciate your kindness. And thank you for subscribing!
Your positivity is awesome!! 👍
Thank you.
Incredibly interesting to see, thank you for sharing ❤
Thank you for your kindness.
You look good doctor!
Thank you.
seeing you smile is very conforting
Thank you.
You're looking strong today, like you're healthier. I hope you're feeling stronger and you are able to do some things that you enjoy. Health issues make you vulnerable, and that's an additional hard thing to deal with besides the Health problems. Thank you for your courage to share what you're dealing with and for your magnanimous spirit. God bless you.
Thank you. I appreciate your kindness.
Your videos are so well I learned a lot from you. Im going to find out Monday if my powerchair what's a proof through my insurance and then after that they will set up delivery for it and they'll teach me how to drive it iandmaintenance it. I already chose the color that I'm going to get I want it to be blue. So I will update you when I know more. Sending 🥄 spoons and hugs ❤
What a beautiful attitude.
Thank you so much for the update. I hope all goes well with the powerchair. Blue, what a pretty color. Thank you for all your kindness, spoons and hugs.
I'm usually a fairly normal and healthy scientist. However, recently, I had an accident on my mountain bike. I had a head injury and a broken finger. As a result, I have wounds on my head. They recommended using white petroleum jelly, at the hospital, in order to maintain mousture and to.protect the wound. I didn't really want to use it, because bacteria feed on oils. The lubricant in this video reminded me of the jelly.
How in the heck can bacteria feed on oil? Lol never heard of bacteria on petroleum jelly
@RustyShakleford1 The same way that bacteria feed on oils to give people acne. The type of bacteria from certain types of cheese. They're called propionic bacteria.
@@Christopher-b1p interesting thank you very much please share any more info I'm going to research into it. I think it could be a possible cure to mycobacterium
@RustyShakleford1 Thanks for reply. I did see.one paper had a 2 mm zone of inhibition with Vaseline and Pseudomonas A. Mycobacterium are a.huge problem. Particularly, because women can carry them. i wonder how many experimental results have been ruined by them.
Vous êtes magnifique je vous souhaite plein de bonheur vous êtes une battante je suis de coup coeur avec vous ne lâchez rien💪 ❤❤❤❤❤❤❤❤
Merci.
Firstly, thank you. That was really interesting. I am a little worried that you can't get your tube back in though. Maybe there's been some scarring and that is affecting it? I'm really just guessing here sorry, I am here to learn obviously 😊 your hair looks so pretty today by the way.
Thank you. I appreciate the insight and concern. I have been having issues getting my trach tube back in when inserting it. I am going to talk to my doctor about this. As you suggested, it is most likely scar tissue which is causing the issues. Thank you for all your kindness.
My late husband, who was a quadriplegic, had a trach AND had a red cap on it so he could speak. When the red cap was NOT on the trach, Perry, my late husband, could not speak.
Thank you for sharing. I appreciate the insight.
Why did the tube struggle to go in?
I am not sure. I had problems putting it in the last few times. I will ask my pulmonologist about this issue the next time I see him.
@@LifewithaVent let us know when you do
Also if the lubricant jelly gets in your lungs is that bad?
It is best to not get lubricant jelly into the lungs, but if lubricant jelly goes down into the lungs, it will most likely cause the person to cough (if the person still has a cough reflex). If the person cannot cough, some people suction after doing a trach exchange to try to prevent lubricant jelly from going down into the lungs. The lubricant jelly I use is water based and will be absorbed by the body if it remains in the lungs.
@ thank you
I talked to a guy who just had the hole in his neck and covered it when he spoke . What is that about. No trach tube that I could see.
Hi. He had a laryanectomy. Probably voice box removal. Cannot speak, and nose no longer works. Person breathes through hole in the neck/ stoma. Some people use valves to speak, others prefer to use no valves to speak.
@ thank you. Yeah he had cancer of voice box, yep.
Thank you. I've been having a lot of questions that you just answered.❤
I am glad the video was helpful.
Thank you for your video and for taking the time to explain! Does changing the tube or putting it in give you any kind of gag reflex?
Thank you for your question. No, changing the tracheosotmy tube does not give me a gag reflex. It does usually make me cough because the tracheostomy tube tickles my airway when it is inserted.
Great vid. Does doing a little bit of exercise help improve your lung function? Have you found a new primary care provider and a new team?
Great questions. I think exercise does help my lung function. At the moment, I still have the same primary care doctor. I am trying to get in to see a hematologist for my blood clots.
When my uncle had his tracheostomy, he lost the ability to talk. He was devastated because it was the one thing he could do because he had so much paralysis. He had post polio syndrome and had lived his entire adult life with one functioning lung.
Thank you for sharing some of your uncle's story with me. I am sorry he went through so much. I cannot imagine everything he endured. How heart breaking.
Thank you for your endless knowledge I love the medical field. How is your leg ? is it still pretty swollen or has it gotten any better?
Thank you for your kindness. My leg was doing a little bit better and was less swollen, but now it has swelled up again and is painful.
One video.that I recommend about chronic illness is the video ME/CFS Scandal.Explainer. it has a mitochondrial component, as well.
Thank you so much. I appreciate the information.
Dr. Annette Bosworth studies brain diseases fought with ketones. She is on her as well.
Thank you for sharing. I appreciate the information.
When you first got your trach, did you receive any speech therapy services? Your speech is so clear and resonant, it’s amazing!
No, I did not receive any speech therapy services. I was sent home from the hospital and was told I would most likely never speak again. I took it upon myself to figure out how to speak.
@@LifewithaVent that is horrible!!! they absolutely shouldn't have told you that. speech after trach placement is totally achievable and you're living proof of it. just showed your video to a group of SLP grad students. your videos are so informative
Thank you so much. I appreciate all your kindness.
♥️
Thank you.
Does it hurt when you replace (pull/push) the tract? Thanks.
No, it is not painful. it is uncomfortable, but it is not painful.
What is your opinion about Luigi Mangione and the UHC scandal?
I am unfamiliar with the scandal.
What happened if you lose power.
Exactly. Just what she showed when she took out her respirator, she won't be able to breathe.
My ventilator has a battery back-up. It can run on battery for about 8 hours. For additional information on what I would do if the power went out, please watch the following video: ua-cam.com/video/aKbmjBbnyec/v-deo.html
ATP has a good video on Kliebseilla pneumonia.
Thank you. I appreciate the information.
@LifewithaVent As an aside, there may be brain cysts that are caused by it. But, this area may need further research. Particularly near the third ventricle in the brain. These cysts are mucin like. Perhaps similar to what the bacteria produces.
Great information. Thank you.
💜
Thank you.
Perguntei pois sou portadora da Ehlers-danlos, POTS, MCAS e sou autista
Obrigado por compartilhar.
@@LifewithaVent você teve algum dano no nervo vago devido a Ehlers-danlos? Se teve, já tentou utilizar acupuntura? Desculpe ter colocado em português e obrigada por responder ❤ meus sintomas não são tão graves quanto os seus, começaram após um c0vid e também passei por um período de muito estresse, tudo isso junto foi uma bomba que deu início aos sintomas mais graves , tive choque anafilatico, dores horríveis, gastroparesia...
@@tarotica82 Lamento saber dos seus desafios de saúde. Não tenho certeza se tive algum dano ao meu nervo vago. Eu não tentei acupuntura. Você já tentou acupuntura?
@@LifewithaVent sim!!! Acupuntura ajudou muito, principalmente em relação à gastroparesia. A acupuntura ajudou a diminuir as dores também. Também estou utilizando suplementos e senti muita melhora, são eles: quercetina( ajuda a modular a histamina), urtiga, colageno, condroitina, vit c, reverastrol, NAD, lisina... no Brasil não temos quase nenhuma pesquisa sobre a síndrome de Ehlers-danlos. Estimo melhoras, é possível ❤
@@tarotica82 Obrigado. Agradeço todas as informações.
Hey! Question if you are free. When you put the tube back in, is there any structures in your throat that stop it? I kind of assumed that it would be as easy as it was going in as it was out but that didn't seem to be the case.
Thank you for the question. It usually is very easy to put the trach tube back in. However, the last few times, I have had some difficulties. There are no structures which will inhibit it from going in. However, over time, scar tissue can build up at the tracheostomy site. Scar tissue can make it more difficult to insert the trach tube. I will ask my pumlomonologist the next time I see him about the issue I am having reinserting my trach tube.
I love your videos, did you have your cuff completely deflated? I turn the title volume up to 4 7 5 normally it's set at 400.cuff completely deflated so my wife can talk fairly normally. My wife uses the Philips Trilogy Evo Havent deflated the cuff using this new machine.
Yes, I have my cuff deflated. Thank you for sharing about your wife.
You would be an amazing doctor ❤seriously you should go finish medical school I believe you would be an amazing amazing doctor !!!!! You could specialize in respiratory ❤bless you
Thank you. I appreciate your kindness.
❤❤❤
Thank you.
I had one in 2011 and people didn’t know how to approach me in public. Luckily I don’t have one anymore and I can speak now.
Thank you for sharing. I appreciate the insight.
I have my left lung collapse due to typhoid in 2020 so I also go through little bit similar challenges like coughing while talking, breathing problems and getting tired easily, getting used to it day by day.
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. All my best to you.
I’m confused as to the difference between how you sound a ventilator vs how Christopher Reeves or Brooke Ellison spoke with one
3:21 …wow…
Thank you.
At 4:18, your sink’s little drain looks purple enough to be a passy Muir valve. Seems fitting for this type of video 😂
Oh cool! Thanks for pointing that out. I never noticed it before.
Você é portadora da sindrome de Ehlers-danlos? Tem instabilidade crânio-cervical?
Sim, tenho síndrome de Ehlers-danlos. Não, não tenho instabilidade crânio-cervical.
Please please please look into the studies on reversing mitochondrial disease by bathing your brain in ketones. TPN is the worst thing you can do for your condition. I'm a previous Navy nurse and cancer patient having researched the keto/carnivore diet the last 5 years.
The keto diet and kerones are useful for people having epileptic seizures However, for other people they are dangerous.
Thank you for sharing. I appreciate the information. May I ask, what would you suggest I use to sustain my nutritional needs? Is there something I can use intravenously instead of TPN?
@@Christopher-b1p Thank you for the information.
Is it rude of me to ask what lead you to have the tube?
I have respiratory failure due to Mitochondrial Disease.
Yahki awakened is someone you need to go to
Thank you for sharing.
You are so gorgeous
Thank you.
You could charge medical schools for your educational vids. You of all people know what improvements can be made to med schoo
Medicine could learn from her!
Thank you. I appreciate the insight.
And you do all this in your BATHROOM that is filthy and has mold spores flying around. Even when I was healthier I couldn't breathe properly and felt faint after an hour in the shower because of the toxic vapors.
I am sorry your bathroom has mold spores flying around. When I shower, I take short 5 minute showers. The water is set to 90 degrees Fahrenheit. A powerful exhaust fan runs which sucks up the air in the shower and disseminates it into the atmosphere outside the home. There is also a dehumidifier which runs year round and also an air purifier. There is no mold in the bathroom. Does the bathroom look filthy on the video? I ask because the bathroom is professionally cleaned once a week. I think the cleaning crew does a great job, but if you think it looks dirty, please let me know.
Hi, I would like to know if you have a support system of relatives and friends to help you… if you feel comfortable sharing this with us. What are your greatest needs, and what ministers to you? I want to be aware of how I can help others.❤
Yeah, count me in!
Thank you for the question. Yes, I have a support system of relatives and friends. They help out when they can. A friend of mine will call when she is at the grocery store and ask if she can pick me up anything. Others will visit me in the hospital or will visit when I am home. Some send notes and cards. One friend from time to time gives me a small bouquet of flowers. Mostly, it is just nice to know people care. If you want to help others, send them a note in the mail, an email, a text message or call them on the phone. Find out if the person needs anything. If calling, be prepared to spend 10-15 minutes (or more) talking to the person.
@ Thank you so much!❤️
please do it gentle as possible next time 😁.
Ok, will do.
You should get paid for advising people on the use of a ventilator and all the ins and outs of the necessary equipment and monitors involved and all of the helpful information & advice that you can provide people with and work right in the comfort of your own home and obviously only when you’re feeling good enough to do so or be paid to advertise the equipment and supplies and show others exactly how to use them and which products are best… get paid for your expertise 🤑 why not ⁉️
Thank you so much for sharing. That is really great insight. I appreciate the suggestion.
You have lost so much, it reminds me of the story of Job in the Bible. You many not see healing on this side of eternity but I pray that if you haven't already, that you do develop a relationship with Jesus Christ and make him first in your life so that you can see healing on the other side.
Thank you. I appreciate your kindness. The Book of Job is one of my favorite books of the Bible.
Seek Jesus.
Thanks for sharing.
@@LifewithaVent dr brooke goldner
Thank you for the information.
Very unformative
Thank you.
💯
Thank you.