Death to life: My journey to getting a tracheostomy and using a vent to breathe. Life with a Vent
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- Опубліковано 2 тра 2020
- Happy Trachiversary! This week I celebrate my third anniversary of getting a tracheostomy and being started on a ventilator. It was a journey which started with shortness of breath and ended with respiratory failure. I have a condition called Mitochondrial Disease which causes muscle weakness in many of my muscles including the muscles used to breathe. I was started on a machine called BiPAP to help me breathe. Soon, though, the BiPAP machine was not enough. I had to have an urgent tracheostomy placed and was started on invasive ventilation. I praise God over and over again for this second chance at life. I greatly appreciate everyone who has helped along the way. For three precious years, a ventilator has helped sustain my life and has allowed me to keep on keeping on. #lifewithavent #tracheostomy #ventilator
(Side note: In Nov 2016, my force vital capacity (FVC) was 20%. I have since learned, most hospitals will immediately insert a breathing tube and start the person on a ventilator when his FVC drops below 30%. My doctor at the time was just out of med school and in her first year of residency. She was not sure what to make of my lung function tests. She assured me my breathing was fine--it was just asthma. For this, I am very grateful. It was only after I tried everything else (BiPAP and fighting until I was on death's doorstep) was I then ready to give up and get a trach. God knows our hearts. He knew I would not have been happy with my decision to get a trach and live on life support for the rest of my life unless I knew this was my only option. And when it was time to make the final leap, God cleared the way and brought me through.)
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You are SO right about being hospitalized alone. I've been sick most of my life, and my parents (especially my mom) were my biggest advocates. When doctors said I would never walk because of my cerebral palsy and hypotonia, they were like "to hell with that!" Guess what. I walk. Anyways, every new doctor, therapist, specialist, test, diagnosis, and medication was questioned and researched. I lost my dad in 2015. Then, in November of 2020, I lost my mom to cancer and Covid. Less than two months later, I had my first medical emergency without my mom. My gallbladder died. I swear I cried and cried and cried harder than I ever had over the loss of someone, cuz it was scary to face that alone. Luckily, my big sister really pulled through for me. Gallbladder was removed, and I came to the harsh realization that I had to learn how to advocate for myself, and fast. So now, when speaking with any doctors or medical professionals, I ask myself, "What would my mom do?" And I do it.
I am so sorry to hear about all your medical challenges. I am so glad your parents were such amazing advocates for you. I cannot imagine how hard it must have been to lose your dad and then your mom. My heart breaks thinking about that. I am so happy your big sister pulled through for you. I hope things get easier for you. You have developed an excellent way to advocate for yourself--i.e, what would your mom do. May the memories of your dad and mom be blessings. Sending lots of love.
You are so inspiring. My mother just got tracheostomy last March 22, 2021 ad we are so worried that she will not be able to talk again. And after watching this video, we are hopeful that she will be able to talk again when her condition became better. God Bless you and may you always be healthy ❤
Thank you. I hope your mother's condition improves, and she is able to talk again.
Thank you for sharing. You are so brave and such a joy to watch. I learned so much from your story. Keep fighting, sister, and pray. Jesus loves you.
Thank you so much.
Thanks for sharing! I am learning alot from you. God is so good!
Thank you for watching.
Your content is so great! I am a stay at home dad to a preemie miracle baby that was born under a pound. He spent seven months in two NICU's and one specialty hospital and finally came home in June with a trach for oxygen and g-tube for feeding. During the day he uses a HME with an O2 port and heated trach collar and ventilator at night. He just turned one year old a week ago 😀 I just started my own channel recently, and although its mostly cooking so far, I will be releasing a video this Saturday about how to change circuits on his machines. There's not a lot of content out here on trachs and vents and such, so your channel is super helpful. Keep up the good work and God bless!
Thank you for your message. I hope everything goes well for you and your son. I hope the year 2023 is full of lots of happiness and joy. All my very best to you both!
So blessed to find your channel and me watching such beautiful and strong women ❤ my mother is suffering from oral cancer and doctor told us that she have to get tracheostomy praying for her to get well soon and glad that i found your channel...gave me lot of strength ma'am.... Always keep smiling❤
Thank you for all your kind words. I really appreciate them. I hope everything goes well for your mom. All my best.
OH HONEY!!! Good GOD! You’ve really been through it!!!! I am so glad you are still here!!!❤❤❤❤❤❤
Thank you so much.
Happy Trachiversary! What a unbelievable story.
Thank you for sharing your story.
Thanks for watching!
You are a great person. Thank you for sharing this with us.
You are a blessing.
Thank you for your kind words.
I loved watching this video. Thank you for sharing your story!
Glad you enjoyed it!
Blessings to you! Great story of hope! 💙
Thank you.
It's very nice that you started this channel. I just got my Trach Friday (5 days ago), and it's not like you can just strike up a conversation with friends about issues that may arise. Generally you just the "sympathy disingenuousness" or they avoid the issue at all costs. In any event, I'm glad to see you out here congrats on 3yrs 🎉
I hope everything goes well with your trach. Thank you for your support.
@@LifewithaVent ❤
I too have a tracheotomy and it's why I am here to this day!
I am so happy it has saved your life.
For how long have you had it?
God bless you! I love your spirit!
Thank you.
What a Warrior!!!! your strength is so inspiring!!!!
Thank you for your kinds words.
Very inspiring!! Richest blessings to you
Thank you.
Thank you for sharing your story. It is very inspirational and you are a wonderful story teller. God Bless you!
Thank you.
Looking at you gives me so much hope. I nearly got teary eyed just looking at how joyful you are. I'm learning so much from your videos. I needed to see some uplifting encouragement. God bless you! I thank God for leading me to you. :-)
I am happy I was able to provide some encouragement.
Thank you for sharing, God Bless You, and much love from Norway
Thank you.
Cheers love. I was squirmin in my seat the whole time and the end was like "yay!!!!" Youre a Rockstar!!!
Thank you.
Thank you for sharing this! So glad you’re able to enjoy life again! And cheers to you synergy drink! 😁
Thank you!! 😊
You are absolutely amazing! Your spirit i so pure and enlightening. Thank you
Thank you for your kind words.
You are such an amazing positive lady. Such an inspirational lady. Thank you for making this important video. Wishing you all the very best 🙂
Thank you so much!
Thank you for sharing ❤
Thank you for watching.
You are an Angel 🖤
Thank you.
You are a proper badass, lady! I can't even imagine the strength it must have took you. You've got a new subscriber!
Thank you for subscribing!
Happy Trachiversary!!! I'll be celebrating mine in October 32 years! :)
Wow!!! Congratulations! That is amazing!
32 years of using trach?
The mind is pretty impressive, isn't it? "I'm fine, really. Everything's fine". You seem like such a lovely person; Happy New Year 2021 :)
Thank you for your kind words. Happy New Year!
@@LifewithaVent 🤗
Happy Trachiversary! Thank you for sharing your story. I do a "celebration of life" every July 14th as my way of being thankful.
Thank you for stopping by. I love the idea of "celebration of life".
Happy Trachiversary! I hope you have a wonderful day tomorrow. Congrats on another year of life!
@@LifewithaVent Thank you!
i can cry... i can see God's miracle in you... thank you for being so happy, and i am so happy too, hahaha omy i dont know why... but Praise the Lord for your strength
Thank you.
Thank you so very much for sharing your journey. My husband has ALS since 2013 and has full use of his body except his breathing. He is in ICU now on a ventilator. I am begging them to put him on a Trach I want him home. His vitals are good except his blood pressure keeps dropping. Horrible hospital here
I am so sorry to here your husband has ALS and is in the ICU. I hope they are able to provide care in such a way that he is allowed to go home. Sending much love to you and your husband.
P.S. I am not sure who is managing your husband's ALS, but I found through much trial and error getting into a neuromuscular (or ALS) clinic is tremendously helpful. My condition (Mitochondrial Disease) is similar to ALS in that it falls under the umbrella of neuromuscular disease. I struggled after getting a trach and being started on a vent to get respiratory care. I went to a neuromuscular clinic, which specialized in ALS. They did not know a lot about my condition, but they have been tremendously helpful with my respiratory needs.
Perhaps reaching out to the ALS society or doing an internet search may lead you to someone who may be able to help your husband.
I want to tell you openly God brought me to your message. I have been critical of people being ill and you truly blessed me.. I feel humbled n thankful i am thinking right about things now.. I have felt like some people are sick because they don't have faith. This is not your case. Maybe at times. But not yours.. But i know God doesn't want us to judge one another but listen to Him.
Thank you for sharing. What a beautiful message.
Pls continue living a happy life. You have inspired so many people just by uploading this.
Thank you.
Indeed ey.
You have such a beautifully, amazing spirit ! God bless you always.
Thank you for your kind words.
@@LifewithaVent
Hello are you still alive . Im trying to.get a time spam of the Pneumonia and to COPD ..For me I remember i was 60 and had Colds and chest infections. but my lungs were elastic. I had the pnamonia shot . It gave me the Pneumonia disease and in two weeks was weezing and was very sick .
I hat to start using a inhaler . and making mucus and weezing.
It help a lot . I used big Anti biotics 100mgs types this stops pain and helps cure the infection with 500 mg Panadol tablets 2 when i get up and go to bed keeps mucus down and inhaler. happy with that. im going shopping and walks still . I guess i have 10 years ahead from your blogs . Dont get any Vaccines ever. I dont trust the medical INDUSTRY anymore. Please get back to me if your still alive .
@@west8436 Hello. Yes, I am still alive. The time span between getting pneumonia to getting COPD for me was 12 years. I am so sorry you have had so much illness. It sounds very challenging.
@@LifewithaVent
Cool God bless 👍
God bless you!!!
Thank you.
I myself have Muscular Dystrophy, my breathing is not perfect but I can breathe on my own for now. Thank you for the video it helps with the anxiety about this subject.
I am so sorry to hear you have muscular dystrophy. (Mitochondrial Disease is under the umbrella of muscular dystrophy.) I am so glad I was able to help ease your anxiety. Best wishes to you!
I seen the post from the MD group and thought I’d comment here, I look forward to seeing more videos on your channel!
I have muscular dystrophy too and on bipap 247
Just found your channel. You have such positive vibe going on. When most people would be running for the hills, you really faced it head on. My sis n law has to have a trach put in in the next day or so in the ICU due to Covid. I feel she will find more relief after coming off of the vent. I know it's not the same as your issue but this vid will help me and my family cope with this new step. Hopefully it will allow her to heal quickly to come home. ❤ Edit: She also has COPD and was already using a nebulizer during day and CPAP at night for it. Oh and I'm the 500th subscriber. 😃
Thank you for your kind words, and thank you so much for subscribing and being number 500!
I am sorry to hear of your sister-in-law's medical challenges. I hope she is able to recover from COVID and is able to get home quickly. I hope all goes well with getting the trach. I just released a video on Sunday about what to expect when getting a trach. The video may be of use. ua-cam.com/video/lagQjwDXSk8/v-deo.html
If you-all have any questions or concerns, please feel free to contact me. My email address is: life.with.a.vent@gmail.com
@@LifewithaVent Thank you for this. My brother liked your video and now I'm excited to let him view the new one. We do appreciate it. You've helped us alot. ❤
@@Bombo505 My pleasure. If I can provide any further help, please feel free to contact me.
@@LifewithaVent Sadly my Sister in Law passed away on June 21st. Although we miss her, we are grateful for the time we did have with her thanks to God above and the vent and trach. I still love your videos. I'm hoping it gives others hope as it did us. Even though it didn't turn out the way we hoped, it still gave us time. Thank you!! ❤️
@@Bombo505 I am so sorry to hear of the passing of your sister in law. How heart-breaking. My sympathies to you and your family. Sending much love and prayers.
This is one of my favorite videos of yours because it is “unscripted”, an amazing story and your voice and speaking is very natural and spontaneous. May I ask why in most of your videos, you work from a pre-written script and you speak in very measured tones, as apposed to talking ‘off the cuff’ as in your three year “Trachiversary” video from 2020 - I’m guessing that working from a script is easier for you, but I have to say I enjoy your natural, spontaneous speaking voice, which is quite charming 😊😊😊🎉🎉🎉 and I’m thinking your other viewers and subscribers would feel the same - Always Praying for your Health.
Thank you for your kind words. I am glad you enjoy this video. Most of my videos include medically-based topics. It is very difficult for me to memorize the scripts or speak off the cuff because the topics often necessitate details and a specific order to the video's sequence. I do not have the cognitive ability to do that. In contrast, this video is just me telling you a story. If I get the order wrong or the details wrong, no one knows except me.
Also, this video from 2020 is four years old. My health has dramatically declined since then. It is challenging for me to speak. My speaking is often in a rhythm because it is very hard for me to breathe over the machine to imitate a more natural speaking style. (Breathing over the machine takes a TREMENDOUS amount of energy.) I have to speak when my ventilator gives me a breath, which in turn often means I speak in a rhythm.
I totally understand - you’re the Best ! 😊
live long lady..❤❤
Thanks!
HAPPY BIRTHDAY
Thank you.
I know how it is to be in a tube. I had it for two months.
Stay strong!
Thanks!
Happy bday
Thank you.
Kambucha is my favorite also. So much so that I leave little to start a new batch.
Heat water and make green tea, lemon ginger concentrate and add 1/4 to 1/2 cup sugar ( no oily tea), let it cool and put it into a vented sterile glass container, then add the remaining shaken Synergy, place in a coll dark location and wait 2 weeks. you will see an oyster looking, " mother" growing on top. strain and place in the fridge before it becomes to vinegary and enjoy. Thanks for sharing
Wow! Thank you so much for sharing how to make another batch. I really appreciate the info!
Love from India ❤
Thank you.
You are such an inspiration and so brave!! I have been in hospital and got an nj tube fitted last week, and watching you has really helped me through it❤️but I have a question, you mentioned you kept telling yourself you were making it up (when obviously you weren’t), is this common when you’re going through a lot of suffering and haven’t got the right diagnosis yet? I keep telling myself I’m making it up too, when obviously there is a real physical problem! Thank you❤️
Hello Thank you for your kind words. I am sorry to hear you are having some health challenges. I often tell myself I am making things up because I always tell myself things are not as bad as what they actually are. It is a coping mechanism. I get through bad symptoms or rough health by telling myself "It's not that bad" or "I must be making that symptom up". If I dwell on my symptoms/health conditions, I think I would have slipped into a deep depression and probably would not have fought through some very serious health events or fought to get medical care (which saved my life). I am not sure if telling yourself you are making up your symptoms is a healthy way to deal with symptoms. I hope you are able to get your health sorted out. I hope you are soon on a path to better health.
I would have sue the first doctor for malpractice what a ridiculous thing to say. Keep up the good fight you are a fighter.
Thank you.
I'm not sure if I missed it at some point in the video, but when were you diagnosed with the mitochondrial disease?
Just recently found your channel when I wanted to learn more in depth about tracheostomies, and I absolutely love and appreciate your content!!
Thank you so much for your kind words. I was diagnosed with Mitochondrial Disease in 2011. To put it in the context of the video, I first was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) . My health continued to worsen. In 2011, all my health issues were attributed to Mitochondrial Disease. Then, my breathing started declining. In 2017, I got a tracheostomy tube and ventilator.
Thanks to god you made it. This situation gives me anxiety and stress, my mum is in tracheostomy since 11 days. she was initially in ventilator and then Endotracheal intubation for 21 days. Now she is doing physiotherapy and eating blended food.
Could you please answer these questions?
What was your situation , How long you were in hospital ? From when did you start eating? from when you started to speak ? And what types of food is good to give her more energy?
Your help is kindly appreciated !
Hello. I was in the hospital for 9 days. I got a tracheostomy tube the first day I was in the hospital. I could eat 3 days after getting the tracheostomy tube. Food which will help your mum are things with lots of vitamins and minerals such as fruits and vegetables. You can also buy a vitamin called vitamin B complex. You should be able to crush the pill and put it in the blender to blend in with her food. Also a supplement called Co-Q 10 (it may also be called co-enzyme Q-10). You should be able to blend this in with her food.
It took about a month before I was able to start speaking again. I discuss some steps how I was able to speak in the following video: ua-cam.com/video/edd16Ro57eo/v-deo.html
All the best to you and your mum!
Your videos are so inspiring honestly. I was diagnosed with reactive airway disease about 2 years ago and haven't gotten much info on it. I've been to a few doctors and most of them just play my symptoms off as if im faking. My chest is often heavy and I haven't been able to get a job because of it.I cant lay flat on my back for too long neither am i comfortable laying on my left side. I use inhalers as well as a nebulizer but they dont always help. My spirometry test came out well but they said they're aware that I'm short of breath even at rest. Not really sure what to do anymore because i can't seem to get any answers.
Hello. I am sorry to hear of all your struggles. When you had the spirometry, did they do the MIP (maximum inspiratory pressure) and MEF (maximum expiratory pressure)? These can aid in diagnosing respiratory muscle weakness and are often not ordered during regular spirometry testing. When they did the spirometry, did they do the tests both in the sitting position and lying down flat? A person's ability to breathe can decrease by as much as 50% when lying down flat. It sounds as though you are having issues being comfortable lying on your back. Do you sleep propped up on pillows? If you do not sleep propped up on pillows, see if sleeping propped up on pillows or with the head of your bed elevated helps you get to sleep. (Alternatively, if you have a recliner, see if sleeping in the recliner is more comfortable.) Have you had a sleep study test? If you have not, ask for a sleep study and also ask that your carbon dioxide levels be monitored when sleeping. I hope you get answers soon.
Hello. , I. Got. My. Second. One. In. September. Of. 2016... I. Had. It. Every. Since.... I. Am. Doing. Ok... I. Am. Glad. That. You. Are. Ok...stay. Strong. And. Safe.
Thank you. I hope you are safe and well too!
@@LifewithaVent Thank. You. Very. Much.
I have had a very sick fiance who pushed me away who i feel for. I know i hurt him a lot emotionally but i do believe his problem has been a combination of things.. And God has shown up.. When i finally gave up on him. He cried out to God
Thank you for sharing. May God help you both find healing.
hi, thanks for making this video. im 17 and i just got diagnosed with mitochondrial disease after having double vision and cpeo + other symptoms for 2-3 years. they said its probably kearns- sayre syndrome. which subtype do you have? also wow the medical system in america sounds horrible im so sad you were accused of that. im in the england and my experience with my geneticist was amazing and she was so compassionate, im getting reffered to the oxford university hospital specialist team for rare mitochondrial disease aswell and visiting them soon. this is all free here with the nhs aswell. i hope america can improve and make all healthcare free.
Hello. Thank you for sharing some of your story with me. I have CPEO along with other symptoms. I have Mitochondrial Myopathy.
I am glad you had a great experience with your geneticist. I have probably seen over 1,000 medical providers during my lifetime. I have had MANY amazing doctors, but inevitably there have been a few bad medical providers as well. Thankfully, if I get a bad doctor, I can go to a different medical facility and do not need a referral. My healthcare is also free.
I hope everything goes well for you when you see the specialist team. All my very best to you.
Try cod liver oil or hemp seeds. You might be low in omega 3s
You are so brave and inspiring. Thanks for sharing your experience, I was just wondering, is it possible to fly long distance, or how active person can be with vent, can they go out for shopping, dinner etc?? can they take a walk with the machine?
Hello. You can do anything you want with a ventilator. Flying, shopping, going out to dinner, etc. are all possible. The only limitation with a ventilator is the battery life. My batteries collectively last 16 hours. If I need more battery, I can get longer lasting batteries, or I can charge the batteries when they are not in use.
@@LifewithaVent Wow!!! amazing. Thanks for Reply
Do they know why you went into respiratory failure? Thank you for sharing your story.
Hello. I have Mitochondrial Disease. This causes muscle weakness and caused the respiratory failure.
what;s your trachy set up? you talk extremely well which is amazing.... any tips? I have found it almost impossible to speak since getting a trach a number of years ago.
I had major issues trying to speak when I first got a trach. I found the tracheostomy tube is one thing which greatly affects my speaking. I use a flexible trach tube. It is thin polyurethane plastic and the cuff deflates tightly against the trach tube. This allows my airways to have lots of room for air to leak up to my vocal cords. The trach tube is made by Shiley called adult flexible tracheostomy tube with TaperGuard cuff. It is not the regular Shiley tube, but it is a tube made in Mexico and imported for distribution in the USA. Trach tube size also affects your ability to speak. The bigger the size, the more trach tube is in your airways, the harder it is to speak. I was started on a size 8, but then dropped to a size 7. The size 7 is shorter in length and less in diameter. This also allows more air to leak up to my vocal cords and makes it easier to speak. I also use bronchodilators such as albuterol to open up my airways as wide as possible to make it easier to speak. But even with doing all this, there are still days when it is very hard to speak.
@@LifewithaVent thanks so much for that, I currently have a size 6 portex blueline ultra uncuffed fenestrated tube
Hello. Can you please advise how often you change the inner cannula cleaning brush and how do you store it between use (assuming you have an inner cannula). Much thanks!
Hello. I change my inner cannula cleaning brush when it starts to lose its shape or look dirty. After using the brush, I thoroughly clean the brush in soapy water. I rinse it off in water. I then get a small pot of boiling water on the stove and throw the cleaning brush into it. I put the lid on. I then turn off the heat and allow the brush to sit in the water until it comes to room temperature. Using a sterile tweezers, I pull lift out the cleaning brush and place it on a clean paper towel. I loosely wrap the brush in clean paper towel. I allow it to air dry for 24 hours. I then carefully place the paper towel wrapped brush inside a clean plastic zip top bag. I seal the bag and store it for future use.
@@LifewithaVent Thankyou!!!
If u don’t mind me asking, how do u talk so well with ur trach? Does ur vent constantly support ur breathing or do u breath some on your own?
The ventilator supports my breath, but I do use some muscle strength to force air up my airways and through my vocal cords. If you would like more information on how to talk with a trach, please see the following video: ua-cam.com/video/FSL57g7iIN8/v-deo.html
You just gave me hope for my wife. She's on a tracheotomy and a ventilator for the rest of your life. She has a neuromuscular disease. I was wondering do you have a humidifier to thin the secretions? I have to suction my wife several times a day. Do you have to suction secretions on a regular basis?
take care
Hello. I have a heated humidifier which is attached to my ventilator. Any time I use my ventilator, I also have the humidifier turned on. The only time I do not use the humidifier is when I am in the car. For more information about heated humidifiers please see the following video: ua-cam.com/video/QH2wNF_Dg_0/v-deo.html
I do not like suctioning. I will suction if I have to, but I prefer to run saline through a nebulizer to loosen the secretions. If needed, I will then use suction to get rid of the thinned secretions. For more information about suctioning, please see the following video: ua-cam.com/video/g20GTuhC1zM/v-deo.html
Hello,
Something that helped my mom who was a total laryngectomy patient was always having the hme on. It created humidity therefore keeping her throat area moist. Once or twice a day did use the mucinex through through the humifier machine. We also sectioned her maybe every hour so I understand your frustration. Don't give up it gets easier, just try different methods and never leave the area to dry.
Take care
how your voice is so clear with tracheostromy
Hello. I have practiced a lot to get my voice clear.
Hello. I just released a video today about how to talk with a tracheostomy tube. If you wish to view the video, here is the link: ua-cam.com/video/FSL57g7iIN8/v-deo.html
So, I'm confused, what was the condition that caused your respiratory failure? I'm so sorry you've gone through this.
Thank you for your kindness. Mitochondrial Disease is what caused the respiratory failure.
U were smiling all through the vedio but to be honest I was not feeling soo good about this. 😔Why does god makes anyone go through all this pain. I am very sory to hear this. And hope you feel good very soon. ❤ and you were in the hospital because of pneumonia ?? How are you feeling now?? Did u get a discharge from hospital yet??
Hello! Yes, I was in the hospital with pneumonia. I am now home. I was given IV antibiotics to administer at home. I do not like pain and struggle, but I know I am a better person because of it. God can use all situations to challenge us and to help us grow into better people.
@@LifewithaVent okay take care. And have your medicines on time. I just want to give you a hug but I live across the globe sooo here is a virtual hug 🤭🧤💝❤❤
@@vikrantlalge Thanks. I appreciate it!
How was your oxygen saturation prior to this procedure, was it always very low, or would it bounce up and down?
My oxygen saturation was normal (95-99%) prior to and after the procedure. My carbon dioxide levels were EXTREMELY high prior to the procedure. I needed to get a trach and be started on a ventilator because my body was not able to get rid of carbon dioxide. Once I get a trach and vent, my body was able to get rid of the carbon dioxide and my carbon dioxide levels returned back to normal.
@@LifewithaVent Ohhh so it was hypercapnia? I never knew you could have high CO2 but also normal oxygen saturation. That is very interesting.
I have Ehlers Danlos and I have been having some strange breathing issues and i am still trying to figure out who to see about it. Feeling like my lungs are heavy - like trying to inflate leather bags or feeling like trying to breathe through a pillow, but also a feeling of my trachea flopping, collapsing when lying down. I get periods where my O2 saturation drops to the low 90's or even 80's %, (though most of the time it is fine). This often seems to happen during sleep, although i have been told i don't have sleep apnoea. I wake up drenched in sweat and confused.
@Nozyspy I would suggest seeing a pulmonologist and asking to have pulmonary lung function testing done. Request to the have the testing done both sitting up (as is the usual protocol) and also lying down. Lung function can decrease by as much as 50% when lying down.
Gravity has a greater effect on your respiratory muscles and airways while lying down. This may be causing you to retain too much carbon dioxide while sleeping. High carbon dioxide will cause you to wake up, be drenched in sweat and be confused. Your heart rate may also be increased upon waking.
Also, with Ehlers Danlos Syndrome (EDS), you have faulty connective tissue. You may have weak airways. It may be when you lie down, gravity may be causing your airways (including your trachea) to partially collapse, as you said in your post above. (In addition to Mitochondrial Disease, I also have EDS.)
If your lung function is low (below 50% while sitting or lying down), you will probably need to use a machine called BiPAP. This will help your body get rid of carbon dioxide.
Sleep studies do not check carbon dioxide levels while sleeping. Sleep apnea is when you stop breathing while sleeping. So, it sounds as though you are still breathing while sleeping, you are just not able to breathe properly while lying down.
You so pretty
Thank you so much for you kind words.
I have a question ⁉️ what happened if your have aspirations pneumonia but your not coughing up blood but u can breathe a little but not alot and when I eat I start sweating is that bad
If you have concerns about aspiration pneumonia, please consult your medical provider. A work-up should to be done to check for pneumonia and also your ability to swallow. All my best to you.
My daughter has a tracheostomy for about two years. Until now she had PORTEX, recently it was changed to SHILEY and it seems that this canola is much more comfortable for her. In your opinion, which canola is better?
Both tracheostomy tubes are great. Either one work well. Personally, I prefer the Shiley because I am allergic to silicone which is the material the Portex is made from.
@@LifewithaVentSHILEY - I understand is more flexible and also the inner canola is wider
@@segevamitec It depends which Shiley and which Portex tracheostomy tubes you are comparing. Each company (Shiley and Portex) make several different lines of tracheostomy tubes.
@@LifewithaVent -
Now she has Shiley Flexible Adult Tracheostomy Tubes, with Disposable or Reusable Inner Cannula -but before -
Portex -Blue Line Ultra Tube Kit with Inner Cannulae -soft seal cuff -100/810/075- My daughter has a short neck
@@segevamitec The two tubes are about the same for flexibility. The Blue line may feel less flexible at room temperature, but as the Blue Line heats up being exposed to body temp, the plastic becomes flexible.
If using the same size tach tube, the internal diameter of the trach tube is the same size. If the trach tube is also being used with a disposable inner cannula, I do not know if the two trach tubes differ. I was unable to find the dimensions of either trach tube's disposable inner cannula.
The fact that i was about to get a breating tube when i was baby Was probably the most scary times for my Parents i am lucky i never got to have it it was all because my heart Condition i have
Wow! I hope your heart condition has not caused any other complications. Hugs to you.
@@LifewithaVent it did it made me to have this syndrome Diegorge syndrome its rare syndrome it comes in Physical problems and mental health problems i got physical problems i also have Foot Problem Clubfoot And Feeding tube problem and got sever scoliosis And also a lerning disability
@@laurenmeehan897 Wow, I am so sorry to hear about all your health challenges. Hugs to you.
Hello.
My mom is in the ICU right now shes 84 with bronchiecstasis. My mom rrally wants to live.
Shes adviced to have a tracheostomy with ventilator..
How can we manage vent and trache at home.
It is best to ask her medical team for information on how to care for a tracheostomy tube and ventilator. They should be able to provide training and help you as you transition from the hospital to the home.
What would be good funny gifts to someone that just got it? 🥺❤️
Maybe cute collar 😊
I have 8 months old boy so my son he has cougt so what best way to treat him 💙
I am sorry your son has a cough. I hope he is feeling better. If he is still sick, take him to the doctor.
What is that long tube outside your Traech tube?
It is an air hose which connects to my ventialtor.
I have recently had a tracheostomy and I am not on a ventilator. The place I was released to has ended up giving me alot of red flags as far as dangerous environment one being that the place is far from clean and even further from sanitary. Another big stresser is the fact that the house is horribly infested with drain flys and I may be just freaking myself out but I swear I keep feeling them fly into my inner cannula. So if you can please bless me with your experience and knowledge please tell me anything that I should know
Hello. I am so sorry to hear you are living in less than ideal conditions. For your trach, you should keep the tracheostomy tube covered with a device called a heat and moisture exchanger (HME). This will prevent your lungs from losing moisture to the environment and will prevent dust and bugs from getting into your trach tube. You should be able to get HMEs through your medical equipment company. Alternatively, you can buy them online.
Any time you touch your trach, make sure you wash your hands thoroughly with soap and water. You may want to also wear gloves. If you are concerned bugs may get into the gloves, keep the gloves in a ziploc bag or in a container with an airtight lid.
As for the drain flies this may work: Before going to bed, pour 1/2 cup of salt, 1/2 cup of baking soda followed by 1 cup of vinegar down the drain. Leave it overnight. Then run water down the sink in the morning..
Another alternative is to put in a dish next to the drain some apple cider vinegar and a few drops of dish soap. The apple cider vinegar is sweet and will lure the flies. The dish soap will kill the flies.
Thank you so much for responding I have been using the HME and it's been working ty for that, was wondering if I should sleep with it on and also how long one is good for? And it's so crazy how your symptoms of laying flat and being short of breath is so much like how I was I had an abscess on my larynx and a fractured trachea for 2 months it almost got me
Recently moved to a safer place things are getting better as far as living conditions but still having a hard time adjusting to trach life
@@joshuakeeler9945 Yes, you can sleep with the HME. According to my medical equipment company, the HME lasts for 24 hours. Then it should be replaced with a new one. I use mine longer than that. After 24 hours of usage, I will place the HME in a small jar. I will squirt a drop of liquid dish soap into the jar and fill the jar with boiling water. I allow it to sit overnight. In the morning, I take it out, rinse the HME with tap water and allow it to air dry. I then will re-use the HME.
I am so sorry to hear about your abscess and trachea. That sounds brutal! I am glad you are feeling better.
I didnt think of that and will try it what about a passy murr speaking valve do you use one
Hi..how can you manage normal life on ventilator? Is there no any chance of neumonia or infection because of trecha?
Yes, there is risk of pneumonia and infection. The best way to live a normal life on a ventilator is to stay away from large crowds and sick people.
@@LifewithaVent my wife has Polymyositis and she has been on ventilator from 3 months and still in hospital. Because her dipharam muscle is weak she is on ventilator
Thank you for sharing. I hope everything goes well for your wife.
@@LifewithaVent She is on portable ventilator but 3 times Ventilator had exhalation vale issue because of nebulizer. So, when any mistake comes in venti then what you do at home ? Any best way ?
If there is a problem while at home, there should be someone to contact. When I came home with my ventilator, I was given the phone number of a respiratory therapist I could call if a problem came up.
Sister is morning trach change and trach dressing difficulty n painful
No it is not.
What is call to that trach?
My dad had that for 6 months now that it out he is not the same he keeps having bad anxiety and suffering he keeps saying it a rubber band down his throat I don't know what to do he had a mature surgery on his heart the ventilator caused him to get the traits been a year and half he still suffering he doesn't even talk to us for 5 min he start panic saying he can't breathe
I am so sorry to hear about your dad's challenges. Has your dad been able to try a different tracheostomy tube? It may be the tracheostomy tube is causing irritation to his airways. Trying a different tracheostomy tube brand or trying a different sized tracheostomy tube might give him some relief. Have you brought these concerns with your dad's medical team? I would ask his medical team if they have any suggestions.
@@LifewithaVent he got the tracheostomy out 6 months ago he been having difficulty every since it been taken out his medical team keeps saying nothing wrong it all about money with yale so they really isn't concerned about it I just feel so bad about my dad condition thank you for sharing your issues and I really appreciate it you responded many blessings for you
@@sayblaze I am so sorry your dad is still suffering. When your dad had the tracheostomy tube, he may have developed scar tissue in his airways. The scar tissue can constrict the airways and make it difficult to breathe. Medicines can be given to help open up the airways. Perhaps you may want to ask your dad's doctors if they would be willing to prescribe medicine to help with his breathing. The medicine is usually given via an inhaler or nebulizer.
@@LifewithaVent ok thank you so much for the information I will look into it and ask his doctor about it I appreciate the helpful advice 😊
I tried to listen carefully but there were some detail missing I would like to know. Sorry if you said them and I missed them. What age were you when you got all of these diagnosis? You said at 8 years old you already had breathing problems with activity. Then you go dx with Asthma. What age? Then POTS, what age was that? Then Mitochondrial Disease, what age was that? Also I see you have been diagnosed with EDS, what age? Lastly I think you said the Tracheotomy was 2016? Do I have that correct? So 6 years ago? Also what was confusing for was that at one point, before you went on the bipap, you were fine and didn't have any doctor. you kind of skimmed over that part. So it's confusing when you got the POTS and Mito dx and what meds you tried for them and then why you wouldn't have doctors for them. Also how you got diagnosed for each of those illnesses. Also it's strange after your pulmonary function testing and you had 20% that the doctor brushed it off. And that it wasn't considered respiratory failure at that point. Because even when that doctor gave you the lecture about the need for the trach/vent in 1 year, why didn't he think it was respiratory failure then?
I have an extremely similar story to you in that I have the worst breathing problems. It's too long to discuss here but perhaps I will message you on facebook to discuss. I have Mito, POTS, and much more same as you. I even tried a vent which I can explain. Not sure where you live what state, but I met with one of the top vent doctors in the world Dr. Bach in Newark, NJ Beth Israel. He basically helps people avoid trachs and is adoment against them. And he treats the worst of the worst muscle weakness people who need vents. And just to let you know I have been mostly bed bound for more than a decade so I understand the struggle more than most. I look forward to talking with you soon
I got diagnosed with asthma at age 8. My other diagnoses (mito, POTS, EDS) were made in my 20's. I got my tracheostomy in 2017. I do not remember which meds I tried or what testing I did.
I lost my doctors. So, I stopped going to doctors. My POTS doctor said there was nothing more he could do for me. He told me not to come back to him. My mito doctor moved and began a teaching position at a medical school. I was referred to a different neurologist, but the new neurologist said to see my primary care doctor. My primary care doctor said I was way beyond her care level.
The doctor did not make the diagnosis of respiratory failure because I needed to be evaluated by a pulmonologist. The doctor gave me the referral. When I had my appointment, the pulmonologist gave me the diagnosis of respiratory failure.
Thank you for sharing some of your story with me. I am happy you found a doctor with a lot of experience with ventilators. I hope he is able to help you.
Hi how are you now?
Hello. I am doing ok. How are you?
Is it breathing for you?
Yes, the machine breathes for me.
Hy my dear I love your vids can you help nurses students understand pharmacology? Tubes? Thank you
Hello. I am not knowledgeable about nursing. I would suggest finding someone who is trained as a nurse.
Madam Can I speak with permanent tracheostomy tube ?
I do not know. It will depend on the reason for getting a tracheostomy tube and any underlying medical conditions which may impede speaking.
I released a video today about how to talk with a tracheostomy tube. It may be of use to you. Here is the link: ua-cam.com/video/FSL57g7iIN8/v-deo.html
the doctor told you you were faking results and called you a drug addict?? i wish you complained, that is so beyond inappropriate and unprofessional
Unfortunately, I have had similar things happen to me many times. I rarely complain. I have learned to get a copy of the test results and find another doctor.
It's unfortunately pretty common. Been there too, especially when they see I have a history of mental illness.
Are you hooked to a ventilator 24/7. How are you talking.
I am on a ventilator almost 24/7. I do disconnect throughout the day to do short tasks such as go to the bathroom, transfer in/out of my wheelchair, etc. I am able to talk because I can deflate the cuff on my tracheostomy tube and still have the ability to speak. My vocal cords are not affected by my health issues. When I deflate the cuff on my trach tube, the ventilator pushes air into my airways when inhaling, but during exhalation, since the cuff is open, air escapes up my airways and out my mouth. I can use this air to produce sounds/words with my vocal cords and mouth.
Not everyone with a trach and who use a ventilator can speak. It depends if the vocal cords are still functional and if you have muscle strength in your tongue and mouth to produce words. You also need to have some muscle strength left in your respiratory muscles. I have some friends with ALS who can speak with a trach/vent and others have lost this ability. The ability to speak with a trach and using a vent depends on the underlying medical condition and how it affects the individual's body. Some individuals also lose the ability to speak when the tracheostomy procedure damages the vocal cords.
Hi vent lady💗we all talk about your vent but nobody has said how beautiful your dress looks! Very colourful! If you don't mind me asking but you don't have to answer as some stuff is private,do you use a wheelchair full time? It's probably a stupid question as when I was on a ventilator it was never that portable so it had to be strapped to a wheelchair! We see you sitting down in your room,but I thank God your still with us as you have been amazing & so patient with all my medical stuff! I would be lost without closed captions,for the past 4 or 5 mths even with hearing aids I can barely hear a thing! I am told your speech is brilliant even with a ventilator! So thank you for being a long distance friend,god bless 💖💖💖
But you can speak, why still on tracheostomy?
I have a tracheostomy because my breathing muscles are weak. I am not able to sustain life without a ventilator breathing for me. The tracheostomy tube allows the ventilator to push air into my lungs. I can speak because my vocal cords work.
What an amazing story but I didnt like the part where you went against the doctors orders of NOT getting the tracheotomy that DAY all because your parents were leaving town? Um. Yeah they're not leaving town. I mean I understand you were scared and tried putting it off as long as possible. But the way it sounds, you were dying. And you waited an extra 10 days just so you wouldnt ruin your parents weekend? Dude that's amazingly selfless at a time when you shouldnt have been. You should have said ok doc let's do it. I cant take this anymore. Mom, dad yeah you're not going to your time share this weekend. You're staying with me in the hospital. I'm going through some similar health problems right now. Not as severe as your but probably as painful or MORE. Tooth problems. I'll tell my story like you told yours but I'll be quick. Anyway. I've had back problems half my life. At age 16 I messed my back up doing god knows what, either weight lifting or football, I cant pin it to one event. But I do remember the morning I woke up and couldnt walk. The pain was unbearable. I had to take 2 weeks off from school and even then I was still in pain sweating and taking advil like tic tacs. Long story short, I just was careful. Didnt get my back surgery until I recently turned 32! Because back in my 20s they all said you're too young. I had artificial disc replacement. The operation was successful. So about a little under a year after my surgery. Where I'm fully healed. The left side of my jaw started hurting me something fierce. I went to my doctor thinking it was TMJ, they took an X ray of my head. I saw it with my own eyes, a wisdom tooth was growing INTO my jaw bone. On the left side. My primary didnt see it. So I go to the dentist. I didnt even think it was a tooth because my teeth didnt hurt. So I had that tooth extracted. Pain went away. Well fast forward 2-3 years. I'm having really bad back pain again I dont know what it is. Sometimes these surgeries fail and the implant failed. Nope I had x Ray's, ct scans, mris the film says everything is ok. But during that time I was having some jaw pain on the right side. I knew I had a wisdom tooth there because just 5 years prior when I had the left wisdom taken out the right one was just up in the canal just chilling. So I didnt have it taken out. Big mistake. See when I took out left wisdom tooth. That gave right wisdom tooth room to poke its ugly head and grow. Mind you I just turned 37! Lol. Anyway. I only felt mild pain because my back pain was so severe it kept it out of work for 2 years now! I finally see a good doctor to cure me of my back pain, he gives me an epidural right to the nerves. I felt fantastic. For about 2 days and then my jaw pain which was dull and manageable is now sharp and unbearable. Its funny how the body prioritizes pain. So I go to the dentist. Well. Right side wisdom tooth is impacted right into tooth number 2. (Right wisdom tooth is tooth one, and the one next to it is tooth 2) so I'm trying to see an oral surgeon who can extract it as soon as possible, this was back in late march, I find a guy and he says my wisdom tooth looks fine, and he thinks tooth 2 is giving me my pain. But he does nothing about tooth 1 which was clearly impacted into tooth 2. Tooth 1 had to go regardless if it was tooth 2. And after seeing the x Ray's in my mind tooth 2 is compromised. So I had to wait 2 more weeks in agonizing pain and if it wasnt for norco and xanax I'd have blown my head of with my glock 21. I see the oral surgeon at my dentist office. Hes only there once a month. But he was great. He about to take out tooth 1, (the wisdom) and I say I want tooth 1 and 2 extracted! My dentist vetoes that idea and says no, nothing wrong with tooth 2. Well he was wrong. So the oral surgeon take out tooth 1. I'm still in pain, I go into my dentist office help, it's the other tooth, so they do an occlusion on that tooth because I have bad teeth grinding habits, bruxism. That's relieved some pressure. I'm still in pain!!!!! I come back the next week and he tells me it's the fucking grinding. Tries selling me a 500 dollar night guard. Does nothing, I come back the next week in pain and this time they do something. They do a pulpectomy which is they take the main root from the tooth OUT. I'm still in pain! I need a root canal they say, so next week comes by, I got the root canal this past thursday. The pain has subsided but I still feel something is rotten in the state of Denmark. So I'm still in pain. Today. Tonight. Its 1am, the tooth feels like it's too big to fit in the tissue, now that could be swelling, who knows. I will know monday. But it's still painful. My dentist just really didn't want to extract this tooth. Because on x ray the tooth looks normal to them and they even opened it up to see the roots!!! No decay. But why the pain? My hypothesis, I let the impacted wisdom tooth grow for too long, it changed the entire positioning into my tissue of where the roots should be sitting inside there. That's why it feels too big to sit in my mouth. The tooth feels like it's in a vice grip being squeezed. So if they end up having to take the tooth out anyway. That means I was right all along since I got the x ray and started the process march 21st. After my epidural ended my back pain. Had tooth 1 extracted on april 7th and begged they take out tooth 2. My dentist said no. Just pray for me that all this pain wasnt for nothing because I'm already missing 2 molars on my bottom set, one on each side from a bmx bike accident from when I was a child. I dont want to lose anymore teeth. But at the same time. I'm ok if they have to pull it as long as the pain stops. Life is crazy. Gives us all these trials and tribulations. It's a test from god. All the shit you went through has made you stronger. Mentally. Maybe not so much physically but mentally I can imagine you're very tough. Very strong. I saw your other video about dana or debra who was condescending at church. I'm glad that was resolved. You're not some mentally handicapped person because you had to have a trach and vent. Your quality of life now is better and I hope to get my life back as well because I want to get back to work. I've been putting off my health among other things for 2 years! It's only the last 5 months I've taken charge. But for 1.5 years I mean I got x Ray's and mris and all that. But I had to change insurances before I could see competent doctors which was expensive for me but oh so worth it and unfortunately I cheaped out when it comes to dentistry!@ and I saw some really lousy dentists. Just look them up on yelp, look up doctor boudaie family dentistry in Burbank ca. All 1 stars. They switched me in january of this year without me knowing. I had a pretty good dentist before. I was a hustler and shady as shit. But a good dentist. I'd choose that over nice guy dr Brodaie who doesnt know which course of action to take. Ugh sorry end rant.
Wow! I am so sorry you have had to go through so much. How frustrating and heart-breaking. I cannot imagine the pain! I hope you are able to get everything sorted out quickly. I hope you soon are out of pain and on the road to better health.