Hi lovely ventilator lady 💖you think something as important as tubing you should be able to get when you need it as it's a lifesaver in your case! I know very little about modern ventilators as mine was many years ago & not portable,but you think in this day & age they would shrink down the tubing & make it more durable! I often wonder why part of the tubing up to your trach is so thin & the rest is so bulky! Even though it must be 40 yrs since my accident & my months on a ventilator I still have memories of that time & every now & then I have panic attacks in the night thinking I cannot breathe! I later was told it was PTSD I remember laying flat on my back unable to move,in a neck brace & braces keeping my hands open! Each day seemed to drag! The nurse would come and clear the mucus & try & stop me from panicking about not being able to breathe without my vent! After a year when I was finally off the ventilator for good I was still scared that I should have a trach left in & a vent on standby! Since finding your video's its given me peace of mind,God showed me how today ventilators are smaller & more reliable & if I did get covid bad I would not hesitate to go on a ventilator! You seem to lead an active life! I don't know if you walk at all but need a wheelchair full time! But like me with my indwelling Foley catheter that I have for life you seem to have accepted a ventilator as part of your normal life & you do everything without a care giver! God has given you extra time on this earth! The same with me as like you I could still be on a ventilator to this day & maybe once again! If I did I now know a lovely lady to chat too! 💖💖💖
Thank you for sharing all your insight. I am sorry to hear about the panic attacks and PTSD. I cannot imagine how frightening that must be. Yes, God has given both of us extra time on this earth. What an incredible blessing!
@@LifewithaVent I hope you don't mind me opening up about my time on a ventilator,I am a very private person who finds it hard to talk about stuff! I have had people that lets just say get turned on by the thought of a ventilator so I try and be careful with my comments! You may be across the water from me but you know what it like to live with a ventilator,your health issues have been a lot worse than mine! I am profoundly deaf & wear powerful hearing aids! The doctors think my deafness did start from my brain injury! I so wanted to comment before now but I was scared you might think I was one of those weired guys I mentioned! I found it interesting all the equipment you use that makes your breathing better! I have been so tempted to email you but I was worried you would be put off by my PTSD etc! I do get horrible comments about believing in God & how my faith kept me alive! You come across as a kind & caring person! 💖
@@barrytaylorprofoundlydeafi2479 Thank you so much for your kind words. Please feel free to email me or leave comments. I appreciate how you have shared so much with me. It can be hard when people judge you or are unkind. I am sorry you have experienced negative comments.
My mother was on a home trilogy and passed away a few weeks ago. I've been trying to figure out how to donate the supplies. We have tons of dry circuits, hme filters, bacterial filters, inline suction, yankers, inner cannulas (if you're the same size, but we do have a few different sizes that were mistakes), a few replacement trachs (if you're the same size), trach cleaning kits, and tons of saline (a giant bottle and the small pink tubes for the inline suction catheter). If you're needing them, I'd love to send them your way. We seriously got an abundance of them right before she passed and I know my mother would want them going somewhere useful. Or, if you know a place I could donate, I'd love to donate to someone needing them. We seriously have like 20+ tubes and a crazy amount of filters. Let me know and we can talk about it more for sure. I'd love to help in any way possible as your videos helped me prepare for when my mother came home on hospice last December. Oh, and another thing I learned is to always keep the old one just in case, so I'm glad you did as well!!
Hello. Thank you for the offer, but I do not use many of the items. It probably would be best to find someone in your community who could use the items. First option: did you receive the items from a durable medical equipment company (DME) or home health? If you did, you may be able to call the company and ask if they accept donations. My DME accepts donations and passes along the supplies to those who need them. Another option is find out if there is a local ALS group. They also will take donations. A third option is call hospitals or rehabilitation centers and ask if they accept donations. A fourth option: Is there a local Facebook group, next door group or other local online group? I have posted medical supplies on local group pages and have found people who are in need of the supplies. I am so sorry to hear of your mother's passing. I hope you and your family are able to find comfort and peace during this time. May her memory be a blessing.
I have anaphylaxis to a lot of things and worry about getting a trach or just a hole cut. Does it hurt. Do you change your trach both inner n outter cannula yourself?
Hello. The procedure to get a tracheostomy tube is relatively painless. It is more of a discomfort getting used to having a piece of plastic in the trachea than actual pain. Once my body got used to having the tracheostomy tube, most of the time I forget I have it. I made a video about what to expect when getting a tracheostomy tube. The video may be of use to you: ruclips.net/video/lagQjwDXSk8/видео.html I used to change out my inner cannula myself. However, I found I do not like using inner cannulas. So, I no longer use them. I change my tracheostomy tube myself. Here is a video on how to change the trach tube if you care to watch: ruclips.net/video/INUyQcHzCmA/видео.html
@@agatawojciechowska997 The tracheostomy tube is in the throat. The ventilator connects at the tracheostomy tube. The nose is bypassed, but the throat is not.
hey hello! thank you so much for what you do! you are a wonderful soul! big love!! xox
Thank you.
Oh no! That sucks. I'm happy you still had your old one. Hoping you can get a replacement soon
Thank you.
Hi thanks for making these videos, it helps people with similar problems to learn
Thank you for your kind words.
Thank you
Thank you for watching.
Thank. You. For. Sharing....I. Have. A. Trach....I. Do. Not. Use. Heated. Moisture.....My. Moisture. Is. Cool. Moisture..... Stay. Safe.
Thank you.
@@LifewithaVent you. are. welcome.
Hi lovely ventilator lady 💖you think something as important as tubing you should be able to get when you need it as it's a lifesaver in your case!
I know very little about modern ventilators as mine was many years ago & not portable,but you think in this day & age they would shrink down the tubing & make it more durable! I often wonder why part of the tubing up to your trach is so thin & the rest is so bulky!
Even though it must be 40 yrs since my accident & my months on a ventilator I still have memories of that time & every now & then I have panic attacks in the night thinking I cannot breathe! I later was told it was PTSD
I remember laying flat on my back unable to move,in a neck brace & braces keeping my hands open! Each day seemed to drag! The nurse would come and clear the mucus & try & stop me from panicking about not being able to breathe without my vent!
After a year when I was finally off the ventilator for good I was still scared that I should have a trach left in & a vent on standby!
Since finding your video's its given me peace of mind,God showed me how today ventilators are smaller & more reliable & if I did get covid bad I would not hesitate to go on a ventilator! You seem to lead an active life! I don't know if you walk at all but need a wheelchair full time! But like me with my indwelling Foley catheter that I have for life you seem to have accepted a ventilator as part of your normal life & you do everything without a care giver!
God has given you extra time on this earth! The same with me as like you I could still be on a ventilator to this day & maybe once again! If I did I now know a lovely lady to chat too! 💖💖💖
Thank you for sharing all your insight. I am sorry to hear about the panic attacks and PTSD. I cannot imagine how frightening that must be. Yes, God has given both of us extra time on this earth. What an incredible blessing!
@@LifewithaVent I hope you don't mind me opening up about my time on a ventilator,I am a very private person who finds it hard to talk about stuff!
I have had people that lets just say get turned on by the thought of a ventilator so I try and be careful with my comments! You may be across the water from me but you know what it like to live with a ventilator,your health issues have been a lot worse than mine! I am profoundly deaf & wear powerful hearing aids! The doctors think my deafness did start from my brain injury!
I so wanted to comment before now but I was scared you might think I was one of those weired guys I mentioned!
I found it interesting all the equipment you use that makes your breathing better! I have been so tempted to email you but I was worried you would be put off by my PTSD etc! I do get horrible comments about believing in God & how my faith kept me alive! You come across as a kind & caring person! 💖
@@barrytaylorprofoundlydeafi2479 Thank you so much for your kind words. Please feel free to email me or leave comments. I appreciate how you have shared so much with me. It can be hard when people judge you or are unkind. I am sorry you have experienced negative comments.
My mother was on a home trilogy and passed away a few weeks ago. I've been trying to figure out how to donate the supplies. We have tons of dry circuits, hme filters, bacterial filters, inline suction, yankers, inner cannulas (if you're the same size, but we do have a few different sizes that were mistakes), a few replacement trachs (if you're the same size), trach cleaning kits, and tons of saline (a giant bottle and the small pink tubes for the inline suction catheter). If you're needing them, I'd love to send them your way. We seriously got an abundance of them right before she passed and I know my mother would want them going somewhere useful. Or, if you know a place I could donate, I'd love to donate to someone needing them. We seriously have like 20+ tubes and a crazy amount of filters. Let me know and we can talk about it more for sure. I'd love to help in any way possible as your videos helped me prepare for when my mother came home on hospice last December.
Oh, and another thing I learned is to always keep the old one just in case, so I'm glad you did as well!!
Hello. Thank you for the offer, but I do not use many of the items. It probably would be best to find someone in your community who could use the items.
First option: did you receive the items from a durable medical equipment company (DME) or home health? If you did, you may be able to call the company and ask if they accept donations. My DME accepts donations and passes along the supplies to those who need them.
Another option is find out if there is a local ALS group. They also will take donations. A third option is call hospitals or rehabilitation centers and ask if they accept donations.
A fourth option: Is there a local Facebook group, next door group or other local online group? I have posted medical supplies on local group pages and have found people who are in need of the supplies.
I am so sorry to hear of your mother's passing. I hope you and your family are able to find comfort and peace during this time. May her memory be a blessing.
I have anaphylaxis to a lot of things and worry about getting a trach or just a hole cut. Does it hurt. Do you change your trach both inner n outter cannula yourself?
Hello. The procedure to get a tracheostomy tube is relatively painless. It is more of a discomfort getting used to having a piece of plastic in the trachea than actual pain. Once my body got used to having the tracheostomy tube, most of the time I forget I have it.
I made a video about what to expect when getting a tracheostomy tube. The video may be of use to you: ruclips.net/video/lagQjwDXSk8/видео.html
I used to change out my inner cannula myself. However, I found I do not like using inner cannulas. So, I no longer use them. I change my tracheostomy tube myself. Here is a video on how to change the trach tube if you care to watch: ruclips.net/video/INUyQcHzCmA/видео.html
Please explain me the breathing process. It automatic or you still have to breathe with your nose or mouth?
It is automatic.
@@LifewithaVent so you totally bypass nose and throat?
Do you have to do anything at all to take a breath?
@@agatawojciechowska997 No.
@@agatawojciechowska997 The tracheostomy tube is in the throat. The ventilator connects at the tracheostomy tube. The nose is bypassed, but the throat is not.