I found your channel while trying to learn about ventilators and the tracheostomy. My Mother is in on dialysis with a trach after having covid and having issues waking up. She is fighting hard, and I believe God is going to bring her out of this, it might be a long recovery though and your channel has helped me learn so much. Not to mention you are absolutely gorgeous girl! Your smile is so pretty and it literally calms my nerves to hear you talk and explain everything. I pray God blesses you more than he ever has! Curious, would you ever consider doing some bible study topics on your channel? Love ya girl!
Hello. I am so sorry to hear about the challenges your mother is going through. I am praying she will have complete healing. Thank you also for all your kind words. I have another UA-cam channel which is called God is My Strength. It focuses more on God and Bible verses. Here is the link to the channel: ua-cam.com/channels/ga3hZwaMCLMdh1rsVdC_lA.html
Hello, thank you for sharing a day in your life. I have a ileostomy done in 2012. Now I am dealing with pesudo obstructions. Waiting for results on genetic testing. I also have double vision. And prescription eye glasses. With prisms to correct the double vision. They work very well. Possibly prisms could be of help with your double vision? Take care and have a beautiful day. God bless you
Hello. I am sorry to hear about your medical conditions. I have had pseudo-obstuctions in the past and know challenging they can be. Thank you for your suggestion of prisms. I have another UA-cam channel and just released a video about my vision issues. Here is the link to the video if you wish to view it: ua-cam.com/video/ObmlVGfvviA/v-deo.html
Thank you for your videos and giving me hope after a recent emergency trach. You put words and feeling to many things I've felt most of my life. How did you come to be diagnosed with mito disease? I think that is my next puzzle piece. .
Hello. I did research on many different medical conditions, and Mitochondrial Disease kept re-appearing on my radar screen. It correlated well with my symptoms. I presented my findings to my medical team. They agreed Mitochondrial Disease was mostly likely at the root of everything. I did genetic testing.
@@LifewithaVent just wondered do you have to wear oxygen saturation probe or not? The healthcare in America is vastly different from the uk. Also different states have different rules and procedures. Can you walk? Have you noticed a deterioration in condition as got older. Was watching some of your older videos recently. How old are you I mean like 30-39 or 20- 29!etc
@@slong6460 I change out the tubing to my dry circuit. The dry circuit is not connected to my heated humidifier. I place a heat and moisture exchanger inline on my tracheostomy tube to prevent water from possibly entering my airways. I keep the ventilator outside the shower.
@@slong6460 No, I do not wear an oxygen probe. I use a wheelchair. Yes, my health has deteriorated as I have gotten older. I will be releasing a video on 10 October which will give more details about my medical history. I am in my 30's.
Is my Opinion Your routine from the video it looks kind of volatile because you really don't have freedom to go forward in life from what I see on the video. If I was in that situation I can probably say kiss the world goodbye I can't live like that I am sorry for you that's that's crazy
I can imagine your pain. My 2 months old daughter is on ventilator since 27th December 2022 due to less breathing and her body is not responding and she is not gaining weight. Doctors said most likely she has mitrocondria disease but not 100% sure because still waiting for some results.
Thank you for sharing some of your story with me. I am so sorry your daughter is going through so much. I hope the doctors are able to get the results back soon and have a treatment plan for her. All my very best to you and your daughter.
@@LifewithaVent Thank you. As a father it's very difficult to see my child on ventilator. Doctors are not giving any hope and my condition is like everyday someone is hitting me a bullet on my head, my heart beat gets fast and my legs starts shaking when I see her getting seizures. I feel like something will happen to me before something happens to my daughter.
@@user-ns7vj4tz5h I am so sorry you are going through so much. I cannot imagine the heartache and heartbreak you have to endure. Please feel free to reach out to the United Mitochondrial Disease Foundation. They have people who can help you. Their website is: www.umdf.org/get-support/ They also have a Facebook group: facebook.com/theUMDF/ All my very best to you and your daughter.
Thank you for sharing your story and positive attitude!
I found your channel while trying to learn about ventilators and the tracheostomy. My Mother is in on dialysis with a trach after having covid and having issues waking up. She is fighting hard, and I believe God is going to bring her out of this, it might be a long recovery though and your channel has helped me learn so much. Not to mention you are absolutely gorgeous girl! Your smile is so pretty and it literally calms my nerves to hear you talk and explain everything. I pray God blesses you more than he ever has!
Curious, would you ever consider doing some bible study topics on your channel?
Love ya girl!
Hello. I am so sorry to hear about the challenges your mother is going through. I am praying she will have complete healing. Thank you also for all your kind words. I have another UA-cam channel which is called God is My Strength. It focuses more on God and Bible verses. Here is the link to the channel: ua-cam.com/channels/ga3hZwaMCLMdh1rsVdC_lA.html
You are a positive person. Always smiling, grateful and joyful..
Thank you.
I’m praying for you
Thank you.
Hello, thank you for sharing a day in your life.
I have a ileostomy done in 2012. Now I am dealing with pesudo obstructions. Waiting for results on genetic testing. I also have double vision. And prescription eye glasses. With prisms to correct the double vision. They work very well. Possibly prisms could be of help with your double vision?
Take care and have a beautiful day.
God bless you
Hello. I am sorry to hear about your medical conditions. I have had pseudo-obstuctions in the past and know challenging they can be. Thank you for your suggestion of prisms. I have another UA-cam channel and just released a video about my vision issues. Here is the link to the video if you wish to view it: ua-cam.com/video/ObmlVGfvviA/v-deo.html
Thank you for your videos and giving me hope after a recent emergency trach. You put words and feeling to many things I've felt most of my life. How did you come to be diagnosed with mito disease? I think that is my next puzzle piece. .
Hello. I did research on many different medical conditions, and Mitochondrial Disease kept re-appearing on my radar screen. It correlated well with my symptoms. I presented my findings to my medical team. They agreed Mitochondrial Disease was mostly likely at the root of everything. I did genetic testing.
Question do you not have a nurse with you 24/7 as on vent? Who do you live with?
Hello. I do not have any nurses. I live with family. They help with tasks I cannot do.
@@LifewithaVent just wondered do you have to wear oxygen saturation probe or not? The healthcare in America is vastly different from the uk. Also different states have different rules and procedures. Can you walk? Have you noticed a deterioration in condition as got older. Was watching some of your older videos recently. How old are you I mean like 30-39 or 20- 29!etc
How do you shower with a vent?
@@slong6460 I change out the tubing to my dry circuit. The dry circuit is not connected to my heated humidifier. I place a heat and moisture exchanger inline on my tracheostomy tube to prevent water from possibly entering my airways. I keep the ventilator outside the shower.
@@slong6460 No, I do not wear an oxygen probe. I use a wheelchair. Yes, my health has deteriorated as I have gotten older. I will be releasing a video on 10 October which will give more details about my medical history. I am in my 30's.
Wow
Thank you for watching.
Is my Opinion
Your routine from the video it looks kind of volatile because you really don't have freedom to go forward in life from what I see on the video. If I was in that situation I can probably say kiss the world goodbye I can't live like that I am sorry for you that's that's crazy
@@adanamaya2552 Thank you for sharing.
❤
Thank you.
💙💜
I can imagine your pain. My 2 months old daughter is on ventilator since 27th December 2022 due to less breathing and her body is not responding and she is not gaining weight. Doctors said most likely she has mitrocondria disease but not 100% sure because still waiting for some results.
Thank you for sharing some of your story with me. I am so sorry your daughter is going through so much. I hope the doctors are able to get the results back soon and have a treatment plan for her. All my very best to you and your daughter.
@@LifewithaVent Thank you. As a father it's very difficult to see my child on ventilator. Doctors are not giving any hope and my condition is like everyday someone is hitting me a bullet on my head, my heart beat gets fast and my legs starts shaking when I see her getting seizures. I feel like something will happen to me before something happens to my daughter.
@@user-ns7vj4tz5h I am so sorry you are going through so much. I cannot imagine the heartache and heartbreak you have to endure.
Please feel free to reach out to the United Mitochondrial Disease Foundation. They have people who can help you. Their website is: www.umdf.org/get-support/
They also have a Facebook group: facebook.com/theUMDF/
All my very best to you and your daughter.
❤
Thank you.