Trach Tubes, Ventilators & medical challenges are my life! I love to share info I have gained and tips and tricks which are helpful. I have been using a ventilator since 2016 and got my tracheostomy tube in 2017. Having chronic medical conditions such as Mitochondrial Disease, postural orthostatic tachycardia syndrome, mast cell activation syndrome, etc., keeps me at home and in bed most of the day. Despite all this, I continue forth with a cheerful heart and always looking for the good in everything. May this channel be a blessing to others.
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Girl, you can Still win Beauty Pageants (Very Nice Picture), and your n*pple story reminds me of the Seinfeld “Christmas Card” episode 😂😂
Your shared knowledge and kindness is truly a blessing. You empower, improve, and save lives. Thank you 💛
Thank you so much.
How can I fix high carbon dioxide levels it is causing me the fullest anxiety and depression out of no where and I have 4 children to raise so any advice would be a blessing!
Thank you for sharing this with me. You really need to have a medical investigation as to why you are having your symptoms. If you can figure out the issue, you may be able to treat the underlying problem or the medical issue. For example, if your throat is collapsing during sleep, positive pressure ventilation such as CPAP or BiPAP can be used to help keep the airway open. If your throat is narrow, a stent can be used or even minor surgery may be needed to widen the throat. These issues can be investigated by getting a sleep study, having lung function tests, having imaging of your throat and airways, etc. I am sorry I cannot be of more help. You really need this matter evaluated by a medical professional.
They told me I had anxiety out of no where after experiencing throat problems and not being able to breath head pain ect and then attacks I thought were stokes been trying to figure it out for years now please help if you can with any advice!!!!
Thank you for sharing. I am sorry you are going through so much. Have you ever had lung function tests or a sleep study test? If you have not, please ask to have these tests performed. When doing the sleep study test, ask for your carbon dioxide levels to be measured. Also, have you had your throat problems investigated? Have they done an endoscope down your throat or imaging of your throat?
Ever struggled with having a doctor seeing you when going to the Emergency room for having issues with the trach. ? Ive had problems twice where they have had me wait a day or 2 😭 wish they would help alot more faster
Hello. Thank you for sharing. I have never gone to the emergency room for issues with my trach. I am sorry you have had to wait so long. I cannot imagine everything you have gone through. I would guess the hospital did not have a specialist available who was familiar with trach tubes. I would guess you had to wait until the appropriate specialist was able to see you. And unfortunately, that was a day or two. Other people with trach tubes have expressed this same experience (i.e., waiting a day or two to see a doctor in the emergency room). Do you have a respiratory therapist or a nurse you can call when you have issues with your trach tube? I have a respiratory therapist with my medical equipment company. She can usually trouble-shoot issues which arise or if needed, call ahead to the emergency room and let them know what care is needed. Since specialists are not always available, many times a respiratory therapist can assist with trach tube issues in the emergency department. A woman I know who has a daughter with a trach often requests to see the respiratory therapist in the emergency department if there are issues with her daughter's trach. This often saves a lot of time because the respiratory therapist can usually figure out the issue and suggest the care needed to the emergency department doctor. Usually, emergency room doctors listen to and take the advice of respiratory therapists.
@LifewithaVent thanks for replying. It's pretty hard to get assistance in my area since I live in a very small town and the hospital here always ends up sending me somewhere else. I have to drive mostly an hour for my Dr visits and to a hospital to get better ER assistance. I can't even call an RT or nurse to do homecare. Only person that comes home is the one that checks that my Vent is working properly and that's pretty much it 😭 wish it was alot easier
هل صاحب القصبة الهوائية يستطيع الأكل من الفم وخاصة الأطفال الرضع
يحتاج أي شخص يستخدم أنبوب القصبة الهوائية إلى تقييم البلع من قبل أخصائي طبي. إذا اجتاز المريض اختبار البلع ، فيمكن للشخص أن يأكل عن طريق الفم. إذا لم يجتاز الشخص اختبار البلع ، فلن يتمكن الشخص من تناول الطعام عن طريق الفم وسيحتاج إلى أنبوب تغذية. Anyone who uses a tracheostomy tube needs to have his swallowing evaluated by a medical professional. If the patient passes the swallow test, then the person can eat by mouth. If the person does not pass the swallow test, then the person will not be able to eat by mouth and will need a feeding tube.
@@LifewithaVent شكراً لك ولكن كيف يكون تقييم البلع عن طريق من أي الطبيب بلضبط أنا ابنتي ثلاث سنوات ونصف تشرب الحليب فقط لم تتقدم في الوزن الذي تحتاجه للعمليات الجراحية وانا مستاء هنا عندنا لايوفرو لك الحلول يتروكوك تعاني بمفردك دعواتك لها
@@sidosidosido5540 يمكن إجراء اختبار البلع بواسطة طبيب الأذن والأنف والحنجرة أو معالج النطق. أنا آسف لأنك وابنتك تمران كثيرًا. كل التوفيق لكما. A swallow test can be done by an ear, nose and throat doctor or a speech therapist. I am sorry you and your daughter are going through so much. All my best to you both.
What's the safest material for a tracheostomy tube?
Metal, silicone and plastic are all great materials for tracheostomy tubes. Each has its positives and negatives.
@@LifewithaVent Do you have a low volume or high volume cuff?
Sorry, I don’t get my money’s worth on these short ones 😅😅 - when I was a kid there was this older lady on my block who had a metal Trach that looked like that one - she had to cover it with her finger in order to talk, and She Still Smoked! 🧡❤️🩷🙏🙏🙏
Thank you for sharing. Don't worry. Next week's video is longer.
From where i can find speaking valve?
In the USA, we get speaking valves from medical equipment companies or pharmacies. Please ask your doctor for a prescription for the speaking valve and present the prescription to a pharmacy or medical equipment company. If you live outside the USA, you can try purchasing a speaking valve from this person on eBay. I do not know the person. I have never purchased from the person. I just see the person will send items internationally. Here is the link: www.ebay.com/itm/305667252980?mkevt=1&mkcid=1&mkrid=711-53200-19255-0&campid=5338678874&toolid=20006%26customid%3Ds%253AGS%253Bgc%253A5c85bf1068f212f0c2f1d9b80dde134e%253Bpt%253A1%253Bchoc%253A1&customid=s%3AGS%3Bgc%3A5c85bf1068f212f0c2f1d9b80dde134e%3Bpt%3A1%3Bchoc%3A2&msclkid=5c85bf1068f212f0c2f1d9b80dde134e
Good to know! Thank you
Thank you for watching.
Did you ever have an oral intubation tube? What was that like?
The only times I have been orally intubated were for surgery before I have a trach tube. I do not remember the process because the tube was inserted and removed while I was under anesthesia.
Great info. Hope I never need a trach. But great info..love you
Thank you for watching.
I have chronic UTIs and wound infections I am paralyzed from the neck down I almost died from this infection just this week I have been trying to get my medication for about a month he kept wanting prior authorizations from the insurance right now I still have not got my medication and being paralyzed from the neck down and bedridden it is hard for me to just go to the ER have to call a ambulance and have them take me to the hospital it's very painful they don't make a gurney that fits me properly because I have severe muscle contractions where I'm stuck in the fetal position it is so frustrating to get the doctors to get their act together to prescribe the right dosage and the right amount I should be on it for at least 6 months straight to cure the infection I take 4.1 mg of IV infusion the medical industry is completely corrupt it's like there trying to kill people
Thank you for sharing some of your story with me. I am so sorry you have gone through so much. I cannot imagine everything you have endured I hope you are able to soon get your medication.
@@LifewithaVent I was finally able to get some medication and there is still working on getting me a new medication that insurance will approve I will give you the name of it when I get it it might help with you as well and other people dealing with the same situation
Thank you so much. I appreciate the update. I am so happy to hear you were finally able to get some medication. I hope you are able to get the new medication too. I hope you are soon on the path to better health.
I'm so sorry 😢 4:01 deepest condolences 🙏🏼
Thank you so much.
I won't go to hospice myself too.. I'd go for palliative care, but stay home with my family... I have medical marijuana which is good relief... 2:23 i do not know why is this like This..i got NG.. getting PEG soon..my reasons to not go to hospice is different thsn your reasons, may God bless us with all of us suffering from degenteive diseases.
Thank you so much for sharing.
I've been watching your videos for months now. Thank you so much for sharing your, sometimes horrible but always riveting, stories (like the one with the doctor who tried to kill you). I don't have much to say by way of a comment, except that I just want to hug you, and I'm so sorry for the things that happened to you. The pervading feeling of being left alone with your problems; of people not caring to even inform you they have stopped practicing… that's all too familiar, and it's depressing. Nobody should be subject to such treatment, let alone "a seasoned patient" like you, who needs extensive care.
Thank you so much for all your kind words and support. I really appreciate that.
This is a really good rundown. Very clear and professional explanation.
Thank you.
Why does your voice sound robotic? I noticed that it doesn't sound like that in your early videos. 😊
Thank you for sharing. I have a progressive medical condition. My ability to breathe on my own has greatly decreased. I speak the way I do because I have to wait for the ventilator to give me a breath. I used to be able to speak over the ventilator (i.e., speak when the ventilator was not giving me a breath), but now it is extremely hard to do so. Some days, I am very weak and can only speak a few words.
@@LifewithaVent thank you for sharing
Here is something you can't understand
Thank you for sharing.
You are a hero on earth ❤ I keep getting on and off your channel..I honestly feel ashamed of how much you can smile through so much pain... I'm told repeatedly that I'm crazy squeaky fun 😂 but I'd rather be remembered as cynical 😂 I'm currently battling depression and anger issues..maybe mainly due to being a single mum that my life turned 180 within a few years.. I'm still not diagnosed with MiTo but I'm suspected to have MNGIE but tests are lengthy and drs are skeptical 🧐🤨😢😢 I've subscribed again because I need to lean on you for good influence.. I can barely sit at this time..I have various diseases and symptoms.. My genetic testing is still in February.. NG tube failed now waiting PEG the appointment was pushed back and my weight keeps declining Hugs 🫂🫂🫂🫂🫂🫂🫂🫂🫂
Thank you so much for sharing some of your story with me. I am so sorry you have been through so much. I am sorry your appointment was pushed back and your genetic testing is in February. I hope you soon have answers. Thank you for all your kind words.
Thank you for the information I was u aware
I am glad it was helpful.
I think a very short haircut will look fantastic on you, just a little bob that an inch or two down from the chin.
Thank you so much for the suggestion. I really appreciate it.
I saw that you were drinking some soup on other videos, I hope that you can eat occasionally at least. My heart is with you fighter ❤
Thank you so much. I try to drink liquids, but some days my pancreas does not tolerate liquids.
I’ve been in KZread jail twice this week, so I’ll type this in an odd way……. Hospice keels people
Thank you for sharing. I had no idea KZread had that. I have heard of people on FB going to the unwanted place of confinement, but I did not know KZread had such a place. I appreciate you taking a risk to leave me a comment. That means a lot to me. All my best to you.
I had the same symptoms as after 1 year of chronic work stress. I had gut issues, hypertension, leg cramps, restless leg, spasms, muscle fatigue, lethargy, breathing episodes and bells Palsy where half my face was paralyzed. Doctors couldn't help. So, I did my own research to save my life. I decided to heal my gut, mitochondria, and nervous system. First, I quit the stressful job and eliminated all stress. I ate an anti-inflammatory diet and supplemented. After 1-2 months, all symptoms were gone except occasional breathing episodes. For some reason, electrolytes would help. It took a few more months of sticking with my self treatments until the breathing episodes went away. Its been 2 years now and im mostly ok. I do get a little fatigue at times but I have past menopause so maybe its related to that but it could be from my past health issue.
Thank you so much for sharing some of your story with me. I am sorry you went through so much. But wow! I am so happy you were able to find ways to improve your health. That is wonderful! I hope you continue to have good health. Thank you so much for sharing this with me. All my best to you.
I want to encourage you to consider palliative care for pain control because you are in that awkward spot of being insanely high maintenance and subsisting on that high maintenance. I'm not being mean, there were conversations had about sending me for terminal sedation but a hail Mary surgery bought me time. Palliative care made suffering this in between living and dying easier which made fighting to stay alive doable.
Thank you so much for sharing. I appreciate all the insight. I am sorry you have been through so much. All my best to you.
Cancer you can get it..
Thank you for sharing.
My father in law was only on hospice for two weeks before passing from late stage dementia my dad was on hospice almost a year before passing my sister and a brother both passed from cancer both about two weeks all what made them go quickly was they give them a lot of morphine that keeps them knocked out and your right malnutrition I call it starvation all were under 100 pounds when passing. It’s sad because of the way people abuse pain meds people like my loved ones can’t get the meds they need until hospice and then it’s just to keep so much morphine in the so they stay unconscious until death not eating the whole time. It’s a jacked up society and system.
Thank you for sharing some of your story with me. I am so sorry you have been through so much. I cannot imagine everything you have endured. May your loved ones' memories be blessings.
Who the hell approves this kind of health care? The industry needs a big shake up and restructuring. NHS is not much different. Diazapam and morphine for elderly and terminal covid patients. Sanctioned euthanasia and no one is guilty or responsible. Media buried it. Disgraceful
Thank you for sharing.
Hi! I just came across your channel and I think your resilience is amazing. Since you expressed your hope for other treatments in the future, I would like to, really respectfully, say something about a form of treatment, rather controversial, but I hope it doesn't hurt to sugest. In Brazil, where I live, though there's also some controversy, there are homeopathy treatments available in the best medical universities of the country (USP, UNIFESP, etc). I am aware it is not regulated or practiced in many countries like the US, but it is in others such as Germany and Brazil. Five years ago, my father has recieved a fairly early diagnosis of amyotrophic lateral sclerosis (ALS) by renowed doctors (who confirmed there was no chance of a misdiagnosis) and, since there isn't any hope with traditional medical treatments, he also consulted with a renowed homeopatic doctor who is also a professor and specialist in his disease. My father fully recovered and is thriving five years later - though I am NOT claiming it's a miracle cure and will work for anything and anyone. There is also veterinary treatment available at the best vet school in our country (USP). Anyway, I am aware there are studies denying it's effectiveness, I know I am just a stranger on the internet and won't be offended if you don't agree (I didn't think it could help him either). Also, obviously traditional medicine is no villain and I make use of it everyday for my own chronic issues. I honestly just wish you the best in your own journey. Excuse my English if I made any grammar mistakes.
Hello. Thank you so much for sharing some of your story with me. That is amazing. I am so happy to hear your father is fully recovered and thriving. How wonderful! Thank you for sharing all this information with me. I really appreciate it. I will look into homeopathy treatment. Thank you so much for your kindness. I appreciate you taking the time to write me this information. Your English is excellent. All my best to you and your father.
Thank you so much too. I was a little worried my suggestion would bother you. I'm binge watching your channel and learning a lot from you! About how to cope better with life difficulties and also about medical issues. So you are right at thinking you can still help so many people despite not becoming a doctor, but I really wish you could become one, you'd be the best. You inspire me. Have a great day and I wish you succes in whatever path you are going through!
@@maple-v2v Thank you so much for your kind words and for all your support. I really appreciate that. Please always feel free to share information or leave comments or ask questions. I always am thankful when people take the time to converse with me. It keeps me motivated, and as with your previous comment, it allows me to learn something new. Thank you so much for everything! All my best to you.
If you sustain your life with TPN and a ventilator that’s your choice, why you cast Hospice in a negative light is beyond me.
Thank you for sharing.
Thank you for having the personal informative videos. I needed a refresher on some trach care and suctioning and this was wonderful. You have a great way to captivate and connect with your audience!!! God Bless You Always!!
Thank you so much.
Geez you rock that Passy-Muir valve!!!😮
Thank you.
Try Palliative care.
Thank you for sharing.
i hate doingthem itshard to not get any onyourclothes
Thanks for sharing.
Why are you talking like that?! 👀 and your pronunciation is weird, too 😬👀
When on a ventilator it is difficult to speak and breathe at the same time. She speaks well considering that.
Thank you for sharing.
@@carolehamm1674 ohh I see. Thank you for clarifying that! 🙂
Good topic to talk about just do it by talking normal...🙄
Thank you for watching.
Her medical apparatus affects breathing/ speech.
@@cynthiaholland13 Thank you for explaining. I appreciate that.
Thanks for sharing. I wish there was a better option for your care.
Thank you so much.
It is not true that a doctor must say a person has 6 months or less to live in order to go on hospice. All a patient has to do is refuse to go to a hospital. My brother had no terminal illness but was tired of going to the hospital, so he went on hospice, which was the best option for him. Also, patients can come off of hospice at any time and go back on. A neighbor found out that hospice was a godsend to him and kept him comfortable. The nurse is available 24/7 and knows exactly what to do.
Thank you for sharing. I appreciate the insight. I do not know which country your brother lived in. So it is possible your brother was on hospice if he did not live in the USA. Different countries have different criteria for hospice eligibility. (My apologies. I did not clarify in this video that the six months or less to live was hospice criteria for the USA. I sometimes forget my audience is international.) In the USA, a person can only be enrolled in a hospice program if a medical provider believes the person has six months or less to live. As quoted from Cleveland Clinic: "Healthcare providers use Medicare guidelines to determine eligibility for hospice care. According to Medicare, you’re eligible for hospice if your life expectancy is six months or less if your illness were to run its natural course. Providers recommend hospice when treatments to cure your condition are no longer beneficial, and providers don’t expect your condition to improve." Here is the website if you wish to learn more about hospice in the USA: my.clevelandclinic.org/health/articles/21673-hospice If your brother lived in the USA, it is possible a doctor may have certified he had six months or less to live in order to qualify for hospice. If no doctor certified he had six months or less to live, your brother was most likely not on hospice. He may have been on palliative care. (Many people often call palliative care hospice, but they are different programs with different eligibility criteria, but they both aim to provide comfort care to the patient. In palliative care, a person can choose to forgo any additional testing or treatment for his medical issues.)
I thougt hospice and palliative care goals were exactly to ease the suffering due to dispnea, malnutrition, vomiting, pain that do not respond to other treatments anymore. Obviously palliative care cannot treat the cause, but try to ease these symptoms with different combinations of treatments, inclusing deep sedation, because patients are struggling mentally too, they cannot sleep, move, talk etc Plus, palliative care and hospice doesn't meal terminal conditions/finals days. They are made to help in cronic illnesses too. This is because people doesn't know that palliative care or hospice doesn't mean end of life or they only provide relief to patients in their final days. It means ease the suffering when nothing else is enough effective.
Thank you for sharing. I appreciate the insight. My apologies. I did not clarify in this video that the six months or less to live was hospice criteria for the USA. I sometimes forget my audience is international. If you do not live in the USA, then the criteria for hospice may be different. In the USA, a person can only be enrolled in a hospice program if a medical provider believes the person has six months or less to live. As quoted from Cleveland Clinic: "Healthcare providers use Medicare guidelines to determine eligibility for hospice care. According to Medicare, you’re eligible for hospice if your life expectancy is six months or less if your illness were to run its natural course. Providers recommend hospice when treatments to cure your condition are no longer beneficial, and providers don’t expect your condition to improve." Here is the website if you wish to learn more about hospice in the USA: my.clevelandclinic.org/health/articles/21673-hospice In hospice in the USA, a person cannot receive life extending medical intervention. In hospice, a person cannot receive dialysis, invasive ventilation, IV nutrition, and in some programs patients are also denied any form of ventilation (such as CPAP and BiPAP) and also no feeding tube formula. In the USA, palliative care can be started at any time during a person's illness. Palliative care does not mean end of life. However, hospice care does mean a doctor believes a patient has six months or less to live. If you would like more information about hospice versus palliative care, please see the following video: Hospice versus Palliative Care. What is the Difference: kzread.info/dash/bejne/hKhk0Kp_iKevdqw.html
Comoared to so many other countries, the u.s could so much better for people( patients) with complex medical conditions and or cancer etc. I admire this patients resiliency and resistence to go on hospice. Perhaps she can go ob palliative care? My prayers to this brave patient. ❤❤❤
Thank you so much. I appreciate your insight.
Hello! , I have a few questions, my relative is on a ventilator and at the hospital ward they use a transportation ventilator and I am not sure if that’s okay to be used for a long period of time ( 1 month ) and it would be great if you would recommend home ventilators. Thank you so much! ❤❤
Hello. Thank you for sharing. Transportation ventilators can be used for a long period of time. Please make sure the ventilator is connected to a heated humidifier. A heated humidifier is important to prevent the airways from drying out. Home ventilators: Trilogy 100, Trilogy Evo, ResMed Astral, Movair Luisa, Newport HT70 plus, Breas Vivo, etc. There are many home ventilators. The hospital should know which ventilators are available in your area.
@@LifewithaVent Thank you for replying 🥰🥰 this is really helpful ❤️❤️
@@2kool4skool66 You are welcome. I am glad it was helpful.
🫶🏽🫶🏽🫶🏽🩷🩷🩷🙏🏽🙏🏽🙏🏽
Thank you.
Wouldn't it be nice if there was a form of care in between hospice and general care for ppl with a chronic painful illness so you could have access to pain meds and similar care to ppl in hospice? Maybe one day as someone will put together something of the sort.Ppl in chronic pain deserve massages,pain medication,a lovely garden and someone to communicate with as well considering they can't do much and maybe be bed bound but not terminal 🤷🏻♀️
Thank you for sharing. Technically, there is a program called palliative care. In this program, a patient is supposed to have access to pain medicine. However, due to strict pain medicine prescribing laws and restrictions placed on pharmacies, many palliative care programs either do not prescribe pain medicine or only prescribe very low dose pain medicine. If pain medicine is prescribed, the patient may not be able to get the medicine from the pharmacy due to pain medicine distribution restrictions placed on the pharmacy. As I have been told (and other viewers have expressed to me), the general attitude in the medical community is if your have a chronic medical condition and need pain medicine, you need to go on hospice in order to have access to pain medicine.
Thank you for the informational video. You always inspire me with your positive attitude in light of your health situation. Have you considered doing a video on Palliative care? Would palliative care be something you would consider if you are faced with that decision in the future? I am so proud of you and wish you the best. One of your faithful followers and prayer folks-Take Care, God Bless Russ
Thank you for all your kind words. I have a video on hospice versus palliative care, but perhaps I should just do a video on palliative care. I have tried to go on palliative care, but it seems there are no palliative care doctors in my area. Thank you for all your support. I meant to respond to your email tonight, but I am out of energy. I hopefully will respond tomorrow. Have a great night.
That's okay when you feel up to it, always glad to hear from you God Bless
Thank you for your kindness.
Thank you for sharing your thoughts and insights! You help with understanding, thanks! You are making a difference!
Thank you so much.
Hospice told me they would not buy formula for feeding tubes as it's considered life support. My husband has severe dysphagia and would not be able to be alive for very long on hospice either. He is also on oxygen. Though low it keeps him pretty stable. I do think the air compressor humidifier he has cuts down on his ability to exhale (she has a video about cpap that she explains this) The home health nurse we had for respite mentions hospice every time she comes over.
Thank you for sharing. I am sorry to hear about the challenges your husband faces. I am glad you know what will and will not be available on hospice care. All my best to you and your husband.