How to Sleep Connected to a Ventilator. 5 Tips! Life with a Vent
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- Опубликовано: 3 авг 2024
- When you need a ventilator such as CPAP, BiPAP or mechanical ventilator to breathe, one common concern is how do you sleep being connected to a machine. While sleeping with a ventilator is little bit different, it is not uncomfortable when you make a few changes to your sleeping habits. Join me this week as I share some tips and suggestions on how to sleep when connected to a ventilator. #lifewithavent #sleeping #ventilator
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Hi ventilator lady (please forgive me I cannot see your first name anywhere) I am from the UK,I came across your video's by accident & I love the other channel about God!
When I was 20 I got kicked in the head by a cow,it was a dairy farm,I woke up 3 days later from an induced coma paralysed from the neck down! I had a trach in & had a ventilator breathing for me so I was unable to talk! I thought my life was over,I prayed to God to either let me go or help me through this!
So for the first few months the machine did all the breathing,I started to get movement back in my arms & legs! But I kept thinking the vent would be for life! But each day for a few minutes the doctors tried getting me to breathe on my own! But for nearly a year I needed the vent at night to breathe for me! But during the day I only needed it when I did too much exercise!
I had to learn to walk & talk again! After 18 mths I went home & slowly got back to work!
When covid hit 2 yrs ago I was told I was at risk & to stay at home! As before all the covid jabs if I caught covid the doctors said I would have to have a trach & ventilator again as my chest muscles would be weak! But so far I only needed a tiny bit of oxygen at night,
I have so many questions would it be ok to email you? I am profoundly deaf with sight issues & have an indwelling Foley catheter for life as my bladder has failed!
I am in awe of you,always smiling! I remember all that tubing! What I was scared about when sleeping was pulling the hose off & dying through lack of air!
If you don't mind me asking do you use a wheelchair full time with your other problems? We only ever see the top half of you,I am glad your mum does so much for you! It can't be easy having a feeding tube! But thank God your still with us! May I say you are very pretty & I love the way you do your hair! It can't be easy when you need to go to the dentist I always try & swallow!
Sorry for rambling on I have a form of autism which means I write & write as I find it hard to explain stuff!
At least the ventilators are smaller now & less bulky trachs too! So you now have a fan in the UK,god bless you real good,best wishes from Barry 💗💗💗
Hello. Thank you so much for sharing some of your story with me. It is quite incredible everything you have gone through. You have made a remarkable recovery.
Thank you also for all the kind words. I really appreciate them. Yes, please feel free to email me. My email address is: life.with.a.vent@gmail.com
It takes some time to get used to it, but the relief of getting a full breath is worth it! Thank you as always
Thank you for sharing.
That is what I said too and it just takes time getting used to it but it is worth it when you are getting a full breath so you are right about that too.
@@LifewithaVent Yes it just takes time to get used to it and it was what I said about it too.
I dealt with apnea thanks to abnormalities in my throat since my adolescence, not knowing what it was until being properly diagnosed... when I was 44 years old!
I've never had such a good night's sleep - although it took a while to get used to sleeping with it.
These are great tips - thank you!
I am sorry it took so long to get diagnosed. I am glad you are now able to get a good night's sleep. Thank you for watching.
Thanks for this information. My adult daughter will only sleep on her side with her back towards the ventilator she also always hold the tubing all night pulling it forward. She has very short arms because she is only 3 1/2 feet tall (dwarfism). When she let go of the tubing it falls on the floor several times at night. She won't tighten the connection even in the daytime because she get very high anxiety if she can't disconnect to go to the bathroom or suction herself fast enough. I am going to try putting the ventilator set up in front of her at night and see what happen. It will be near a window hoping it won't disturb the neighbor very much they already hear the machine because of the repeat beeping noise. I also need to move everything back in the daytime, so she doesn't have to walk (very difficult) this opposite side of the bed to get reconnect. She still using the LTV and the water chamber on a IV pole which is very heavy, but I like your ideal very much I don't know how long I can move things around every day. I knew it had be something that is better. With the change she will most likely turn to face the machine which is very hard for her to move herself around and because she doesn't like changes. Yes, dropping the tubing all night is a big problem for me and her because I have to get up and pick it up. Thanks for all your great ideals.
Thank you for sharing. I hope you find a setup which works well. As for the tubing dropping to the floor, have you ever tried a ventilator circuit support arm? This device can attach to the ventilator or the IV pole. The arm helps support the ventilator tubing. They use this device in the hospital. It helps prevent the ventilator tubing from dropping to the floor. All my best to you and your daughter.
Hello! Your strength, wisdom and positivity are inspiring me to keep pushing forward.
If it's okay, can you take a few minutes to share your advice?
I've had severe sleep apnea my whole life, which got worse in my 20's. I was told I snore a bit but i didnt even know what sleep apnea was until i was 20 let alone know how life threatening it is. I was lucky enough to actually sleep like a normal human being for two days (ten years ago) to realize how sleep deprived ive been my whole life.
So ever since then, especially in the last 5 years, ive been getting all kinds of surgeries and treatment to fix my SA, all to no success.
My last resort was to get a trach. A big move, everyone advised against it but i knew it had to be done.
I got one last week and it did improve my sleep a little bit but definitely was not in the uninterrupted, optimal zone.
I knew my abnomral, forward cervical curvature (caused by SA and also made SA worse) and small jaw made my upper airway collapse in resting default state and i always have to actively flex my throat area like a frog to breathe.
This is tolerable when im awake and conscious but when i sleep, i guess i just stop breathing and SA is much more severe than usual cases. I believe it could finally work if i had some external forces that "breathe" for me, while i sleep.
So watching your videos, im thinking maybe the best solution for now, before taking on any more structural surgeries, is to use a ventillator thru my trach. My questions are
1. What was the insurance process like getting a vent? Any brand and model you recommend?
2. Is small trach hole big enough for an effortless, relaxed breathing? It baffled my mind how people are able to breathe thru an essentially a small straw. My SA is caused by airway obstruction and tiresome breathing activities and trying to breathe thru a small straw (6mm diameter) doesnt seem like the a strong solution. I would think bigger hole the better, but it seems that trach tube doesnt get that much bigger, with biggest shiley inner diameter being (~9mm). I would think a much bigger hole would be necessary to remotely have a relaxing breathing. But im wondering if a vent doesnt require a big hole?
3. You mentioned that bipap didnt work for you at one point. Just wondering in what way a vent would work and not bipap bc its not exactly clear how they work different? Would vent be a more promising choice for me? Bc i need an active external breathing source
Thank you so much for taking your time and i look forward to hearing your expertise.
Hello. Thank you for sharing some of your story with me.
1. For insurance, the way I qualified was by my diagnosis of neuromuscular disease and very poor results on lung function tests. I was able to get a BiPAP machine. When I was still struggling to breathe due to extremely high carbon dioxide levels, I was able to get a tracheostomy tube and be started on invasive ventilation.
If I was to qualify with my insurance with sleep apnea for a ventilator, the following criteria must be met:
You must have a sleep study which includes an apnea-hypopnea index (AHI) or respiratory disturbance index (RDI) of at least 15 events per hour, or five to 14 events per hour combined with other documented symptoms (like heart disease, hypertension, or excessive daytime sleepiness).
A three month trial of a CPAP machine is given. The doctor must document that the CPAP machine is used for at least 4 hours a night. If the CPAP machine does not improve sleep, an auto CPAP can be used. If auto CPAP does not improve sleep, a BiPAP machine can be used. If after using BiPAP and advanced BiPAP settings, a tracheostomy tube and invasive ventilation can be used.
I did not have a choice when I got my ventilator. My medical company only had Trilogy 100 ventilators. These ventilators are no loner being sold in the USA. I am not sure if medical companies are still issuing them or if they have changed to a different manufacturer. I am still using the Trilogy 100. However, I will probably change to a different ventilator in the fall of the year.
2. The size of the tracheostomy tube will be dictated by the size of your trachea. You cannot use a tracheosotmy tube which is larger than the diameter of your trachea. Larger tracheostomy tubes are longer in length. If the tracheostomy tube is too big, it will touch the carina and cause out of control irritation and coughing fits. Also using a larger the tracheostomy tube, will make it more difficult to speak as less air is able to pass through the vocal cords.
When using a ventilator, CPAP or BiPAP, a smaller tracheostomy tube can be used. The machine simply uses more pressure to force the correct amount of air into the lungs. If you are concerned about the size of your tracheostomy tube, please discuss this with your doctor or respiratory therapist. They should be able to guide you on what is the best size trach tube to use.
3. I have a neuromuscular disease. My breathing muscles are extremely weak. With BiPAP, a person still has to use his breathing muscles to breathe. Since my muscles are very weak, extremely high pressures had to be used by the BiPAP machine. This forced air into my stomach. Air was not going to my lungs, and I became very sick.
Because I was not able to properly breathe in, my body was not able to properly breathe out and get rid of carbon dioxide levels. My carbon dioxide levels became dangerously high. BiPAP could no longer sustain my breathing needs. I have to get a tracheostomy tube and use full respiratory support from a ventilator. The ventilator does all the work of breathing for me.
A BiPAP requires a person to use his breathing muscles to facilitate breathing. If you cannot use your breathing muscles (for example those with paralysis or muscle weakness), the person will die trying to use BiPAP. Full ventilator support is needed in these individuals. With ventilator support, the ventilator does all the work of breathing. If the person does not take a single breath, the ventilator will push air in and out of the lungs.
If you have issues breathing just with the trach, it would be wise to start with CPAP and see if it improves your breathing. If it does, this is all which will be needed. If it does not, BiPAP is most likely all which will be needed. Since you can breathe on your own, I would not think you would need to use full respiratory support. Using CPAP or BiPAP with your trach is mostly likely all which is needed.
For better answers to your questions, it would be best to discuss this all with your doctor or a respiratory therapist. They would better be able to evaluate your condition and be able to advise you based on their experience.
@@LifewithaVent Thank you so much for your help! May I ask one final question? How's your sleep quality/fatigue being on vent vs. natural sleeping? Surely, nothing beats natural breathing but is there a significant difference regarding your energy level, mental clarity, etc? Thank you.
@@testing6753 Great question. Before starting on a ventilator, my sleep quality was terrible. I constantly had headaches, and I was extremely fatigued. My mental clarity was terrible. My life is so much better now that I have a ventilator. With a ventilator, I get much better sleep, I have more energy and I have much better mental clarity.
I always sleep on an incline because it helps with my Breathing and helps the secretions drain better too.I think that it would help too if you can lay on your side so you have more Tubing length that way. I did have trouble sleeping with my Head elevated like this all the time but I am used to it now and it just takes me longer to fall asleep.
Those are some great tips. I am glad you found ways to best accommodate your needs.
@@LifewithaVent You have great tips too and I think that you just learn what works by doing things like with Tubing length and positioning but it all makes a big difference I found out.
@@pagzplay That is great advice.
I finally got a mask to use with my concentrator instead of the cannula and had a difficult time sleeping last night unless I was on my back all night.
I am sorry you had a difficult time sleeping. I hope you are able to find a position which is comfortable.
Thank you dear for this video.. My father is on Tracheostomy and Ventilator. The problem we face is frequent high breathrate. We use Trilogy 100 and set Respiratory Rate to 15, inspiratory time to 1.3. He is on S/T mode with AVAPS feature on.. but 80% of the time my father's breath rate is above 20. Only during deep sleep it goes to 15,16. He is using ventilator since 8 months. I'm not sure why and how to rectify this. Is only calming the mind and clearing mucus through Tracheal suction a way???? I don't know, we are trying these.... i have set high respironics alarm to 45 BPM, other wise the machine will be alarming all the day..
Hello. Has your father had his carbon dioxide levels checked recently? He may be breathing fast in an attempt to get rid of excess carbon dioxide. He may need the settings on the ventilator changed. Also, the tracheostomy tube can also cause an increase in breathing rate. The tube may be irritating the trachea. Have you tried using a different tracheostomy tube?
@@LifewithaVentvery good input, I will get ABG test done. We have placed Bivona Fome-cuff trachtube recently. This issue is there from the start, even when my father was on NIV ventilation, a year ago. He is ALS patient. And even if he moves little, then breath rate and pulse increases. He can be off ventilator for 10 minutes.. when he is off ventilator also breathrate would be high. Also he can't swallow, so when saliva gets accumulated we do oral suction. So breathrate increases due to excess saliva and mucus in lungs too.. still I want to know if there is something else I can do. Even in sleep his breathrate is 20.
@@vijayak7308 Has he had a workup of his heart? Heart issues can cause an increase in breath rate. Pulmonary hypertension can also cause an increase in breath rate.
@@LifewithaVent we recently did 2D Echo and ECG. All is fine. Due to breathing issues his pulse and breathrate vary. He is has lot of phelgm issues. We nebulize 5 times a day. Also do Ambu couple of times. Secretions are common for ALS patients. No fever and vitals are fine. I'm yet to get ABG test done. Hope that it gives insight
@@vijayak7308 I hope you are able to find an answer.
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