I've been hospitalized no less than four times so far within two months for pneumonia and other respiratory problems related to my COPD and it really sucks...I'm just waiting to see how long it takes until i end up back in the hospital for round 5.
I realize that because of the tracheostomy and the ventilator, you seem to need intervenous antibiotics a lot, do you think it would be easier if you got a port? I’m thinking that would be less surgeries, and it would be a lot easier on you.
Hello. Thank you so much for your suggestion. I had a port placed in Jan 2020. My vein collapsed which prevented blood from returning to my heart and lungs. It was a horrible disaster. Since then, it has been decided PICC lines are much safer option for me. I now have other medical issues which require daily IV access. I have a PICC line in all the time and get it changed out about once every 14-18 months.
Do you often get pneumonia or was this a rare event? Could you have had the virus covid? I’m on a ventilator, but use a mask and mouthpiece ventilation. I’ve been contemplating the tracheotomy, but I just don’t know if it’s to that point just yet. I just know this face mask is just always in the way and pulling on my face. I have a progressive neurological disorder with respiratory weakness also and 28% lung capacity the last test a year ago. I just feel there are pros and cons and my biggest fear is not being able to talk and I talk A LOT! Haha
Hello. I get pneumonia about once every 6 months. This is due to a chronic bacterial infection I have in my lungs. I acquired the bacteria in 2018 during a hospital procedure. I became mildly sick. I went to the hospital for treatment. They found out I had pseudomonas (a very potent, nasty bacteria), but they chose not to treat me. I was released home. Two weeks later, I was EXTREMELY sick. I was admitted and started on the antibiotic cefepime. Cultures showed the bacteria was resistant to cefepime. The doctors chose to continue giving the antibiotic even though it was not an effective treatment against the bacteria. Skip ahead, the infection was never properly treated. Now, it has taken up permanent residence in my lungs. It flares up about every 6 months. I have known people who have had trachs/vents for 25+ years and they never have had pneumonia. In general, if you had few respiratory infections before getting a trach, you will have few respiratory infections after getting a trach. The best way to prevent infection is to stay out of the hospital. As for talking, it will take some time to learn how to talk with a trach. It took me about a month. I will also say, the sooner you get a trach (i.e., getting a trach when you have more muscle strength/neurological ability) the easier it will be to speak. The longer you wait and the more your health declines, the harder it will be for your body to adjust and retrain itself. As for getting a trach, my one regret was not getting a trach sooner. I was far too sick by the time I got my trach. I did not know that when you have chronic respiratory distress/failure, the heart and other organs are stressed from this imbalance. This can cause your health to decline more quickly. I had a rapid decline with my condition (called Mitochondrial Disease) while contemplating if I should/should not get a trach. Once I got a trach, my health dramatically improved. I got more sleep, I had more energy, my strength increased, etc. If you have not watched the video, I invite you to view my video on my journey to getting a tracheostomy. It might help you. ruclips.net/video/ZFFA928Rqsw/видео.html All the best to you.
@@LifewithaVent yes that’s the first video I watched of yours then it lead me to watch as many as I could before falling asleep! Haha. I have a variant of C.I.D.P. So I’m on Ivig infusions every 3 weeks and I’m quadriplegic, but have more hand function than most, I don’t have coordination or the pinch grasp.. so I’m pretty much paralyzed from chest down. I have the feeding tube from my esophagus being out of sync and my diaphragm is weak. I do see the benefit what you said about getting it sooner than later. I do however know sign language. But no one else does! Thank you so much for your feedback. I’d be interested to know your recovery time from discomfort to when it started becoming less painful. My feeding tube took about 8-9 months before it stopped being painful when transferring. Also.. I see some people have lots of discharge/secretions while others never complain about it. Do you have any knowledge about why some have problems with that and can you tell me your experience? Thank you again!
@@ZombiieLoveQuadCreations Thank you so much for sharing some of your story. It is quite remarkable. My tracheostomy site was only slightly painful. They gave me pain meds in the hospital, and I was really confused because I the pain was very minor. It was maybe a 3 on the pain scale. They discontinued the pain meds because I was not using them. At first, the feeling of having a trach in your airways was more of a discomfort and irritation than pain. It was similar to having a scratchy throat from a cold. If you bump the trach, it will be irritating in your airways and you will cough. This hypersensitivity went away when my trach tube was changed out after a month. There are a lot of different trach tubes. The trach tube when they use when first creating the tracheosostomy is "sturdy". This translates into it being bigger and bulkier. When I got my trach changed out for the first time, my doctor switched me to a much smaller and slimmer trach. The new trach was so much better! The irritation immediately went away. I have had a feeding tube before. Getting a feeding tube is much, MUCH worse. Getting a trach was one of the least painful procedures I have ever had. Secretions: This depends on your airways. Some people have a lot of mucus from their underlying medical condition. If I am sick, I have an increase in secretions. In general, secretions are not a big issue for me. Once a day I run saline through a nebulizer to loosen and break up any mucus. That is all I seem to need to keep my airways clear.
I hate pneumonia.I’m home not feeling well at all and last month I had pneumonia but it was on my left now it’s on my right.I can’t figure it out why does it keep on coming back.I’m very worried because pneumonia took over my mothers life😭
You are one in a million.
Thank you.
I wish you a complete and speedy recovery.
Thanks.
Get well soon hun!
Thanks.
You're very brave and such a positive person. The world needs more people like you. I hope you are well since this video was uploaded, take care.
Thank you for your kind words. I am very grateful to not have gotten over the pneumonia.
Yep, I love her spirit.
Hope you get to feeling better dear. I too have pneumonia with COVID-19.Er placed on oxygen therapy; plenty of meds and an inhaler.
Thank you. I am feeling better. I am so sorry you are sick. I hope you have a fast recovery.
I hope that by God's will, your condition will get better as soon as possible ❤
Thank you so much.
@@LifewithaVent ❤🌹
You are amazing.
Thank you.
I hope that you'll feel better very soon!
Thanks.
@@LifewithaVenti can definitely relate to your situation as my respiratory problems have become pretty bad lately.
@@michaezell4607 I hope you are soon on the path to better health.
My wife is currently on a ventilator currently fully sedated day 10 of being on a ventilator
Thank you for sharing. I hope all goes well for her.
I've been hospitalized no less than four times so far within two months for pneumonia and other respiratory problems related to my COPD and it really sucks...I'm just waiting to see how long it takes until i end up back in the hospital for round 5.
I am so sorry to hear this. I hope you can stay out of the hospital.
Man, I pray that don't. 🙌🙏🏿
I realize that because of the tracheostomy and the ventilator, you seem to need intervenous antibiotics a lot, do you think it would be easier if you got a port? I’m thinking that would be less surgeries, and it would be a lot easier on you.
Hello. Thank you so much for your suggestion. I had a port placed in Jan 2020. My vein collapsed which prevented blood from returning to my heart and lungs. It was a horrible disaster. Since then, it has been decided PICC lines are much safer option for me. I now have other medical issues which require daily IV access. I have a PICC line in all the time and get it changed out about once every 14-18 months.
@@LifewithaVent ouch! I am so sorry, that really bites. I’m glad that you and your medical team have something worked out that works better :-)
@@rubypierce9344 Thank you so much.
May God cure u soon praying for u from Pakistan
Thank you.
Do you often get pneumonia or was this a rare event? Could you have had the virus covid? I’m on a ventilator, but use a mask and mouthpiece ventilation. I’ve been contemplating the tracheotomy, but I just don’t know if it’s to that point just yet. I just know this face mask is just always in the way and pulling on my face. I have a progressive neurological disorder with respiratory weakness also and 28% lung capacity the last test a year ago. I just feel there are pros and cons and my biggest fear is not being able to talk and I talk A LOT! Haha
Hello. I get pneumonia about once every 6 months. This is due to a chronic bacterial infection I have in my lungs. I acquired the bacteria in 2018 during a hospital procedure. I became mildly sick. I went to the hospital for treatment. They found out I had pseudomonas (a very potent, nasty bacteria), but they chose not to treat me. I was released home. Two weeks later, I was EXTREMELY sick. I was admitted and started on the antibiotic cefepime. Cultures showed the bacteria was resistant to cefepime. The doctors chose to continue giving the antibiotic even though it was not an effective treatment against the bacteria. Skip ahead, the infection was never properly treated. Now, it has taken up permanent residence in my lungs. It flares up about every 6 months.
I have known people who have had trachs/vents for 25+ years and they never have had pneumonia. In general, if you had few respiratory infections before getting a trach, you will have few respiratory infections after getting a trach. The best way to prevent infection is to stay out of the hospital.
As for talking, it will take some time to learn how to talk with a trach. It took me about a month. I will also say, the sooner you get a trach (i.e., getting a trach when you have more muscle strength/neurological ability) the easier it will be to speak. The longer you wait and the more your health declines, the harder it will be for your body to adjust and retrain itself.
As for getting a trach, my one regret was not getting a trach sooner. I was far too sick by the time I got my trach. I did not know that when you have chronic respiratory distress/failure, the heart and other organs are stressed from this imbalance. This can cause your health to decline more quickly. I had a rapid decline with my condition (called Mitochondrial Disease) while contemplating if I should/should not get a trach.
Once I got a trach, my health dramatically improved. I got more sleep, I had more energy, my strength increased, etc.
If you have not watched the video, I invite you to view my video on my journey to getting a tracheostomy. It might help you. ruclips.net/video/ZFFA928Rqsw/видео.html
All the best to you.
@@LifewithaVent yes that’s the first video I watched of yours then it lead me to watch as many as I could before falling asleep! Haha. I have a variant of C.I.D.P. So I’m on Ivig infusions every 3 weeks and I’m quadriplegic, but have more hand function than most, I don’t have coordination or the pinch grasp.. so I’m pretty much paralyzed from chest down. I have the feeding tube from my esophagus being out of sync and my diaphragm is weak. I do see the benefit what you said about getting it sooner than later. I do however know sign language. But no one else does! Thank you so much for your feedback. I’d be interested to know your recovery time from discomfort to when it started becoming less painful. My feeding tube took about 8-9 months before it stopped being painful when transferring. Also.. I see some people have lots of discharge/secretions while others never complain about it. Do you have any knowledge about why some have problems with that and can you tell me your experience? Thank you again!
@@ZombiieLoveQuadCreations Thank you so much for sharing some of your story. It is quite remarkable. My tracheostomy site was only slightly painful. They gave me pain meds in the hospital, and I was really confused because I the pain was very minor. It was maybe a 3 on the pain scale. They discontinued the pain meds because I was not using them.
At first, the feeling of having a trach in your airways was more of a discomfort and irritation than pain. It was similar to having a scratchy throat from a cold. If you bump the trach, it will be irritating in your airways and you will cough. This hypersensitivity went away when my trach tube was changed out after a month. There are a lot of different trach tubes. The trach tube when they use when first creating the tracheosostomy is "sturdy". This translates into it being bigger and bulkier. When I got my trach changed out for the first time, my doctor switched me to a much smaller and slimmer trach. The new trach was so much better! The irritation immediately went away.
I have had a feeding tube before. Getting a feeding tube is much, MUCH worse. Getting a trach was one of the least painful procedures I have ever had.
Secretions: This depends on your airways. Some people have a lot of mucus from their underlying medical condition. If I am sick, I have an increase in secretions. In general, secretions are not a big issue for me. Once a day I run saline through a nebulizer to loosen and break up any mucus. That is all I seem to need to keep my airways clear.
I hate pneumonia.I’m home not feeling well at all and last month I had pneumonia but it was on my left now it’s on my right.I can’t figure it out why does it keep on coming back.I’m very worried because pneumonia took over my mothers life😭
I am so sorry to hear this. I hope you are soon on the path to better health.
Honestly, I don't see any stoma on her trach site. I should know, i have a trach.
Thanks for watching.