My mom has had Pseudomonas infection in her trach tube..more than 5/6 times in last 1 year and this has been followed by bouts of antibiotics (mostly tigycelyene).Initially we used to be so scare,and now we know the drill.Hope you recover fully..be strong as always.
My granddaughter is eight and has a trach and she has had this infection twice this year. I asked the doctors if there was anything that I could do to help her not to get this infection. Just wondering if you had any ideas. They said no, that is common to trach patients. Glad you were able to enjoy your cruise. I talk to the nurses and the hospital about your channel. It has helped me a lot in taking care of my granddaughter daily. Prayers and hopes in your speedy recovery Nana.
Hello. I am sorry to hear your granddaughter also has this infection. My doctor told me one way to lessen the chances this infection re-occurs is by replacing the trach tube at least once a month. I used to have this infection frequently, but since I have started replacing my trach tube at least once a month, I only have flare-ups when very stressed (like I was during my vacation) or after having surgery. I am not sure how frequently your granddaughter has her trach tube replaced. For children, they sometimes need it changed more often--like every 2 to 3 weeks. Thank you for your prayers.
I am so sorry you went through that in Canada we just go straight to the emergency ward the worst part of that is that you wait hours but you don’t have to put yourself through and life-threatening situation. My thoughts goes out to you.
Thank you for your kindness. I could have gone to the emergency department at the hospital. However, I am immuno-compromised. I avoid hospitals and emergency wards because there are usually lots of germs and sick people. It is not uncommon for me to pick up an infection while being exposed to other people. (In 2018, I nearly died when I acquired an infection which was resistant to all medicine while visiting the hospital. I had to use an experimental drug to kill the infection.) If I am at risk of dying, I will go to the emergency department, but I was not that sick yet.
Glad to hear that you're finally starting to feel better. I'm dealing with what appears to be inflammation in my right ear at the moment which is causing hearing difficulties. I'm probably gonna have to make yet another visit to my primary as neither the NSAIDs nor wax remover appear to be working. At least my COPD seems to be in check with no recent hospitalizations for respiratory issues so that's always a plus.
Thank you for the update. I am sorry you are having inflammation in your right ear. I hope you are soon able to get this sorted out and are soon on the path to better health. I am happy to hear your COPD is not causing any hospitalizations. All my best to you.
I really thought I was the only one going through this horrible merry go round. I know exactly what your talking about. It is so very frustrating. Thank you so much for posting your videos. Your strength is so admirable. It helps me to think there is light at the end of this tunnel. I hope you feel better soon.
So sad the treatment you’re used to in the USA :( I hope the medical treatment you get in the future gets better (doctors coming to appointments and listening to you)
This pseudomas thing is all over the world unfortunately. In some countries medical staff even blame the patients for it. It is hard to avoid it no matter how careful you try and when using tubes over long period of time (years), it is not surprising to get it somehow. Don't feel bad. Not anyone's fault. It was heartbreaking coz some older people thought it was their fault. Take care y'all!
Hope you feel better. I watched your videos for education. My dad just had 6-0 Shiley cuffed tracheostomy tube in place yesterday at UCSF. I have to watch more more of your videos. ❤ Thank you! 🙏
Hello My Dear and Precious Friend I am So Sorry that your Pseudomonas Infection makes you not feel well. That is alot of symptoms that you go through with the shivers, aches and pains and all that you that you go through with this Infection. How is this different then Pneumonia or is it the samething? I am So Happy to hear the nurse took good care of you and listen to you and got you the right IV Antibodics. Are you still on the IV Antibodics right now? I am Praying for you that you are feeling much better. Thank You for all that you share with us for you are Amazing Person.
Hello. Thank you so much for your kind words. I really appreciate them. Pseudomonas is the name of the bacteria. Pneumonia is when the lungs get infected with bacteria. I have pneumonia which is caused by the bacteria pseudomonas. The antibiotics are working well! Thank you for asking. I hope you are well. All my best to you!
@@LifewithaVent you are very welcome I am doing well 🤗and happily quite busy working on a new series of drawings,playing chamber music🎶🎵 and writing poetry
So do you give yourself IV's ? Also with the mitochondrial disease what age did symptoms start ? usually at your level it's typically from birth but not in your case? Did you catch some sort of infection and that brought it on or probably you don't know? Is it just assumed that your mitochondrial disease was a loaded gun from a DNA perspective, No history on your mums side ? Pseudo obstruction I assume you are talking about the colon? and is it typically in the same part of the colon ? or seemingly random location's around the colon. Hope you don't mind all the questions? if you do don't answer them. Mitochondria has many different modes of operation, and has many potential feed back parameters (highly closed loop) and some people have quite( low closed loop) feedback parameters. Have you got a face book page ? oh and by the way you are a WARRIOR highly impressed.
Hello. I have a permanent IV line called a PICC line. For intravenous medicine, I simply connect the end of the syringe to the end of my PICC line. My symptoms started at age 20. A few days after my 20th birthday, I developed hand cramps. They progressed and intensified when I tried to use my hands. I then started having tremors. And from there, my health declined. There is a history of Mitochondrial Disease for at least four generations. It is both on male and female sides of the family. Pseudo-obstruction is short for chronic intestinal pseudo-obstruction. It is where the small intestine shuts down and creates a functional obstruction, i.e., my small intestine stops working. (This is different from a regular obstruction in which there is a physical obstruction.) It happens throughout my small intestine. Yes, I have a Facebook page. Here is the link to the page if you wish to visit: facebook.com/people/Life-with-a-Vent/100063530500489/ Thank you for all your questions and kind words. If you have any additional questions please feel free to ask. All my best to you.
I have pseudomonas and currently on ciprofloxin 500 mg again for the 3rd time. Tried the 750 but too many side effects. I would like to know how you knew where the psedunomas were located Did you have a specific test?. The symptoms I have is that i cough up a very sticky mucus ball sputum amd the lab results come back as pseudomonas but how do you know where it's located?? I have done sinus ct. Lung ct etc. My pcp just today has sent in a referral for me to see an infectious disease doctor. I have not been ordered the antibiotics iv yet but hoping thats what the dr will do. Any advise is greatly appreciated. My prayers are woth you and you are a warrior. Ps. I also have Pots....
Hello. Thank you for your comment. When I get sick, I collect the sputum (the mucus which I cough up) in a special collection cup. I take it to the laboratory, and it is cultured. I have a tracheostomy tube which is located in my trachea. Since I cough out the mucus through my tracheostomy tube, the mucus can only come from the trachea, bronchi or lungs. So if the culture comes back positive for pseudomonas, the infection can only be located in my trachea, bronchi or lungs. I have had a known pseudomonas infection in my lungs since 2018. (It was diagnosed via a positive sputum culture for pseudomonas and a chest x-ray which indicated I had pneumonia in my lungs.) So, when the mucus comes back as being positive for pseudomonas, it is assumed it is a re-activation of the old pseudomonas infection in my lungs. My pseudomonas infection is a chronic infection. It acts up (and makes me sick) about once every 6-12 months. An infectious disease doctor is a great doctor to see for pseudomonas. The infectious disease doctor should be able to tell you where your infection is located. Pseudomonas can be a tricky infection to treat. The infectious disease doctor should be able to prescribe the correct antibiotics, the correct dosing for the antibiotics and should be able to help you get rid of the infection. Thank you for your prayers. I really appreciate that. I hope everything goes well for you.
I have had a chronic pseudomonas infection in my lungs since 2018. I have been hospitalized about 20 times for this infection. It has damaged my lungs. I am not sure if pseudomonas normally damages the lungs, or if I have damage because I have other lung issues such as COPD. For the most accurate information on if pseudomonas can damage the lungs, please ask your doctor.
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.
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My mom has had Pseudomonas infection in her trach tube..more than 5/6 times in last 1 year and this has been followed by bouts of antibiotics (mostly tigycelyene).Initially we used to be so scare,and now we know the drill.Hope you recover fully..be strong as always.
Thank you for sharing some of your story with pseudomonas. I am glad you have a routine for handling this infection. All my best to you and your mom.
My granddaughter is eight and has a trach and she has had this infection twice this year. I asked the doctors if there was anything that I could do to help her not to get this infection. Just wondering if you had any ideas. They said no, that is common to trach patients. Glad you were able to enjoy your cruise. I talk to the nurses and the hospital about your channel. It has helped me a lot in taking care of my granddaughter daily. Prayers and hopes in your speedy recovery Nana.
Hello. I am sorry to hear your granddaughter also has this infection. My doctor told me one way to lessen the chances this infection re-occurs is by replacing the trach tube at least once a month. I used to have this infection frequently, but since I have started replacing my trach tube at least once a month, I only have flare-ups when very stressed (like I was during my vacation) or after having surgery. I am not sure how frequently your granddaughter has her trach tube replaced. For children, they sometimes need it changed more often--like every 2 to 3 weeks. Thank you for your prayers.
I had a chronic pseudomonas infection in my feeding tube sight for a year and a half and it was awful, praying for you
I am so sorry to hear about your struggles with pseudomonas. I hope you are now on the path to better health. Thank you for the prayers.
I am so sorry you went through that in Canada we just go straight to the emergency ward the worst part of that is that you wait hours but you don’t have to put yourself through and life-threatening situation. My thoughts goes out to you.
Thank you for your kindness. I could have gone to the emergency department at the hospital. However, I am immuno-compromised. I avoid hospitals and emergency wards because there are usually lots of germs and sick people. It is not uncommon for me to pick up an infection while being exposed to other people. (In 2018, I nearly died when I acquired an infection which was resistant to all medicine while visiting the hospital. I had to use an experimental drug to kill the infection.) If I am at risk of dying, I will go to the emergency department, but I was not that sick yet.
I am so glad you have a good medical office/lab that are listening to you !
Thank you.
So sorry to hear that, I hope you get your IV antibiotics plus Pain meds asap. Praying for your health😊
Thank you.
I hope you feel better soon. You’re giving so many a lot of medical education. I just wish it was an easier path for you.
Thank you so much. I really appreciate all your support.
Glad to hear that you're finally starting to feel better. I'm dealing with what appears to be inflammation in my right ear at the moment which is causing hearing difficulties. I'm probably gonna have to make yet another visit to my primary as neither the NSAIDs nor wax remover appear to be working.
At least my COPD seems to be in check with no recent hospitalizations for respiratory issues so that's always a plus.
Thank you for the update. I am sorry you are having inflammation in your right ear. I hope you are soon able to get this sorted out and are soon on the path to better health. I am happy to hear your COPD is not causing any hospitalizations. All my best to you.
I really thought I was the only one going through this horrible merry go round. I know exactly what your talking about. It is so very frustrating. Thank you so much for posting your videos. Your strength is so admirable. It helps me to think there is light at the end of this tunnel.
I hope you feel better soon.
I am sorry you also experience some merry-go-round frustrations. Thank you for all your kind words.
So sad the treatment you’re used to in the USA :( I hope the medical treatment you get in the future gets better (doctors coming to appointments and listening to you)
Thank you.
This pseudomas thing is all over the world unfortunately. In some countries medical staff even blame the patients for it. It is hard to avoid it no matter how careful you try and when using tubes over long period of time (years), it is not surprising to get it somehow. Don't feel bad. Not anyone's fault. It was heartbreaking coz some older people thought it was their fault.
Take care y'all!
Thank you for sharing. All my best to you.
Praying 🙏 the IV medication you received works well so you can start feeling better. Take care and may God Bless and watch over you Russ
Thank you so much.
Hope you feel better. I watched your videos for education. My dad just had 6-0 Shiley cuffed tracheostomy tube in place yesterday at UCSF. I have to watch more more of your videos. ❤ Thank you! 🙏
Thank you. I hope everything goes well for your dad. If you have any questions or concerns, please feel free to contact me.
Praying for you, you will recover soon....
Thank you so much.
Hello My Dear and Precious Friend I am So Sorry that your Pseudomonas Infection makes you not feel well. That is alot of symptoms that you go through with the shivers, aches and pains and all that you that you go through with this Infection. How is this different then Pneumonia or is it the samething? I am So Happy to hear the nurse took good care of you and listen to you and got you the right IV Antibodics. Are you still on the IV Antibodics right now? I am Praying for you that you are feeling much better. Thank You for all that you share with us for you are Amazing Person.
Hello. Thank you so much for your kind words. I really appreciate them. Pseudomonas is the name of the bacteria. Pneumonia is when the lungs get infected with bacteria. I have pneumonia which is caused by the bacteria pseudomonas. The antibiotics are working well! Thank you for asking. I hope you are well. All my best to you!
Get well soon dear warrior, all the best. Looking forward to your next video with good news. ❤
Thank you so much.
Happy to hear that you are on the mend and praying for your complete recovery
Sending love,hugs and healing prayers 🙏❤ a 😊 to brighten up your day
Thank you so much. Your comments always brighten my day. I hope you are well.
@@LifewithaVent you are very welcome
I am doing well 🤗and happily quite busy working on a new series of drawings,playing chamber music🎶🎵 and writing poetry
That is wonderful!!! I am so happy to hear this. I hope everything goes well for you. And I know this is a little bit early. Shana Tova!
@@LifewithaVent thank you so much.i will be praying special prayers for you during new year services at the synagogue❤️🎶🤗🎵
@@shoshannafachima1306 Thank you so much. That is very kind of you. I really appreciate that.
So do you give yourself IV's ? Also with the mitochondrial disease what age did symptoms start ? usually at your level it's typically from birth but not in your case? Did you catch some sort of infection and that brought it on or probably you don't know? Is it just assumed that your mitochondrial disease was a loaded gun from a DNA perspective, No history on your mums side ? Pseudo obstruction I assume you are talking about the colon? and is it typically in the same part of the colon ? or seemingly random location's around the colon. Hope you don't mind all the questions? if you do don't answer them. Mitochondria has many different modes of operation, and has many potential feed back parameters (highly closed loop) and some people have quite( low closed loop) feedback parameters. Have you got a face book page ? oh and by the way you are a WARRIOR highly impressed.
Hello. I have a permanent IV line called a PICC line. For intravenous medicine, I simply connect the end of the syringe to the end of my PICC line. My symptoms started at age 20. A few days after my 20th birthday, I developed hand cramps. They progressed and intensified when I tried to use my hands. I then started having tremors. And from there, my health declined.
There is a history of Mitochondrial Disease for at least four generations. It is both on male and female sides of the family.
Pseudo-obstruction is short for chronic intestinal pseudo-obstruction. It is where the small intestine shuts down and creates a functional obstruction, i.e., my small intestine stops working. (This is different from a regular obstruction in which there is a physical obstruction.) It happens throughout my small intestine.
Yes, I have a Facebook page. Here is the link to the page if you wish to visit: facebook.com/people/Life-with-a-Vent/100063530500489/
Thank you for all your questions and kind words. If you have any additional questions please feel free to ask. All my best to you.
Hope all goes well...love you
Thank you.
I have pseudomonas and currently on ciprofloxin 500 mg again for the 3rd time. Tried the 750 but too many side effects. I would like to know how you knew where the psedunomas were located
Did you have a specific test?.
The symptoms I have is that i cough up a very sticky mucus ball sputum amd the lab results come back as pseudomonas but how do you know where it's located?? I have done sinus ct. Lung ct etc. My pcp just today has sent in a referral for me to see an infectious disease doctor. I have not been ordered the antibiotics iv yet but hoping thats what the dr will do. Any advise is greatly appreciated. My prayers are woth you and you are a warrior. Ps. I also have Pots....
Hello. Thank you for your comment.
When I get sick, I collect the sputum (the mucus which I cough up) in a special collection cup. I take it to the laboratory, and it is cultured. I have a tracheostomy tube which is located in my trachea. Since I cough out the mucus through my tracheostomy tube, the mucus can only come from the trachea, bronchi or lungs. So if the culture comes back positive for pseudomonas, the infection can only be located in my trachea, bronchi or lungs.
I have had a known pseudomonas infection in my lungs since 2018. (It was diagnosed via a positive sputum culture for pseudomonas and a chest x-ray which indicated I had pneumonia in my lungs.) So, when the mucus comes back as being positive for pseudomonas, it is assumed it is a re-activation of the old pseudomonas infection in my lungs. My pseudomonas infection is a chronic infection. It acts up (and makes me sick) about once every 6-12 months.
An infectious disease doctor is a great doctor to see for pseudomonas. The infectious disease doctor should be able to tell you where your infection is located. Pseudomonas can be a tricky infection to treat. The infectious disease doctor should be able to prescribe the correct antibiotics, the correct dosing for the antibiotics and should be able to help you get rid of the infection.
Thank you for your prayers. I really appreciate that. I hope everything goes well for you.
Does pseudomonas damage lungs?
I have had a chronic pseudomonas infection in my lungs since 2018. I have been hospitalized about 20 times for this infection. It has damaged my lungs. I am not sure if pseudomonas normally damages the lungs, or if I have damage because I have other lung issues such as COPD. For the most accurate information on if pseudomonas can damage the lungs, please ask your doctor.
❤
Thank you.
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.