I always prefer to go through primary care for everything but gosh, I was quite alarmed by how sick you looked here. I have seen patients admitted to the hospital who sound better. You know you, but gosh you gave me a fright. I hope this was in the distant past and you're feeling better now. Please take care.
I’m glad you’re feeling better and just have to say that your videos teach more about not only physiology, but the psychological part of illness and human condition than anyone could hope to get out of books on medicine.
Your videos have helped me cope with my condition. I look up to your bravery! I pray that all goes well 🙏 And I wish you nothing but love and happiness ❤
Either Pseudomonas or Serratia are both critical infections, let alone getting both. I hope you live closer to hospitals so it doesn't get dangerous quickly. I can't believe you weren't aware of the bacteria in your lung that year. I hope you have a great day today! Serratia sounds like Sriracha (the hot sauce). You are hardcore. 👊🤠
I'm sorry you had to advocate for yourself so persistently in order to get the right medication. Can you make a video on why doctors might not listen to a patient's requests for medication when they know their own medical history or how to advocate for yourself at the doctor's office? This video was incredibly helpful, thank you!
Thank you for your kind words. I appreciate the video suggestions. I will see what I can do in terms of creating a video about these topics. I am glad the video was helpful.
@LifewithaVent buy your own antibiotics these docs will let you pass waiting for cultures. Your too weak to wait for docs and the hospitals just treat yourself love and healing. Try rifampicin
So sorry you were so sick Sweetheart, that was some serious congestion there, so glad you’re feeling better now - glad you pushed for the antibiotic you thought would work best 🙏🙏🙏 I think you caught a case of “Irish pseudomonas” from when you went to Ireland 😅, for Goodness Sakes Stay Healthy Girl ❤️🧡💛💐💐
You’re so Strong 💪 never give up on being your own wonderful and fabulous advocate, never. They found p.a, s.a, and coliform in my sputum…..but never thought to tell me. Ended up crippled with infection for a year and a half.
Thank you for sharing. I am so sorry to hear this. I cannot imagine everything you have been through. I hope you have made a full recovery. Thank you for all your kind words.
I come across your videos and must say that you are so brave and strong.❤. I cant imagine how difficult you must have with your conditions. But so strong and brave! Never give up beautiful soul❤️
I suffer pain from a back injury and use to complain about this- but when I see how strong you are I almost feel ashamed complaining. I wished I was as strong as you are.@@LifewithaVent
@@peterlaustsen2573 Thank you for sharing some of your story with me. I am sorry you have endured so much. I cannot imagine everything you have gone through. You are very strong. A back injury can be quite debilitating.
Thank you for sharing your story! I hope you continue to recover. Will your doctors be following up with another sputum culture to see if you have cleared the infection?
Thank you for your kind words. I had another sputum culture done, but the results came back as the sample contained too many epithelial cells. The lab threw out the sputum sample and did not culture it. I live a long ways from the lab. So, I need to go back another day and drop off another sputum sample at the lab.
You were so sick! With your condition, it seems to me that it would be appropriate to.have a visiting murse practitioner come to your home. I sense your exhaustion.
Thank you for your concern. If a nurse comes to my home, I lose access to my respiratory therapist and respiratory medical supplies. It is an insurance issue and is quite complicated. Basically, my insurance company says if a nurse comes to my home, the nurse has to also provide my respiratory care. Most nurses in my area do not have knowledge about ventilators and tracheostomy tubes. So if a nurse came to my home, I would not be able to receive any respiratory supplies or services.
Hi my friend. I’m praying for you. I’m sorry you feel so bad. Yeah of us is no fun. No fun at all. But I’m praying for you, my friend. Somonas is no fun believe me I know. I’ve had it once. I’m praying for you, my friend always
Glad that you are feeling better. I have had an infection in my lungs and my dr doesn't seem too concerned but it's been on and off for a year. If after I finish Cipro that it come back, I will have them test the mucus.
Thank you for sharing some of your story with me. I am so sorry you had have an infection in your lungs for such a long time. I hope the Cipro heals the infection. Thank you for your kindness. All my best to you.
@LifewithaVent Thank you. All the best to you. I've been binge watching your videos while resting. I feel like garbage but I enjoy your content. it's very informative. I think it's great that you are turning your situation into a very informative and useful channel.
What the heck is happening in the US healthcare system? I’m so grateful for our free Canadian healthcare system.. It’s not perfect by any means, but I have had sepsis that tore through my bloodstream and all my organs were shutting down! It settled on my spine with a huge abscess and I had to have 2 back surgeries and learn to walk again! I was hospitalized for 3 months, had amazing care, physiotherapy, then home care for a month.. I couldn’t imagine having to worry about insurance, bureaucracy, and paperwork! AND MONEY! Imagine having to worry about paying for healthcare when you’re dying or severely ill!!! That is just evil to me!!!
Thank you so much for sharing. I am sorry to hear about that you had sepsis and had to have two back surgeries. I cannot imagine everything you endured. I am so sorry you had to go through so much.
Hi. I hope you are doing better now, sounds like a nasty infection. I have a question regarding the vent, theoretically is it possible for you to jog or run on a threadmill and increase the breath rate? And would it be automatic? Take care
Thank you for your question. If the ventilator is set to the assist control (AC) mode, the ventilator will increase the breath rate in accordance with the person's breathing rate. However, there are limits to how fast the machine will breathe. If a person exercises while on a ventilator, the machine's parameters will need to be changed to give the correct breath support. These changes will not be automatic, but they will need to be changed on the machine. Many ventilators have the option of having multiple settings preset on the machine. If a person's breathing parameters while exercising can be figured out ahead of time, the preset parameters can be inputted into the machine and saved as a separate setting. When the person exercises, he can change to the preset setting. Once he stops exercising, he will have to change back to the primary setting. The changes between these settings will not be automatic, but will require the person or the person's caregiver to press buttons on the machine to switch between the settings.
Your hair looked great that day. You should ask for a nebulizer and equipment (chest pt) and actually suction your lungs regularly. What respiratory therapists do at the hospital with red robins.
My son has cerebral palsy and due to the complications with that, he has a tracheostomy but is only vented overnight. He is colonised with pseudomonas and has colomycin through his vent overnight and on a morning before getting out of bed via an aerogen - do you too? There are times that the pseudomonas has flared up and he has required ciprofloxacin or Tobramycin to bring it back down. Are you also colonised with pseudomonas?
Thank you so much for sharing. I appreciate all the information. No, I do not use colomycin. I will ask my medical provider about that medicine. I am colonized with pseudomonas. I am so glad he has a treatment protocol. That helps so much when dealing with a colonized bacteria.
Thank you for your question. If a nurse comes to my home, I have to sign up for a service called home health. If I receive home health, I no longer can order medical supplies for my ventilator and tracheostomy tubes from my medical equipment company. It becomes a very complicated mess trying to get medical supplies and tracheostomy tubes. In short, if a nurse comes to my home, I no longer can get supplies for my ventilator and tracheostomy tubes.
He just got home from hospital after meripenem. It hit him like an asthma attack. He isnt vent dependent but it was bad enough he needed it for a day or so. He grew the pseudomonas but nothing was like his usual. He also grew klebsiella
@@LifewithaVent thank you. I was going to ask you somewhere which dr might prescribe him home antibiotics. You answered that in this video. Thank you again for all you share.
Do you wear a mask 😷 when around people who are outside your regular household? I am immunocompromised and my husband and myself wear an N95. Please don’t take any chances!
Thank you for sharing. No, I do not wear a mask. Air enters my ventilator from the back of the machine and is then breathed into my lungs via tubing which is connected to a tracheostomy tube in my throat. I exhale via the exhalation valve on my ventilator tubing. My doctor and respiratory therapists have told me wearing a mask will not provide any protection for me.
How’s your cough with the vent? Do you have suction, or can you get help with the cough. Pseudomonas is what all our patients on ventilators get. Yup, I’m pretty sure you need some drugs, because sepsis would be really disastrous.
Thank you for sharing. I do not use suction. I am still able to cough. i use saline in a nebulizer to loosen the secretions. Using the nebulizer also brings the secretions up to the top of my trach tube. Removing my vent and producing a weak cough is all which is needed to get rid of the secretions from my trach tube.
@@LifewithaVent For the future, in case the nebulizer isn't enough: I wonder if you're able to use NAC (N-Acytl Cysteine). It's over-the-counter here in Europe and I believe also in the US. It's fantastic for loosening phlegm in the lungs. My doctor recommended it when I had double pneumonia, told me I'd be "spitting like a camel" lol (I coughed and spit out everything in my lungs over two days!). It helps many with COPD.
@@minoozolala Thank you so much for sharing. I appreciate the information. I am sorry you were coughing and spitting so much, but I am sure it helped. I am glad it helps with your COPD.
I’m so confused with the fact that you scheduled an appointment with your pulmonologist and he wasn’t there to see you when you arrived. I mean, is that common in the US? I’m from Brazil, so I honestly don’t know
For most doctors, no it is not common. For my pulmonologist, he works at adjacent hospitals. If a medical emergency arises at the hospital, he is needed at the hospital and has to leave the clinic. That is what happened with my pulmonologist. A woman stopped breathing at the hospital, and he was needed to help bring her back to life.
How will you take a bath ma'am with a tube? Because my husband has also a tube when he take a bath i am the one who do the shampoo.because he is holding the cover of the tube. Can you share your idea?
Thank you for your question. I made a video which is titled: How to shower or bathe with a tracheostomy tube or ventilator. Here is the link to the video if you wish to view it: th-cam.com/video/UB_yPeWoCgg/w-d-xo.html
No. I have Mitochondrial Disease. Mitochondrial Disease is a progressive disease. I have had it since I was a child, but the symptoms were either misdiagnosed or brushed aside. It was only after the ruptured ovarian cyst did doctors start to notice the symptoms and start to think there may be an underlying medical issue.
I always prefer to go through primary care for everything but gosh, I was quite alarmed by how sick you looked here. I have seen patients admitted to the hospital who sound better. You know you, but gosh you gave me a fright. I hope this was in the distant past and you're feeling better now. Please take care.
Thank you for sharing. I appreciate all your support. Yes, I am feeling better now.
I’m glad you’re feeling better and just have to say that your videos teach more about not only physiology, but the psychological part of illness and human condition than anyone could hope to get out of books on medicine.
Thank you so much. I am glad the video is insightful.
Your videos have helped me cope with my condition. I look up to your bravery!
I pray that all goes well 🙏 And I wish you nothing but love and happiness ❤
Thank you so much. I appreciate your kindness.
اللَّهُمَّ رَبَّ النَّاسِ أَذْهِبِ الْبَأْسَ وَاشْفِ أَنْتَ الشَّافِي لَا شِفَاءَ إِلَّا شِفَاؤُكَ شِفَاءٌ لَا يُغَادِرُ سَقَمَا
Many prayers for you. ❤
شكراً جزيلاً.
Thank you so much.
Im so sorry dear, i hope you recover as soon as possible. It's gonna be alright dear ❤❤ prayers ❤
Thank you.
Either Pseudomonas or Serratia are both critical infections, let alone getting both. I hope you live closer to hospitals so it doesn't get dangerous quickly. I can't believe you weren't aware of the bacteria in your lung that year. I hope you have a great day today! Serratia sounds like Sriracha (the hot sauce). You are hardcore. 👊🤠
Thank you so much for your concern. I love it. I never noticed that Serratia sounds like Sriracha. Thanks for sharing.
I'm sorry you had to advocate for yourself so persistently in order to get the right medication. Can you make a video on why doctors might not listen to a patient's requests for medication when they know their own medical history or how to advocate for yourself at the doctor's office? This video was incredibly helpful, thank you!
Thank you for your kind words. I appreciate the video suggestions. I will see what I can do in terms of creating a video about these topics. I am glad the video was helpful.
Sweetheart, I really hope you get better soon. Sorry to see you struggling
Thank you.
That's just crazy. Sorry you have to fight to get treatment. I understand that doctors don't like to prescribe antibiotics but you need to get better.
Thank you so much. I appreciate your concern.
@LifewithaVent buy your own antibiotics these docs will let you pass waiting for cultures. Your too weak to wait for docs and the hospitals just treat yourself love and healing. Try rifampicin
@@LifewithaVentindiamart for your own antibiotics
Pleased to see your recovery is going well, and great to be advocate for yourself
Thank you.
Glad you are finally better. That must have been exhausting.
Yes, it was exhausting. Thank you for your well wishes.
I'm so sorry to see you like this I hope you feel better soon may God bless you always
Thank you so much.
You are a motivation to all ❤️
Thank you so much.
You just know what's going on in your body!
You are your own doctor.
Just WOW❤
Thank you. I appreciate your kindness.
So sorry you were so sick Sweetheart, that was some serious congestion there, so glad you’re feeling better now - glad you pushed for the antibiotic you thought would work best 🙏🙏🙏 I think you caught a case of “Irish pseudomonas” from when you went to Ireland 😅, for Goodness Sakes Stay Healthy Girl ❤️🧡💛💐💐
16:34 to 17:04 - yes, your hair looks great 😊😊😊.
Thanks so much. I appreciate your kindness.
@@LifewithaVent aaaah, I’m really not that kind 😆🤣😆😂
Praying for you. You are such a blessing
Praying for u
@evasmall3580 Thank you so much.
@LarryMaddux Thank you.
Feel better soon inshaAllah! I came across your videos and you are such an inspiration! Would love to meet you some day
Thank you so much.
Your hair looks fantastic today ❤️🇨🇦
Thank you!
You’re so Strong 💪 never give up on being your own wonderful and fabulous advocate, never. They found p.a, s.a, and coliform in my sputum…..but never thought to tell me. Ended up crippled with infection for a year and a half.
Thank you for sharing. I am so sorry to hear this. I cannot imagine everything you have been through. I hope you have made a full recovery. Thank you for all your kind words.
I hope u feel better ❤ your videos are always very informative❤
Thank you so much.
I come across your videos and must say that you are so brave and strong.❤. I cant imagine how difficult you must have with your conditions. But so strong and brave! Never give up beautiful soul❤️
Thank you so much. I appreciate your kindness.
I suffer pain from a back injury and use to complain about this- but when I see how strong you are I almost feel ashamed complaining. I wished I was as strong as you are.@@LifewithaVent
@@peterlaustsen2573 Thank you for sharing some of your story with me. I am sorry you have endured so much. I cannot imagine everything you have gone through. You are very strong. A back injury can be quite debilitating.
Thank you for sharing your story! I hope you continue to recover. Will your doctors be following up with another sputum culture to see if you have cleared the infection?
Thank you for your kind words. I had another sputum culture done, but the results came back as the sample contained too many epithelial cells. The lab threw out the sputum sample and did not culture it. I live a long ways from the lab. So, I need to go back another day and drop off another sputum sample at the lab.
Sunshine, keep going you are amazing and so precious.
Thank you so much.
@@LifewithaVent Your welcome
@@LifewithaVent Your welcome
❤
❤❤❤ hope you feel better soon u going to always be strong
Thank you so much.
Days of waiting. You'd think modern medicine would be faster. You're very brave.
Thank you.
Praying for you.
Thank you.
I hope you recover soon
Thank you.
You were so sick! With your condition, it seems to me that it would be appropriate to.have a visiting murse practitioner come to your home. I sense your exhaustion.
Thank you for your concern. If a nurse comes to my home, I lose access to my respiratory therapist and respiratory medical supplies. It is an insurance issue and is quite complicated. Basically, my insurance company says if a nurse comes to my home, the nurse has to also provide my respiratory care. Most nurses in my area do not have knowledge about ventilators and tracheostomy tubes. So if a nurse came to my home, I would not be able to receive any respiratory supplies or services.
Hi my friend. I’m praying for you. I’m sorry you feel so bad. Yeah of us is no fun. No fun at all. But I’m praying for you, my friend. Somonas is no fun believe me I know. I’ve had it once. I’m praying for you, my friend always
Thank you so much. I appreciate your prayers.
@@LifewithaVent oh you’re welcome. I will always pray for you. You’re a sweet person, my friend.
@@Puppy_1 Thank you.
ربي يشافيك شفاء لا يغادر سقما 😢
شكراً جزيلاً.
Thank you so much.
Glad that you are feeling better. I have had an infection in my lungs and my dr doesn't seem too concerned but it's been on and off for a year. If after I finish Cipro that it come back, I will have them test the mucus.
Thank you for sharing some of your story with me. I am so sorry you had have an infection in your lungs for such a long time. I hope the Cipro heals the infection. Thank you for your kindness. All my best to you.
@LifewithaVent Thank you. All the best to you. I've been binge watching your videos while resting. I feel like garbage but I enjoy your content. it's very informative. I think it's great that you are turning your situation into a very informative and useful channel.
@@carlagat1075 Thank you for your kind words. I am so sorry you are not feeling well. I hope you are soon on the path to better health.
@@LifewithaVentThank you.
I had pseudomonas. On a breathing machine for a few months. I have POTS, LUPUS, SVP.
Praying for you
Thank you for sharing. I am so sorry you went through that. I cannot imagine everything you endured. Thank you for your prayers. All my best to you.
What the heck is happening in the US healthcare system? I’m so grateful for our free Canadian healthcare system.. It’s not perfect by any means, but I have had sepsis that tore through my bloodstream and all my organs were shutting down! It settled on my spine with a huge abscess and I had to have 2 back surgeries and learn to walk again! I was hospitalized for 3 months, had amazing care, physiotherapy, then home care for a month.. I couldn’t imagine having to worry about insurance, bureaucracy, and paperwork! AND MONEY! Imagine having to worry about paying for healthcare when you’re dying or severely ill!!! That is just evil to me!!!
Thank you so much for sharing. I am sorry to hear about that you had sepsis and had to have two back surgeries. I cannot imagine everything you endured. I am so sorry you had to go through so much.
Praying 🙏 ❤
Thank you.
Hi. I hope you are doing better now, sounds like a nasty infection.
I have a question regarding the vent, theoretically is it possible for you to jog or run on a threadmill and increase the breath rate? And would it be automatic?
Take care
Thank you for your question. If the ventilator is set to the assist control (AC) mode, the ventilator will increase the breath rate in accordance with the person's breathing rate. However, there are limits to how fast the machine will breathe. If a person exercises while on a ventilator, the machine's parameters will need to be changed to give the correct breath support. These changes will not be automatic, but they will need to be changed on the machine.
Many ventilators have the option of having multiple settings preset on the machine. If a person's breathing parameters while exercising can be figured out ahead of time, the preset parameters can be inputted into the machine and saved as a separate setting. When the person exercises, he can change to the preset setting. Once he stops exercising, he will have to change back to the primary setting. The changes between these settings will not be automatic, but will require the person or the person's caregiver to press buttons on the machine to switch between the settings.
Your hair looked great that day. You should ask for a nebulizer and equipment (chest pt) and actually suction your lungs regularly. What respiratory therapists do at the hospital with red robins.
Thanks so much. I appreciate the information.
hope u better
Thank you.
My son has cerebral palsy and due to the complications with that, he has a tracheostomy but is only vented overnight. He is colonised with pseudomonas and has colomycin through his vent overnight and on a morning before getting out of bed via an aerogen - do you too? There are times that the pseudomonas has flared up and he has required ciprofloxacin or Tobramycin to bring it back down. Are you also colonised with pseudomonas?
Thank you so much for sharing. I appreciate all the information. No, I do not use colomycin. I will ask my medical provider about that medicine. I am colonized with pseudomonas. I am so glad he has a treatment protocol. That helps so much when dealing with a colonized bacteria.
You are so brave ❤️
Exodus 15:26 “Iam the Lord who heals you “
One of my favorite verses. Thank you.
Why can the doctors office not call you in script for nurse to come do blood draw at your home?
Thank you for your question. If a nurse comes to my home, I have to sign up for a service called home health. If I receive home health, I no longer can order medical supplies for my ventilator and tracheostomy tubes from my medical equipment company. It becomes a very complicated mess trying to get medical supplies and tracheostomy tubes. In short, if a nurse comes to my home, I no longer can get supplies for my ventilator and tracheostomy tubes.
Sed Rate not done, not needed?
Do you starr an anti-inflammatory?
Marie you got me sick
I am so sorry to hear that. I hope you get well soon.
He just got home from hospital after meripenem. It hit him like an asthma attack. He isnt vent dependent but it was bad enough he needed it for a day or so.
He grew the pseudomonas but nothing was like his usual. He also grew klebsiella
Thank you for sharing. I am sorry he went through so much. I hope he has a complete recovery.
@@LifewithaVent thank you. I was going to ask you somewhere which dr might prescribe him home antibiotics. You answered that in this video. Thank you again for all you share.
@@theaccountonmytv I am glad the video was helpful.
Do you wear a mask 😷 when around people who are outside your regular household? I am immunocompromised and my husband and myself wear an N95. Please don’t take any chances!
Thank you for sharing. No, I do not wear a mask. Air enters my ventilator from the back of the machine and is then breathed into my lungs via tubing which is connected to a tracheostomy tube in my throat. I exhale via the exhalation valve on my ventilator tubing. My doctor and respiratory therapists have told me wearing a mask will not provide any protection for me.
i hope you ge beter do you have any one o help when you get sick i have emphesama infecions can be very dangerous cause im older han you
Thank you for your question. Yes, my family helps me.
How’s your cough with the vent? Do you have suction, or can you get help with the cough. Pseudomonas is what all our patients on ventilators get. Yup, I’m pretty sure you need some drugs, because sepsis would be really disastrous.
Thank you for sharing. I do not use suction. I am still able to cough. i use saline in a nebulizer to loosen the secretions. Using the nebulizer also brings the secretions up to the top of my trach tube. Removing my vent and producing a weak cough is all which is needed to get rid of the secretions from my trach tube.
@@LifewithaVent For the future, in case the nebulizer isn't enough: I wonder if you're able to use NAC (N-Acytl Cysteine). It's over-the-counter here in Europe and I believe also in the US. It's fantastic for loosening phlegm in the lungs. My doctor recommended it when I had double pneumonia, told me I'd be "spitting like a camel" lol (I coughed and spit out everything in my lungs over two days!). It helps many with COPD.
@@minoozolala Thank you so much for sharing. I appreciate the information. I am sorry you were coughing and spitting so much, but I am sure it helped. I am glad it helps with your COPD.
I’m so confused with the fact that you scheduled an appointment with your pulmonologist and he wasn’t there to see you when you arrived. I mean, is that common in the US? I’m from Brazil, so I honestly don’t know
For most doctors, no it is not common. For my pulmonologist, he works at adjacent hospitals. If a medical emergency arises at the hospital, he is needed at the hospital and has to leave the clinic. That is what happened with my pulmonologist. A woman stopped breathing at the hospital, and he was needed to help bring her back to life.
How will you take a bath ma'am with a tube? Because my husband has also a tube when he take a bath i am the one who do the shampoo.because he is holding the cover of the tube. Can you share your idea?
Thank you for your question. I made a video which is titled: How to shower or bathe with a tracheostomy tube or ventilator. Here is the link to the video if you wish to view it: th-cam.com/video/UB_yPeWoCgg/w-d-xo.html
This is crazy. My son has cystic fibrosis and I have delt with these psudenomas a few times. I gotta skip this video, hits too close to home.
Thank you for sharing. I am sorry your son has had pseudomonas a few times. All my best to you and your son.
did all this resulted from a ruptured ovarian cyst ?
No. I have Mitochondrial Disease. Mitochondrial Disease is a progressive disease. I have had it since I was a child, but the symptoms were either misdiagnosed or brushed aside. It was only after the ruptured ovarian cyst did doctors start to notice the symptoms and start to think there may be an underlying medical issue.
@@LifewithaVent oh. so do you want children
@@neomatrix4412 I do.
@@LifewithaVent oh would pregnancy be very dangerous for you
@@neomatrix4412 It probably would not be.
Hope you improve your health. Had COVID and almost died, so I know what shortage of breath and weakness is. You need someone by your side to help you.
Thank you. I appreciate your kindness.