Hi Alexis, thank you so much for sharing this. I’ve been on oxygen since April for activity (53% lung capacity and have moderate pulmonary hypertension). I am the only person under 30 receiving care in my region so it can feel isolating. I hope you are well and I’d love to connect (if you have the time) to learn from your experiences and expand a feeling of community for those younger people on oxygen 💚
I have pulmonary hypertension and idiopathic pulmonary fibrosis, I have been on oxygen for 9 years this month... I have been on oxygen ever since. I have had the heart Cath 3 times, no fun . I used to be embarrassed for being in complete oxygen but I have learned to embrace it, I don't like taking pictures with it on tho. I was 44 years old and thought I was too young, glad I found you on social media.
Thank you sweet girl for sharing. You look amazing in spite of being stuck in a crappy situation such is Pulmonary disease. God bless and stay sweet. The world needs more folks like you.
I did a fast slide from bad copd to pneumonia and end stage copd.. it happened so fast. As of last week I am now oxygen dependent 24/7. If I get off it to do minor cleaning, my pulse ox drops to a frightening 82 in 15 minutes. The thing beeps a warning and I strap on my cannula. Then watch as my pulse ox rises to an amazing 96! The pulse oximeter is my new constant companion. I'm alone in this. My dearest best friend passed in my arms here at home March 3 from her copd. She also had blood clots stroke and three heart attacks. All of which happened after our 3rd covid vaccine. Her husb is a Narccisist supreme and he is not speaking to me since I got pneumonia and spent 3 days in hospital. He left the house a fly -ridden mess and shut off the AC! He got psychotic when I turned it back on. 80 degrees in the house is for LIZARDS. I will be spending my last remaining days trying to get stable enough to have my disability SSA upgraded so maybe I can move to a safe location far from him.
Lot's of love from India 🇮🇳🇮🇳.. am to recently diagnose with pulmonary hipertension.... I love you sis cause uh giving ur experience with pulmonary hipertension .. and how to live with it uh give me a power to live with it 🤞❣️❣️
HI POONAM! I AM FROM INDIA AS WELL ND HAS BEEN DIAGNOSED WITH PH (CTEPH). I HAVE TO LIVE WITH OXYGEN AT THE AGE OF 16 AND THIS IS GOING ON TILL 14 YRS.
I am so grateful I came across your video + channel ,I am not having much luck with doctors in my city , but your video is definitely the silver lining to my cloud.
@@takeabreathwithalexis6026 What's your max flow rate? Both of my concentrators have a max of 3 litres per minute. I ohh so hate it when I end up in the hospital on the high flow cannula as that thing is far more uncomfortable than the normal nasal cannula.
I came across your video I have pah 8 year I am on 4 medications I wear a pump just remember we are strong We Are special I've been through a lot my prayers are with you pah friend❤
There really isn't much young representation for patients on supplemental oxygen. It was one of the first things I searched for too. I'm 27 though. I was put on oxygen 2 months ago and we're still doing testing to find out why I can't keep my oxygen up on my own if I'm doing more than sitting down. My lung doctor thinks it's either pulmonary hypertension or heart failure. It definitely had a negative impact on my mental health. I have PTSD and have struggled with panic attacks in the past and needing oxygen brought those back full blast. I still hate people looking and asking about it, especially since I don't have any answers. Just my body is failing. For who knows what reason. Kidneys, lungs, gallbladder (of all things that has to act up NOW?) all falling apart. The ONLY thing I like about my oxygen tank is that the cart has a nifty hook that I hang my keys on. Now I don't lose my keys near as much as before!
Hey 👋 I agree with you, there really isn't much representation of young people who are on oxygen. I'm 30 and was put on oxygen last year, when I was 29. It's tough knowing that your body is failing at such a young age. I hope you find answers and hopefully some peace. It's definitely a journey of progress, we just have to keep our chins up ❤
@@cultofthedreamer Since I quit smoking back in april after being in the ICU for a month I'm now actually able to come off the oxygen. I made the decision to quit after being told that odds are I wouldn't have survived another trip to the ICU for respiratory failure. I recently had another respiratory issue due to post op complications caused by my recent laparascopic right hemicolectomy one month ago today. I spent a couple of weeks in the icu (again) on a vent because it turned out I developed an abcess in my lower right abdomen and had to get a JP drain put in (not a pleasant experience) to remove the fluid which provided almost instant relief. I recently got the JP drain removed a couple of days ago and am waiting for the wound to heal on it's own. Getting the drain removed was definitely far easier and less painful than it was putting it in that's for sure.
I can’t imagine how hard it was to accept being different because of visible indication of your disability. I do love that you include your oxygen in your beautiful photos so hopefully other people struggling with the same can see your beauty including your disability.
@@takeabreathwithalexis6026 I also have a diagnosis of pulmonary hypertension related to my COPD. I swear I REALLY need to find a pulmonologist as the one at my local hospital A. doesn't take my insurance and B. has a lousy bedside manner.
Yes. Sometimes a person can be seriously ill, but their light is so bright it shines through. Nobody knows but you the true depth of disability. Unfortunately.
@@michaezell4607 My experience in the ER with respiratory failure was awful. Mean, nasty people. One nurse told me I was "lucky" to be in bed cos she has to work! I too had to work. My whole life. And never treated anybody like I got treated. I am terrified. Drs are either incompetent or just dont care. Now nurses too? Smh
Good video. Helpful. I just had a double bypass open heart operation. Yeah, another old dude with heart and lung probs. Anyway, I hope your young world was not hampered as much as you feared here (3 years ago.) When time spa e stret he's out be4 you, go on a swing for the fences. Plenty of time to watch the magical game from the bleachers.
Great video! Thank you so much! This really helped me. You are so incredibly beautiful and amazing person! I can tell that dancing is really important to you and that's just so amazing and naming your oxygen tank is really cute and smart! I hope and truly believe you will find the perfect person that will love you unconditionally! Sorry if my English isn't perfect, it's not my first language.
Um GIRLS don't exclusively suffer from respiratory issues that require the use of an oxygen concentrator as I'm a male,I have COPD (end stage might I add) and required the use of oxygen via a concentrator 24/7 when I was hospitalized earlier this year for a month due to my COPD. I'm beyond fed up with women and girls posting these videos about everything from cystic fibrosis to paralysis being an exclusively female problem when such medical conditions can and DO affect males just as much. It's just that males don't crave the popularity and attention that the female brain does w hich is WHY males don't post these vlog type videos documenting their chronic health conditions. For instance I just underwent bowel resection surgery as month ago today...in the world according to what I've dubbed "girlietube" I shouldn't have been allowed to even have the procedure because I'm GASP NOT A FEMALE but obviously I did so there goes that girlietube stereotype out the window..
Hi Alexis, thank you so much for sharing this. I’ve been on oxygen since April for activity (53% lung capacity and have moderate pulmonary hypertension). I am the only person under 30 receiving care in my region so it can feel isolating. I hope you are well and I’d love to connect (if you have the time) to learn from your experiences and expand a feeling of community for those younger people on oxygen 💚
Covid damaged my lungs, now I am oxygen dependant 24/7.
I have pulmonary hypertension and idiopathic pulmonary fibrosis, I have been on oxygen for 9 years this month... I have been on oxygen ever since. I have had the heart Cath 3 times, no fun . I used to be embarrassed for being in complete oxygen but I have learned to embrace it, I don't like taking pictures with it on tho. I was 44 years old and thought I was too young, glad I found you on social media.
Thank you sweet girl for sharing. You look amazing in spite of being stuck in a crappy situation such is Pulmonary disease. God bless and stay sweet. The world needs more folks like you.
I did a fast slide from bad copd to pneumonia and end stage copd.. it happened so fast. As of last week I am now oxygen dependent 24/7. If I get off it to do minor cleaning, my pulse ox drops to a frightening 82 in 15 minutes. The thing beeps a warning and I strap on my cannula. Then watch as my pulse ox rises to an amazing 96! The pulse oximeter is my new constant companion. I'm alone in this. My dearest best friend passed in my arms here at home March 3 from her copd. She also had blood clots stroke and three heart attacks. All of which happened after our 3rd covid vaccine. Her husb is a Narccisist supreme and he is not speaking to me since I got pneumonia and spent 3 days in hospital. He left the house a fly -ridden mess and shut off the AC! He got psychotic when I turned it back on. 80 degrees in the house is for LIZARDS. I will be spending my last remaining days trying to get stable enough to have my disability SSA upgraded so maybe I can move to a safe location far from him.
PAH warrior here May 18th 2018 my o2 moment, 6 years later I thank God for my o2.
Lot's of love from India 🇮🇳🇮🇳.. am to recently diagnose with pulmonary hipertension.... I love you sis cause uh giving ur experience with pulmonary hipertension .. and how to live with it uh give me a power to live with it 🤞❣️❣️
Awe that’s the sweetest thing I’ve heard all day. Please feel free to to DM on my Instagram page if you ever need help with anything.
HI POONAM!
I AM FROM INDIA AS WELL ND HAS BEEN DIAGNOSED WITH PH (CTEPH). I HAVE TO LIVE WITH OXYGEN AT THE AGE OF 16 AND THIS IS GOING ON TILL 14 YRS.
I am so grateful I came across your video + channel ,I am not having much luck with doctors in my city , but your video is definitely the silver lining to my cloud.
So inspirational I admire you so much. I love you Alexis ❤
Love you too 😘😘😘
@@takeabreathwithalexis6026 What's your max flow rate? Both of my concentrators have a max of 3 litres per minute. I ohh so hate it when I end up in the hospital on the high flow cannula as that thing is far more uncomfortable than the normal nasal cannula.
I came across your video I have pah 8 year I am on 4 medications I wear a pump just remember we are strong We Are special I've been through a lot my prayers are with you pah friend❤
There really isn't much young representation for patients on supplemental oxygen. It was one of the first things I searched for too. I'm 27 though. I was put on oxygen 2 months ago and we're still doing testing to find out why I can't keep my oxygen up on my own if I'm doing more than sitting down. My lung doctor thinks it's either pulmonary hypertension or heart failure. It definitely had a negative impact on my mental health. I have PTSD and have struggled with panic attacks in the past and needing oxygen brought those back full blast. I still hate people looking and asking about it, especially since I don't have any answers. Just my body is failing. For who knows what reason. Kidneys, lungs, gallbladder (of all things that has to act up NOW?) all falling apart. The ONLY thing I like about my oxygen tank is that the cart has a nifty hook that I hang my keys on. Now I don't lose my keys near as much as before!
Hey 👋 I agree with you, there really isn't much representation of young people who are on oxygen. I'm 30 and was put on oxygen last year, when I was 29. It's tough knowing that your body is failing at such a young age. I hope you find answers and hopefully some peace. It's definitely a journey of progress, we just have to keep our chins up ❤
@@cultofthedreamer Since I quit smoking back in april after being in the ICU for a month I'm now actually able to come off the oxygen. I made the decision to quit after being told that odds are I wouldn't have survived another trip to the ICU for respiratory failure. I recently had another respiratory issue due to post op complications caused by my recent laparascopic right hemicolectomy one month ago today. I spent a couple of weeks in the icu (again) on a vent because it turned out I developed an abcess in my lower right abdomen and had to get a JP drain put in (not a pleasant experience) to remove the fluid which provided almost instant relief. I recently got the JP drain removed a couple of days ago and am waiting for the wound to heal on it's own. Getting the drain removed was definitely far easier and less painful than it was putting it in that's for sure.
I can’t imagine how hard it was to accept being different because of visible indication of your disability. I do love that you include your oxygen in your beautiful photos so hopefully other people struggling with the same can see your beauty including your disability.
🥰🥰🥰 Thank you so much for always being so supportive Micalah!!
@@takeabreathwithalexis6026 I also have a diagnosis of pulmonary hypertension related to my COPD. I swear I REALLY need to find a pulmonologist as the one at my local hospital A. doesn't take my insurance and B. has a lousy bedside manner.
Yes. Sometimes a person can be seriously ill, but their light is so bright it shines through. Nobody knows but you the true depth of disability. Unfortunately.
@@michaezell4607 My experience in the ER with respiratory failure was awful. Mean, nasty people. One nurse told me I was "lucky" to be in bed cos she has to work! I too had to work. My whole life. And never treated anybody like I got treated. I am terrified. Drs are either incompetent or just dont care. Now nurses too? Smh
Ok You’ll be OK sweetheart no problem don’t never give up
Good video. Helpful. I just had a double bypass open heart operation. Yeah, another old dude with heart and lung probs. Anyway, I hope your young world was not hampered as much as you feared here (3 years ago.) When time spa e stret he's out be4 you, go on a swing for the fences. Plenty of time to watch the magical game from the bleachers.
Great video! Thank you so much! This really helped me. You are so incredibly beautiful and amazing person! I can tell that dancing is really important to you and that's just so amazing and naming your oxygen tank is really cute and smart! I hope and truly believe you will find the perfect person that will love you unconditionally! Sorry if my English isn't perfect, it's not my first language.
Thank you so much 🥰!! I think your English is great 👍🏾.
You are so awesome
Love it!! God bless you... 😘🙏🏻💕
Thank you so much 🥰🥰!! I hope you’re doing well!!
❤
You'r pretty and I thought you did not have tubes till you moved. I am 69 and COPD.
How are u doing dear
Um GIRLS don't exclusively suffer from respiratory issues that require the use of an oxygen concentrator as I'm a male,I have COPD (end stage might I add) and required the use of oxygen via a concentrator 24/7 when I was hospitalized earlier this year for a month due to my COPD. I'm beyond fed up with women and girls posting these videos about everything from cystic fibrosis to paralysis being an exclusively female problem when such medical conditions can and DO affect males just as much. It's just that males don't crave the popularity and attention that the female brain does w hich is WHY males don't post these vlog type videos documenting their chronic health conditions.
For instance I just underwent bowel resection surgery as month ago today...in the world according to what I've dubbed "girlietube" I shouldn't have been allowed to even have the procedure because I'm GASP NOT A FEMALE but obviously I did so there goes that girlietube stereotype out the window..
She never said only girls have respiratory problems your just being miserable