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On recomendation I was told that a pulse flow machine is not suitable for night (Sleeping) use / you need a constant flow device, This machine is ok for traveling and use while awake only, Your comments please

Do you qualify for SSDI and do the ticket to work program

I absolutely love your condo!! I love the color scheme, very open and roomy! I love your pop out desk! Very cool & space saving! Is there a pantry cabinet in the kitchen? I love pantries! Congratulations! With the flooring it’s much easier to clean and keep dust to a minimum! Thanks for the tour! I’ve been patiently waiting! 😊

You have a great interior design taste.

Nice congratulations

Thank you for your suggestions. They were just what I was looking for. Question to you: how do you keep your cannula tied up nice and neat when you were not using it?

Hey what is the reason you’re using oxygen?? I have pulmonary fibrosis results of sarcoidosis and sjgrogern’s

Nice

Can’t wait to see the tour! How exciting!

Hi! I’ve been following you for several months now. I have 3 rare autoimmune diseases. Very rare. I have Tracheobronchomalacia, Relapsing Polychondritis and Behçet’s disease and MAGIC syndrome. The 3 together are extremely rare. As I’ve been following you, and now with the last few videos of your challenges with a proper diagnosis. My trachea and my whole lungs, all my airways are 85% collapsed. I was diagnosed with that 2 years ago and I’ve been experiencing lots of awful symptoms and I live in a small town in the middle of the Sonoran Desert 🌵 in southwest Arizona. It gets to be 122 in the summer here. No joke. It was 111 today. This heat makes me way worse. I stay inside and I wear a a cpap type air pressure mask 24/7. I can’t walk 25 feet without gasping for air and wheezing so bad. Any type of exertion makes me so oxygen thirst. Like taking a shower. I have to lay down and nap after doing that. Or bringing in my groceries. So I walk very slow and it’s not portable so when I go to town, I can last a few hours before I go home and relax in my recliner with my mask machine on. It’s set to a very high pressure because I can’t exhale all of my c02, and that makes me very exhausted all the time. I can’t take a deep breath because there is no room for more air, because I can’t fully exhale anymore. Ridiculous really. So, after 4 pulmonologists in my town, said there was nothing wrong with me and they started talking to each other and decided I was a complete hypochondriac! Here I am struggling to exhale and they said I was faking for attention! Yea! Medical attention! How can I fake my short, noisy exhale that feels like it’s 20% of normal people?! So, I drove 3 hours one way to Phoenix, to see an interventional pulmonologist that deals with unusual problems with breathing. He was super mad that how I was treated by my lame towns Drs! I got an endoscopy scope wile under anesthesia and he saw alll the collapses and I got a CT scan of my airways. I’ve been suffering for 4 years and this Dr diagnosed me right away with Tracheobronchomalacia! However, I told him about alll my other awful scary symptoms and he got me an appointment to see a Rheumatologist that specializes in rare autoimmune diseases. Back in my lame town, I was sent for bloodwork and the dr said I was fine, nothing came back unusual. Pfft. The Rhumatoidologist , also in Phoenix, sent me for a huge blood work tests. Like 15 vials of blood were extracted from me. Some were special send out tests, and apparently very expensive too. I’ve got good insurance right now, so there were like 45 tests done for me to figure out what is happening to me. I was immediately diagnosed with Relapsing Polychondritis. It explains all of my odd symptoms and, last year , all of these strange symptoms appeared all of a sudden! I was also diagnosed with type 2 diabetes as well. My whole body had so much inflammation that my Dr was mad that none of my lame local drs did not even look for things like MS, Lupus, arthritis type diseases. I was also diagnosed with Psoriatic arthritis. I have tiny spots of crusty sores on my scalp only. And my finger nails have all kinds of deep ridges too. I’m a medical dumpster fire! Please look into Relapsing Polychondritis. There is heart issues that go along with this disease. My eyes are red and losing my vision pretty fast. Eye, heart, cartilage, connective tissue problems, joint problems and ears, nose and lung problems. Basically, RP, is an autoimmune disease that my body is attacking every bit of my cartilage, connective tissues and have vascular problems. There is a group of people that have hyper mobility and have RP too. With or without the gene. It’s so rare that even regular Rheumatoid drs have zero clue about it. And, pulmonologists too. It’s very rare, they probably heard of this in med school but only spent 3 minutes on the subject of rare diseases that can occur. Not only have they not even heard about it, they have zero clue on how to test for it. There is a hospital in Philadelphia that deals with RP, and are the best! My dr calls the drs there to discuss my case. So, I might go to see what new thing to try. So, unfortunately, RP, and TBM are progressive, no cure and rare. Especially together. Or in my case very rare. Lucky unlucky me. However, steroids seem to make sense to take to bring down inflammation. But, makes TBM get worse faster! So, I’m off them. My pulmonologist says it’s a catch 22 for me, because steroids can work for my airway collapses, but, by having RP, speeds up the progression of my symptoms and malfunction of certain organs. So, 6 months ago, my Rheumatologist prescribed Methotrexate, a form of chemotherapy that possibly can slow down the progression of my body eating up all my cartilage and joints, etc. I self inject once a week. I’m pretty sick for a few days after. I relapse usually for 10 ish days, then in remission for 4,5 days. It’s exhausting. I’m on Ssdi as I am no longer able to work in any capacity. I’m 55, and with all my diagnoses, I qualify easily. I’m in a support group on FB. What a blessing they are! I felt so so alone. Only a few have all 3 like me. I recently found another woman in Italy that has exactly what I have. Everyone is different, certain parts of the body are worse than others with comparison. I’m so glad I found you, I hope that you can finally get diagnosed with something, so you can learn more, on how to not get worse! And acceptance! I’m just getting into eating the anti inflammation diet. And the Mediterranean diet as well. Since I’m half Italian and half Russian/Polish Jew, it makes sense that I am predisposed to these diagnoses. I got genetic testing and it proved that my genes and DNA are involved in my health problems. So, I just wanted to reach out to you, to hopefully help you on your path to correct diagnosis. I hope we can talk more about what we deal with. You can message me anytime!

Oh, to be on a flow level low enough for a concentrator like that! My level is 10LPM or above. When I travel, I travel with my normal home concentrators. When I was diagnosed with my interstitial lung disease I decided I was way to young to just sit home and waste away. We do what we have to do to have an active life! Blessings to you as you go forward.

we got ours from Inogen and it came with a backpack, charger, extra battery and waist carrier..

This is so helpful. Thank you for posting this video. It’s hard to find out information about using oxygen. Your advice has been invaluable.

Thank you for sharing

Good luck

Thank you very much for sharing this. I'd love to hear the followup. Really appreciate the video and the information about the preload failure. Thank you.

Good luck

I went to pulmonologist on Wednesday. And he suggested two tests. One was PFT and the other was the chest X-ray. I had done both. My X-ray was alright but my PFT result was different. It showed moderate restriction before using bronchodilator and mild restriction after using bronchodialtor. So, after looking at my PFT report, the further suggested to go for HRCT scan. Now, the situation is my report came and it showed everything is normal but my PFT test showed that there is a problem. I have yet to go the doctor for the second time. My shortness of breath remains the same. I am fatigued most of the time. It has been affecting my daily life. I am out of breath all the time. Should I discuss with the doctor for doing further tests? And should I also ask for the oxygen? I can't go on like this. It hurts so much. The doctor said that if the scan comes normal then we will declare that everything is fine and there is nothing wrong. What am I supposed to do now? i am in such a misery because of having constant shortness of breath. The doctor also was in such a hurry. I am dreading that what if he doesn't listen to me in the next appointment. I am also confused that my PFT test came out different but scan result showed no abnormality in the lungs. Should I ask the doctor for bronchoscopy to check my airways? Maybe if one of my airways has become narrowed. Sorry about my English as it is not my first language. I tried to explain in the best manner I could. Please reply whenever you can..

Hello, I watch your every video. I like to ask something. I have been having shortness of breath for over a year. But the fact is my oxygen level doesn't drop. Tomorrow is my pulmonologist appointment. Should I ask the doctor for supplemental oxygen so I could be able to breathe easier? What am I supposed to do?or should I wait for the tests? It has been so hard. I have been very much fatigued.

Great news

Where you on dialysis

My insurance covered my poc and I get the 50 ft green hoses. If I went out of town lincare said they can get me a concentrator. I like the 7 ft with the tab. I replace mine every two weeks, I use dialysis cannula and replace them once a week

Do you have anxiety or depression issues? If yes then do you take any medications for that?

Can you tell that when do you change your nasal cannula? Or how often do you need to change the nasal cannula? please reply.

A loss, and a grief I am all too familiar with. There are no words, I am so sorry, it is heartbreaking.

Hang in there, things will get better

You take your oxygen machine when you exercise thanks. Hope they find out what's wrong with you

So sorry for your loss

Does wearing oxygen help in breathing easily?

You ever try probiotics

good doctor and good teacher are 50%of success if not more!

Do you have the pulse or continious flow . I'm new to the oxgen and am having a hard time getting used to it. I'm continueous flow and can't find a portable machine to carry with me.

I'm on bipap with o2 at night. Good luck

I think I'd rather be dead. This doesn't work for my lifestyle.

Believe it or not, I managed to overcome the kidney inflammation by doing car repair for the upcoming smog test!

Have you done a bone density test

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Ask about bipap if your on oxygen. It makes you breath easier at not

Nice

Better do fundraising & if possible promote or run advertisement of it in every social media that would cost you much lower than these unwanted expenses because you will realize in near future that these doctors have suck your whole money savings very fast 😂

I dont know whether I am right or wrong person for you, I dont know whether you have trusted clinics in your city or whole country but I have heard "Ayurveda" sometimes give ray of hope although you need to do some little research before trying ayurveda because like your facing problems with those current doctors so it cam happen with other doctors as well. I may sound promotional but its not, I am just giving reality check rest is your choice

If they don't do anything for you I would definitely change clinics

You ever looked into meals delivery

sounds like vertigo, they can give you a test to see if you have it

Fee🎉better. Sounds like your BP is dropping. Take your vitals when it happens next

Hi Sophie, we worked together at Sheppard. I'm so sorry this health crisis continues. Sending positive, healing thoughts ❤

Hi! Good to hear from you ❤

I've just done a sleep study and that's how they adjust the pressures. I've never had tobhave a scope down me, to adjust pressures. You might need oxygen at night, your oxygen could be dropping, I woul also ask for an overnight study to see if your o2 drops while sleeping. If you have good insurance it should cover your machine. Good luck

I was lucky my doctor filled everything out for me. Good luck