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Wow bet it was scary. Take care

How about a bone density check, it will tell you if you have osteoporosis.

I would definitely push to see a Rheumatologist. They do extensive bloodwork that no other dr would know what to test for. My Rheumatologist was the Dr to get a diagnosis. All of my other Drs had zero clue of what was wrong with me & because they only do the regular blood tests, nothing showed any issues. So, I was gaslit to the extreme, I was called a hypochondriac, a malingerer, and was told to see a Psychiatrist. I know my body, and there was something definitely wrong. I also live in a small town in the desert and no other town or city within a 3 hour drive. So, I went to Phoenix AZ and saw a Pulmonologist that specializes in rare lung diseases and a Rheumatologist that deals with rare diseases. Saw them, got diagnosed with in a week. They also tested me for numerous diseases and ruled them out to find the actual diagnosis. I have 2 very rare diseases. Tracheobronchomalacia, Relapsing Polychondritis & Behçet’s disease. These are autoimmune and all of my cartilage and connective tissue are being eaten away. My trachea is collapsed and it’s getting progressively worse. Every bit of cartilage in my body hurts chronically. My eyes are losing vision, my ears are in constant pain, outside and deep inside where there is a small piece of cartilage. All joints, ache. It’s rare, progressive, refractory, no cure and fatal. Five to ten year survival rate. I’m 55, I feel 95. I wear a cpap type of pressurized air mask. Because of my trachea and bronchial airways are about 85% collapsed, I have lower oxygen in my body and if I walk about 30 feet, I sound like I’m having an asthma attack & my lips turn blue when I bring in my groceries. It’s very hard to get a portable oxygen machine because of insurance. When I drive to my dr appointments or grocery shop, run errands or be in nature, there is no portable cpap, and I need oxygen for when I’m away from home. The hose is 2 feet long and I have to stay in my recliner. I cannot lie flat, as I feel that my airways are being compressed. During my bronchoscopy, my oxygen dropped to a dangerous low from lying flat. So, I need to be in a reclined position or upright continuously. I’m in a lot of pain, struggle to breathe and have chronic fatigue syndrome. All of my symptoms got way worse after I had Covid 2 years ago. I hope you get diagnosed properly and Dr will get you the referral. Maybe find out from your insurance of what Rheumatologists are on the list & call them and see if they can help get your other drs to refer you. Keep pushing for it. Good luck and hope you have a good Labor Day weekend.

Good luck

Congratulations

Best of life for you sweetie!

Good luck on heart cath. Had to cancel mine last Thursday, they were running 2 hrs behind and couldn't guarantee what time I'd get in and it's a 3 hrs drive

Thanks for posting.

Have you done a bone density scan. Take it easy

Does your insurance covers your oxygen

Does your insurance covers your oxygen

I hope you'd reply. Take care.

Also can you show up your home oxygen concentrator? If it is possible?

Hello, how are you doing? I went to pulmonologist. I was given tests like Echocardiogram and CBC but my tests showed no abnormality. Only did my PFT test showed restriction. I complained again to them about difficulty in breathing and having memory problems but they also disregarded my symptoms as you might have psyche issues. I am lightheaded most of the times and I am having headaches. They gave me inhaler and called me back after 3 mths for the follow up. How am I gonna convince them that having had oxygen made my symptoms better? How am I gonna persuade them to write me for oxygen? If I ask them they might bring up my spo2 level. It is so difficult to get going like this. What am I supposed to do?

You will get better

Take care of yourself

Thanks for sharing this … I needed this to serve my customers better. ❤

Is all your medical bills covered by Medicaid

Have faith !

🙏🏽❤️❤️❤️

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