"When you hear hoof beats, think horses, not zebras." This medical saying leads to those of us with rare conditions being known as "zebras." As someone with multiple rare conditions, I call myself a pegazebracorn!
Questions? Comments? Topics you want me to cover in more depth? Just want to say hi? Email me! peggythepegazebracorn@gmail.com
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
I do have a home machine I use all the time. I only use the portable when out and about. The reason they say pulse isn't suitable for sleeping is that people naturally breath more shallow at night and it may not trigger the machine to deliver oxygen.
I had to apply for SSDI in Dec 2021 to keep getting long term disability through my then employer. I had the administrative law judge hearing in March of this year. I'm still waiting to hear a decision. I went back to work in January of 2023 and have been working ever since. I work from home, which is nice. I also have a flex schedule which is VERY nice. I have no choice but to work. I'm too young to get enough of an income from SSDI to pay the bills even if/when I do get it.
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! 😊
Oddly enough, the walls basically the same colors as where I lived before so everything I owned fit in perfectly. I hire someone to cook and clean, but yes, laminate-type flooring is so easy to maintain.
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?
@@becomingapegazebracorn sleeping is priority # 1! Sometimes I sleep for 18 hours in a day, because I ran errands the day before. I can’t imagine moving!
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!
When they first found the tracheomalacia, they thought RP, but I don't have any of the normal symptoms of it. No one investigated any further. Doctors definitely don't do well with things they cannot explain. Sorry you've been through it also. Don't hesitate to email me if you ever want to talk! peggythepegazebracorn@gmail.com
@@becomingapegazebracorn I had a Pulmonologist ask me if I get “cauliflower ear” and if my nose has fallen apart, then if not, I don’t have RP. It was then that I knew I knew way more on the subject of RP, connective tissues, cartilage issues than he ever did. But, he said if I absolutely needed to see, go find a Rheumatologist that specializes in RP. So I did and although finding out was super bad news, I was finally feeling heard, because of years of having strange symptoms and finally being heard and got compassion for once. RP can just have cardiac issues and airway issues only. Like I said, there are very specific blood tests that are very uncommon to another Dr. I understand knowing how you feel when having unusual symptoms and not knowing what your diagnosis is. And how it felt when all my gas’s lightings Drs finally stoped and takes me seriously now.
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.
Nice! I didn't order directly through Inogen. Mine did come with a over the shoulder carrier, but since my purse is also over the shoulder, it didn't really work for me.
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.
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..
It sounds like you might has asthma or COPD since the bronchodilator was helpful. PFT's show how your lungs are functioning, whereas x-rays, CT scans, etc. show what your lungs look like. One can be normal and the other not.
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.
I am so anxious as what if the doctor denies of having supplemental oxygen since I feel the need of it? How am gonna convince the doctor that I need oxygen? Please any advice.
Do they know what's causing your shortness of breath? Do you have heart failure, pulmonary hypertension, COPD, etc? Have you had supplemental oxygen, like in the hospital, and it was helpful? Unfortunately, it will be near impossible to get a doctor to write a prescription for oxygen with normal oxygen levels. They need to figure out what's causing the shortness of breath.
I have been to 13 doctors and they all gaslighted my symptoms as having anxiety. Tomorrow will be my first time ever appointment with pulmonologist to see what's wrong with me. I don't know what should I expect. All I know that external oxygen supply has had resolved my symptoms greatly. When I was admitted in the hopsital last year in April, then I was given oxygen and it was at 2L which immediately improved my symptoms of fatigued and shortness of breath. I don't have any supplemental oxygen supply at home. Should I tell the doctor about me given oxygen at the admission in the hospital?
They need to find out the reason first if you need oxygen, must likely they will not prescribe it for you if your 02 is up above 90. It could be heart failure, COPD, fluid overload
@@frankrinaldi3520 Yes. A fistula is a passage between two tubes in the body. In the case of dialysis, an artery and a vein. My fistula was spontaneous, as far as anyone can tell, and was between my trachea and esophagus.
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
Nice! I was told at the time my insurance wouldn't cover a POC. I wish I would have checked myself though. I rent through AdaptHealth when I travel as they were who I was renting with originally.
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.
My portable is a pulse. I have a large concentrator that is continuous fo rmy house. In terms of a continuous portable, they are not as small as the pulse ones. I believe the CAIRE SeQual Eclipse 5 and Respironics Simply Go do continuous and are considered portable.
I'm not going to knock it! I don't have sleep apnea, so really don't expect it to help me, but maybe the trachea is playing a bigger role than we thought? Time will tell.
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
I don't know where else to go at this point. I've been to the three largest hospital systems in Maryland, including Hopkins. I've been to Cleveland Clinic, which is ranked #1 in cardiology. If you don't fit into their boxes, you don't get help.
They're really expensive and usually high sodium. For less than $50, my friend cooked what amounts to 8-10 meals. Can't get that with meal delivery. I've used it in the past but didn't have all these health problems. I also had more disposable income since I didn't have so many medical expenses.
Thanks! My BP monitor doesn't read my BP on the first try anymore. I even bought an Omron when my Walmart one stopped started taking multiple tries, but Omron does also.The Omron has never read it when I'm symptomatic. I know from the Walmart one in the past, when I'm symptomatic my BP can be 70's/40's, but at that point I'm still able to stand. I told my cardiologist this and she just said it was "interesting" and "strange."
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 wear oxygen 24/7 already. I've had a sleep study and do not have sleep apnea. The machine would be because my trachea collapses, so the pressure would help hold it open. I don't know if insurance will cover it for that reason though. We'll just have to see
