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I was diagnosed with stage 4 emphysema. Due to some misdiagnosis and underestimating of the disease, alongside giving me the wrong medication for years, it went from light asthma a few years ago, to full blown emphysema today. I'm guessing it always was, and that the lack of medical provisions just made it worst. However, lately I have noticed a lot more exhaustion from doing nothing. My brain isn't what it used to be, it gets confused much faster, and my personal hobby now is to sleep. My appetite is pretty much gone, and even doing basic chores around the house is becoming a nightmare. I try working out, but I usually get flu like sickness within a few hours. And eating too much makes me violently sick at this point. I had tried a keto diet, and had to stop it, since my body would starve for 32 hours at a time, and still not feel hungry. Essentially had to force myself to eat. The prognosis from online and doctors is somewhat positive, however, I think most doctors are full of crap.

As of now, my lung capacity is around 25% of what it should be. I get exercise induced desaturation now, I can walk up two flights of stairs before my oxygen goes into the low 80s. I never bothered to do any complex studies, but the last doctor I went to suspected right sided heart failure, which doesn't sound super fun. One of the more annoying symptoms is that my body forgets how to breath, so I have to make a conscious effort to breathe in and out. My guess is that the pulmonary muscles have atrophied completely over time

I was diagnosed with stage 4 emphysema. Due to some misdiagnosis and underestimating of the disease, alongside giving me the wrong medication for years, it went from light asthma a few years ago, to full blown emphysema today. I'm guessing it always was, and that the lack of medical provisions just made it worst. However, lately I have noticed a lot more exhaustion from doing nothing. My brain isn't what it used to be, it gets confused much faster, and my personal hobby now is to sleep. My appetite is pretty much gone, and even doing basic chores around the house is becoming a nightmare. I try working out, but I usually get flu like sickness within a few hours. And eating too much makes me violently sick at this point. I had tried a keto diet, and had to stop it, since my body would starve for 32 hours at a time, and still not feel hungry. Essentially had to force myself to eat. The prognosis from online and doctors is somewhat positive, however, I think most doctors are full of crap. As of now, my lung capacity is around 25% of what it should be. I get exercise induced desaturation now, I can walk up two flights of stairs before my oxygen goes into the low 80s. I never bothered to do any complex studies, but the last doctor I went to suspected right sided heart failure, which doesn't sound super fun. One of the more annoying symptoms is that my body forgets how to breath, so I have to make a conscious effort to breathe in and out. My guess is that the pulmonary muscles have atrophied completely over time

(post is archived)

[–] [deleted] • 0 pt

Really sorry to hear about this; if you had bronchopulmonary dysplasia since birth I'm guessing you've had respiratory issues all your life. Have you talked to a doc about transplant? Lung transplant is a real option for you, depending on where you live there's most likely a lung transplant center near you. Call them and ask about the program and what you'd have to do to get into their program and get on a lung transplant list. If transplant isn't an option then look into a pulmonary rehabilitation program (also affiliated with big university-type hospitals) that will help you build and maintain your strength, improve activities of daily living and improve your breathing techniques and behaviors. It'll help with brain fog and rapid decompensation. Stop smoking or vaping unless it is medically indicated! Eat the healthiest food you can and don't give up! Mild exercise and keeping yourself as well as possible.

[–] • 1 pt

Yes, if it was an official diagnosis of BPD, but most doctors have never treated for BPD, so it was re diagnosed to COPD stage 4. I haven't done transplant stuff yet, but my lung function is getting very close to transplant time. At current my FEV1 is 30%, FVC/FEV is around 38%. I failed my first 6 minute walk test with a whomping score of 2 minutes with an oxygen level of 83 and still dropping. By the time i was done it was around 79 . The test was prematurely cancelled due to the plummeting level. I did show a lot of imrpovement with Budesonide, except in the US it inexplicably costs 1000/month, even though the medication is from the 60s. For all the advancements the medical system claims, I find it hilarious that their tried and true method is close to a century old now. Upon further review on a cursory glance on google, i would not be surprised if Budesonide is next on the FDA kill list

[–] • 0 pt

Is nebulized budesonide cheaper? I used it for a while but never knew the cost.

[–] • 1 pt

That was for nebulized budesonide. The only way to get cost down even more would be to ship it from another country. It's around 30$/unit, and for twice a day, you're easily looking at 1800$/month, or 900$/month for single daily use

[–] [deleted] • 0 pt

Never say never. Yeah pulmocort is old school but if it works that's what matters; have you tried the otc budesonide inhaler? They rename and repackage the same old drugs and charge gobs of $$$...FEV1 at 30% is close... There's something called "compassionate use" exception that an insurance company or medicare/medicaid will pay for a drug/treatment; or have the doc give you a diagnosis that will fit into the list of acceptable diagnoses.... Honestly? The sooner you talk about transplant possibilities and options the more choices you will have and better outcomes if you choose to go that route. Even if a transplant center just points you to a good pulmonary rehab program, that would be super helpful.

[–] • 0 pt

Due to some misdiagnosis and underestimating of the disease, alongside giving me the wrong medication for years

Medical malpractice suit?

[–] • 0 pt

Not entirely too sure. The original diagnosis was dysplasia from birth, so emphysema NOT caused from smoking. However, they prescribed asthma medication for COPD, which didn't do anything, since the MOA is different for both.

[–] • 0 pt

I smoked for 30 years. I quit 12 years ago. I have shortness of breath with exertion but can still ride a bicycle for miles and lift weights. My Dr. prescribed me Albuterol but I don't take it. Should I?

[–] • 2 pts

Albuterol has a ton of side effects including cardiac palpitations and dry mouth, at least when i took it. If you can lift weights and ride a bike without it, I would just skip it. The pulmonary world hasn't really evolved beyond putting steroids into inhalers, which is kind of sad to me. But it does show that when rubber meets the road, most severe diseases still do not have anu cures, since those diseases actually require functional brains which don't exist in pharma

[–] • 0 pt (edited )

Check out Grand Mullien uses & effects, mushrooms: notably Turkey Tail, Lion's Mane, & Reishi (the HostDefense/Fingi Perfecti brand is carefully made by a mycologist who really knows his stuff), and Traditional Medicinals "Breathe Right" tea.

Not saying any of these things are a cure, but may reduce inflammation and help with severe symptoms.