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Has anyone else had their pulmonologist just completely give up on them? Sorry I know this group is for tips and I'm just here venting. This happened back in January but I'm still not over it. I saw Dr. Smith at UCSF. 4th appointment that year. He said my FEV1 was 47, down from 58 in October. He looked at the chart for maybe 20 seconds and said "Diane we need to talk about oxygen." That was it. That was the whole appointment basically. He gave me the referral and said they would call. I asked about other options. Like is there anything else we can try first. He said "this IS the other options. We already tried the other options." Ok that was 6 months ago. I'm supposed to be on oxygen right now because there "aren't any other options" — but my last spirometry came back at 62 and i’m back to wearing bras like a normal person. Let me tell you what i did. So the backstory. I've had COPD for 8 years. Got diagnosed at 58 after I noticed I couldn't make it up my own stairs. I smoked for 30 years. Quit months after I got diagnosed. For a long time it was manageable. Inhalers. Trelegy. Rescue inhaler when I needed it. My numbers stayed pretty steady for while. Then about 3 years ago things started sliding. Little by little. More mucus in the mornings. Coughing fits that would wake up my husband. I'd clear my throat and it was like glue coming up. I started keeping a tissue bag next to the bed because I was going through so many. My pulmonologist kept saying "this is just how COPD progresses Diane." Every appointment. Same line. "This is just how it progresses." Ok fine. But isn't your whole job to slow it down??? Anyway I tried to manage the mucus myself. Started with Mucinex. 1200mg twice a day like everyone in my support group said. Worked for maybe 2 weeks. Then nothing. I was still coughing up glue every morning and now my stomach was a mess on top of it. Then I tried mullein tea. A woman in my group swore by it. Drank it every morning with honey because let me tell you that stuff tastes like boiled weeds without it. Did that for 3 months. Absolutely nothing. Maybe I was slightly better hydrated? Then I tried mullein tinctures. The drops you put under your tongue. Tasted like mold and turned my tongue green for like an hour. I stuck with it for 4 months because apparently "it takes time to build up." Still nothing. By the time January rolled around I had basically given up trying stuff. I figured the doctor was right. This is just how it goes. And then the appointment happened. I'm not going to lie to you. I cried the whole drive home. I sat in my driveway for probably 40 minutes because I didn't want my husband to see me like that. I just kept thinking about my mother in law at the end of her life hooked up to that tank dragging it around the house and how she wouldn't leave the house for the last 2 years of her life because she was embarrassed. I did not want to be that. A few weeks after that appointment I was going through my phone and I realized I hadn't seen Rachel at pulmonary rehab in months. Rachel was my rehab buddy. We'd been in the same group for almost a year. She was stage 3 like me, maybe a little worse actually. And she had just… stopped showing up. I figured the worst. I really did. I almost didn't message her because I didn't want to hear bad news. But I did. She messaged back in like 10 minutes and said "Diane I'm so sorry I've been meaning to reach out. I actually stopped going to rehab. My FEV1 came back at 68 last month." I read that message four times. 68?? When I met her she was at 42. I called her that night. I was like Rachel what the hell are you doing, what did your doctor put you on, I need to know everything. And she said "it's not from the doctor." Here's what she told me. She said she'd been reading about how mullein actually works. And the reason everyone takes it and gets nothing is because they take it the wrong way. She said when you drink the tea or take the drops or swallow the capsules, the mullein goes to your stomach first. And your stomach acid basically destroys most of the active compounds before your body can use them. The tiny bit that survives goes into your bloodstream and gets spread around your entire body. Your arms. Your legs. Your liver. Everything. By the time any of it actually gets to your lungs there's barely anything left. She said think about it. Why would you send medicine through your stomach and your whole bloodstream when the problem is in your lungs? I sat there with the phone to my ear and I swear to god it was like someone turned a light on in my head. That's why the tea didn't work. That's why the tinctures didn't work. That's why I'd spent hundreds of dollars on mullein products and felt absolutely nothing. The mullein was never getting to my lungs. She told me she'd started using some sort of mullein inhaler. You breathe it in like you would a regular inhaler. The mullein goes straight into your airways. No stomach acid. No getting diluted through your whole body. It goes right where the mucus actually is. She said it's the same way your nebulizer works. Your pulmonologist uses a nebulizer because inhaled medicine works better for lung stuff than pills do. Everyone knows this. But somehow when it comes to mullein everyone is still doing pills and teas. I ordered it that night. I didn't even tell my husband because honestly I was embarrassed about how many things I'd already tried. Week 1. The morning mucus was thinner. Still there but thinner. Easier to bring up. I wasn't hacking for 20 minutes trying to clear my throat. Week 2. I slept through the night for the first time in probably a year. I woke up at like 6:30am and laid there staring at the ceiling trying to figure out why something felt weird. It was because I hadn't been up coughing at 3am. Week 3. My husband said "you haven't used your rescue inhaler today have you." I hadn't even noticed. I'd gone from 5-6 puffs a day down to maybe one. Week 5. I walked the dog around the whole block. The whole block. Without stopping. I have not done that in 2 years. Week 8 is when I knew something had actually changed because I was wearing a bra again. I know that sounds stupid. But when your lungs are bad any pressure on your chest feels like suffocating. I'd been living in pajamas and loose shirts for 18 months. I put on a real bra one morning and forgot I was wearing it until I got home that night. Week 10 I went in for a spirometry. I hadn't told the doctor anything. 47 in January. 62 in April. He looked at the screen. Looked at me. Looked at the screen again. He said "Diane this is… this is very unusual. What have you been doing?" I told him. He wrote it down. He didn't say much else. I think he didn't know what to say. I walked out to my car and sat there again, like I had in January. Except this time I wasn't crying about oxygen tanks. I was thinking about my mother in law. How she spent her last 2 years hiding from the world because of that tank. How I was going to be her, 6 months ago. And how one conversation with a woman I almost didn't message changed all of it. Ok, sorry that got long. I just wanted to share because I know how many of you are where I was in January. Being told there are no more options. Being told this is just how it goes. It's not how it has to go. EDIT: A bunch of you are asking what it's called. It's Revair. The site is https://saffralabs.shop/pages/breathing-mullein. The doctor obviously didn't recommend it, I don't think most of them even know about it yet. Rachel found it through a COPD forum I think. They do a refund if it doesn't work for you which is how I talked myself into trying it after everything else that didn't. Also - I'm not a doctor. Don't stop your inhalers or whatever your doctor has you on. This was on top of everything else I was already doing. Just wanted to make that clear before anyone yells at me lol.