Distal Acinar / Paraseptal emphysema
I was just curious how many others are suffering from distal acinar emphysema, also known as paraseptal emphysema. From what I can tell this is a fairly uncommon form, and I haven't found too much in the way of support groups.
My pulmonary specialist continues to point out that my fev and lung volumes are still within normal ranges, however my dlco has been reduced to 62%. I'm not entirely sure if he keeps pointing that out as a silver lining, or because it's still qualifies me for LVRS.
I'm just curious how many other members are suffering from this condition, and how they are managing their day-to-day routines.
- Thanks for posting and sharing your story with us. You're right, it is an uncommon form of emphysema that involves the distal airways - thus the name. I will be watching to see if anyone else in the group has this type of emphysema.
You may also want to post your question on our Facebook page. There are many people that participate in that and you may find someone that isn't here. The link is at the bottom of the page.
I'm glad to see you have a pulmonologist that your working with. It's so important to manage this proactively - which it looks like you're doing.
Best,
Lyn (COPD.net site moderator)well, if nobody minds I am going to use this post that's kind of a record of progress. Well, when I remember that is.
So I've completed pulmonary rehabilitation, I cannot stress enough how useful that class is if you can get into one and afford it. Even after insurance I still have to pay $4,000 out of pocket. But again, it was worth it. The breathing techniques that they teach you alone are invaluable.
August 30th I have my next pulmonary function test, the first in 2019 had my dlco reduced to 78%, the 2021 was reduced to 62%. This year should give us a fairly good idea of how much I'm losing on average.
Medications: combivent respimat, stiloto respimat, and a quick acting albuterol sulfate inhaler. Due to an albuterol reaction in my first pulmonary function test, I've been listed as albuterol sensitive and have avoided rescue inhalers. At my last pulmonologist appointment I complained that the combivent still wasn't providing enough relief, and we agreed to do a challenge on the albuterol. So far I'm steady on Albuterol provided that I wait at least 5 hours before taking the next dose. I know 4 hours is recommended, but I get a little shaky at 4 hours. My wife is a merchant Mariner and out of the country for another 2 months, so fine-tuning can wait till she gets home so there is somebody to watch over me.
I think one of the things that nobody really talks about a lot is the fatigue and exhaustion. I know my doctors don't understand it, they don't have my condition. I mean when I tell them that I'm fatigued and exhausted, they're thinking about the kind of exhaustion that sets in after working 12 hours a day, commuting 2 hours home. And that exhaustion sucks, been there done that. But the type of exhaustion and fatigue I'm talking about is the type where it feels like someone wrapped a woolen scarf around each of your limbs, and then soak those scarves in water and then try to housework. That's the type of exhaustion that my doctors don't seem to understand.I don't think Dr's do understand that kind o exhaustion, or fatigue. They don't have COPD. I like to say, someone just pulled my plug, and I'm all done. I can hardly even walk sometimes, I just too tired. 
well it's probably a good thing, at the end of the day, that my doctor really doesn't understand... if they understood, they probably wouldn't continue to practice medicine.
I alsohave this condition. My fatigue levels arethrough the roof. Oxygen level good dlc 80, seems lately Im getting worse. Hope I can get some of my energu back
well hello there. I'm sorry to hear that you have this as well, but good to meet you. Yeah if your dlco is still about 80, then it sounds like we're on the same trajectory, I'm just at a different part of the arc. I'll keep updating this is things go by, but if you have any questions feel free to message me.
Noone really understands how drained you are physically unless they are living it. If i find something that helps Iwill surley post it.
