COPD & Emphysema Support Group

COPD is a progressive disease characterized by airflow obstruction or limitation. Emphysema is characterized by loss of elasticity of the lung tissue, destruction of structures supporting the alveoli and of capillaries feeding the alveoli. Both have symptoms that include shortness of breath, among other respiratory troubles. If you are a COPD or Emphysema sufferer, join...

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/ COPD & Emphysema Support Group

Impatient for answers :(

rosaleec
rosaleec
I am not sure if I am in the right place anymore. Just as I thought I was getting somewhere and getting answers everything changes again. So my Pulmonologist has been ordering a bunch of tests and looking at all my medical records I provided him over the past four years. Good news is my PFT results were great and my stress test and echo results were great. Soooo what did the radiologist see in my CT scan that he says I have emphysema? I still get SOB with exertion or lying down. He is thinking I have drug induced Lupus being caused by my BP medicine. The only BP med that doesn't cause an exacerbation of my vasculitis. He feels the Lupus is affecting my breathing, which can happen. So he feels I may not have emphySema after all..

I know this is kinda good news, maybe or just switching diseases. Everything is just so confusing and frustrating. I just want answers and being patient us very hard.

So I guess I may have to find a new group?
joany
joany
I suggest you continue to hang with us - for now. There's suggestions, support that may help because we have breathing difficulties - no matter disease or causes. Take care....
luvmygirlz
luvmygirlz
I hope you find a definitive diagnosis soon because there is nothing worse than waiting & not knowing. I was tested for Lupus many years ago because the redness on my face looked like a butterfly rash across my cheeks & nose... from my understanding of Lupus, it's a systemic disease that can affect any or all organs. I was relieved when I was told I didn't have it until I was diagnosed with Pulmonary Sarcoidosis, which also affects any or all organs so basically I traded one for another. I hope they find answers for you very soon &I'm sorry you have to go through the waiting game again...I agree with Joany that you should stay with us any way!

(((HUGS)))
Michelle
bjrapp2020
bjrapp2020
RosaleeC, I also hope you get a definant diagnosis soon. That has to be flustrating and stressful waiting. We like having you here, and even tho you may go to another group, you will find this one has many answers for many things. So please stay, and keep us updated on what is going on with you.

BJ
jarca
jarca
I hope you get an answer soon. How frustrating.
If it is caused by certain medicines, have you quit those meds?
From what I "skimmed" about drug induced lupus it can be cured by stopping the meds & NSAIDS???---that would be good news.

did you get to see your ct scan & go over it with your pulm.? I too wonder what radiologist thought he saw & I would want to have someone show me the ct & explain what it does or doesnt show.
geez i can understand your frustration! you got me wondering & wanting to hear answers, so i can only imagine how you feel.

when you get SOB does your 02 drop? did your pulm do a 6 minute walk or a sleep study to see if your 02 is dropping at those times?

I can't rely on a simple room PFT, I have to have the "in chamber" one. with my "dual" lung problem my PFT reads that I have a normal FEV, it's my diffusion (DLCO) is only 37% (common for cpfe)---
prayers are with you.
redvelvetcake
redvelvetcake
Hope you find answers! You are in the right group for support, I don't have COPD but my father does (and my grandpa did). I have asthma that ebbs and flows but I'm here for suggestions for my father. So a very awesome and supportive group and wonderful friends here. I like to post to see how people are doing...and I like to give updates on my dad, and he tells me what works for him so sometimes I have a suggestion....but mostly the support is good. The friends are good and the posts and articles are good. I hope you get some relief soon ((((HUGS))))