Hello : I'm a Newbie too

I have been diagnosed with COPD for over a year now. I was diagnosed at 34% lung capacity. Have had one exacerbation and it may be lower. Scheduled for a test again soon. Many of the things I've read here ring true for me also. I just want to say that one of the most difficult things is understanding and accepting your new limitations and other people misunderstanding them. Hang in there all. Just knowing you are not alone helps.

17 Replies

oldestnewest
  • I was diagnose 6 yrs ago. I have had many exacerbations and pneumonia once. my mother passed away at the age of 47 with this disease, grandfather passed with it too. I recently turned 44 and I am scare because 47 isn't that far off. since being diagnose I have notice my limitations declining and lately getting worse. I agree that one of the biggest difficulties is understanding and accepting my limitations. I still don't fully accept them and I keep pushing myself to far sometimes. but I really don't think my family understands and gets it fully. My dear Husband is trying and doing his best. And he goes out of his way to help. But they haven't fully grasped it and I see it all the time. I have tried to educate them on this disease due to my experiences with my mom and grandfather, but not understanding my limitations means they don't understand my fear. My mothers life was cruel and short. and I watched her pass away. Seeing that and then getting diagnose myself, you can say has been my worst nightmare. So I'd like to thank you all for being here and sharing your stories. It helps to know someone understands. I pray for us all. Please hang in there.

  • Welcome mrsgoodroach; Have you been checked for Alpha-1, if not you should be in fact all people with COPD should be checked. Yours could be genetic thing. It's very hard to make love ones and even friends understand what we go through. Have them try drawing a breath through a coffee stirer and that might help them out.

  • Yup, like breathing through the tiniest straw. You just can't get that big breath. And then panic sets in. I have found that if I calmly self talk to myself to breath in through the nose and out through the mouth while breathing that way, and repeating it, my panic subsides and I can catch my breath. But if I just keep trying to suck air in my mouth it won't work. That panic feeling is awful.

  • Have you considered trying to qualify for a transplant? I recently became listed, so the wait creates a different lifestyle, but it does give me hope. My lung function is now 24% and I'm at the end of year 5 of a 3 - 5 year prognosis. Also, have you been tested for Alpha 1? Your age and family history points to the possibility that it may be an under lying cause. I'll remember you in prayer also.

  • 24% lung function, that has to be awful. I'm so sorry. I hope you can hang in there and qualify for transplant.

  • Hang in there. We have meds now that are much more helpful than ones used in the past. I met a woman in the Sarasota Better Breathers Club who has emphysema over thirty years. There are also people there with varied FEV. One as low as 72 and another at 80. The gentleman with an 80 uses oxygen only when doing chores. Both are functioning well with oxygen.

  • So sorry.

  • Thank you

  • I was diagnosed with COPD over 4-5 years ago. They have never given me a lung function test. This fall I've been really coughing hard and spitting out tons of phlegm. Daily I'm taking a cough supressant and mucus thinner, along with two inhalers and the nebulizer treatments, using a steroid one every other time. I'm frequently out of breath. Cough so hard I pee and occassionly even poop. And I'm so tired. I sleep when I can, since I'm always feeling like I'm drowning late night/early morning. I'm going to call to make an appointment for more testing or a specialist instead of a GP. But yes, I still smoke about 10-15 ciggerettes per day. Yes, I do know it's killing me. I have been unsuccessful quitting. I did manage to be off real ciggerettes for 6 months on the E-Cig. My blood oxygen levels increased and I coughed less. But my E-Cig broke and I went right back to real ones.

  • The smokes will not let up. just make you worse and worse and eventually kill you and you even get to pay the executioner. Seriously really need to quit it can be done by every one our brains are much more powerful etc then a lousy plant. Might as well quit now cuz one way or the other you will eventually been there and done that

  • Please stop smoking you can get better then you are right now...you can do it!! I will send postive thoughts your way.

  • I want to thank everybody who had responded back. Yes I was tested for the alpha 1 and it came back negative. It's unbelievable how many family members that have COPD. Two of my sisters have it too. My oldest sister has had it for quite a few years, and my next oldest sister was just diagnosed this year with it but hers is mild. So I kind of wonder if that Alpha One test could give you a false result. And yes there's a lot of new medicines out there that help us now, but without the proper insurance I can't even see a lung doctor. I do still smoke but nowhere near as much as I did back in the day. I am down to maybe 3 cigarettes a day and I smoke my e-cig. My e-cig helps me a lot to not crave a cigarette. But all you smokers know there's still that one time that you want it. But again I appreciate everybody's response and positive encouragement. We all are in this together and I so thank God that I found this website and I found you all.

    Oh, I have never checked in on a transplant. I wouldn't even know how to go about it other than just ask my PCP. If anyone has any information they would like to share it would be greatly appreciated.

  • I found that I felt ALOT better on the e-cig than I did on real ciggerettes. I can feel them killing me. This year I plan to try to hey off the cigs and back on the e-cig. I had far less COPD symptoms.

  • Your so right no one knows , and it is frustrating. My per cent is 30 I am on 0xygen 24/7

  • I saw you had a exacerbation. I.ve had several and I wondered if you had to be in hospital? I usually also have fever, cough, low oxygen etc. i just wonder what other people experience.. I have been in the hospital 3 times this year and I feel that I almost died each time. I do not mean to make it sound worse than it was. I feel like especially when I had bronical spasms it was terrible. I was told I have COPD over 16 years ago. I try to live a. Active life but i seem to get sick more often the padt year. Wishing you the best......

  • I was in the hospital once for an exacerbation. My BP was sky high and my feet were blue. I went in for 5 days. That is when I started with oxygen ((9/16). On it most of the time now. Breathing went down again and.i have to start checking into a transplant and disability,

    Good Luck

  • Google the name Jeff COPD Waters. Canibas oil works

You may also like...