My name is Cindy and I was sooooo happy to find this message board! I am 38 years old and was just diagnosed with moderate COPD. I am still confused and so is my doctor. My life has changed in the last two weeks.... I went from feeling just fine to suddenly not being able to breath very well one night, to not being able to breath well every day, and then being diagnosed with COPD. Does anyone know of other causes for this disease in younger individuals? I was a mild smoker (maybe 1/2 a pack a day), with no known health issues.
Emotionally this is awful to go through, so this site and the sharing with people who are in the same boat is so important. I am still waiting to see a specialist.
Hi Cindy, Welcome from a fellow 'newbie' Sorry to hear of your recent diagnosis. Has your Doc considered something called 'Alpha1 anti trypsin deficiency'? It is a possibility if you have COPD at a young age or are a non smoker / light smoker. You might want to ask to be tested for it - it only requires a blood test. I am Alpha1 myself, that's why I thought of it - others may be along later and perhaps they will have other suggestions. I am here at this hour because living in England I am on a different time - currently almost 9.30 am here - I've just had breakfast and am off to tidy the kitchen now. I guess folks in Canada and the USA are sleeping soundly in their beds now. Anyhow - google Alpha1 anti trypsin deficiency and see if it sounds like a possible explanation. Best wishes, mumsie.
Thank you for the warm welcome. I had read a bit about Alpha 1, I will ask the specialist when I meet with him/her. I am going through I guess what they call a "flare up" right now. I am not sure how the heck I am going to manage with work... each day is a struggle. I worked a full day yesterday and just the simple task of carrying a bag of milk home after work knocked me out. I fell asleep at 7pm, woke up breathless at 3am and I am still struggling to breath at 5:45am COPD stinks!
Cynthia....are you using any inhalers? Sounds like something is not working too well. I hope you won't wait too long to see a doctor. I'm not talking about the specialist...just a regular doctor. If you have an infection of some sort it should be looked after sooner, rather than later. You don't want to end up in the hospital.
Welcome to the forum. You'll find us a concerned bunch of folks so be prepared for us to make suggestions.
Thank you all for the very warm welcome. I am on advair, atrovent, and ventolin. The first two I was told can take some time to start working, the ventolin does not work at all. I feel a bit of relief initially with the atrovent but the breathless feeling is just a rollercoaster all day, worse at night.
My doctor just tells me there is nothing to worry about so I decided to see another doctor today for a second opinion. He put me on Prednisone for the next 5 days to see if that would help to open up my airways. He felt that COPD was diagnosed too quickly since I really had no symptoms before. My lung x-ray was clear so I really do not know what to think.
Either way I am so happy that I found this site. I put this link on facebook... I felt terrible for COPD sufferers that were leaving questions on the american COPD page with no responses. If anything more people now have a welcoming supportive place to turn
Hey there, Cindy! I sure hope you are able to get some answers. To feel the way you do and not really know what's going on and not be helped by the meds is really scary, isn't it? Do you have an appt. with a specialist yet? I don't know what tests you've had done, but a lung xray isn't the way they diagnose COPD now. There is a Pulmonary Function Test (PFT) done that tells all you need to know about whether or not you have it and also the severity of it, plus some other information. It's done by you sitting in a booth and breathing into the machine. Not hard to do and totally painless. The Alpha 1 test is a blood test that is easy peasy like any other blood test.
Thanks for passing along the forum's address on Facebook. The more people we can reach the better job we can do informing people and teaching them. And Support, too! By the way, where do you live in this big wide world of ours? There's a place in your profile to put it in and it really helps when we're giving out information and answering questions. Believe it or not, things are not the same all over the world, .
I'm surprised the doctors are saying COPD to people without doing at least a spirometer(?) test. That's the only test I had when diagnosed. The doctor's office had the little hand held device. I'm sure ALL doctor's offices could afford this small piece of equipment and use it for suspected COPD. They could also use it to show smokers how bad their breathing really is. Anybody know why doctors don't use it?
Post by Sue in Ontario on Mar 7, 2012 11:30:53 GMT -5
Hi Everyone., It is a beautiful day out today in ontario,i live near Windsor and it is going to 15 celsius today.i must try and walk today.I did my taxes last night and barely walked 100ft and winded again.Life is good though.thankful every day we have a new start.Hi Jackie,trying to increase treadmill,hoping to strenghthen up.I enjoy this site and wish everyone better health.Sue in Ontario
Welcome Barb...Did the respirologist do a walk test with you? That is the way they determine whether you need to be on oxygen. 45% sounds pretty good to me. Did they say you needed the oxygen all the time or just for exercise....or didn't they say anything. Usually oxygen for sleeping comes first. I went on oxygen for sleeping when I was about 32%. Now, at 28% I'm on most of the time. I'm trying to exercise too to keep my numbers and hopefully make them better. You should do really good with exercise. Ask questions if you have any.
Hi everyone. Been lurking for awhile. My name is Barb from Ontario. Was diagnosed with COPD 5 years ago. (had quit smoking 2 months before diagnosis) At that time was put on spiriva and formeterol and ventolin when needed. To the respirologist 2 weeks ago and he said I only had 45% lung capacity. Took me off formeterol and added symbicort. He has also put me on oxygen which I don't feel I needed yet as the only time I'm short of breath is when I hurry doing household tasks. I use the oxygen when I want to exercise and that seems to work well. I am 74 years old.
Thanks Sandy for thr reply...couldn't find my first post so put another up. Yes the Dr. sent me for another spirometer test and the walk test. He didn't really say when to use it because I wanted no part of it. Anyway I have the concentrator, a portable pack and another if power goes off. I'm fine at night. As I said the only time I feel I need oxygen is when I exercise or walk any distance, which I hope to do this week as weather is getting better now. Thanks again Sandy.
Barb....don't be afraid to use the oxygen. We were all born with the need for oxygen. You can hurt your heart if your oxygen gets too low. If you get an oximeter it will tell you how low your oxygen gets when doing certain different tasks. Then you will know when you need the oxygen. You will be able to exercise better and longer if you use the oxygen.
Yes Sandy have been looking into getting an oximeter but coming from a small village they are hard to find. I think I'll order one on line. Going to get portable ready and try to walk for a bit while weather is nice..... Will let you know how I make out.
Barb.....When I started looking for an oximeter I called the drugstore here. They said they could order one for me at a cost of $350. Yikes !! Actually, they are really NOT for sale anywhere but online.
If you go to our main website at www.copdcanada.ca you'll see a spot for discounts for members....on the right hand side. It shows a pink piggy bank and says "savings". There are oximeters there for sale.
Went for a short walk and did some exercises but still seemed SOB. The nurse came to see me and told me to up my portable to 3...will try that. I'm now trying to find out my membership #. Sent an e-mail. No response so far. Hope I receive one tomorrow. I called Shoppers Drug Mart about an oximeter. Talked to someone in the pharmacy...she didn't have a clue what I was talking about........I hope she wasn't a pharmacist...pretty scary.... Thanks for your replies Sandy.
not sure where you live? I looked up in the internet for Medical supply companies and found some to phone or email about the oximeters. I am fortunate my son in law works for a medical supply company so it cost me a little less than they sell them for retail. Check the COPD network page. On the left hand side close to the bottom they show where to look for the ones the network sells. Just click on the blue copdcanada.ca
Post by Blossom/Jackie W. on Mar 15, 2012 9:03:36 GMT -5
Hi Barb....... another Barb! Welcome! Heck; I'm gonna have trouble keeping you all straight in my head.
Looks like you're finding your way around which is great! You'll find the folks here informative, helpful and supportive. Many of them have been around the block a few times so to speak and they're more than willing to help any way they can.
(I just want to clarify something btw; we don't "sell" product nor do we receive any funds or advertising for products on our main site. Thease are just savings that certain suppliers were willing to pass on to our registered network members. Becasue of that, we put their info and a link up on our site. The only person who gains is the member and the company selling the product) I know you knew this Ann but I just wanted to make sure that others did as well.)
Hi everyone, I am a 68 male, I first joined this board in 2007 under the name psricha and re registered in 2011 as peter. I was dx copd in 1990 and went on long term disability in 1997. since that time I was dx with colorectal cancer in 2002 and had surgery and now have a ostomy and have been clear of cancer ever since.