Post by kmckellepp on Jul 17, 2009 11:00:37 GMT -5
everyone- I will start with telling you about my history.....in Jan 2002 my left lung collapsed. Spent 5 days in the hospital with a chest tube. March 2007 left lung collapsed again and I had the bleb stapling and pleurodosis. Then less then a year later... Feb 2008 my right lung collapsed. They tried the chest tube but if failed and then they did the bleb stapling with pleurodosis. Had alot of shortness of breath after that. I initially put it off because I had 2 lung surgeries... of course I will be short of breath. It finally upset me enough in November of 2008 I decided to see a pulmo doctor. Found out at the age of 35 I have COPD. I have since then changed to a new pulmo doctor. First one said PFT every 6 months and heres a rescue inhaler. The new one thinks a PFT every 3 months... plus the rescue inhaler and just wrote an RX on Wednesday for Advair. Apparently my DLCO dropped since November and he feels I should be on something more then just a rescue inhaler... I have not picked up the Advair yet.... My most recent PFT from 06-18-09 shows: FEV1 51% Pred. DLCO 17.49 I am trying to tell myself the reason I have been diagnosised at such a young age is due to all of my lung issues. Otherwise I never would have gone in until it was alot worse. Everything I read about COPD is age 50 or older.... What about COPD in younger adults...(50 and older I know are still young....don't get me wrong please!) I don't know... maybe I am just having a hard time excepting this... I thought I had but maybe not!!! Any insight would be greatly appreciated.
Post by Blossom/Jackie W. on Jul 17, 2009 11:15:06 GMT -5
Good to see you jumping right in! Sorry we're meeting under these circumstances.
Looks like you'had a few things going on! First off...... pick up the Advair O.K.?
Your DLCO leaves a lot to be desired right now but your FEV1 sounds pretty darn good all things considered. Many folks would LOVE to have that number I assure you!
Now; 35 is young though not unheard of. I had COPD for a number of years but not "officially" diagnosed till 49 or 50. Even that (at least as it related to the extent of my disease) was considered young.
You might want to inquire about an Alpha 1 test. It's a simple blood test (I'm surprised they've not already done it). I won't go into the disease at this point but PLEASE inquire about it with your Dr. Also; the frequency of your PFT's is unusual; unless there's mitigating circumstances. I guess there's some Dr's that do it but.....
Post by kmckellepp on Jul 17, 2009 12:32:25 GMT -5
Thank you for the welcome! I have had the alpha 1 test done 3 times while in the hosptial. It was normal. They tested me because my father has copd... heavy smoker... and my grandfather also has it... never smoked. I have worked in an office setting my whole life...(durable medical supply company).I get insurance companies to cover power wheelchair (go figure)! At least I will know how to get one myself when the time comes! They say my lungs collapsed because of blebs that have ruptured. My new pulmo doc said I have bullous emphysema... (bleb related). I have had bronchitis and pneumonia several times... prior to my diagnosis. Now they just say the term exacerbation. It seems weird ... before my diagnosis they would do lung xrays... blood work and so forth... once they hear I have copd they dont do any of it and just say exacerbation and throw me some meds. I read on forums how people are in rehab.. know all the meds out there... no what sort of exercises to do... Everyone seems so intuned to whats going on... I feel lost. I don't really know what to do next. If I feel like I am coming down with a cold... I dont know that I want to go in because its a cold and I want to see if I can get over it on my own... but from what I hear it sounds like I should go right into the doctors office... ugh... I need knowledge!!!!!
Hi Kari and welcome, you have come to a wonderful place full of loving folks..... I don't post often but reading what you are feeling brings back many memories so many of us have had....the wanting to know all there is to know and wondering how to even begin.....this forum is a good place and are some others....the mother ship for this forum www.copdcanada.ca/ has lots of good info and is certainly worth a look.......having said all of this I've just gotta say please don't hurry and don't worry one bit about not understanding all of it or knowing all the right terms/treatments/numbers and an assortment of other "stuff"...it will come in time and until then try to keep yourself as well as possible, exercise and work very hard to keep a postive attitude.
Don't EVER be afraid to ask any questions here or to your doctor, if you aren't comfortable with your doc, find another!
your age is young but not unheard of I'm sorry to say and very good that you have been tested for Alph 1......hang in there and ask, ask, ask........
Wow, you've been through the mill, haven't you. I can understand how frustrated you must be feeling, not knowing if it's the COPD causing symptoms or the previous lung problems lurking. I think you should ask your pulmo how he wants you to handle things re: that.
Oh, to have an FEV1 at 51% again!. If you follow all you've learned, no smoking, exercising, eating right (and losing weight if you need to), taking your meds., you will be able to stop the downward spiral, or rather, slow it waaaaay down. As for the PFT testing, my doc has me do it once a year. If I'm sick when I'm scheduled I change the appt. because I won't get a true reading of where I'm at.
No need to panic..right. I remember when I found out I had it. Actually did really good until one day I just crumbled. I'd had a cold and it developed into an infection and I didn't call the dr. until I was so short of breath I couldn't get up the stairs to bed. I ended up taking 2 courses of 2 different antibiotics and felt so much better. I really had myself thinking I'd be 6 ft under by summer. So, if you think you have something brewing in there, congestion, colored sputum, maybe a fever, get thee to the dr.'s! You don['t want to get that bad. My dr. wants to know as soon as I come down with something because it inevitably takes up residence in my chest. It's better to get right on it. Many of our dr.s have given us a 'script for antibiotics to keep on hand in case we come down with something on the weekend, which isn't that the way it is any time we get sick? It's always Fri. and it's the 1st day so we don't call and by Sat. or Sun. we know we need something.
As for being young, yes and I've heard of younger. I think it just got caught on you early because of the other problems. I know I had symptoms in my 30's but I'd never heard of COPD and didn't mention it to my dr. He would have told me to quit smoking, ya know? Stupid.
You'll be ok. Join us often and ask anything you want to know. Somebody will be able to help you or direct you to the place to find the answer. Just remember we are not doctors and shouldn't take the place of yours. Come on over to the "Fence", too. We just hang out each day and keep track of our lives outside of COPD. These people are the warmest and will welcome you with open arms.
hang in there, you came to the right place for great informstion and great people. We all have been through the gamet of emotions you are having. I have to go to sleep, im seeing triple talk to you soon, welcome again!
Kari : Good to see you made it to this on line family of caring people .I'm not going to give you any more info because Jackie 'Wendy Susan & Linndie have pretty much covered all pertinent info needed @ this time. I just wanted to let you know that 3+ years ago after being dxed I was convinced that I only had a few short years left & went straight to the couch to wait to die . I was totally wrong !!. To show where I have come ,with help of goods Dr's., Meds, exercise a + attitude & very important my friends here in copd in Canada, I just got back after a 2250mile flight &5 days from Las Vegas I never thought I would be able to do that !!! I thought I'd be gone by now If you wish you can see my pictures of our trip in the photo Gallery section Remember 3 years ago I was ready to give up & just fade away . You are not alone & welcome to our fine family.
Post by kmckellepp on Jul 20, 2009 14:46:27 GMT -5
Thank you all for your responses. I have looked at many postings on this forum.... its amazing how supportive everyone is here. I guess I start by taking it day by day. Today has been a good day and tomorrow maybe different but I will deal with it as it comes. One question for everyone... Is getting a PFT every 3 months common? Or do you think my pulmo doc is just wanting to watch me closer in the beginning? I know my first doc said every 6 months... now the new one said my DLCO had dropped since the one in November... What does it mean when my DLCO went from 22.47 to 17.49?
Hi In my first year I went to my Plumo every three mos .Now I go every 6 mos. .AS far as #'s go ,they can & will go up & down depending on a lot of factors such as humidity weather you just came off a cold or are just plain over tired . Remember they are #'s I go by how I feel more than what the #'s say. The #'s are important ,but there kinda like ones age ! You are about as sick as you think you are !!