COPD Support Group

Hi, I'm Bobbi and I'm new here. I was diagnosed with emphysema in May of this year. I also have what is called "shrinking lung syndrome". So, I thought that I would come here to learn and maybe get some support from experienced people. I quit smoking on July 2, 2010. It has made a difference in many ways in my life and yes, it's true, I can breathe easier now since I quit. Very well worth it to me. So, I just thought I'd introduce myself and get to know you some more. I hope to lend support when and where I can. It never hurts to reach out to someone who's been there!!! Thanks for the invitation Brenda!! (((((Brenda)))))

Bobbi

Hi Bobbi,

It is so good to meet you.

...and congratulations on your quit! You are doing an awesome job, sweetie. Keep up the good work. I am sooo glad to hear that you are breathing easier.

I have emphysema, too. I am in the moderate/severe stage. Been experiencing constriction around my ribs and still trying to find out what it is. I need to make an appointment with a cardiologist sometime this week. So many appointments. whew! What stage are you in? What medications do you take.

We can support you with your quit, too...however you decided to quit is right for you!!

Keep posting, ok? And in the meantime, take good, gentle care of you.

Sooo glad you came here.

Hugs,

Doris

P.S. Bobbi, i love your avatar!

Hello Bobbi and welcome to our group. Wow, I have never heard of a shrinking lung. I know with COPD they expand. I'm glad you found us and look forward to hearing from you more.

Ask anything, we don't always know the answer but we can help out a lot of the time.

Sue

Doris and Sue, thank you! I also have Lupus (SLE) and along with that comes a whole host of other complications that may come and go at any given time. The shrinking lung syndrome is one of the complications although not so common even among lupus patients. This SLS is causing more problems for me than the emphysema right now and there is no way to tell if the condition will improve. I am at 50 some percent lung capacity now but it has slightly improved since the last PFT. Good news is, I don't have to have a lung biopsy. I have a few doctors because of the lupus. They work together on my case and believe that if I treat the lupus, then all else should be pretty much under control, includin gthe lung issues. There doesn't seem to be any indications at this time that improvement will come, but I'm not placing any faith in that idea yet.

Pluresy is another complication I deal with, but that's another topic! So, that's part of my story and I want to thank you for the welcome...even though I posted here instead of intros!!

Have a wonderful day!!

Bobbi

Wow Bobbi, you really have a lot going with your health. That's gotta be really rough.

You seem like you are the type of person that will not let it defeat you. I really try to be like that but like everyone, I have my days. It wouldn't be so bad if you knew that you would get better, but when you have something like COPD or Lupus, it's pretty much a given that we just have to keep rising above it and do the very best we can. It really drives me nuts when people say they have COPD but it went away. I don't think so. We can do everything in our power as far as exercise, eating healthy, and not smoking, to slow the progression, but you don't have a miraculous recovery.

I'm really happy you are here with us and we will try to help you out with anything you need as far as support goes.

Hope you have a great day and I meant to ask you, do you have any hobbies?

Sue

Being on the computer lately has been my main hobby! I'm artistic and like to paint and make beaded jewelry and key chains, medicine wheels. I write when I feel inspired, though lately haven't had the urge! I enjoy reading sometimes and visiting with friends and family. Love a nice cup of coffee and enjoy the outdoors.

I'm not one to pity myself much but I have to admit there are days when i just want it all to stop! I know there is no cure for my health problems. I just live with it the best I can. My life will be much shorter than I had once thought when I was a child. But I make the most of it if I can. I try to remain positive and I think that although I know there is no cure, I do not give up hope that I can stretch my life as far as possible, day by day. My strength comes from my love of life. I see it as a gift to be treasured and pity those who see it as less than this or take it all for granted.

Peace and have a beautiful day!!

Bobbi

Bobbi, would you tell me more about the pleurisy? What does it feel like? Is it there all of the time? Or does it go away? What medications do you take for it?

I have been wondering if i have pleurisy. It feels like it since i have had it before.

Thank you, Bobbi.

Take good care, honey.

Hugs,

Doris

Doris, pleurisy, I was told can go away, but I'm not so sure about that. I do know that it causes pain in and around the lungs and the pain can vary from mild to severe. It is tissue between the lungs and chest wall, or ribs, or it sometimes can be a fluid, that causes pressure on the lungs. If it is a fluid, it can be drained taking the pressure off the lungs. The pluerisy in me is thought to be tissue and not fluid. So, it has caused partial collapse of the lungs. The tissue can also shrink sometimes, giving the lungs it's volume back, but it is thought that because of the lupus, the tissue will not go away completely. The pain can move around too but mainly it's near the bottom of the rib cage where it's most notable. I hope you don't have to contend with this also. I have to take steroids (prednisone) and imuran to treat the lupus, which in turn is supposed to keep the lung condition where it is at least (I can only hope for improvement). Hope this helps some, and that you don't have it!!

Peace,

Bobbi

Bobbi,

Thank you, so much, for your detailed description of the pleurisy. It does feel like there is something there...fluid or tissue. Something. Yes, there is constriction around the bottom of my ribs. When i breathe in (every breath) is an effort. It stings around the bottom of my rib cage when i breathe in. Nobody (Drs.) can tell me what it is. My Pulmo seems to have a "whatever" attitude. He gave me 3 appointments for the same problem and cannot give me an answer for it.

I am soooo sick of being like this. I am so sorry to hear that you are going through what you are going through, Bobbi. It is aweful to say the least. I cry all the time at night because of it. It gets worse at night.

Does yours get bad at night?

I will just keep going, talk with my husband and keep trying to find somebody who knows what mine is. I don't see that a cardiologist would know. Do you? I have a really good Family Physician. I think i will go to her.

Again, Bobbi, thank you so much. You have been a great help to me. And i wish you well, so much. I so wish i could make it better for you. Whenever i hear stories of suffering like yours, i feel helpless. Nothing i can do but pray.

You are in my thoughts and prayers, sweetie. I hope your Physicians can do a great job of healing for you.

Love and Hugs,

Doris

Post edited by: auntdee, at: 08/04/2010 06:31 PM