Emphysema Online Support Group

My name is Kathy and I found this website today. Its comforting to read the stories of other people that can understand this terrible illness that we all going through. Like I said I'm not new to the illness. I have lost my father (age 56). mother (age 72), sister (54), another sister (age 60) all to emphysema. I quit smoking 12 years ago when I was diagnosed with emphysema...no, I was not a bit surprised by the diagnosis!

I had a pulmonary test done a month ago and was told that I am at 48%.

I'm using Symbicort and Proventil Inhalers. I have not seen a Pulmonary specialist just my regular doctor. But after reading the posts on here I think I am going to make an appt with one.

I just recently vacationed in Arizona and was amazed at how much better I was able to breath. I live in Oklahoma where our humidity is quite high. Have any of you had any experience in relocating because of your emphysema? My husband and i are seriously thinking of relocating to AZ.

I think this site will be very helpful and i thank you all for the information I already have gotten.

Hi,

Glad you're here. I'm glad to hear you're going to a lung dr. I just posted words against the one I had but they're not all bad mine just happened to be and I will be looking for another one. I just don't have to rush because I have wonderful primary doctors that have been a great help.

My lung function test was 40%.

Hi Kathy!

Soooo glad you came here to us. We are grateful for ANY input we get. You may not think it would be important, but information from you will help another person tremendously. For instance, i did not know so many people in one family could get emphysema. Dear God, i am so sorry you lost so many of your beloved family, Kathy.

Yes, my Grandfather suffered from emphysema. He and my grandmother moved to Arizona for a few years for him to be able to breathe. But his illness worsened and he had no one out there to help him. My grandmother was 'helpless'. Anyway he came home and went to heaven a short while later. But he did go to Arizona. Yep.

My lung function is at 46 after i stopped smoking. It was 41. So that is a considerable inprovement. I take Spiriva and Advair and Albuterol. Just saw my Pulmo Dr. on Friday. He said he is going to order a sleep study and put all the info together to see if i need suplemental oxygen. I am having more and more periods of time where i get dizzy and exhausted and incoherent. For several days at a time sometimes. So, we'll see. I will tell you when i go for the test, ok?

Kathy, we would like to hear from you no matter what the subject is. lol We just use this forum for everything. So people don't have to look around for someplace to post. Just post it all in here, honey, ok?

Looking forward to hearing from you.

Love and a Gentle Hug if you want one.

Doris

Hi Tina!

Your lung function is at 40? Are you doing ok on your meds? Just curious. 40 seems pretty low. I am wondering how you are getting along with it, bless your heart.

How are you feeling today? I feel pretty good. Hubby and doggies are still asleep.lol Pretty soon i will get to missing them and go get them. ...the doggies that is. lol

Tina, i am 61, how old are you? If you feel like saying. Everything anyone has to say helps in one way or another.

You and Kathy and our other members are in my thoughts all the time. Praying that you get a good Pulmonologist. Write anytime, even if it is just to vent. Especially that.

Hugs and Prayers,

Doris

Hi Doris,

40% lung function is very low. My "liter" measurment is low also, not sure if it's consided the same but my primary dr explained the liter measurment, that's the air you exhale, ---- 4 liters is considered 100% function, about 3.5 liters is around 80%, my liter measurement is less than 1. When he first saw the result he went-----Wow, that's not good at all!!----

But I'm doing well, the stuff my family dr is doing, listed on an earlier post, is really helping.

Oh FYI Doris (forgot to tell you..lol) I"m 49

Oh Tina, you are so young to have it that low. You are not smoking, right? I don't think you are, it's just how young you are. Tina, get the most fun you can out of life. That is what i am doing on my good days. If i can't have fun, i do some housework or clip the doggies. But i am getting the most fun out of life that i can, now. Life was never fun with an alcoholic husband, but i just ignore him now and do what i want.lol I guess the way i am looking at it, emphy is my license to play and have fun.lol

Do you do that?

Thanks so much for the welcome...this is going to be a good thing.

Doris how often do you get a PFT? I'm wondering since I dont smoke and I am using my inhalers how quickly does the % change? My sister was at 10% when she died, so 48% isn't too bad I suppose. I know people that live long lifes with only one lung. Anything that involves going up inclines or bending over have a terrible effect on my breathing so I try to avoid that.

Thank you so much for giving me the opportunity to discuss this with someone who understands. Hugs.

Kathy

Hi Kathy!

Yes, this is a "good thing".

That is a really good question, Kathy. Everyone with emphysema is different. Some go slower than others. What i do see is that there isn't much difference, though. People who don't get their shots get more damage to their lungs from the infection and the coughing, so they would probably lose function faster than others. So whatever you do, get your pneumonia shot and flu shot. I am going to inquire about a whooping cough vaccination, too. I just found out that adults can get whooping cough and there is a vaccination for them.

Yes, Kathy, i have trouble on inclines and sometimes bending over will take my breath. Especially, when i don't feel well. There was a time, just recently, when i forgot to take my meds for several days. I went so far down that i won't do that again!! lol

Kathy and Tina i am so very glad that you are here with us. The more 'family' we get in here the more we learn from each other. I am learning from you, too.

Gentle Welcoming Hug,

Doris

PS. Kathy, i get a PFT whenever my Pulmonologist thinks i need one. He is ordering one now since i am still having difficulty with exhaustion, dizziness and short of breath during the day. I think he's thinking of giving me oxygen at night.