Diagnosed with Severe Emphysema

[kellie3]

Hi,
I am new to this group. I have to admit, it's one group I would rather not have a memebrship to.

I was just diagnosed with Severe Emphysema. Like usual, the doctors nurse called to tell me the resuls of the pulmonary function test. So, I haven't spoken to the pulomonolgist yet.

I have a really bad habit of not hearing what the doctors say anyway. As soon as I hear the first of any bad news I lose my hearing! I always think I will take a recorder with me so I can play it back. My husband tells me he will go with me, but I always have an excuse why he shouldn't go. For some reason he is the one person I want to keep out of the doctors office. I suppose it's because I want to have him look at me like the woman he married and not like some aging woman who is now struggling for breath! Ughh!

Anyway, I have so many questions that I am sure can't be answered until I see the doctor. I want to know if this gets better? I want to know so many damn things.

Mostly I just want to SCREAM and Cry and Run from this!!! I cannot believe I did this to me! I cannot believe it has come to this point before I even had my 50th birthday. I am just so angry!

Well.... not much of an introduction to me. Sorry for that!
I am totally new to this newest part of my life. I am not sure what to expect. I suppose I will find out at my next doctors appointment.

[Sylvia_Deitz]

Hi Kellie! I'm sure so sorry to hear about your emphysema! At least you've quit smoking and that's a good start to getting better. I know you've probably read my story on my page, so you know I have emphysema and COPD. Well, I feel that I'm at least keeping it from getting worse by doing my long walk every day and doing deep breathing. I also blow every last bit of air out several times a day like you did during the function test. Anyway, it's been 10 months since my diagnosis and since I quit smoking and I really feel a lot better and have more air than back then, so I'm inclined to say you can improve yourself. I know they say emphysema doesn't get better, but I'm imclined to disagree. I've never given in to using inhalers, either. Perhaps I'll have to at some point, but not yet.

[luvsroses_barb]

Hi Kellie, I'm really sorry to hear about your diagnosis. I know how you feel. I cried for at least a week after I was diagnosed. I did the blame game too. I asked my doctor if I would get better since I had quit smoking, and all she told me is that we lose lung function as it is as we age. So she was no help to me.

There are links here at this group that I suggest you go to for more information. And here are a few more in case they aren't listed here any where.

American Lung Association - http://www.lungusa.org/site/pp.asp?c=dvLUK9O0E&b=38502
COPD Guide - http://www.copdguide.com/?sc=SPRUBUWBDTV0707_016
EFFORTS - http://www.emphysema.net/bindex.html
Emphysema - Wikipedia Definition - http://en.wikipedia.org/wiki/Emphysema

While you can never get rid of Emphysema, nor can you go from Severe to moderate, you can increase your breathing ability by the foods you eat and the exercises you do. And also by staying smoke free and staying away from cigarettes in general, you are greatly decreasing the advancement of your disease. I know that my breathing has greatly improved just by being smoke free for over a year. But I also know, that environmental issues and things that I do such as the food I eat and exercise I do can either make me feel better or take me back to feeling like I did when I quit. I recently found that out be cleaning up a Clorox spill at work.

Please know that while being diagnosed with Emphysema is a very scary thing, that diagnosis does not have to mean a death sentence. And while we all have gone through the same blame game as you, blaming yourself is not going to take it away. So be kind to yourself. The best thing to do now is to arm yourself with the most information you can to make the rest of your life as good as it can possibly be. Ask questions here. Ask your pulmonologost questions. They are a Wonderful source of information. See if you can enroll in a Pulmonary Class at your local hospital. Most insurances cover it and they will teach you how to breath better, and build your lung capacity.

Not everyone has to use inhalers. I do as do a lot of the people here. And some people are on oxygen and nebulizers too. I don't have to use them as often as I used to because of what I have learned and because of staying away from the smokes. And some of the people who have been on oxygen have been able to get off of it by quitting smoking. My mother has severe emphysema and she quit smoking before me. She was on 24/7 O2 for a long time. A couple months ago, she weened hereself off of it and is doing fine with just using an inhaler.

You're going to be fine Kellie. Please let me know if there is anything else I can do to help. And let us know how things work out with your doctors appointment.

[kellie3]

Thank you so much Sylvia and Barb!
I started reading all I could here on EX and all over the internet about how food and nutrition can help lung function. I found a lot of information that was really helpful. Some information I can put to use now like eating vegetables and fruits, and some questions I want to talk to the pulmonologist about concerning different vitamins and suppliments.

I have always eating quite a bit of vegetables and fruit so continuing that won't be difficult. I have never really eaten what I would call healthy, and NEVER took vitamins. I did smoke and drink coffee like a fiend though! I was under the assumption that I was going to be healthy and live forever, and never turn gray, and never be over weight. You know... The Cinderella complex. LoL

Yesterday with my husbands blessing I went into the kitchen with a large black outdoor garbage bag and started in on our cupboards and refrigerator. I threw out a ton of stuff, and boxed up and hubby took quite a bit to womans shelter.

The idea is to eat as many fruits and veggies as we can daily (5 servings). Try and stay away from red meat (or keep it for treats or special occasions). We got rid of table salt and bought sea salt. From what I have read it's better for you (less sodium). Also, instead of using salt on most things I bought different kinds of Mrs Dash to use for seasonings.
I have a terrible sweet tooth and it wasn't uncommon for me to eat a snickers or cake or a peanut butter and jelly sandwich before I went to bed every night. I made some sorbet thingys last night and tried them today. I made lemon sorbet out of lemon juice a little bit of apple juice and some lemon curd, then froze them in small re-usable glad storage bowls. They were actually very good! I may add a little bit of fat free cool whip next time and see what that turns out like. Anyway... I think those will be good for my nighttime sweet snack.

The point is... I am through feeling sorry for myself. I actually kept in under 2 days! LoL
I am trying to be pro-active with this diagnosis and hold myself accountable now. I know I will have bad days. I know from what I read the older I get the more bad days I will probably have. I know I will be prone to pnuemonia and the flu, and respitory infections. I will have to be extra careful.
But I can do my part to build my immune system the best I can. Losing weight, excercising and eating a healthy diet is doing my part!

I probably am putting the horse in front of the carriage (or however the heck that saying goes) by starting all this before my follow up doctors appointment the 4th. I can't imagine he would tell me any of this is a bad thing.

I am going to the Social Security office tomorrow to talk to them about the programs available to help me. The doctor tells me work will be out of the question.... Which I have been retired for years anyway with a back problem.
I have applied for benefits before and was told my husband makes too much money with his retirement for us to qualify. And, the only way for me to get benifits is to divorce him. They actually came right out and told me that! UGGHH
It isn't like we are broke. We have a fairly nice paid off house in a decent neighborhood, paid off vehicles, etc. I am just afraid with this diagnoses and doctors appointments, and testing and treatments this could get very spendy.
We were looking forward to a comfortable retirement and I will not let this damage those dreams.
So... Wish me luck tomorrow. Let's hope there is some kind of program out there that is waiting for someone just like me to throw medical coverage too LoL_________________________________________________________________
I posted the above as a blog also. But I really wanted to let you Sylvia and you Barb know how much I appreciate your support. This will be the most important chapter in my life, and for the first time I need to step up and do the hard work. It's scarey!

[Sylvia_Deitz]

Well, Kellie...You're very welcome for the info! I'm glad I could be of some help to you. I'm not very experienced in treating mine other than the natural ways. I really am going to the store as soon as I get off here and buy some apples. That was a super article that Barb shared about the fruits and veges! Apples being the most important, it seems.

[carole2]

Hi Kellie,

Man I think we can all identify with not wanting to be here. But there is hope. It is not always the death sentence it use to be portrayed to be. But do be careful what you read up on the web. When I first found out I had emphysema I want to read everything I could and it scared the shit out of me. And I went into such a state of depression I can't begin to tell you.

BUT......... although you can't reverse the disease so to speak you can feel better and there is transplant as an option. And all the new meds they are coming up with prolong and improve quality of life too I think. At least it has for me. I use Advair and Spiriva both helped me immensley and made it so I could go another 2 years before going on oxygen. Depending on how bad you are. I am at 15% lung function now. I am still able to be up and walking around , going places etc. ( lol before I broke my hip). But if I could offer some advice first I would tell you to enroll in pulmonary rehab which will teach you the basics of what all you need to know. And here are 2 places to go to: http://daytodaywcopd.proboards.com/
and this is one if you think you might want to consider transplant http://www.2ndwind.org/ .

I'd say mostly stay away from sick people because every time you get sick from here on out it will tax your lungs. Eat well, exercise, and maintain friendships to keep you going through the rough days. There can be sunny skies ahead hon. Message me anytime!