Welcome, gaga1, and thanks for introducing yourself.

If you'd care to share some of the questions bothering you, someone here may know the answer or have a suggestion. For example, I find my mucus thins considerably when I faithfully keep myself well hydrated. This gives me less frequent and more productive coughs.

Hugs,
TJ

I am new as well, although I have read this forum for a couple of years without posting. I know how lost you are feeling because I felt that way too for awhile. But I learned that the more anxious I became the worse my SOB was. So I try very hard to keep myself calm. Pursed lip breathing is a huge help to me, I do it often. My COPD took a huge turn for the worse when I had double phnemonia about a year ago. I had to be ventilated it was so bad. But I was successful in overcoming it and was only in the hospital for 4 days, nurses couldn't believe I rebounded so quickly. Truth is I wanted out of the hospital. My pulm doctor told me then I had severe emphasema and he wanted me on continuous oxygen. I did that for about a month and started to build my lungs back up. And now I can go all day without it as long as I don't go crazy with activity. I can go shopping and walk through a huge store 2X before I give out. Don't be scared. Just realize that you now have limitations and learn how to deal them as best you can.

There are so many people on this forum that can give you better advice but I am just trying to help you not be so afraid. You have to relax. that is coming from my experience.

I think you will find you have to be proactive with your COPD. I've never found that doctors have the time to just sit and talk about my
condition. I make good use of my appointments by doing my research in advance and having a list of specific questions ready. If you need meds for anxiety or depression ask your GP for that or go to a psychologist to get them. Doctors usually only respond to your requests or symptoms and you have to be very assertive.

Check if there is a pulmonary rehab in your area, and whether the Pulmonologist will recommend it. Also need to check with your insurance company. (They are usually very good for paying for one 30 session program, if not entirely at least at a reasonable copay simply because statistics have shown those who go through rehab are far less likely to relapse and are generally less expensive for insurance companies.)

Even if your insurance wont pay a rehab program is worth every dollar especially for newcomers. Along with normal low impact exercise and strength training they will have people there to explain all the various inhalers, how to use them, and all the other zillion little things worth learning that the pulmonologist hasnt time for. Until then then ask away.

First order of business is to learn how to avoid exacerbations. While COPD is progressive and atm there is nothing available to reverse it, it can be dramatically slowed down but exacerbations accelerate the process.

Just to give you hope. I was originally misdiagnosis told I had only chronic bronchitis, give a rescue inhaler and set home. It took a heart attack for a correct diagnosis. I took the news reasonably well but knew I was dead, life was over, and became essentially depressed waiting for the end that would surely come in a couple of months. That was in 2004. Here I am still kicking 15 years later. Ive been given the long-face and it has been suggested I have about 2 or 3 years left BUT they have been telling me that every year for the last 3 years. lol

[Dang I wish there was an edit function. Smile.]
Just in case someone notices the math is quite correct - the 15 years mentioned is starting from ~2000 when I was misdiagnosis.]

Welcome gaga1. I agree with a previous comment i.e. let us know some of your questions and perhaps someone here can help with answers. It must be frustrating to have such a delay with your pulmonologist's appointments - anxiety increases - not good!

You mentioned there are only a few pulmonary docs in your area. Have you researched them all to learn of availability, any reviews?, tried them out? Are you comfortable with your current pulmonologist? 6 months is a long time if you have burning questions because you've noticed concerning changes since your last visit. Excerbations are a bummer as they don't just come and go; there tends to be some lasting effects.

Hope we can help...

All: each one of you has offered valuable advice. CaitsMom - I do need to work on more water. Just took one out of the fridge. tiatrenee: I feel less alone already.
Charley61-I'm going to be more assertive. It's my disease! Gnott: I'm glad you're with us. Keep proving them wrong! There is no respiratory rehab in my area. They closed it because it wasn't producing "income". I would have to travel 4 hrs for it, but it might be worth it for a while.
My biggest concern is to learn how to avoid/lessen exacerbations. If anyone has suggestions for me or sources, please let me know. and Joany: there is only 3 docs and they are in the same practice. They try to get you to see the PA many times and that has it's place, but not always. I have only ever seen my doctor. It's crazy. I'm really not comfortable with mine, but don't know how to change this. I wonder if I call and insist on seeing him....

welcome to the board gaga1. I agree with all the previous input.

Tiatrenee; i'm glad you are posting more often. it's great to have new input and ideas.

I live a few hour drive from "specialists" so I try to go see my Pulm once a year. Then I have a wonderful primary care physician (nurse practitioner) that I see monthly that handles all my meds & regular care. Because I have seen a couple of different specialists for other problems, I like having my PCP "gather the info" and do my main care...so one doctor know "all" about me. This way there is no accidental medication mix ups and also I have someone I can usually get in to see rather quickly, locally cheaper than the specialist.

Every time I get sick it seems to take me down another notch. However, there has been times that I've needed a couple of rounds of antibiotics to get over things (then of course a follow up with the yeast medication-sigh).
So I'm just curious if you have been re-checked by your Dr. to make sure you are actually over your infection or if you might need further treatment?

my 2 cents worth :)

Well Hello and Welcome gaga1. Interesting and exciting name that you have chosen for this group. This is the place to ask questions, learn more about your condition, vent and sometimes even have a good laugh (we do have some jokesters amongst us).

Everyone's questions and comments help keep this group active.

Once again, WELCOME !! Hope to see you posting..

Jarca: interesting question. All I do is finish the prescribed dose of meds and the office says to call if I don't feel better. Well, I feel some better so I don't call. hmmmm I do have a message in at the office since if the doc has time he'll call, and I was going to tell him my exact symptoms at this moment and see what he says. He is on vacation till July 10th, so I'll have to wait till then. ????
Whatsauname: Two of my youngest grandchildren and my 8 greatgrandchildren call me Gaga, and this was many years before "Lady Gaga"!

gaga; this is my personal opinion only, but i would not wait over a week to be seen, I would go to a different dr if I had to.
With my lungs a couple of days can make the difference between getting better or hospitalization.
(I hate to say "life or death" but with my lungs it can be that easily)

my 1st year that I was dx'd i seemed to just go from one illness to the next. My dr did a 90 day sulfa treatment that Finally got it under control. she said it was "old fashioned" but it worked for me.
these are my experiences & opinions only. I am not a medical professional.

I have not had exacerbation so so probably should stay out of this but I do think the more any of us research symptoms and Meds the less anxious we feel and more sure of ourselves therefor less dependent on doctors. They are having a hard time these days I believe and can disappoint us so best have our ducks in a row as well as possible.
That's why I love this forum. As my g.p. say, I have a lot more time to study this stuff than he does........oh, maybe that's why you go to a specialist! : )

Welcome Gaga,

I posted to you earlier but it didn't appear on the board so I will just welcome you to this wonderful group and see if it gets posted.

Hugs, Cindy

Gaga1, welcome to this group. I am BJ, and have been here about 3-4 years or so.( I forget ) Wonderful group here, very helpful, friendly, chatty, and maybe some of our advise may be different, but that is ok too, because we are all different, and this disease treats us different.
Right now my copd is stable, which means I have slowed the progression, but one germ could do me in, I know that.
So basically I have to pick my battles, avoid crowds, sick people, (even grandkids if contagious) keep antibacterial wipes (and gel) handy and wipe shopping art handles, public bathroom door knobs, toilet seat, anything someone may have touched,
because if they had the flu and you touch it and then scratch your nose or rub your eye, you have it !
At doctor offices, wipe door knobs and chair arms. In your home, as you clean, wipe microwave doors fride door handles, telephone, and of course toilet flusher.
These are especially important if you have people there with you. I am not saying going around all day doing this, just do it before YOU touch it.
Stay away from smokers, do not allow in house or car. Stay away from harsh cleaners, and dirt, dust and mold needs to be cleaned up. Do real frequent hand washing, then use the gel.
I will quit now, but I hope you understand, the most important thing behind not smoking, is staying germ free.
You may have to wear a mask if family comes over and baby has a cold, or you go shopping and it is real crowded...
.Stick with us, we will walk you thru this. I hope you start getting to see a doctor more regular than you are now. If you have trouble breathing or lung pain, or real bad conjested and can not get in to your doctor, go to the ER.....PS, I am also 69 and have a little 4 year old grandson. He is my heartbeat !!!

BJ

Welcome. Wonderful people here who are happy to give advice and support whenever you need.

Hugs...