Doctors scare me

[kellie3]

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Delete Post Manage Blog Back from the Pulmonologist and not sure I know any more than I did yesterday.

He prescribed Spiriva, Albuterol and Advair. And, told me to throw out the combivent. No nebulizor or oxygen and I am at least thankful for that. I guess anyway. At this point I really don't know what to be encouraged by and what to worry about.
He told Britt (she went with me to ask questions, got lectured for smoking and probably didn't hear much after that) that there is little to be done at this point. Excercise is good, swimming and walking will build stamina and give me strength to help fight off colds, flu and infections. He said those will be my biggest challenge and scare.
He said that a healthy person will go along and be fine, get a respitory infection (cold or flu) and rebound back to normal. But, I would go along doing good, get a respitory infection and after fighting to get over it, never get back to the function I was at prior to it.
Britt mentioned something about 20 or 30 years down the road and he said I wouldn't have to worry about that. ???WHAT??? Has it really come to that?? Honestly there is not longevity in either side of my family anyway. So he probably wasn't far off. But OUCH!!! That reality stung a little!
He said I would be a good candidate for the lung reduction surgery at some point because of the severity of the disease and my age. Also for a lung transplant. OH MY GOD
Do they practice how to scare the crap out of people. Britt said she didn't like my doctor, she didn't think he had a very good bedside manner (even though I was sitting up) and didn't think he explained things very well. I am not sure any of them do anymore.
Besides that, he came recommended and I was glad he took me on as a patient being I don't have medical insurance.

He mentioned excercises but said there was no groups or classes in this town, and that I could get online to find some. I will look and ask around.
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[luvsroses_barb]

Kellie, I'm so sorry you didn't get the answers you were looking for. I didn't get very good answers from my doctor either It was an online smoking group that I learned about Pulmonary Rehab, and I asked my doctor to enroll me in a class and she thought it was a good idea. But even though you don't have insurance, you can still call around and find out if any of your local hospitals offer them. They may offer them at a very low price to those who don't have insurance coverage. Our hospitals here in PA, will let you go for $20 a month after the insurance portion is finished. And if you don't have classes, the biggest thing they teach you is how to breathe, which I've given you two links below (Pursed Lip Breathing and Diaphragmatic Breathing) to help you learn better ways to breathe that will strengthen your lungs now and help you when you have an "episode" where you might be having a bit harder time breathing. I used the Pursed Lip breathing quite often. The other thing they do in Pulmonary Rehab, is put you on exercise equipment, but they monitor your blood pressure and heart rate to make sure you are exercising at a rate that is healthy for you. You might be able to find a gym near you that offers those same benefits, or I was told that Curves offers something similar.

As far as your doctor not having good bedside manners, and not giving good info. I think that a lot of doctors just don't know what to tell patients. They don't know what they might or might not already know, and they don't realize just how scary a diagnosis of emphysema can be to somebody. They must think that at least it isn't cancer, so why should we be worried. I tried getting info from my doctor, but she was no help. She's not a pulmonologist, so maybe she just doesn't have answers, I don't know. So I had to get my answers from asking people on the internet questions, and going to different websites and reading what I could. Yeah, a lot of it scared me, but the more I read, the more I learned, and the less scared I became. It also helped learning how to breathe better. And all the while, I stayed quit, and realized that the longer I stayed quit, little by little, the breathing was getting a teeny bit better too. I know that I will never get rid of this nasty disease, but I don't let it scare me anymore. I'm not going to let it ruin my life any more than it has, and when the time comes that I have to deal with worse issues because of this, than I will deal with them as they come. But for now, I will eat as healthy as I can, get as much exercise as I feel I'm capable of, and stay away from the smokes. Here are some links that might be of help to you. The first one is free clubs that may or may not be in your area. You have to look your state up. My area unfortunately didn't have any club nearby.

Please feel free to post any time you need an ear, or a hand. Or email me if you want too. I'll do what I can to help.

Better Breathers Clubs - http://www.lungusa.org/site/pp.asp?c=dvLUK9O0E&b=23051

Lung Volume Reductions Surgery - http://www.lungusa.org/site/c.dvLUK9O0E/b.992745/k.1255/Lung_Volume...

COPD Learn More, Breathe Better - http://www.nhlbi.nih.gov/health/public/lung/copd/

Around the Clock with COPD - http://www.lungusa.org/site/apps/nlnet/content3.aspx?c=dvLUK9O0E&am...;{3506ED17-B37B-4E9F-A6EF-9689485D62E0}&notoc=1

Pursed Lip Breathing - http://www.cchs.net/health/health-info/docs/2400/2408.asp?index=9443

Diaphragmatic Breathing - http://en.wikipedia.org/wiki/Diaphragmatic_breathing

[luvsroses_barb]

Oh, one note about the pursed lip breathing that one of the leaders in my Pulmonary Rehab told me. You don't really need to count on your intake and outake, just make sure that when you blow out, you blow out a little forcefully. The reason being is that the problem that people with emphysema have is not getting enough air, it's that we can't get rid of the air we do breathe. So when we do breathe, we are continually breathing the stale air we can't get rid of. That's the reason this exercise is good for us. It helps us to get good clean oxygen into our lungs, while getting rid of the old stale stuff.

[kellie3]

Thank you so very much Barb. I will use those links to the websites and see what I can do online. I have called all over town to see about rehab classes and there is nothing.

I think I am through getting terrified. Of course I thought that the last Dr.'s appt. LoL.

We have so many forest fires burning around us right now that I can't even open my doors to get fresh air in the house. So, because of that I haven't walked for 4 days. I can tell the difference. Also, we are at 4200 feet elevation and I am beginning to wonder if that effects my breathing? I wonder if it would be easier at sea level?

Anway... Thanks again so much for all your help. I'll let you know what I find out online.
Oh yeah... I am taking one of those tests tonight to check my oxygen levels while I sleep. It's just that clothes pin thingy on my finger. But I hope to god it registers really high levels because I really don't want on oxygen while I sleep. I'll let you know.
Bless your heart for your help. I really appreciate it. Hugs

[cindywilson]

thanks Barb, that is great info, the doctor they recommended to me and the treatment are about 50 miles from my home, so getting there is a problem. My kids all live in other states and my guy can't take time off, because they are looking for reasons to let people go, especially ones who are older or who have had heart attacks. Kellie it is scary, I remembr I was researching online and this one website started talking about a 5 year life expectancy, I was freaking, but not as bad as when I had a bad episode and the doctor at the ER told me I wouldn't make it one year. Doctors can be very clinical and seem to forget they are talking to human beings, also they seem to feel like we deserve this for smoking or at least that has been my experience. What I have learned is usually from online and all the things they tell you scare you. This is a disease and we have to learn to live with it, but I refuse to feel my life is over and don't want you to think that either. We are fighters, so we take care of ourselves better, eat better, I bought a second hand treadmill to help me walk where I can control it and it has pulse and oxygen levels and all the bells and whistles. Take it one day at a time and try to enjoy everyday, that is what I am trying to do...I will let you know what mine has to say on the 21st. My regular doctor has filled me with tons of meds, but we will see what this new one says...hang in there my friend