Newly diagnosed with emphysema, please help! - Lung & Respiratory Disorders / COPD Message Board

DAnn73 · 05-21-2003, 07:26 AM

HI all. I apologize for the long post, but I'm just sooo frustrated and full of questions. First of all, my mother was diagnosed yesterday with mild emphysema. This "diagnosis" came from a chest x-ray alone. From what I've read, there are multiple tests needed to accurately diagnose emphysema, correct? I admit I haven't read as much as I need to on the subject, I guess that's why I'm here. Anyway, is a chest x-ray enough to determine that someone has emphysema? Secondly, I was so upset at the doctor's office, because the nurse called and told her the news. She stammered around, finally telling my mother the news. Meanwhile, while the nurse found the words, mom was thinking "cancer". You know how that goes, we always think the worst. I know doctors can't deal with each and every patient's phone call, etc. However, with a diagnosis THIS serious and needing this much attention, I would think he could take the time to explain it to my mother. Third, the nurse told her to "come in if you need any help to stop smoking". That was it. Done. Now, I've read enough on this subject to know that there are options, there are treatments, there is information that NEEDS to be presented to the patient. None of this was done, none of this was even offered. I'm so disgusted with her doctor I could just scream. I mean, shouldn't he have made SOME type of appointment, if nothing else, to explain the progression of the disease, to explain the treatments options, to explain what she should/shouldn't do??? Or am I just being hopelessly optimistic?? It just drives me insane that she was left with no answers. I've given her SOME, but I'm not a doctor, and I try to help her as much as I can, with as much information as I can...but again, I'm not a doctor. If anyone has any advice, any answers, any ANYTHING, I would very much appreciate it. I'm sorry for venting...but I really really needed to. Thanks

Deb47 · 05-21-2003, 12:57 PM

Hi there. I certainly sympathise with you. Your mother's doctor should have sat her down and talked to her; shame on him! I would have your mother make a follow up appointment; and go with her. Tell her doctor you both need to talk to him about this disease: so your mother can get the best early treatment possible. I need to stress: its most important that your mother quit smoking, and start a regular exercise program. This will greatly slow down the disease progression. I'd say stopping smoking is the number one thing your mother can do for herself. If she keeps smoking, the disease will get bad much faster. Do online research: there are different message boards online, for people with different lung diseases. I think these can really be helpful to your mother: for then people don't feel they're all alone. They can post questions, etc...about their treatment; medicince they're on, etc...and just vent. Tell your mother that many people with this disease can live for many, many years. Most people who get bad fast are the ones that keep smoking...good luck to your mother. God bless you and your mother. deb

wrin · 05-21-2003, 07:42 PM

To add to the previous poster, who, by the way, did a very good job...

Emphysema is not a death sentence, but a diagnosis proper can be made from a chest x-ray and clinical history, as far as I know. A chest CT scan is best, for definitiveness, and a pulmonary function test is best to assess for how progressed the disease is, however.

One thing she has to make sure she does is remember to eat right, and eat enough, even when she's sick and doesn't feel like eating. There might also be support groups such as the COLD club (stands for chronic obstructive lung disease) and exercise programs such as pulmonary rehab in your area, where your mum can exercise with other people who're in a similar boat, and can be assessed on a regular basis by a respiratory therapist who can watch her and help her get better.

What's most important for her right now is that she learns how to use her medications correctly, and like Deb said, QUIT SMOKING.

[This message has been edited by wrin (edited 05-21-2003).]

DAnn73 · 05-22-2003, 08:33 AM

Thank you both...I truly appreciate it. It's been a very scary and emotional few days and it helps to know that someone else out there understands. I appreciate all the good advice and most definately the support. Thank you again.

HRATL · 05-26-2003, 02:02 PM

Just checking on you...How are you feeling?
Please let us know!!! We care....