Advice for a Newly Diagnosed COPD Patient

Editor's note: Always consult with your medical team before starting a new diet or exercise routine.

Being diagnosed with COPD can seem scary and overwhelming, but it doesn't have to be. Learning this took me a while, but I think it would have taken much of that worry away if I had the right tools when I was first diagnosed.

Taking care of yourself and seeking support after diagnosis

First of all, talk to your family. Tell them your diagnosis and learn about everything together. Have them go to appointments with you if they can. This will help them understand more and write down any notes for you.

If you are anything like me, you get home and want to tell your family what the doctor said, and you forget almost everything they told you. Having your family understand everything that is going on with you can be very valuable to you both.

I would be sure to find a great pulmonologist that will listen to you and be part of your team. If your doctor isn’t doing what you want or working with you to get through this journey, I would first talk with them to ensure you are on the same page. If they aren't willing to do that, then maybe, they aren’t the right doctor for you.

Some test I would suggest that you ask your doctor about is a six-minute walk test. This will show if you need oxygen with any activity.

Some doctors don’t think about doing it because when they see you, you have rested for a bit, and they don’t see your breathlessness or need while sitting there. I wish my first doctor would have done this. I probably needed oxygen at least a year before I even got it. Getting a pulsometer is also a good idea to keep track of your oxygen levels at home.

It is suggested that we go to our lung doctors at least once a year and more often if we are sicker or further in our illness. Getting a chest X-ray, CT scan, and PFT (breathing test) is good for getting a good starting point and reference for further ones down the road.

I would also suggest an overnight sleep study to determine if you have sleep apnea or need oxygen at night. For most of us, this is when we first start wearing oxygen. Who knew that our oxygen levels would dip at night? Not me until I learned more.

Remember to keep a record of all of your appointments and tests. I always ask for a copy that same day. Of course, most places have some sort of online chat system, so you may not have to ask for anything, but for those who don’t have this available, be sure to ask and keep your records of everything. Finding a good binder to keep everything in and in order is also helpful.

Find support from either online or in-person support groups and forums like our community here or the Alpha-1 Foundation (if you have Alpha-1). It’s so important to our mental health getting to talk to others who are going through the same things that we are.

I would also suggest you check out many groups' education days and conferences. They provide lots of great information and all of the latest in the research studies that are going on.

It’s also nice to meet your friends from the online support groups in person at these events. It is like going to a big family reunion each year.

If you have Alpha-1, I would suggest going to a liver doctor once a year and getting blood work, a sonogram of the liver, and a possible fibro scan depending on how your sonogram goes.

Lastly, I suggest eating more healthily and getting exercise every day. I used to laugh when I was first diagnosed and would hear someone else or my doctor mention this. Exercise?!?! Really? I can’t even hardly walk 15 feet without gasping. How am I supposed to exercise? Yes, we need to.

Building your stamnia

Start off small and work your way up a minute a day. Little by little, you will build up that stamina. Pulmonary rehab is a great place to do that; most insurance covers it. If not, or if you have difficulty getting out of the house, they have many great online programs. Just Google it, and you will find many free programs to do online.

What would you suggest to anyone diagnosed with COPD? Please share with us in the comments below.