Ten years ago, on the 22nd of August 2011 I received my COPD diagnosis. For me it’s not about celebrating having COPD for ten years, it’s about how far I have come in those ten years.
Like many COPD patients I had no idea about this disease when I was first diagnosed. When I found out I had a disease which was progressive and had no cure, I was scared about what the future held for me. How long will I live, how will my family cope, will I see my kids grow up, would I become a grandparent?
These are the questions I guess many patients have when first diagnosed. Those questions are not easily answered and vary greatly between patients. My diagnosis was stage 4 COPD, which did not give me a great prognosis. I was in a new relationship with my now wife Leanne and felt like I had unfairly lumbered her with my burden. Fortunately for me, Leanne is a strong woman who has stuck by my side for this journey. Without her my quality of life would never have reached the level it has.
If there was one mistake, I made on the day I was diagnosed, it was to ask Dr Google what my life would look like with stage 4 COPD. Knowing what I know now, my advice to any newly diagnosed COPD patients would be to stick with reliable resources. Most countries have lung disease organisations which have good reliable information about how to manage your disease and what programs are available to you.
COPD FOUNDATION – U.S.A
Changing my prognosis
When I was diagnosed, I was given my medications, told to have a yearly flu shot and keep away from sick people. Given my low lung function my doctor sent me to be accessed for a lung transplant. At this point Leanne and I decided we didn’t want COPD to dictate how our story unfolded. COPD, in our mind, was an inconvenience, we had plans and COPD wasn’t part of those plans.
I have written many articles about my strategies to managing my COPD which you’ll find on my website www.copdathlete.com . Rather than going into this in detail I can say changing my mindset, setting goals and sicking to my plan, has been important in achieving what I have achieved. Consistency is very important when managing COPD. Every strategy you use should become part of your lifestyle and not something you do every now and then.
I was diagnosed with stage 4 COPD, the usual prognosis from this point is a worsening of disease, quality of life and placement on a lung transplant list. My prognosis has been very different, I’m now a stage 3 patient with improved lung function, I’m not on a transplant list and enjoy running marathons.
Those of you who have followed my journey will know nutrition, the ketogenic diet in particular, has been a big part of my strategy over the last 5 years. In July 2021 my case study was published into the scientific literature. My case study clearly shows how the ketogenic diet has improved my COPD. You can find this study HERE .
The next 10 years
While I have significantly improved my COPD, I will always look for ways to gain more improvements. There has been limited advances in COPD medications for decades and waiting for a magic cure, in my view, is fruitless. As patients we need to take every step, we can to improve our disease and improve our quality of life.
An article I wrote 5 years ago for the European Medical Journal, is the way I manage my disease and has proven successful. There is no cure for COPD, but you can still live well with this disease if you choose to do so. COPD is no longer a death sentence.
5 responses to “10 Years of Progress”
I’m very interested led in knowing how u mange Ed this disease
This is an overview of the principals I use to manage my disease. https://www.europeanmedical-group.com/omnipresent/the-four-pillars-of-living-well-with-chronic-obstructive-pulmonary-disease/
More detailed information is contained on my website.
thanks russell for the inspiration
I was diagnosed with stage 3 COPD and I am scared to death! I have lived my life in what I thought was a healthy manner and then suddenly 3 appointments ago, a doctor (I was in the emergency room and could not breathe) came up to me and told me I am dying. This shook me up so bad that I can’t think about anything else. and she makes it very clear to me that she doesn’t want to take care of me. So I could hire a nurse I guess.
The question is do I want a lung transplant. It says in the literature that people only live 3 years after a transplant. They have to have someone take care of them too. I don’t think I want to go through all of that.
Hi Nancy, I’m not a doctor but stage 3 sounds a little early to be talking about a lung transplant. I was told I may need a lung transplant 10 yrs ago and still have my old ones. Plenty of people do have successful lung transplant and go on for many years. At stage 3 I would focus on positive lifestyle changes to get the most out of the lungs you have.