Setting the record straight!

Over the past six weeks I have been harassed and subjected to insulting and defamatory comments via email and social media.  Originally I thought it beneficial to name the person / people / organisation doing this, but what I have realised is that provides them with more “air”, and would mean I am stooping to their level, which goes against what I promote and would make me a hypocrite.

I was invited along with two other respiratory patients,  to France to ride in what I thought was an awareness ride for respiratory disease patients. We cycled under the banner of the COPD World Team.

On my return to Australia I was emailed demanding my lung function tests. It had been decided I was probably a stage 2-3 COPD patient or just had asthma. I was informed the “COPD World Team” wanted answers along with thousands of others about how I performed so well in the event.  I think it reasonable to expect that prior to being invited to such an event, one would have completed their “due diligence” and would be completely converse with who I am, what I say I am, and what my disease is, not after the event is completed and I have returned to Australia.  Again, I confirm I was invited to attend this event. At no stage did I ask to go – they contacted me and asked me to attend a fully funded event.

These cyber trolls fail to understand the level of fitness needed to complete 3 Ironman events and 2 marathons is far more than what’s need to ride 46 kilometres. An Ironman cycle leg alone is 180 kilometres.  I initially refused to provide this information, as medical records are very private information and I suspected it wouldn’t be used in a meaningful way. After persistent harassment and threats, I agreed to provide a doctor with my medical details and a report from my respiratory specialist with his diagnosis, but told the doctor the details should not be shared with anyone else, as I have a firm belief a person’s medical data, is exactly that, personal and none of anyone else’s business.

I awoke last Saturday morning to a post on the relevant FB page stating “Breaking News”. These bullies was telling the world I hadn’t provided them with adequate details about my disease status and it was still in question. As well as this, I was being black banned by his organisation. I’d already told them several weeks earlier that I had no desire to be a part of his team or organisation, as they didn’t hold the same agenda or standards I do. It was also stated that if I didn’t provide more detail he will be sending out a press release in 7 days, Friday November 18.

The information which had been provided to their doctor is the same as I have provided all medical professionals when entering a race, as they require this information to verify my condition and whether, in their opinion, I can safely compete. Doctors have always been able to determine my health status with this information up until now, and have admired what I can do with my level of disease. Apparently, this specific medical person does not hold the same skill level to enable them to determine my diagnosis with the same information.

COPD should never be a competition about who is the sickest. Our disease is individual and varies from patient to patient. I know COPD patients whose exercise performance is far greater than mine, just as mine is greater than others. You can never compare performances of patients with respiratory disease as we are all different. What we should be doing is encouraging other patients to take charge of their disease, eat well, exercise well and live a better quality of life!

Below is the latest up to date definition and grouping/staging of COPD from The Global Initiative for Chronic Obstructive Lung Disease (GOLD). It contains the old staging system and the new group system. The pages following are my pulmonary function and exercise testing from last year. My FEV1 over the last 5 years has varied between 22% and 30% but generally 1lt or under. These tests were carried out 5 weeks prior to my run in the 2015 New York marathon and show improved exercise test results after a 26-week training program.

The purpose of this post is to “set the record straight”.  It is not to vilify another COPD patient, but to confirm the facts and not promote the lies any further.  I have been accused of being a liar and a fraud and in the latest post “a monster”.  Perhaps it’s time to realise I am not the only person being impacted by this nonsense.  My wife, my children, step children, siblings and elderly parents along with extended family and other COPD patients have been reading all of the horrific things being purported about be.

This will be the last time I am in communication with or about this issue.  The black ban from this organisation can continue all  it likes and I will not be entertaining it any longer.  It is a negative and pointless waste of my time.  It only serves to hurt my family and my friends in the COPD World, whom I have far too much respect and affection for.  No negative or derogatory comments will be acceptable on this post, and if made will be deleted immediately upon being seen.

I am supported by my team of medical professionals and corporate sponsors in Australia and New Zealand; people and organisations, as detailed on my page, who recognise my authenticity and the integrity of what I am doing to help people with Lung disease : use positivity, exercise and nutrition to improve their lives.   NEVER LET YOUR DISEASE DEFINE YOU!!

 

Chronic obstructive pulmonary disease: Definition, clinical manifestations, diagnosis, and staging

Authors
MeiLan King Han, MD, MS
Mark T Dransfield, MD
Fernando J Martinez, MD, MS

Section Editor
James K Stoller, MD, MS

Deputy Editor
Helen Hollingsworth, MD

Contributor disclosures

All topics are updated as new evidence becomes available and our peer review process is complete.

Literature review current through: Oct 2016. | This topic last updated: Apr 08, 2016.

COPD — The Global Initiative for Chronic Obstructive Lung Disease (GOLD), a project initiated by the National Heart, Lung, and Blood Institute (NHLBI) and the World Health Organization (WHO), defines COPD as follows [7]:

“Chronic obstructive pulmonary disease (COPD), a common preventable and treatable disease, is characterized by persistent airflow limitation that is usually progressive and associated with an enhanced chronic inflammatory response in the airways and the lung to noxious particles or gases. Exacerbations and comorbidities contribute to the overall severity in individual patients.”

GOLD system — The GOLD therapeutic strategy suggests using a combination of an individual’s symptoms, history of exacerbations, hospitalizations due to exacerbations and FEV1 to assess the exacerbation risk and guide therapy [7]. Symptom severity is assessed using the CAT or mMRC. Lung function in addition to the number of exacerbations and hospitalizations for exacerbations in the previous 12 months can be used to predict future risk. The severity of lung function impairment is stratified based on the postbronchodilator FEV1, using the GOLD classification (table 3). A history of zero or one exacerbation in the past 12 months and GOLD 1 or 2 spirometric level suggests a low future risk of exacerbations, while two or more exacerbations or a hospitalized exacerbation or GOLD 3 or 4 spirometric level suggest a high future risk [7]. These three components are combined into four groups as follows:

  • Group A: Low risk, less symptoms: Typically GOLD 1 or GOLD 2 (mild or moderate airflow limitation) and 0 to 1 exacerbation per year and no hospitalization for exacerbation; and CAT score <10 or mMRC grade 0 to 1.
  • Group B: Low risk, more symptoms: Typically GOLD 1 or GOLD 2 (mild or moderate airflow limitation) and 0 to 1 exacerbation per year and no hospitalization for exacerbation; and CAT score ≥10 or mMRC grade ≥2
  • Group C: High risk, less symptoms: Typically GOLD 3 or GOLD 4 (severe or very severe airflow limitation) and/or ≥2 exacerbations per year or ≥1 hospitalization for exacerbation; and CAT score <10 or mMRC grade 0 to 1.
  • Group D: High risk, more symptoms: Typically GOLD 3 or GOLD 4 (severe or very severe airflow limitation)and/or ≥2 exacerbations per year or ≥1 hospitalization for exacerbation; and CAT score ≥10 or mMRC grade ≥2

 

The GOLD expert panel classified COPD into 4 or 5 stages, ranging from 0 to 4:

 Stage  Characteristics
0: At risk Normal Spirometry
Chronic Symptoms (cough, sputum production)
GOLD 0 was introduced in the GOLD 2001 publication, but was no longer used in GOLD 2010
1: Mild COPD FEV1/FVC < 70%
FEV1 > or equal to 80% predicted
With or without chronic symptoms (cough, sputum production)
2: Moderate COPD FEV1/FVC < 70%
FEV1 between 50 and 80% predicted
With or without chronic symptoms (cough, sputum production)
3: Severe COPD FEV1/FVC < 70%
FEV1 between 30 and 50% predicted
With or without chronic symptoms (cough, sputum production)
4: Very Severe COPD FEV1/FVC < 70%
FEV1 < or equal to 30% predicted or FEV1 < 50% predicted plus chronic respiratory failure

In bold type is the corresponding group/stage which is circled on my respiratory function test.

exercies-test

 

respiratory-test

13 responses to “Setting the record straight!

  1. As I said previously, don´t let them get you down. Fk ém!! The rest of us, majority, appreciate your story, experiences and positive support and cheer. Thanks Russ!!
    You ever come to Brazil, lemme know.

  2. Sorry to hear about this Russell,

    Your pulmonary function tests clearly indicate the severity of the airflow obstruction. Have the individuals questioning the validity of your diagnosis considered the diffusing capacity of your lungs? Your DLCO is 93% post-bronchodilator, this is excellent and would more than likely to translate to much improved exercise performance compared to your COPD peers. I have just had a quite look at an research database of mine with over 400 COPD patients and of the Stage 3 patients the mean DLCO % predicted was 55%, yours is 93% and would rank you in the top 3% of this particular cohort of stage 3. You are likely to have a better diffusing capacity of your lungs than many individuals with less severe COPD.

    https://www.ncbi.nlm.nih.gov/pubmed/27598467

    Kind regards

    Dr Peter Collins PhD APD

    1. Couldn’t agree more Peter. I used to desaturate into the 80’s when stress tested now I am able to stay above 92. Patients can lead a better quality of life if they have the correct lifestyle in place. It’s not about running marathons, it’s about being active and good nutrition.

  3. Russ, first of all can I say that is such a pity you were put in a position where you had to explain yourself like this. Good on you for the approach you have taken, but its a shame the modern ‘anti-social media’ seems so fascinated with scandals and bringing people down. You are an inspiration to many, I have pushed on in my own way with you in mind, its all possible if you strive for it.

    As an athlete also with COPD but less severe than you I have faced my own cynics as I said before, when peers see you doing things they cant they question what you are saying. What they don’t see is the huge effort that goes into keeping youself in a position to do what you do.

    anyway, keep on keeping on.

    and PS I found Dr Collins update fascinating regarding DLCO

  4. Hi Russ, sorry if I have double posted WP went crazy.
    Just to say that i’m sorry people have put you in a position where you feel this update is necessary. I’m not sure what it is about ‘anti’social media these days or tabloids that seem to have people thirsting for scandal and toppling people that do cool things. its very wrong.

    As an athlete with COPD I have faced similar comments. When you equal peers or beat them they cant accept that what you have said is true, thus question diagnosis. Its very frustrating, however all you can do is keep away from those circles. I appreciate your situation is more widespread as you have good coverage etc. But anyway, you are an inspiration, I’ve certainly pushed on one or two times thinking of you / your efforts, so ignore the doubters, and keep driving forward.

    Ps – Also found Dr Collins information on DLCO fascinating! would love to understand more about that!

  5. Hi Russ. As I posted before, lots of people are merely existing while other people like us are LIVING. Talk is cheap. Some may “say” they are “living to the best of their ability” yet sit on the couch all day complaining. Don’t fall for it! It’s nothing more than an invitation to a pity party and they are SO not fun to go to! My FEV1 is <20 and I had COPD "friends" tell me that there is no way I am "that sick" all because I can fish all day (20 ft from the house!) and wear high heels to dinner. Why? Because "nobody they know can have a lung function like me and wear heels". I was also told that I'm not sick enough to be on the lung transplant list by a COPD patient. I found this most humorous because they don't put anyone on the list unless they are actually sick enough for transplant. Also, I didn't realize that this ONE person had more qualifications than my entire team of doctors at my transplant center in order to be able to diagnose me as "not being sick enough" based on me wearing a pair of heeled boots. I'm sorry you had to go through this harrassment and I'm just sharing this to let you know that you are not alone! #Beast24/7. Lysa

  6. Russ:

    I am sorry you’re going through this drama. You’re right on target that none of us test out with the same challenges or weaknesses, and we are not in competition with each other over who is the sickest.

    I’m sorry you’re going through this hassle, and hope it ends soon. Can you threaten a defamation of character lawsuit against this idiot to get them to stop harassing you?

    If nothing else, block them on facebook so that you don’t have to listen to their drama.

    You take care of you, and keep doing what you feel is best for your life.

  7. Hello my name is Terry and I am so happy to have found your website. You are such an encouraging force and I look forward to following your athletic journey. I am returning to long distance running and Im doing it with my supplemental oxygen and Contstrictive Bronchiolitis (secondary to Crohn’s Disease). I do plan on doing a marathon and if by chance I ever am disrespected as you have been, I hope to handle it with even half the dignity you have shown. Thanks again for sharing your experiences- we can all learn from them!

Leave a Reply

Your email address will not be published. Required fields are marked *