When the diagnosis comes... part one

With the diagnosis I've been given for my "Mounier-Kuhn Syndrome", I've become very aware that I may be absolutely living on borrowed time until the judge and jury sounds the gavel on the desktop (lung transplant or death). but for pure optimal mental health, it remains of utmost importance to press on with the most positive attitude I can muster, even on the most difficult days.

When I was first diagnosed, my wife and I both felt helpless given that the doctors did not even recognize what it was I was presenting to them, let alone the fact that there was nothing at all available on the world wide web for me to perform any sort of timeless personal research, in the hope of preparing myself for the future.

Exposing awareness to MKS for me, has become ultimately of huge importance, if only to offer another MKS patient camaraderie and support. 

The question becomes, not what I can do for myself having already lived for this long with my diagnosis, but how can we in turn can help another struggling with this difficult still mostly unknown diagnosis? 

Awareness. 

We believe that is the key for living with this rare diagnosis.

Yes! We've been working away, planning on bringing plenty of awareness to MKS.

To make others aware of the disease, to assist those who are diagnosed with it, and to support anyone in the medical field who might be searching high and low for answers to their medical questions. If we can help them in any possible way, we are willing to step up to the plate, as are others we've met throughout the world currently also living with MKS.

Awareness is most definitely key to coping, to understanding, to moving on, to taking even the smallest step along the long medical journey ahead!

Though I am NOT a professional in the perfect sense of the word by way of respiralogy or medical personnel, by having already lived with and through this disease, it has allowed me to become an true expert on my own health journey at the very least. I have lived through double the years all the doctors thought I would, surprising a whole host of specialists by being alive still today.

My own diagnosis was very difficult to come by, a medical puzzle for an entire team of doctors, internists, respiralogists, nephirologists, and even a world renowned pathologist. I was prepared for and bracing myself for a diagnosis similar to the intensity of a confirmed lung cancer, so not sure what was ailing me, I would have been satisfied with that, knowing what we were at least dealing with. A few specialists wondered about COPD, but none were ready for the breakthrough ahead for realizing such a rare diagnosis, penned on my hospital patient chart.

Fast forward a decade, and sadly "Mounier-Kuhn Syndrome" continues to be a very rare and often unacknowledged lung disease even in the best "respiratory lung" circles.

For instance, my wife made contact with the Canadian Lung Foundation to make an inquiry as to whether or not they could include MKS in their data base system on their website, creating a link to something offering more information on it. As usual to most of our inquiries of the past decade, this is the reply we got in return;

Hello,

 

Thank you very much for your comments to the Canadian Lung Association on Tracheobronchomegaly.

 

I am sorry to hear your husband has this disease, and I commend you for your efforts in explaining it and providing support to others.

 

I can understand your disappointment at not being able to find information on tracheobronchomegaly on the national Lung Association website, www.lung.ca.  The truth is, it takes a lot of resources to research, write, translate, verify and continuously update health information. The sheer number of lung diseases is staggering- there are major long-term lung diseases like asthma and COPD (emphysema and chronic bronchitis), infectious lung diseases, work-related lung diseases, lung cancers… it’s a huge range.

 

Sadly we do not have the staff and resources to provide information on every lung disease. This is regretful; I really wish we could do more. The reality is that will small staffs and budgets we just can’t get to everything we’d like.

 

I will note in our files that there has been a request for information on tracheobronchomegaly, and will share this with my supervisor.

 

You may also want to call the respiratory health educators at the Ontario Lung Association. You can reach them toll-free at 1-888-566-LUNG (5864)

or by e-mail at info@on.lung.ca .

 

I wish you and your husband all the best.

 

 

Regards,

 

Mary McNeill

Information Specialist / Documentaliste spécialisée

National Lung Health Framework / Cadre de travail national sur la santé pulmonaire

The Lung Association – National Office / L'Association pulmonaire - Bureau national

1750 Courtwood Crescent, Suite 300

Ottawa ON K2C 2B5

** For all newly diagnosed patients, stay tuned as I'll be offering some practical suggestions in the part two of this article, coming up soon.