Rare Lung Diseases
"Mounier-Kuhns Syndrome"
When a family has been sorely tested medically with a prognosis such as facing a
double lung transplant, surely they face emotional and mental limitations no one else can honestly even fathom or begin to understand. Just as they must be facing insurmountable hurdles beyond everyone else's comprehension, only God knows what lay ahead for people like
Nate, Tricia and their families.The mere mention of a double lung transplant causes many people to grip their throats and offer involuntary gasps, eyes filling up in utter terror over the general thought of it all. It gets the cogs turning with the fearful possibilities of medical complications and makes one wonder about any moral implications from the very mention of organ donations, which can and do, ultimately save lives. We know all too well this same shell shocked reaction, it's a horrifying thought and yet a double lung transplant offers so much hope for the one afflicted. All someone has to do is head over to
Youtube and type in the name of this operation, where there are many personal stories on video clips available to inspire hope for anyone. We also know exactly the fearful and emotional trepidations of a lung transplant diagnosis, because over the past few years, our family has had to come to grips with the inevitable medical journey ahead for my husband, also requiring a double lung transplant down the road, but how soon or far is the unknown for us all.
It has become a medical waiting game, watching doctors figure out when its time for the line to be drawn in the sand, feeling like some days we are living in limbo land, attempting to remain positive, always moving forward and fighting to retain anything resembling normal. Like anyone in this situation, my husband can experience good days and very bad days. We keep forging ahead, picking ourselves up when emotions become too much to handle, continue to plan for the future, make new goals, still facing each new day with thanksgiving and hopeful thoughts of better days ahead.
"Jesus, I trust in Thee"My husband suffers from a very rare lung disease, with very few around the world to compare his case with, either still alive today, or yet diagnosed. In fact, nine years ago he was listed as
case # 83 since 1946 diagnosed and afflicted with something almost unheard of (still) in medical circles called;
"Mounier-Kuhns Syndrome". Because of its rarity, even when contacting a facility such as a world renowned place like the
"Mayo Clinic", even they couldn't offer any pertinent medical information on this particular disease; what causes it, when it could have begun, nothing at all. When I wrote to them five years ago, the reply turned out to be very disappointing, especially when the theme of the letter was a plea for help. They only offered the possible assistance of a double lung transplant in the future, and nothing else of informational value. As the years have rolled by, we are finding together, my husband and I
obviously have a vested interest in his case, but we definitely know more about this disease than the Mayo Clinic has recorded on their own website, so it would appear they haven't kept abreast of it with more information placed on there.
Naturally when this diagnosis was labeled on my husband's chart, I scurried to the computer, typing in a search on my
Google tool bar. One page with seven links was all there was, two of them no longer working, and certainly nothing like someone with the same disease reaching out to another for a supportive medical walk possibility. Today, the same search offers several hundred pages, most are either the very same information copied from one to another, or are medical journal pages written on secure sights which I am not able to sign in to.
It's very frustrating not to have more answers, but we appreciate the doctors who have been honest and forthright with us when detailing not having a clue what to do any longer. It becomes then even more frustrating not to find a support system out in cyberspace, getting in contact with others facing this same diagnosis. To date, we know none diagnosed with the same disease as my husband, but we would love to find you if you're out there! I can tell you first hand, beginning a
blog such as Nate's has given much hope to many in the world of lung diseases, if only to gather momentum on the importance of gaining valuable support circles for those afflicted around the world. It's a bonding issue for them all, nothing anyone else can possibly relate to for sure!
Over the years we have become accustomed to the medical world wanting to be included in the loop, mostly for the intrigue his particular case has presented to them. My husband is seemingly famous at the
"University of British Columbia in Vancouver, B.C." his xrays are frequently used to teach pulmonary students about his rare lung disease, as well as other medical places around the globe who are interested in continuous study of his case. This isn't the sort of fame one desires, not at all, but though my husband's health for the future is uncertain and I know we will someday walk the path into the world of a double lung transplant in our home, I can't even begin to describe how I'm feeling today with my heart high up in my throat, still waiting with baited breath on the outcome of
Tricia's surgery. It's all really ringing too close to home for me today, and while I am quietly pondering my own thoughts here with this young family, I know my husband is also affected and continues to keep abreast of the news on Nate's blog as well.
I can assure you that using this private blog as a platform for the purpose of sharing this highly private medical topic has never been part of my intentions before. However, over the course of the past few months, my husband and I have sensed a great need to reach out into cyberspace for the purpose of seeking and possibly gathering practical support from others out there with his same lung disease. I hadn't planned on filling the blog with this sharing session today for sure, and my hands are still trembling as I complete this. On the other hand, my husband is filled with a deep sense of peace, realizing its the right time for finally posted here for all to read, not only for our family and friends back home to get more of the big picture, but for new friends yet to arrive for a visit with us in cyberspace.
For today especially and the days to come, please continue to pray for Nate and Tricia and if you remember my husband, please say a prayer for him too, with thanks.
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