Friday, April 16, 2010

Even in tough times, blessings do unfold

Reconnecting with family and friends after living away for some time is always a deeply gratifying experience, a total memory builder we can hug tightly and keep close when having to return back east again. Who knows when these types of visits will be possible in the future once more, therefore, we seize the day, allow for serendipitous moments which seemingly unfold in ways least expected.

During our recent trip west, for some reason my husband's first two days after his later arrival were spent with sudden and sometimes extreme breathing difficulties.
Not sure what was even happening, it took everything he had to maintain composure during any walking or movement action moments, even just perhaps slowly taking a few steps toward the vehicle a short distance away. If he encountered a slope or stairs to climb, we knew in advance to take it slow and steady.

Anxieties began to build when he realized all the muscles on his stomach and around his rib cage were suddenly seizing up and screaming for mercy just at the same time he wasn't able to catch a normal breath of air, feeling dizzy and weakened by uninvited difficulties.

In the midst of the sessions, his hands began to tremble, his eyes showed me his alarm and distress, instantly requiring calm and quiet, suddenly unable to speak, at all, just pulling back into survival mode to avoid the panic sensations quickly creeping up his throat from taking control.

This isn't anything new for us, we both know this moment when it arrives. There is never a telltale it's even about to erupt, always varied in form, yet definitely always alarming in nature. This surprising episode, like others experienced in the past, was completely varied and different than before.

When all seized up and began to take full control so swiftly, very suddenly consuming my husband's total concentration to cope until passing, continuing and often crippling, again a reminder the lung disease is wreaking havoc during its unfailing and expected degenerative strange timing again.

Silently, as a couple, our eyes would meet often, signals passed between the two of us without words. I knew when he required sitting, sleeping, resting or solitude.

Both of us were occasionally plagued with thoughts on how emergent this may all become, but also how it might also soon pass.

The next few days were spent focusing on allowing him plenty of rest, taking it easy, until more controlled breathing abilities eventually began to offer him a reprieve from the nature of the lung disease beast.

A reprieve did come, though it only occurred three days later which was fairly good by past standards. Not all was fantastic, but my husband found himself able to cope and recover a little more each day. Remembering to sit and recover often was the key to keeping his energy levels functioning at optimal levels.

Trying to maintain something akin to "normal", no one knows
how difficult this position was for him, but he made it *appear* effortless.

Most of all, we know such is the way of this lung disease. No one knows what actually triggers emergent moments into action. There are never two incidences that seem to connect with similarities, all are unusual to say the least. He was walking very slowly when this one erupted, barely beginning to walk.

This was so NOT a good way to begin his time visiting out there...and he would venture to admit, he was not really offered a respite from living without one of his puffers or a combination of them all often over the course of the next few days.

Now that we're home, some of the remaining symptoms are still rearing their ugly heads, just something else for my hubby to learn to cope with as the degeneration continues to worsen.

Even in tough times though - blessings do continue to unfold...

One very special highlight of our trip was;

...having the opportunity to meet up just over the border in Bellingham, WA with a couple who traveled to the area from south of Seattle.

Two weeks prior to our travels, we were contacted by the wife after finding my blog (yay!) when she Googled "Mounier Kuhn Syndrome", the lung disease my husband is continuing to suffer from.

Rare as it is, we have yet to find anyone ALIVE with this same disease, save for her husband who was recently diagnosed at age 41 with the same. My husband was 42 when he was first diagnosed. (The disease is most often found predominantly in men during their third or fourth decade of life, so they were both right on target for timing.)

Mounier Kuhn Syndrome
is indeed so rare, when my husband was listed as number 83 since 1946 around the world with this medical diagnosis, we knew there couldn't be many still alive. We do know there have been more since he was diagnosed, just how to find them has always been the problem!

When I first Googled the name back in 1999, only one single page appeared with a few links to check out. Now when Googled, there are hundreds of pages offering similar standard information from one to the other, almost carbon copies to exact specifics.

When this couple Googled the disease a few weeks back, my blog showed due to one of my tags used on this blog being the name of this exact disease. We are so thrilled they were brave enough to contact us, and after many emails flew back and forth, there we all were feeling very fortunate not only for them making contact with us, but also realizing very suddenly, perhaps there could be an attempt at meeting during one of our days out west. Awesome!

Our luncheon solidified a bond and connection, most inspiring to say the least. It was a pivotal moment for us, my husband and I, so very grateful all came together according to our plans even though my husband was still not feeling his best.

Many topics and specifics came to the forefront, (even for me this day) during our conversations. I found myself gulping down every word, every thought, every emotion displayed at the table.

When the men described not feeling well, they were able to discern symptomatic differences, bouncing ideas back and forth. We found ourselves immersed in medical jargon, medical plans, medical research, internet disappointment for researching or finding others, and many doctor specifics.

Please understand, for ten long years there has not been another we've met or become aligned with to offer specifics on this same disease, enduring all sorts of medical personnel not knowing what to do and finally just lumping my husband into other lung disease categories (COPD, Pulmonary Fibrosis, Cystic Fibrosis,etc) for possible treatment that are not the same, or even similar for that matter - at all.

With secure medical privacy issues in both countries, contact would never have been made possible, although, in the US the privacy guidelines vary from ours here in Canada.

True to our initial purpose with the goal of finding others by writing about this disease upon occasion (as per my husband's request) on this blog, this entire lunch was made possible by plugging along here using this MKS as subject topic over the years. Bingo!

Naturally resources were shared, and instant bonds were formed. We were told we were an encouragement for this couple, likewise for us, its obviously in the same capacity, all trying to assimilate what is happening in our lives. It is our fondest hope to keep in contact in the future as both mens' medical journeys unfold, offering support and continued dialogue over the years.

Rewind back a bit to weeks before contact by this couple....

Two months beforehand, I enjoyed a successful Google research moment when I first discovered the "Just Breathe Foundation" while in session, perusing once more through the hundreds of pages coming up for the disease. At that very moment of success, it was difficult to contain my enthusiasm. I could hardly believe my eyes! Initial contact was made and we awaited for something in return, anything actually.

Sadly the purpose of the foundation which began almost two years ago was in tribute to a young man living in Florida who was also diagnosed with the disease, dying unexpectedly after a lung infection became out of control. He was only 38 years old. His wife was expecting, seven months pregnant with their second child, the older child was merely 22 months. The Foundation and linking website is indeed a loving and beautiful tribute to him.

Since it took so long to hear back from the foundation, I thought maybe it was now inactive until several weeks later an email arrived. It was a personal note from the wife of the man whom this foundation has honored.

I felt an instant (and almost protective) connection to her, and emails were sent back and forth faster than express mail. And then all was suddenly quiet again...for a while until the night before we met the other couple in Bellingham, WA.

The night before, her email appeared seemingly out of the blue. She mentioned the reason for the longer gap than anticipated, also passing along that another had contacted the foundation and would we like her to match us up together if the other couple also agreed. Right away I knew who she was writing about, our very same couple from WA. How amazing is all of this I thought and what timing too!

So, after ten long years, there we were, face to face chatting nonstop through the entire lunch, and now we are *three* are all united on behalf of this disease, rallied together because the woman from the foundation is also on board with all of us, willing to share her husband's medical file with both of the mens' doctors in the hope of finding a common bond, a common link, if that is possible. What a huge bonus and fantastic blessing for both men!

As if finding others hasn't been enough, we've been asked to assist with the foundation's work, finding doctors who are willing and able to assist with
"Mounier Kuhn Syndrome" research.

Having shared all of our medical particulars together, we are absolutely on board (in a heartbeat), and we happily await any future requests or directives. The goal is to continue finding others out there in the big wide world and assisting in any way we can. Amen!

My only regret was not pulling out my camera (oh, how I did think of it often though) to have a photo snapped of the four of us over our lunch, but then, as emotions were quite high, it didn't seem like the right time or visit to pull it off. Next time. Well we are all agreeing on a next time anyway. :)

Future possibilities await, rendering happy smiles for all involved.

How great is that anyway! An answer to prayer for sure! Yes, for sure - even in tough times, blessings do unfold...

(And for those we had to cancel on, and weren't able to spend time with, next time we can only try again. Hugs. )