Tuesday, July 06, 2010

Embracing Jeremiah 29:11, part 4

"For I know the plans I have for you,"
declared the Lord,
"plans to prosper you and not harm you,
plans to give you hope and a future."

~ Jeremiah 29:11

If you missed part one, you can find it HERE

If you missed part two, you can find that one by clicking HERE

If you missed part three, you can find that one by clicking HERE

** (Let's rewind a wee bit here to the timing shortly before my turn to ask the questions so ingrained in my mind... mostly because for some reason, all of the following was lost in the upload for the last post.)

The surgeon doctor asked if he could take some time with us to review my husband's medical history, going back to
the very beginning, even before the final diagnosis.

It suddenly dawned on my husband and I, when we both realized simultaneously that he had nothing in that blue file to indicate previous presentation of his rare case.


We weren't really expecting to have to rehash all from the beginning again, mostly due to the fact that my husband's former respiralogist had written him a very lengthy introduction over 18 months ago already.

In rewind mode, he led and we followed with answers and information, watching him scribbling notes as we went along.

Here though is where it gets very heady and all too overwhelming memory-wise and even, yes, somewhat emotionally. The first question that comes to mind is HOW to point form ten long years of this disease, not trying to forget a thing along the way. (thus the binder of information I've kept along the way)

The doctor was incredibly patient, sometimes provoking a response from more questioning when rendered necessary for his own understanding, sometimes he began taking more notes, or sometimes he required a moment when pushing back into his chair, as if he were in deep thought about something that was voiced or presented during the rather lengthy discovery session devoted for this.

Admittedly, he could have depended solely on other doctor's presentations and opinions for my husband's case, but he told us he actually preferred to have a personal dialogue face to face with his patients instead.

This first step took an enormous amount of time, well over an hour anyway.

By this point in time, I was becoming even more impressed, not sensing any evidence of being hustled through so the doctor could get away to another appointment, or home for the evening.

Never once did we feel rushed in any way!

I know my husband was spent emotionally about half way through our review period, and from past experiences when we've had to dig in to the plunging depths of his medical case yet again, he tends to shut down awhile, unable to visit there mentally, asking me to fill in for him with the doctor.

There have been times when he is overcome by triggered thoughts and unpleasant memories, soon becoming a bit speechless and the physical need to just - "be still" to recover.

When those occasions hit him hard, it then becomes just too much.
And, it is during these times when I become so incredibly relieved to be present with him.

One can hardly blame him because after an appointment such as this one, I myself feel like shutting down for a time, feeling a bit dazed by the end just from the sheer magnitude of how our lives have been immersed with the effects over the devastation of an inflicted lung disease. The ripple effect it has had on loved ones near and far is nothing compared to how much it becomes on the one person suffering from the disease itself - my husband!

My mind tended to wander a bit during our conversations, quick flashes to incidences passed, watching some of the toughest and most crippling emergent moments swiftly consume my husband.

I felt glued to that present-mode chair right about then after my own thoughts took me back and forth, to the past and to the present, and beyond. I knew I was not wanting to leave the medical appointment until all of my questions were also answered, biting my tongue until it became my turn to ask them.

Fair enough was my thought - after all don't all spouses feel the way I do?


Next step was a complex physical...

Removing his shirt and getting onto the examination table, the whole skyline of downtown Toronto was in full view with the sun beaming down to highlight much of it behind him

And still - on the computer monitor ahead of me, the continual reminder of our purpose this day was that screen still showing my husband's inner lung disease details.

If I couldn't have a printer hard copy, then I decided I wanted a photo. I pulled out my cell phone, had it turned to mute and snapped away very discreetly while the doctor was busy examining my husband.

While observing him during my husband's examination, just witnessing the variations and particular areas of interest the doctor began to intently begin to check out with great interest, I felt that "helpless" feeling again, and then just when I know I needed it most, that same peace washed over me again. I forced myself to take a deep breath, and submitted to a sudden confidence that my husband was in very capable and experienced hands.

Aside from the regular things; heart beat, pulse, ears, throat, and blood pressure, the doctor spent much time examining my husband's chest and other oddities;
  • He did something another medical personnel had not done. He used his fingers and slowly and very carefully (think painful) began following along under my husband's rib cage, pressing gently, outlining and mapping how long and wide his lungs had grown underneath of and below the last rib.
  • He simultaneously took one of his hands, checking specific areas of his fingernails to correspond with parts he was examining, checking for clubbing that can come from lack of oxygen to the body and brain.
  • He lingered long on parts of his neck, and then the upper chest, particularly where his trachea and bronchi were located. Tracing them with his fingers, he tracked along gently from side to side.
  • He checked his ankles and lower legs for signs of edema.
  • He checked his heart again, stethoscope traveling in a multitude of places on the front of his chest and along his back.
  • He used devices to check inside his ears, requested he make eye movements and checked under his eyelids.
  • He checked the inside of his opened mouth, along the tongue, his throat, and seemed to be in a continual and literally deep state of mapping his entire body for typical suspected traits of the disease.

My husband's blood pressure was quite high he had noticed, and warned him to keep on top of it and get back into the habit of taking his blood pressure morning and night, keep his medication regular and continue to log all of his stats.

A few moments later, the doctor dodged for a second, directly making absolute eye contact with my husband, and with still a calm tone in his voice, he minced no bones about how important this topic was. He ordered my husband to keep control of it, whatever he had to do, to do it as a lung disease is very hard on the right ventricle of the heart and pulmonary hypertension issues can become severe within no time at all.

I could see my husband's face and
I just caught myself in a knee-jerk mode, offering to lighten the mood by joking about how the blood pressure was up because my husband was scared of this surgeon, all snickering a bit from this unintended remark.

Whew though ... odd as that was, humor does help when the intensity is thick!

The second thing he insisted upon was actually a request.

He wanted permission to obtain every medical file and every scan, xray, blood work, cardiac catheterization, and pulmonary test, because he definitely wants to get to know my husband and his case more closely, as detailed as possible.

He also wants to get to know him more, not only for his own file, but for consultation with his transplant team, and other respiratory/surgical lung specialty personnel, for familiarization on my husband's personal case and the rarity of its complexities.

When at one point both my husband and I mentioned being overcome at times when sudden instances occur for no reason at all, emergent and crippling ones when my husband is suddenly unable to catch his breath, this same bit of information already briefly mentioned in the initial medical information gathering, when he jotted a few notes but didn't seem to think anything of it, now after detailing specific instances - abruptly - he sat back in silence to ponder each items one by one.

Uh-Oh, we could tell this was just not a good thing!

I suppose one could say, we had stumped him!

After (what felt like a very long time), after he was able to assimilate all while sitting back in contemplation in his chair, almost in such a deep state of thought, he strongly suggested that the cause wasn't coming from his lungs. Perhaps his airways are too narrow when performing any physical activity, perhaps something else characteristic of the disease, but he wasn't exactly sure on that.


Several times from that moment on, he kept admitting to being extremely curious about this divulged bit of information and began seeking answers to even more specific questions he put forth during various leftover moments together in that small sterile hospital room.

Now, crazy as it seems, this has all been information already offered before, and no other medical personnel thought anything of it.

Here this day, a lung transplant surgeon is questioning why this happens to my husband - at all?

I'm now just so curious myself, very intrigued as my husband also is, and feel like we've hit the jackpot with this doctor's admitted curiosity at a high peak.

It was here after all the detailing also offered on how many from the medical world LOVED being associated with my husband's rare case, everyone wanting to remain in the loop (weird when some aren't even people on the case or ones we know!) when the surgeon said;
"Of course you are rare and that alone will offer plenty of medical curiosity seekers." ....smiling as he said this.

My husband's last questions of the day were;
  • So does this mean you'll be personally tending to my case then, after all I would be a new patient for you, and I heard you're not taking any new patients?
**Breaking out in a smile, as if to give us some assurance, with his voice even softer yet as we stood together he stated his timeline for retirement hadn't yet come, he was not taking new patients but he would be involved in my husband's case himself.

  • So where do we go from here?
** The doctor kindly suggested to wait until he gathers all the information he can to understand more of this rare lung disease. He told my husband to continue seeing his current respiralogist and that YES, he would be seeing lots of him in the near future.

In other words...

... there really are no other options available medically, and in the simplest terms possible - the process has begun, at least the process towards this final end will continue to roll along, that is until such time as my husband actually commits to wearing a pager after signing on the dotted line.

Will he or won't he?

Those are the only two questions remaining now....

The pager lifestyle would mean at any time he could be alerted (24/7), and the reality will settle in when having to always remain within a 2 1/2 hour radius of the hospital. (This is much improved because it used to be only one hour away at all times, something we had to keep in mind when moving to this geographical area in the first place.)

All this also means there is yet again "yet another new medical teamwork" happening on my husband's behalf to tend to his very rare lung disease, all hopefully to keep him comfortable over summer's humidity (as tough as the dead of winter), the lung infection time of year during this season ahead, the one he dreads when not living within a totally climate controlled area.

Like two weeks ago for instance (and this week with our heat wave), when humidity climbed suddenly and by 10am, my husband told me he was leaving the office and returning home, as it was too difficult to even control the air in his office. When arriving home, he headed for bed for a few hours, utterly exhausted and gasping for air, unable to breathe well at all. No, that was just not a good day around here.
The following day he found out three colleagues from his respiratory physiotherapy were in hospital from the same humidity he hadn't handled well either. At least he was able to function the following day when the humidity cleared up for a time.

While exiting through the doorway of that patient examination room almost 2 1/2 hours after we had first entered it, standing all together out in the hallway, I leaned closer to my husband, thanking the doctor for accepting his case and taking him onboard, thanking him also for all future care of my beloved and very rare guy.

He smiled, and then in a softly spoken and most compassionate manner, he assured us we would be hearing from him again and he would be accelerating the tracking process.

~ In time that 4-5 day in hospital transplant team assessment will be necessary to determine more test details necessary for this journey ahead, as will my husband's long awaited 4-8 week respiratory physiotherapy bootcamp once again. In fact, it is my prayer that he gets the latter call, soon, to regain more strength during the most humid and hot days ahead, keeping him safe from the dangerous elements for lung diseased folks.

Welcome to the on-call days of summer ahead just for these sessions, not really knowing the - when, how, or what for any of the little squares on our calendar.

And we continue to attempt living life in a "normal-mode", as best we can, all of the time.

With that, I will continue to blog about "the normal", because our days are filled with the present, not worrying about tomorrow for that only robs us of today.

Shaking his hand, together we began to stroll away, heading down the hall corridor hand in hand back toward the location of the elevator, leaving one of the most mentally and emotionally difficult encounters a married couple could ever have in the center of their lives.

My husband and I offered one another weak smiles during our stroll back through those halls, noting together this time all of the bold signage on the elevator doors, the ones at the entrance to this area twelve floors up, that of the "transplant wing" of the hospital.

Down we rode, and exiting the elevator door once back on the main floor, we remembered we had no transportation to retrieve our vehicle all that distance away.

Almost laughing at the thought, what are the odds of seeing a Starbucks (ahead) in a hospital anyway?

We weren't in a hurry, or were we, I asked my husband.

You see he had plenty of forethought beforehand, thinking that no matter the outcome of the appointment, we would celebrate life this day in all it holds and our life together as a couple.

He had made
reservations at that very same restaurant where we dined the late afternoon I had kidnapped him out of hospital last year (click here) to celebrate our wedding anniversary together.

So, sure we had time for ordering a frothy latte and as I stood in the waiting line and caught a glimpse of my man standing a short distance away, the man I have loved since the day I met him at the young and tender age of fifteen, my man!

I offered him a smile and knew for sure, we were being carried for all we had on our minds and all we felt deep in our hearts at that very second.

An intense topic was just experienced, but
a complete sense of peace accompanied this day.

Once my drink was announced by the barista, it became something apparent this cup of warmth was offering a special comfort in the midst of a medical storm's epic center.

I held on to this cuppa dearly, with two hands as we walked in no great hurry out of the front glass doors of that hospital, knowing hailing a taxi was the next thing ahead.

As if awaiting our hail, an available cab sat in the u-shaped area outside of the doors and after we entered the driver's vehicle.

As if there weren't enough reminders in our day, oh my I loved this one, there was no doubt about that rosary up there, the one swaying gently back and forth on the rear view mirror.

I became utterly thankful for our wonderful driver who had no idea how he was about to "carry" us back to our vehicle waiting in the other hospital's parking lot, the one spot we had not found a parking spot available, the place where one came up at the last moment right outside of the door so my hubby wouldn't have to walk far.

There was a comfortable silence in the cab. Besides, who wanted to speak anyway? We people-watched our entire way back to the other hospital's parking lot, right through China town during the business day's rush hour traffic.

If only that driver knew what we had just been through. Nah, he would not have believed it anyway!

Very soon, we would shift all of our thoughts and emotions of the day and turn all into a
"celebration of our lives together", alone to absorb and attempt to process this extraordinary day - just me and my man.
As we were about to celebrate life in a big way by diving into this dinner date together, once we had finally arrived at the dinner destination through the thick bumper to bumper downtown traffic, we allowed the valet parking service (free when you eat there) to take our vehicle, allowing us front door service and a short walk once inside.

Early, we sat in the very FULL bar area at a table for a few minutes, and silence reigned for a bit. Snapping photos of one another (using a new app on my iphone) offered several giggles,like the one below snapped by my hubby.

The hostess informed us on our way in to the restaurant due to our little wait to get inside, she was awarding us with the VIP table, in just the perfect spot.

And it was, JUST PERFECT!

A birdseye view into the kitchen area allowed my husband and I to glance at some of the chefs working away on the dinner feasting hours ahead.

In our little alcove, we were alone, total privacy for our conversations to come.

And then, four eager and friendly faces descended upon us, offering the most fantastic service I think we've both ever experienced.

~ It was then where we toasted one another, promising that
no matter where we were to go from here, whatever the path, and the medical journey to come, we were in this together.

For you, my beloved husband...

I could stay awake, just to hear you breathing
Watch your smile while you are sleeping
While you're far away and dreaming
I could spend my life in this sweet surrender
I could stay lost in this moment forever
Where every moment spent with you is a treasure

"I don't want to close my eyes ....

I don't want to miss a thing."

(please pray for us and all those afflicted with lung diseases)

Stay tuned for all the questions and answers posed in these posts


Embracing Jeremiah 29:11

And the big reveal...

~ of a new blog where all future medical posts will appear instead of here, also bringing about (hopefully) even more awareness to the (dreaded) very rare;
"Mounier-Kuhn Syndrome"
...the place where all those questions and answers will also appear.