Monday, June 28, 2010

Embracing Jeremiah 29:11, part 3

"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

Down the hall and into the room we three entered.

Within seconds, all of us were seated in the tiny medical cubical type of room one would expect in a hospital, and as ready as one can possibly be for what would prove to be the most intense medical appointment to date for my husband.

As strange as it might sound, even with the intensity of the life and death topic at hand, very quickly, the room was filled with calm and a great sense of peace no one could deny.

Prayer.... it was hugging us tight and evidence was all around us.

I could even see the impact it was beginning to have on calming my hubby's weary nerves, though he was still gripped with fear over the professional medical title behind this man's name, the very one sitting before him, the same one that might quite possibly hold a scalpel over the front of his chest in an attempt to save his life in the near future.

Understandable were his emotional concerns, and while the mood seemed a bit somber at first for the intensity on the purpose of the visit, the surgeon had a wise knack for controlling just how tranquil the meeting session was to be.

There was an undeniable peace swiftly filling the room, offering an unhurried sense of purpose to settle in for what would prove to be quite a serious fact finding time.

An invisible shield seemed to be wrapped about the room, one offering gentle tones to squash any telltale quivering that might visit our voices when having to speak, or to quiet the pounding in our heads from wildly beating and extremely frightened hearts obviously ready to burst.

Naturally as one might imagine, it was there in that moment when even more silent questions began to gush to the forefront of our minds, ones that we just felt like orally blurting out, just forgetting about any type of proper etiquette, so impatient to just get answers to those not so simple questions such as;

... "when, where, if, how, can you, will you, will I, will he, shall we" ...

~ and a myriad of other sentence starters began to take up space at the tip of our tongues.

Setting that blue file folder on the desk before him, the surgeon was preparing for our next few hours together. I admired the way he remained unhurried, no doubt sensing the emotion in the room for one thing, offering a smile without words, as if assuring us all would be alright.

As the file was obviously belonging to my husband, his first remark was something like;
"Gee I love the look of that very slim file, not thick and overflowing as some of my others have been in this medical journey of mine."
Smiling back at him for the remark, and picking it up to open the cover, the surgeon showed us the few pages filling its interior, all offering a chuckle momentarily, an ice breaker to be sure during that very fine beginning of our session together.

Around the same time, the surgeon had also turned on the computer, pulling up the chest xrays and ct scans my husband was able to have forwarded from various medical doctors and other hospitals for this day's fact finding purpose.

Since most were quite current, he had been previously notified he would not have to repeat all of these this day after all, a good thing too because that meant a shorter time at the hospital and no unnecessary radiation before its already next scheduled appointment timing booked already ahead this September.

While the doctor studied the material on the screen, discreetly my hubby and I turned to one another and locked eyes for a second, feeling even more depth of that peace as we simultaneously sensed the kindness and gentleness of this man's demeanor. No one would deny the importance of securing a medical surgeon with a proper professional personality and respectful bedside manner when thinking of surrendering one's care to him.

We liked him right off the hop.

A bit of kibitzing from that thin blue file folder assisted in creating a mood for the rest of the appointment, still so very intense internally in every way, but peaceful waves that really did surpass all human understanding for the type of required conversation and questioning at hand.

From my viewpoint, when he magnified the one ct scan on the computer screen, no one could deny the copious amounts of damage to the interior of my husband's lungs, nor along his trachea and bronchial areas.

I could detect from where I sat, all of the white flecks of bronchiectisis damage, the scarring in the interior of his lungs. I caught myself, a tad emotional for a second realizing the meaning of that, seeing the interior and state of my husband's lungs right there on that screen.

I had not yet seen this particular ct scan myself, suddenly intent on ensuring we got a copy for my husband's file at home.

I've been documenting and collecting all of the medical data information possible for the past ten years, subsequently filling a three ring binder and a second is now required. It's been an information reference which has been instrumental for new doctors since our move east; especially for rereading things along the way we had either forgotten about or didn't see a correlation on before.

The doctor surprised us a little, concurring we should have our own copy and tried to print one out, unsuccessfully for lack of getting the printer to correspond to his program on the computer screen, apologizing for not being able to assist with handing one over to us suggesting how we could obtain a copy later.

(In Canada, this is not always the case to have a doctor want to share copies of his file, normally they don't do that here. Luckily most of my husband's have.)

Very soon, I had full confidence in this man sitting before us!

First things first, he reviewed the slide show content with us, the one we had watched together before seeing him as he wanted to be positively certain we understood the depth and complex nature of what was entailed in lung transplantation in the general sense of the word, the dramatic reality of the topic, and the blunt truth of it all.

He seemed very relieved and pleased to find we were quite knowledgeable ourselves on the topic, explaining to him how we had already enmassed plenty of our own personal research over the years, keeping abreast of all things on the disease itself and lung diseases in general, even having followed several live people towards lung transplantation and through their recovery.

And as other assorted topics appeared, he was greatly relieved to hear how we had become interested and kept abreast of current medical research in progress around the world on various topics for the lung transplant process itself, things like;
  • banking one's own stem cells before transplant
  • blood type advances for transplant recipients
  • living lobar lung transplant options
  • anti-rejection drug alternatives
  • anti-rejection side effects and treatments
  • recovery requirements and physiotherapy continuation
  • diet and lifestyle changes
  • and alternative lifelong considerations.

This doctor/surgeon was such a good listener, so compassionate and so patient. He invited my husband's thoughts and questions;

  • What did this surgeon see in his case so far to offer a time estimate for end stage disease?
  • How long would he have before this option was imminent?
  • How were his FVV1 readings compared to what he prefers to see in his patients?
  • What about his low lung capacity readings?
  • Should I bank some blood ahead of time, seeing as how mine is such a rare type?
  • He asked pointed questions about the suggestion for banking some of his own stem cells for the future?
  • What about my oxygen levels and the need for oxygen support over time?
  • What about his rare blood type slimming his chances of a transplant in the first place?

As I watched my husband trying to assimilate all of the answers to his questions, writhing in unintended facial emotion, his voice began wavering and lowering, eventually becoming very quiet. This talking life and death together tends to become such a morbid issue, its as if a stop sign suddenly appears and everything has to come to a halt for a time out.

I'm sure the surgeon recognized this too. He was not in any hurry to discharge us from this visit. We had just begun it seemed. In fact, he sat and acted so casual with us, as though he had all the time in the world, so very soft spoken, so deeply respectful of the life before him.

When it came time, my first question was a straight shooter;

  • "Have you seen a patient before with MKS"
.... and by his answer "Yes I have", the way he voiced it, I knew whoever, or however many there had been before through here, they were no longer alive.

It was here I wondered, how many, how far along was their disease, and what possible other issues could they have had alongside of it.

He could tell I knew the end of those patients journeys, his eyes meeting mine, just seemingly able to acknowledge what I was thinking. They were no longer alive. I knew it then. But, HE HAD MET another...or maybe a few. This was excellent news however morbid that sounds!
I knew I wasn't able to press on, the privacy rules so strict in Canada, he wasn't able to tell me more. But still, I wondered....
  • So how rare is this case?

not an answer I was actually wanting to hear.

I won't kid you about my deepest feelings here, I've always wondered if everyone had the right diagnosis from the very beginning due to the fact his disease seems to carry similar traits of others. The what ifs, and the parallels to other thoughts have always come up.

And then I really dropped the bomb...the one no one has had the answer to for so many years...the same one a few of us need answers on;
  • If Mounier-Kuhn Syndrome begins in the trachea which then predisposes the lungs to multiple lung diseases over time, like all three in all in my husband's case, getting new lungs sounds all too typical to replace the old damaged ones. BUT, wouldn't new lungs then also become predisposed to the same end?
  • Would my husband not also require in this same operation, a new trachea, and new bronchial system for these are both quite damaged also?
  • How then if not would we be able to protect my husband's new set of lungs from future damage from the current trachea?
  • And what about the bronchial tube and both bronchi then?
It's about right here when one gets all involuntarily uncomfortable under the collar, pent up emotions begin to swirl about in our heads, mostly for this darned disease's "RARITY", when no one really has all or even any of the answers, not even the best of the best surgeons!

It's not his fault though, nor my husband's for presenting such a strange case. It's just hard to watch my husband happen to be the one who is living the reality of it all.

Where there are no answers,
one can't grasp on to the hope of possible solutions.

Where there are no answers,
a zillion questions will continue to fill our minds.

And where there are no answers, and all is left until such time as one's chest is cut open and widened, maybe that's when it's going to be too late to acquire them, when other emergency measures might well occur and drastic decisions suddenly required medically in the flash of an instant. How does one prepare for that then? Having faith is all I can think of...

As much as I wondered how many lives he had saved during his lengthy career expertise, I also wondered how many had he lost and we wondered how many were lost while they waited their beepers to sound off when hailed to drive to the hospital for their operations.
Last Friday, my husband returned home at dinner, announcing to me that one of the two patients at his usual respiratory physio had been working hard on gathering more strength and wearing beepers for lung transplants, the one that was the strongest in his opinion, a 58 year old woman, had contracted bacteria in her lung and she had succumbed to the infection only the day before. Poof. Just like that, in three days since he'd last seen her, she had passed from pulmonary failure.

Life and death can pass that quickly for a someone with a lung disease, fear of infection is great and for good reason.

The surgeon kept assuring us he did not wish to ever rush anyone in to a transplant decision, and preferred the attitude of the patient to be only proceeding as a last measured option as opposed to a cure by way of prognosis, and not to hurry prematurely through to the end step without due cause. But in reality, my husband knows he's getting very close to this deciding factor as he admitted to the surgeon he feels weak all of the time now.

I found his preferences respectful as I remembered writing to the world renowned "Mayo Clinic" ten years ago, detailing my husband's rare case, begging them for help, and the only reply that came back was; "We can't help you, but if you ever need a lung transplant, please contact us again."

These were two very different methods of choosing to proceed with a life giving operation. One had compassion and a huge sense of respect for life in general, while the other was sadly all business.

A certainty of those deep issues we had been discussing made it very clear of the probability of losing my spouse if time were of the essence in the near future without obtaining either a miracle itself, or a lifegiving lung transplant operation.

The morbidity of the whole topic in the first place has always been all too heady but the only way through, might be....well, ... through it. We knew in our hearts this day's fact finding was going to have to remain an open ended option for my husband's consideration.

If we claim to be "ProLife" at all, that means we stand our ground for life from the cradle to the grave.
That also means when there are deeply emotional conversations with the patients at my husband's respiratory physio, when all fingers are suddenly turned and pointing towards him with regards to the topic on what he should or should not do, well that just becomes all too uncomfortable. With deep respect, he listens and absorbs how others are feeling in their own circumstance.

But sadly, it suddenly became way too personal recently when all pounced all over him negatively when he admitted not wanting to check off that "DNR" box on his medical papers, the one where he is taunted for even wanting to be resuscitated at all in the event of the beginning of pulmonary failure, it is in these conversations where he will no longer participate in the talks because emotions become so personally explosive when he just wants to stand up and shout out his own preference and say;



Part 4 can be found by clicking HERE

Embracing Jeremiah 29:11