Monday, January 19, 2009

A New Year Medical Update

A New Year Medical Update

I keep getting frequent and wonderful emails asking for an update on the continuing health issues affecting our home, mainly asking how my hubby is fairing since our family move. I suppose there's no time like now, as much for this 2009 New Year to come has us sitting on the edge of our seats at present. First however I need to rewind to last year and share with you about how much he was able to progress forward in battling his lung disease particulars that is until two months ago when everything seemed to literally unravel and fall apart for him with those very same issues.

Last fall my husband was involved in a sixteen week physiotherapy rehabilitation program which focused on patients suffering from mainly a "COPD lung issues". His own local physiotherapist was extremely frustrated personally when unable to assist him any longer, feeling as though he wasn't producing enough results for a reprieve in my hubby's overall well being. Instead of continuing with care, he strongly suggested my husband would be a good candidate for the medical program above at a hospital well over one hour away, in each direction.

After our family doctor provided a medical referral to the hospital's Respiralogist (pulmonologist in the US) - creator and founder of this unique Canadian lung rehabilitation program, my hubby was invited to participate in the formal testing to see if it would be of any advantage to him with his own specialized lung disease called "Mounier-Kuhns Syndrome". Tests precluded the next entry level invitation, and if a candidate passed through the proper hoops with those and a subsequent doctor interview and analysis, they could proceed to the actual course if awarded a green light to do so.

The course itself would begin with several weeks of educational talks from professionals. These sessions included an entire fabric of information woven with intermingling helpful advice which anyone suffering from a lung disease could only fully appreciate. These sessions turned out to be one of the greatest blessings for him.

He was educated on;

  • * Lung diseases in general, beginning with a crash course in basic lung and heart function, as both become affected over time.

  • * An overview and personalized documentation system is soon developed, including both physical and mental awareness during each session, including goals, expectations and limitations for each patient which are jointly assessed before beginning. Frame of mind was of utmost importance and a general criterion for the lung patient before even approving of a commencement.

  • *Bodily functions; every aspect of body function was discussed including the circulatory system, such a huge and important thing to keep tuned up within the body due to every part of the body being affected by a lung disease's secondary issues with it.

  • * Recognizing frustrations and limitations was an intense session, mainly because everything within this topic required turning negatives into positives. Every issue broadened thought horizons right down to those personally affecting each patient with suggestions creating do-able processing; everything from how to confront issues offering discouragement, frustration or physical recovery afterwards with exertion discovered at every turn. One such activity each seemed to concur on was physically being required to lift arms over the head and/or bending over. Each in its own way produced either insurmountable difficulties which previously seemed ridiculous to any patient individual in their past or enormous pain from the pressure on the rib cage from expanding or lung growth of the disease suffered. Simple things even required second thoughts before proceeding. My husband was having difficulty at the time bending down to tie up our children's ice skate laces. Suggestions offered were - Instead of feeling upset about the inability to do that any longer without causing him to be unable to grab a breath of air from the restricting pulmonary functions when bending over, he now brings along an older child when this type of thing requires another's assistance. Having to hang a picture or change a light bulb on a ceiling became another problematic issue for him, so now our older son has inherited this duty. Simple resolutions can easily be carved out but it's oh so hard to accept the limitations confronting the sufferer by having to make them in the first place.

  • * Psychological counseling for mental and emotional stages a lung disease patients will eventually walk through was obviously a biggie. More medical information was offered as to when they will begin to occur for what lay ahead, what they would be and how to combat them as labels in their medical journeys. This area has been one of the single-most important sessions for me as a caregiver to be able to understand the mental agony visiting my husband along the way. From great denial (looking in the mirror he looked good so surely it was all a lie), to discouragement (with limitations that keep getting placed on the "can not do any longer list") and even depression (over a bleak future medical prognosis) has been a huge learning curve for all of us to understand. Realistically if he won't share, we don't know - so when he's is able, or ready, he has had to learn to buff up his communication skills radically.

  • * Social service professionals educated all on the importance of setting up proper support systems and all of these sessions occurred even before twice weekly personal physical goals would be carved out with the physiotherapist to begin the actual physical part of the program. A whole lot of cheerleading has accompanied this step and plenty of good morale internally.

  • * Patients in the classes soon bonded, a unique camaraderie was formed. Call it a support system all its own because over time they soon became cheerleaders to each other when the tough physiotherapy became a struggle to either move a muscle a certain way, stretch or bend just one more time, recover in between session and not want to quit right then and there, and of course, all had difficulties breathing properly throughout the duration with the physiotherapist at their side motivating them onward. With a stethoscope around her neck, oxygen tester and blood pressure machinery rolling on wheels, she was with them all step by step as she documented their progress. She also knew when one of her patients was absent, it could very well be a lung infection had visited them suddenly, and all had something or another like this happens over the course of time. My husband suffered from pneumonia last February if you recall me mentioning it here, absolutely NOT a fun time in our home! And with physiotherapy if they miss a session, or several in a row, their bodies really fall behind and need to begin fresh again, just another frustration to add to the palette for all of them.

Some of the warnings are ringing in my head these days as each new trivial challenge sometimes wreaks havoc in our lives. It is during times like these when I know I feel at my weakest, especially feeling so very helpless. Sitting at the sidelines I tend to utter words of encouragement and if need be I offer a bout of tough love if I sense a pity party mode entering our home; those suggestions gathered to combat the little hindrances but always giving a reason to try something new to conquer over the annoyance of the day. For instance, last winter my husband discovered he could no longer bend over to tie up our children's ice skate laces, so "big deal", get one of the older ones to tag along and that would now be their responsibility and not his. And since June/08 he found it almost more than painful to bend over himself to tie up his own shoe laces requiring a solution to the newest issue at hand. Problem solved when he shopped for new leather work shoes which were a slip on type and bought two pairs. He found if he knotted up each lace on his other shoes (most of them anyway) where the pressure was best when wearing the shoe itself, he could slip them on and leave them untied. I was able to find twirly lace closure helpers this Christmas for his stocking to slip into the top holes of his shoes, and they offer a slip on ability for his track shoes now.

And if all else fails, IKEA had the best solution ever – a 2 ½ foot long shoe horn to assist anyone placing shoes on their feet without having to bend over ever.

Best ever problem solution; Long shoe horn from IKea

Other struggles;
  • * As a lung disease patient begins to notice even more limitations, their mental attitude can either make or break the moment. Something as simple as where to store things in closets, cupboards or anywhere else in the home or workshop becomes a liability if not easy to grab. Bending over or reaching way up high are no longer simple things around here, therefore we have resolved this negative from the consequences resulting from such imposed limitations by reordering the home with a new vision, always previewing the angles ahead to avoid more physical challenges. In this home that was a funny thing I must admit...having ten foot ceilings in the kitchen with cupboards meeting them way up high. This home was definitely not made for a dwarf like me (I'm 5'5") so I will invest in a kitchen foot ladder of some sort, and for my hubby, I will never place anything up there for him to ever have to retrieve. Broom handles have been useful thus far, believe me! Problem solved!

  • * A new set of pillows is a luxury for some, a must for lung disease patients as the option of lying flat no longer exists. My hubby is up to two king sized fluffy ones, but we are looking to offer him a third one. Problem solved for those really rough nights of mucus build-ups offering him coughing spasms after purchasing a reclining chair for him to find a reprieve when necessary.

  • * The decision of where to park while in town running errands is always an issue, due to the length of walking required between the distance of the vehicle and point of entry. Other factors include the grade on the concrete for the walk, and heavy doors to have to hoist open to get inside the final destination interior. Pushing a buggy at a grocery store filled with food is another area of concern, carrying a bag of groceries or other actions requiring hauling by hand. A lung disease patient almost requires similar treatment as a wheelchair parking person for such things, however most people wouldn't understand when viewing someone who doesn't look disabled externally and judgements are placed upon them in an instant. Too bad!

  • * The weather plays a huge role in the day to day for a lung disease patient. It can't be too hot, too humid, too rainy or too cold, always leaving us to seek out the best type of weather for any outdoor functions. Give a lung disease patient extra humidity or freezing cold temperatures, and it takes a few days to recover from just a few breaths of air in the stuff. Some of the medication prescribed for patients often requires they aren't subjected or allowed to be in the sun (at all!), so that leaves summer/winter umbrellas or finding the perfect shady spot to be a good thing.

  • * Stairs are a continuous challenge and my husband had to "relearn" how to climb then to make this area a successful endeavour. Using proper breathing techniques, he had to learn to rethink how he climbs one step at a time. But still, stairs in general (no matter how many there are) make him want to groan out loud knowing what awaits him once at the top of them – lack of air in his lungs to gasp normally for a single breath. No one realizes those 2,3,4,10 steps we don't bat an eyelash over could pose a severe challenge to someone until you live with someone who feels agony over having to climb them.

  • * No one realizes going for a walk becomes nonexistent any longer, semi strolling with many stops may become an option but not just for the heck of it. Business luncheons are great until a walk from a parkade or certain parking area requires a walk of any distance, and colleagues have a fast gait along the way to try to keep up with. Realistically, this are of concern becomes huge in daily living, a way of life for the most part eventually. Gasping for air under such circumstances is not the end result desired for those who suffer from lung disease, a dreaded event under any circumstance and emotions reign high when the timing of such an ordeal hits during a public event or activity, before friends and family, or just within the family home to peer over and witness the children with terror-filled eyes, obviously alarmed over their father's suffering. It takes a while for my hubby to recover, and for us to recover too.

As mere humans, new personal developments always seem to challenge us at every turn. I am but a mere spectator and cannot remove the burden from my husband's suffering. There are days when I grow weak at the knee and find it difficult to suppress crumbling emotionally. There have been many of those days lately because there is such a tremendous weight around us to think outside of that "day to day" box, and look to the future as a whole grander picture. Oh sure, day to day planning and then executing those well drawn plans is good to do, positive thinking a necessity for sure.

Being able to get back to his working career fast became a lifeline mentally. A distraction for sure, though limitations are still being discovered along the way.

During difficult moments we seek out people who can turn our minds around, people like Randy Paulaush, a life story of one of the Martyrs of the church, hearing from other sufferers who are may be worse off than most, or by seeking pastoral counsel to ease our worried minds and heavy hearts. Even if just for the moment it helps to do that.

Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need

~ Hebrews 4:16

continue to part 2....