I know it has been awhile since I last posted, but often times no news is good news, and that is the case here. Carrie and I have enjoyed a relaxing month together. I have been continuing to exercise (walking, biking, weights), I’ve been pushing some of my limits by doing more around the house and yard, and we have been able to get away for a couple short holidays. It has been a good month.
 
Picking up where I left off in my last post, in mid-August I repeated a number of the pre-transplant workup tests that I had originally done back at the end of May. The difference between the two was quite obvious. I am back to my baseline weight (maybe even a kg over it), and my lung function and exercise tolerance has continued to improve week by week. My lungs are nowhere near their original baseline, but they are also nowhere near where they were when I was discharged from hospital.
 
Throughout July and August, Carrie and I have been going to transplant clinic once a month. We were their yesterday, and it turned out to be quite the visit. My doctor basically outlined that unless my lung function begins declining, or unless I get an infection again, we are no longer going to talk about re-transplant! I have been taken off the re-transplant “radar” and have been told to go and live my life and we’ll just see where things go.
 
This is amazing and humbling news. I won’t lie, this is secretly what we were hoping for, but to actually hear it from my doctor is quite another thing. This doesn’t mean I can just return to life as it was before I got sick, but it means we can continue living into this new normal that we have created over the summer without the immediate cloud of transplant hanging over us.
 
The transplant doctor that Carrie and I saw yesterday is one of two doctors who has been part of my transplant story since the very beginning. He said that in all the years he has been working with transplant patients, my case over the last half year ranks up there as one of the most unique cases he has seen. Going from being intubated with acute rejection in May, being told in June that it would be a matter of weeks until I would be waitlisted for re-transplant, and now recovering enough that there is no time frame for when we will need to talk about this again is quite a unique thing. It is a miracle.
 
He did reiterate that I am not out of the woods. I still have a lot of scar tissue in my lungs, and there is that pesky infection sitting dormant down there still, but it does seem we have been given the green light to stop “waiting to be waitlisted” and instead learn how to live life with my lungs in their new state.
 
If there is one thing that Carrie and I feel right now, it is gratitude. Gratitude for this miracle journey of recovery I have been on; gratitude for all your prayers, thoughts, support, and well wishes. Life is still delicate, my lungs are still fragile, but we have to seize these moments of gratitude and joy when we can. 

​I realize it has been awhile since last posting - the truth is that there just hasn’t been that much new to update on. Things have been cruising along for the past couple weeks. Carrie and I were able to get away for a couple days last week, which was very nice. I continue to go for daily walks and add in some strength training where I can. Protein and healthy weight gain are still the name of the game when it comes to my diet. My breathing tests continue to inch up ever so slightly from week to week, with two weeks ago seeing a pretty significant jump. At the end of July, I recorded at 10% increase in my lung function from the beginning of the month, so that was pretty awesome, and I am only 5 pounds off from my original weight from before I got sick. (I had lost 25 pounds in April and May).
 
In spite of these gains over the past month, I will still need a transplant, but I am still not waitlisted yet.  The doctors are pretty much taking it week to week. This week I am repeating some of the original tests I did back in May during my pre-transplant work up. I have made so much unexpected progress that the doctors are wanting more recent data in order to make their decisions about when to waitlist, and then the ultimate decisions around my eventual transplant.  
 
So, we continue to live and to wait, just taking life week to week. We try not to think too much about the future, but to live in the present, thinking about what needs to be done today to make the most of this time.  
 

​Like any one who is struggling with some health issues, life begins to take shape around a new kind of cadence––that of tests, waiting for results, and doctor’s appointments.
 
The last two weeks have seen that rhythm repeated a number of times. The beginning of the month began with a CT scan, then waiting for the results from that and the inevitable appointment with a doctor to discuss said results. Adjustments were made to my meds, and then we waited another week for a follow up appointment from another doctor to go over those changes and review any further results. Then the wait was on for my bronchoscopy, which happened this past Monday. And now we wait for the microbes and all the stuff that could be growing in my lungs to grow out in a lab somewhere, and then in short order we will have another appointment to review those results.
 
I am not complaining, it is just always amazing how being sick can keep one so busy.
 
So, what are the result of these most recent tests? Unfortunately, it appears that the two infections that my body was fighting, and which seemed to have caused my acute rejection, are still down there in my lungs. My doctors were hoping that the long course of medications I was on from April to June would have killed them off, but it appears we fell short. From what I understand, the infections are not totally active doing damage, but they do pose a threat. I’ve therefore been restarted on some of the meds I was recently taken off of.
 
Overall, I am still feeling good. My weight has plateaued as I am more active now, my energy is up and I feel I am still gaining muscle.
 
Carrie and I find the disparity between how I’m feeling and the state of my lungs to be quite interesting. Because I am feeling well, we kind of allow ourselves to think that my lungs must also be improving, but when we get test results back and speak to the doctors it is still mostly a litany of bad news and confirmation that these lungs are shot.
 
We are incredibly grateful for how I feel, and the doctors see it as very good that I am feeling well and gaining strength, as they want me at my strongest going into transplant.  Once again, thank you for all your support and prayers during this journey. We feel your love, and we know that in all of this we are resting in the hands of God.  

Last week was another good week with continued progress made. Slowly packing the weight on, although still another 10-15 pounds short of where I was before I started getting sick; and slowly gaining some muscle back in my legs and upper body.
 
The highlight of the week was getting back on the bike and going for two bike rides. It felt good to be able to cover some distance, and to be able to get around and see nature without the hum and puff of my oxygen concentrator.
 
The main event of the week, however, was our transplant clinic visit and CT scan on Thursday. I forget if I mentioned it before, but back in April it was discovered that I had a 4cm hole/cavity in the middle of my right lung. This was caused by an infection and obviously gave us and the doctors quite the scare. The team has been monitoring it closely by way of CT scans and Thursday’s scan showed that the hole has significantly reduced in size. It won’t be viable lung tissue, but at least it is closing up and doesn’t pose as great a risk as it once did.
 
The doctors feel I am in a good position to continue on at home, just doing what I have been doing. They are not putting me on the waitlist yet, but we did talk about the timeline a bit more, trying to nail down what the right timing for being waitlisted will look like.
Even though I am feeling stronger and my body is getting more efficient with its oxygen use, my breathing tests did drop a bit in the last two weeks. This will probably be par-for-the-course going forward. My doctors don’t expect a sudden drop in my lung function, like what happened in May, but more of a consistent gradual decline (barring any infection of course).
 
The conclusion of the matter is that though I am feeling well and getting stronger, we are still firmly on the road towards another transplant. We are incredibly grateful for each day that I am feeling well and able to be at home. If I am able to remain stable I don’t need to go back to clinic until the end of the month, which in itself is also an encouraging sign from the transplant team.
 
 

This has been another good week, so there is not a lot to update. I am still making slow progress in the right direction. Putting on a little bit of weight each day, building a bit more muscle as we keep pushing our daily walks a little bit more. I am able to walk just over 30 minutes at a time, on 5 liters of oxygen. My doctors don’t really care about how much oxygen I use while exercising, as long as I am pushing myself and keeping my heartrate up. It’s not so much about the lungs anymore as it is about conditioning the rest of my body.
 
I have not talked to any doctors this week, so no news there, but later next week I have another appointment at the transplant clinic. I went to a Pulmonary Rehab appointment yesterday and they were pleasantly surprised with the progress I have made.
 
It has almost been a month now that I have been home, which is longer than I thought I would have. I was discharged on May 30th and back then we were hoping I would be able to stay home for two, maybe three weeks. But here we are 4 weeks out and still feeling relatively well.
 
These next seven days are going to be interesting. Over the next week I will be finishing up all the meds that were started while in hospital. I have already been off one of them for about two weeks, and so far so good. I will stop one more over the weekend, and a third, the most important one, will be peeled off at the end of next week. This will be a critical time period to see if any infection comes roaring back, or to see if my immune system wakes up and begins attacking (rejecting) my lungs again. This is kind of what my doctors expect to happen (hence the reason I am ready to be placed on the waitlist at a moment’s notice). There is the outside chance that I keep poking along at this level, flying under the radar for a period of time until that other shoe decides to drop, we will just need to wait and see.
 
Whatever happens in the next seven to ten days, we are very thankful for these past four weeks at home, and the weight and strength I have been able to gain during this time. While in hospital, I never thought I’d be able to get off supplementary oxygen the way I have (I only need to use it while exercising).
 
Again, we appreciate all your prayers and support in all the different ways it comes in. This next week is going to be pretty delicate as we watch and wait to see how my body reacts to coming off these extra meds, but we will just need to take it day by day.

(note, though this is posted on June 20th, it was written on the evening on June 18th, the anniversary of my transplant)
 
Today felt like the whole spectrum of time––past, present, future––came to roost in one day. It was a day to honour and reflect on the past, a day demanding itself be to intensely present, and it was a day asking to try and discern the future.  It has been stretching.
 
The Past:
It was 14 years ago today, June 18th, that I received my double lung transplant. If my lungs were a person who just so happened to be born on the day of my transplant, they would be graduating middle school this week (congratulations Hailey!). 14 years is a long time, and when I am able to reflect on these past 14 years––blocking out the cloud that now hangs over life––I am so incredibly proud of my lungs. They have allowed me to accomplish things that I never thought possible. Physical feats like biking from the coast all the way to Alberta (twice!). They breathed me through attaining a master’s degree and becoming an ordained pastor. They gave me the calm and ability to care for Kim, my late wife, in her journey with cancer. They provided me the strength to return to our family business, to work alongside my dad, mom and cousin and become the strongest I have ever been in my life, feeling the healthiest I ever have. And over the past year they have oxygenated me to once again find the most amazing joy and hope in being able to fall in love and marry my wife, Carrie.
 
My donor of course will never know what they have done for me, how their lungs have kept functioning and living, have kept giving. My donor has now been gone for 14 years - something that Carrie and I also reflected on––praying for their family and the grief they may still be experiencing. But as always, I do hope I have been able to make my donor proud in the life I have lived these past 14 years. I am incredibly proud of my lungs and the strength and resiliency they have shown. But above all, I am so thankful––thankful to my lungs; thankful to my donor. 14 years isn’t a lifetime, but a lot of life can be lived in that time, and I have tried to make the most of mine.
 
 
The Present:
The second demand of the day has been the present day and the present health situation I find myself in. As proud as I am of my lungs, I also can’t take more than a couple steps without being reminded that my partnership with these lungs is coming to an end. These lungs inside my body are not what they were just a couple months ago, and I have only my own body to blame for that. The immune system is one of the most wonderful things in life, a true gift of God keeping us healthy despite all the crazy micro-things that we come across every single day which could easily kill us without it. Unfortunately for me, it is this most amazingly innate thing of an immune system that is now trying to kill me, by trying to kill my donor lungs. Ironic isn’t it.
 
And so, as I reflect on the past, I am also pulled into the present. I had transplant clinic today of all days, so there was a lot of focusing on the current state of my health. I had bloodwork which for the most part is fine. I had an x-ray which the doctor said looked good, but can’t draw any conclusions other than that it is not worse than the previous one (something to be thankful for). And I did my pulmonary function test which was very confusing because there is no way anyone would consider being transplanted with the fair numbers that I blew, but like everything, it is a lot more nuanced and complicated when you actually talk about oxygen exchange in your lungs (the thing that actually keeps you living) as opposed to the airway efficiency and capacity.
 
Usually today, my transplantiversary, is spent reflecting on the past, remembering my donor, but today my time has had to be split. There has also been the demand to focus on today, the information gathered, trying to explain to my nurse and doctor how the last three weeks have been at home, how much I am exercising, how much oxygen I am using, how much I am eating and the wildly out of control blood sugars I’m experiencing due to my dietary uptick and shifting Prednisone levels. Plus, like every day, which is a focused primary on the present, trying to measure if and how today is different from yesterday and last week and two weeks ago. Carrie is much better than I in seeing this, so I mainly defer to her to spot and point out the differences, which I am thankful to say are all still positive.
 
The Future:
The third demand of the day was trying to discern the future. This goes hand in hand with my clinic visit. Thinking about the future - meaning the necessity (barring a miracle, which I do believe in) of needing a double lung transplant - isn’t something I actually think a lot about. Usually I am too busy with just focusing on the present. But when your transplant doctor leans over the side of the table in front of you, looks you in the eye and asks if YOU think it’s time to be waitlisted, if YOU want to be waitlisted now, it really catapults you forward into a very unknown time.
 
Now of course my doctor was not forcing the question on me, he was wanting to see my reaction, wanting to know if I had strong feelings one way or the other––if I could feel it in my body what I was needing. He wanted to know if I felt I was still getting healthier, if I felt my body needed more time to heal and get stronger, or if I felt this was already taking too long and I needed new lungs ASAP. He trusted me and wanted to know my opinion. Before tipping his medical hand, he wanted to see my intuitive hand. In the end we both agreed that we would wait for now in terms of being waitlisted. We would give the unknown future some more time to unfold. He assured me I could be waitlisted at any time if things begin to slip, but I am still making marginal improvements each day, and he wants to see me get strong before undergoing such an invasive surgery.
 
So yeah, a lot going on today. A lot of thinking, remembering, discerning. A lot of compartmentalizing––past, present, future––but also seeing how all three of these time frames are connected in the uninterrupted spectrum of time, that my donor lungs of the last 14 years have brought me into another beautiful day to be thankful for, and that they might still have a little more left in them to give.
 
These lungs that I have been given have been absolute work horses. Time and time again they have risen to the occasion no matter what I have asked of them, often outperforming my wildest imagination. So today we decided to try give them a couple more weeks. Through graphs and numbers and pictures, through intuition and experience, we are able to see that even though their days are most likely numbered, they are still working harder and better than anyone thought they would. That even in their waning breathes, they are still giving me the gift of life, trying to set me up as well as possible for whatever is to come next.
 

I meant to update earlier in the week, but even when functioning at the most basic levels of life, the days just seem to slip away.
 
I am still at home and things are still on the upswing. I am slowly gaining back some weight, slowly gaining back some muscle and endurance, and this week some of my oxygen dependency has been coming down. So much so that I can slowly walk around the house and yard without the need of supplemental oxygen.
 
But life is obviously very limited. We are just focusing on the basics of getting stronger and trying to stay healthy. Eating lots of protein-rich food, trying to move around and ever so slightly increase my exercise tolerance, and then spending a lot of time resting.
 
Carrie and I do get out most days, either to see our parents, buy me some new clothes (I am swimming in all my regular jeans), or of course getting bloodwork or going to other appointments.
 
Just to reiterate from my last blog post, I am NOT on the transplant waitlist yet. My pre-transplant tests are all done, I COULD be waitlisted whenever needed (meaning whenever I start going downhill again), but as long as I am still getting stronger and maintaining, my doctors are just going to see how things go and how strong I can get.
 
If you’ve had to deal with serious health challenges before, you will know that treating them is sometimes more of an art than a science. We know the destination we want to get to, we know the direction we will need to go, but the timing of each step, where each foot is going to be placed and the different valleys and mountains we will encounter to get there, are all mostly still shrouded in fog, until they are right upon us.  
 
The next couple weeks will be interesting as a lot of the meds that I am on, which have been used to treat the infections I’ve been battling, plus the rejection, will slowly be peeled off and stopped (one can’t live on this stuff forever). This will be a very telling time to see how my immune system responds, and how that might affect the timing of things going forward.
 
Once again, we appreciate your patience with the gaps in time between some updates and the gaps in some complicated medical detail. We value all of your support, well-wishes and prayers. We would not be doing as well as we are without the support of you, our community.
 
In Peace.
George and Carrie.

I hope I still know how to do this blog thing - I see that it has been awhile since I have done this. Well, we may as well just jump back into this and let’s rip the band aid off.
 
As many of you may know, or may have wondered about, life has changed a lot for me (and my wife, Carrie) over the past number of months. Since March, I have been dealing with some serious health challenges. This has included three hospital admissions throughout the spring, with the final diagnosis coming in mid-May, that I am in acute organ (lung) rejection.
 
What does this mean? It means that I am going to need another double-lung transplant. It is as simple and complicated as that (I told you I was going to rip the band aid off).
 
The journey to get to this serious diagnosis has been a trying one. It’s not as if my team of transplant doctors have never seen this before, but the way this has all gone down is not very common. In addition, the road leading to this diagnosis has had many diverging and criss-crossing pathways that at times made little to no sense.  
 
Like anything, in hindsight my doctors can see the through-lines of how the rejection developed. The speed in which it developed is still a bit mindboggling - and how it started a mystery.   There is chance that I have been walking around with a dormant version of it well before first getting sick in March, and it just took a roll of bad infections for the stars to align, causing the rejection to finally show its ugly face in the past number of weeks.
 
Now that we know what we are dealing with, it has been amazing to see the transplant doctors, nurses and specialists from all over come up with a plan, put that plan into action, and within two weeks be ready to activate me on the lung transplant waitlist once again.
 
And that is the bottom line, that for the second time in my life, in order to go on living, I will once again need a life-saving double lung transplant.
 
 
Now a lot of this has probably led to more questions than answers as it has for us as well. There are a lot of things still up in the air, a lot of things that only time will tell us, but here are some quick answers to some general common questions:

• I am home from hospital, and I am using some supplementary oxygen to get around.

 

• I am not on the transplant waitlist yet, but my pre-transplant workup is all done and I could be activated on the waitlist anytime if needed.

 

• In terms of when I could be waitlisted, the best measure of time is most likely weeks or a month, not months or years.

 

• Will I end up back in hospital anytime soon? We are fully prepared every single day for that reality.

 
I will leave it at that for today. I will try in future blog posts to fill in a bit more of what the last couple months have actually looked like in terms of getting sick, but for now I figured this would be the easiest and quickest way to update you on what’s been going on with me.
 
Your thoughts and prayers are most welcome and always appreciated. Carrie and I have felt incredibly supported and loved by our families and close friends who have walked the last couple weeks with us as we have been processing this next chapter in our lives. We have also felt the love and support from those in our wider community, who have known that I have been struggling these last few months, but have not yet had the full picture.
 
We appreciate your patience as Carrie and I continue to work through what the present looks like, and also how the future may look. For now, we are just taking it day by day, waiting to see how the road will rise up to meet us.
 
Peace to you.
George and Carrie.

Thank You!!!
First off, I want to thank everyone who was able to come out to my book signing. I was so honoured to see so many people there, many of whom I hadn’t seen in years! It was wonderful to catch up.
 
I have pulled names for the door prizes, and the lucky winners are: 

• For the Chapters/Indigo Gift Cards: Sophie & Lisa 
• For the Ladner Village Arts and Crafts Gift Card: Shirley
•  For the signed hardcover edition of Big Breath In: Rylan

I will be in contact with you shortly. Congratulations!
 
Last week, I met with my marketing specialist, and he was amazed at how well the book is selling. He said the book is doing very well for a first-time self-published author. So, THANK YOU to everyone who has helped support the book through their purchase. When I started writing, my goal for this project was to just have a published copy of the book, something I could randomly hand out if someone had questions about CF or transplant. Never did I think it would turn into something this big.
​So again, THANK YOU!!

 For this final installment of this series on my journey with grief, I’d like to focus on two themes. Since Kim passed, I have been aware of and navigating my way through these, but they have not fit into a specific chronological time frame. So here we go.
 
Resiliency.
In the epilogue of my book, Big Breath In, which I rewrote after Kim had passed away, I said that my resiliency was “running low these days.” Well, I admit to you now, that this was, in fact, not entirely true. My resiliency is, in fact, not “running low these days,” it is actually nonexistent (I felt I had to provide some hope at the end of the book).
 
I have always prided myself on being able to function well under pressure. I’ve always been attracted to areas of leadership in crisis, being able to lead and act in a calm and reassuring way even when the present was in chaos and the future uncertain. It is what attracted me to hospital chaplaincy work and other leadership areas in which I have worked and volunteered.
 
However, as I mention at the end of my book, after living through the loss of my brother Warren, the effects of respiratory failure due to Cystic Fibrosis, waiting for and receiving a double-lung transplant, walking with and caring for Kim for the past five years, and then, of course, the grief over losing her, I admit that my resiliency has run out. I feel like I have no backing to hold me up so that when any challenge comes my way, I simply fall over. Something as simple as a machinery breakdown on the farm has had me walking away from work and simply going home (my family has become very understanding of my antics). The slightest drop in my daily lung function test has had me canceling appointments, commitments, and work for a week or two. My lack of resiliency has led me to be panicked at the slightest setback or confusion. 
 
Now, there have been moments when I've felt that a fragile wall has been built behind me, something to prop me up so that when a challenge or hardship comes my way, I can feel myself rebounding back a little. However, that doesn’t last long. If any negative pressure or challenging situation is not resolved quickly, it is game over, and I am back to my huddled position at home. It appears that the person who used to thrive in times of crisis, who prided himself on being able to take on burden after burden, is finally burnt out. 
 
I wonder if resiliency is like trust, that once broken, it takes a very long time to build back, and maybe it never truly comes back as strong as it once was. But perhaps resiliency isn’t the key either. If resiliency implies returning to the original shape, I know that is impossible. Maybe it is not resiliency I should focus on, but transformation. I know there is no returning to who I was; there can only be transformation into who is now taking shape in me. I'll have to think about that some more.