A Village

I started this post two years ago following a CF virtual conference on transplant. Little did I know, I would receive my double lung transplant less than a month later!

At that time I already had a sense of what an incredible “village” I had around me. As things unfolded, my awareness grew regarding how much I needed this support, and how fortunate I was to have so many of you as part of my community.

Flash forward two years and, though my life looks very different, more stable, I remain grateful for the village I find myself in, including friends and family, those near, those far, those I connect with online (more now than ever because of COVID). I am still able to receive, and I enjoy being able to give from a fuller, healthier place.

It’s interesting to consider how our “villages” have been impacted by this pandemic. In some ways we have become more distant or disconnected; in other ways we have grown closer.

I know this time has led to much isolation with physical (and social) distancing. If you live on your own, it has been tough, without a doubt. For those of us who do live with people, it can still be lonely at times as we wrestle with our own experience of this time. Faults in the foundation of relationships become clearer under stress. Facing the stress of this time in general, it can be difficult and cause us to withdraw. I’m noticing that there is a movement toward appreciating this distance. At times I understand the feeling of wanting to remain home, preferring the comfort, safety, or just solitude found there. Some of this is good (learning to be with oneself and appreciating home). Some aspects lead to hiding and avoiding, a loss of engaging with the world.

The other side, however, is that even through this isolation, we are learning or remembering the need for connection. Perhaps we have become more appreciative of the people we have in our lives. The drought of connection has likely sent many to a place of craving that contact. Maybe you’ve found ways of finding this interaction through online meetings, phone calls, or physically distanced visits. It is beautiful to watch the concept and tools of connecting in our “village” grow in creativity and importance.

I think learning to accept, appreciate, and grow in community requires both isolation (or solitude) and togetherness. As we continue to navigate the complexity of this time and how it has impacted and changed relationships, let’s tune in to how the landscape has shifted in our soul. In what ways have our experience of that ever-important “village” been shaped? What has burned away? What has remained? What has died and perhaps needs to be revived? What has found new life?

Donor

I often get asked if I know anything about my donor. Up until now I knew nothing except that their lungs were healthy and a perfect fit for me! I recently received a letter from the grandmother of my donor. It was lovely and simple and it shed a bit of light on who my donor was: a man who was a joy to his grandmother (who is tender-hearted and sweet even in her grief); a willing donor who signed his donor registration on his own without pressure; a younger brother to an older brother; part of a family beyond these two members, though the details are unclear…

I cried reading the letter, and cried more afterward, thinking about who he was, who he left behind. I think of him with Jesus and ask that he would know the depth of my gratitude. I ask that his family would also know this and that it would be a light as they navigate the grief of losing him.

I wonder who else received organs from this man, who else is now linked to him, and in some ways, to me through the miracle of organ donation. I think about the gift, the poetry, the power: that even in death one life can still save several others. For me it is also a simple yet profound reminder of a deeper reality — the new life I have with these lungs is but an echo of the new life we all have through Jesus, through the infusion of His Spirit into our weary souls. Maybe you’ve experienced this new life with Him. Maybe it all seems weird to you. Either way, consider for a moment where you have received, or where you need new life today.

Erosion

I am an optimist. I always thought this meant I didn’t really wrestle with disappointment. Sure, I have faced disappointments (significant and numerous) but I believed my resilience meant there was no deep or lasting impact. My optimism led me to diminish my disappointment. I thought it was all “water under the bridge.”

Recently, in the face of some overwhelming emotions that I could not escape, I discovered a hard truth: just as water erodes under the surface, disappointment has left deep furrows carved into my soul.

This has shaken me to my core, perhaps because it is tied into my perception of who I am as a person: an optimist, forgiving, resilient, gracious… how did the landscape of my soul become so marked and altered by disappointment?

We all approach and process disappointment in unique ways, based on our personality, internal resources, and history of experiences. I am not one to avoid hard things. I tend to thrive in the hard times, actually. So when the waters of tribulation recede it’s not unusual for me to feel a little off balance, learning to embrace times of relative steadiness. I suppose I tackle things as problems to be solved and once I feel I have done that, I move forward instead of taking a deeper inventory of how things have shifted.

Emotions cannot easily be “managed.” So when I treat disappointment in this way, I think I have underestimated a huge aspect, a force of (human) nature. There is a mystery here, a hidden shaping of my soul. I am learning to respect it, to explore it. It is not pretty. And yet, it is beautiful as a reminder of how God has made us with complexity and a deep need for Him.

We are weak and do not know how to pray, so the Spirit steps in and articulates prayers for us with groaning too profound for words. Don’t you know that He who pursues and explores the human heart intimately knows the Spirit’s mind because He pleads to God for His saints to align their lives with the will of God? We are confident that God is able to orchestrate everything to work toward something good and beautiful when we love Him and accept His invitation to live according to His plan. (Romans 8:26-28, The Voice translation)

This is the point I came to, when the aching emotions were too much and words failed me. Trauma, pain, disappointment, grief… these things mark us in ways deeper than words. Having studied psychology and (briefly) explored creative therapies (art, play, and narrative), I began to realize that we cannot access all of the parts of ourselves through cognitive and linguistic avenues alone. For a problem-solving lover of language who is trying to embrace deeper creativity, this was both terrifying and exciting.

So, I have no answers, only my work cut out for me. Scratch that. There’s my problem solving creeping in. I have a theme to pay attention to as my days unfold, some clarity in my perspective, and a deep appreciation for these parts of me that will not be silent but cry out to be known and find healing.

And yes, writing this on the heels (or should it be heals? as in all the heals…) of a post about victory and letting go of striving for perfection — the irony is not lost on me. I think they are actually inextricably linked, one leading to another. When the stiff grip of perfectionism is released, there is a wild and wonderful existence to navigate. I am glad I am not alone in this wilderness. Thank you!

Let the exploration begin. (image from https://stmed.net/)

100%

100%

I never thought I would see that number as the percentage of my FEV1 (Forced Expiratory Volume in 1 second). Even at my best, I can hardly remember that number being over 60% (likely 20 years ago). Before transplant I was at 25%. But I reached 100% at 4 months post-transplant, and while I was fighting off a cold, no less!

Percentages don’t give the most accurate picture even when one has their original lungs, so litre amounts are what we focus on more. Given that my new lungs are not necessarily those of a 34 year old female (in fact, I just found out today that my donor was a male!), the predicted measure and subsequent comparisons are somewhat irrelevant. While I am trying to keep all this in mind and not to get too hung up on a number (the overall picture is much bigger and more nuanced), this is still pretty significant symbolically!

However 100% presents a challenge, especially as a perfectionist: this number can be a bit of a trap. I’ve spent much of my life thinking about how to reach this point, hoping, trying, then realizing it was likely impossible barring a miracle. Then that miracle came by way of a transplant and I have worked to get these lungs up to great functionality, aiming for this number… and now… what? What if I can’t maintain it? How will I deal with that discouragement?

How do I not rest on my laurels? Now that I’ve reached it, can I let it go and keep moving forward? Does it become just another number?

What a freeing thought! It is just a number. It is a number that signifies something wonderful, true. But beyond that it holds no power. Here lies another gift of this journey, another gift from my donor (from him). Thank you. And thank you, God, for this milestone and this freedom. I feel the clenched fists of my perfectionism loosening their grasp as the healing parts of my soul whisper reminders of something bigger and better than a number.

Waiting, preparation, and gifts!

It is my most favourite time of the year. It doesn’t have much to do with all the “Christmas-y” things, though I am a sucker for decking the halls (greenery, and candles, and lights, oh my!). For me it has really become about Advent, the season in the Church calendar that marks the beginning of the liturgical year, and is characterized by waiting, preparing, being in the “not  yet”, the mystery of things planted but not yet realized…

During this time I am reflecting on both the waiting and preparation in my own life over this last year, and the fulfillment of God's promise of healing as I transition into a season of greater hope, with a future. My journey through the lung transplant process has been exactly that. I found myself in a state of depletion and decline, with my ultimate hope and need being something miraculous: healing. Trusting, waiting, preparing (so much physio and many tests!). Hoping for healing in God's way, God's time took on a new meaning, deeper, more desperate. I clung to his promise of healing, not knowing what it would look like.

Now, three months post-lung-transplant I am amazed at how he fulfilled this promise: the perfect timing of a brilliant match, capable medical team, a relatively smooth recovery, and growing health over this season. It resonates more deeply, this season of waiting, of hoping, of deep joy at what has already been fulfilled in Christ Jesus.

As you celebrate this season, may you reflect on where and how your needs have been met; may you look for the ways that God has manifested his presence in your life. 

He is our Hope, Peace, Joy, and Love, always and in ALL ways.

  - K. Anna

This is my delightful friend who journeyed into Toronto with me many a time! Thank you, L! 

Breathing life into dry bones

Are you feeling tired, drained, maybe even hopeless over something in your life? Please take heart as you read on...

Waiting for clinic, with my new organ donation awareness pin! Quick PSA: it's as important to have the conversation with your family about your wishes, as it is to sign up to be a donor. They have final consent. Thank you donor family!

Today I was reminded of God's incredible promise to breathe new life into dry bones, and I realized how incredibly he is fulfilling this promise in my life! Wow! I am struck by this opportunity, and honoured to be a living example of this. 

 As I have been recovering and continuing with a heavy routine of physio, tests, appointments, and medications, I've maintained huge gratitude and an awareness of what God has done. And yet it's still been "close" or "small" as in something that happened to "just little old me" in my "little world". 

Then today I got a text from my wonderful boss, Graham, who is with our Church Planting Canada gathering in Alberta (that I so wish I could be attending!):

Our CPC board chairman, Brian, sharing news of the miraculous transplant and healing I'm experiencing. Praise be to Healer God!

I was struck with the bigger, the biggest picture here: God is doing this work always. He is always doing new things, breathing new life, seeking out what is dead and calling it to life. And not as life before, but into NEW life, something before unseen, unknown.

 These new lungs are extraordinary. They are far better than my last, with no chronic coughing or phlegm production, with deeper capacity, with strength I haven't felt before. While they are still very much integrating and it isn't without pain, they are such a gift. This process has opened up many opportunities to share God's goodness, to encourage others on this journey, to accept help and offer others the joy of giving. It has changed me, not just my lungs and health.

I am continually thankful to God, to my donor and his/her family, the medical teams who continue to support me, and "my people", all of you who walk with us in this new life! So much in my life has been changed, deepened, rendered more clear and beautiful during this time. I wouldn't trade it for anything. 

So what are the "dry bones" in your life, those areas where you know death is looming or has taken hold, where God is seeking to make over, not as before, but better? How are you holding on in grief or fear or control to what God is longing to restore, but first needs you to relinquish? What dryness do you need to acknowledge in order for refreshing and change, new life to flow? 

I would love to talk about it if you're willing to share!  

- K. Anna

Ocean of grace (my transplant)

Disclaimer: Due to privacy for myself and the donor family we are trying to keep the details quiet, and mostly off social media. This post is available to share, we just ask that you please be considerate in how much additional info and specifics you share, and how broadly. Feel free to reach out with any questions on this.

Dear friends, God has provided beautifully! I recently received my double lung transplant and am now walking out recovery and healing! 

There is so much that has happened over these past days, too much to capture here. However, I want to share about it as best I can for you who journey with us!

The call: We received a call one evening around 10 letting us know there was a potential pair of lungs. Wow. Here we go. What a blessing to be with Drew, receiving the news together. There was still a long process to walk out so we didn't need to come into the hospital until 8am the next morning. We called Mom, made arrangements for pets, and got very little sleep.

 The lead up: We left at 5 to avoid traffic and were there shortly after 7:15. I was told to eat breakfast before fasting (Starbucks pumpkin spice scone, fruit and cheese, and a yummy cardamom latte = spoiled). I was admitted and the lady doing the processing was so encouraging, excited for me. We then went to the unit where we were set up in the lounge for much of the day. There were many blood tests, some medications to start, and x-ray. I was fasting until 2 when we found out the surgery was scheduled for the next morning and I could eat until 8pm. Okay, so this is really happening...!? There are no guarantees, but the process moves forward as "happening" until something is a hard no... So we prepared, had hard conversations, talked of possibilities we didn't want to imagine, and were cautiously optimistic about what we hoped would be the outcome. We had conversation with people who were coming and going in the lounge, so much love, shared stories, and encouragement and some beautiful prayer (Jesus, you were all over the place!). I met with the resident surgeons before they went to get the lungs, and then I was placed in a shared room for the night, while mom and Drew stayed with family in town.

 The send off: I was able to sleep well, and my nurse woke me shortly after 5 to get me ready. She prayed over me: "Go get your lungs, girl, and keep them for a lifetime". I felt at peace, like being placed snugly in a boat and heading off on the water trusting your Guide. Drew and Mom accompanied me to just before the OR. Again God's peace surpassed my understanding and I was able to say confidently "see you later." They found their way to the surgery waiting lounge while I went into the OR. I met the main surgeon, anaesthesiologists and a couple others buzzing about the room. Within about 5 minutes I was out and had gone under knowing my God again was everywhere: working through the various people, their incredible skill, the orchestration and technology, the exact lungs, my precious donor and his/her family... I pictured floating on an ocean of God's provision and grace.

The waiting: this part really belongs to Drew and Mom because I was totally under. I want to take this time to share how incredible these two are! Drew is my rock, steady and constant. He has been an absolute gem sacrificing a lot of sleep and holding a lot of responsibility. He is fully on top of the the medical bits and pieces and advocates for me with the doctors. My Mom is my sunshine. Her presence warms me and brings me such comfort and confidence. She is totally selfless in being available and yet also giving Drew and I time for us. She is vigilant in understanding things and making note. What else I know about the waiting: our good friend Jon came to spend time with them in the waiting. Coincidentally, my roommate from the night before was also undergoing surgery simultaneously so there was some connection between her husband and my two awesome supports! By 2:30pm the surgeon came out to give the update that they were closing, the transplant had gone smoothly, and the lungs were in great shape! 

Post transplant: I was transferred to ICU around 5pm, where Drew and mom finally got to see me. I asked Drew before hand to take a photo so I could see all the connections and medical support. I am in awe of what is possible. I woke up the next day and less than 48 hours after surgery my breathing tube was out and I could start using my new lungs. It wasn't an instantaneous, profound moment; rather one of awkward discomfort, and then relief, and then the realization that I now had work to do with these new lungs! Much of my time in ICU is a blur because of medication. That was hard to have such short attention span and mental capacity. I do remember the dedication and care of the staff. And I remember the deep, simple comfort and safety of having Drew and Mom there with me; again I felt encapsulated in God's love and plan. It was a profound moment of total contentment with where I was and who was beside me.

Less than 48 hours after being brought to ICU I was able to get up and walk around a bit of the unit with the physio worker, and was moved to the "step-down" unit. There was still a lot going on, but I continued to recover here for about a day and a half. Here I was able to have several tubes removed (feeding and draining), gaining more mobility, and a better integration of pain meds. 

Now I am in regular recovery and every day I find more strength. I am on MANY medications, IV antibiotics, supplements, pain control. It is a lot to learn but my doctors and nurses are great at helping me navigate it. I also continue my inhaled medications to help keep the new lungs clear of my old bugs that live in my sinus and throat. Every day I am able to breathe with greater ease and into deeper parts of the lungs. The doctors are very encouraged and my chest x-ray results continue to improve. 

Honestly, despite all the trouble, the waiting, the pain, the frustrations of brain fog and figuring out how to communicate and advocate for myself, and just the general enormity of this... I keep coming back to how deeply content I am in the midst. I feel wholly uplifted and held by God, by his family and their prayers, by an incredible medical team, people just doing their job each day. Each of you have impacted me with your love, your words, your actions, by asking and listening, by being present. What a wild invitation we receive in this life to dive into the incredible ways of God!

Prayer:  

• Praise to God for his faithful provision, presence, and how he moves in ALL things.
• Deep peace and comfort for the donor's family. Gratitude for the life of my donor and that their lungs live on! Eternal peace and life for my donor with Jesus, fully restored!
• Gratitude for the incredible medical team and this program, for the dedicated and careful doctors, for the competent and caring nurses, for each person and part that composes such comprehensive care. 
• Praise for the incredible connections and interactions we've had on this journey; the whole new community I get to call friends.
• Continued healing as God knits everything back together, for patience in this process. Especially over the next 3 months regarding my physical pain and rest, that I would be able to stay balanced, grounded, and wise.
• For increasing health and wisdom, the ability to manage the responsibilities of living with a transplant. And that the lungs would be perfectly grafted into their new home, not rejected but embraced. 
• Prayer against discouragement as there will be unexpected things that arise. That we would take this one day at a time and be able to navigate any hurdles.
• Continued trust and dependence on God. I often find it easy to let go and embrace him in these areas or times of weakness. However once I get strong and back into things, my independence and "doer" ways flare up. 
• Ongoing prayer for those fighting Cystic Fibrosis, for research, treatments, and a cure. And in general for the health of our nation and world, for the development of beautiful health programs and knowledge like that which guided this journey, and for better accessibility!
• More deeply, for whole health in a comprehensive way, and for awareness that we all are weak or sick in different ways or different times. Drawing near to those in need or who are suffering is such a practice of faith and love, giving us a closer glimpse of Jesus.
• Lastly but not least: praise for you! For your role in my life, for your care and support, for being part of this vast ocean of God's grace. 

- Anna

Driving into Toronto, meds on the way.

Clockwise in a spiral: ICU, my rock and sunshine, a beautiful reminder on my wrist of God's love, truth, and grace prevailing through hard things... He remains, time with friends, me awake and feeling more myself, and in the centre, an image that captures my feeling of the outpouring of God's grace (photo credit: witold_ziomek)