We recently got the word we had been waiting for: I am into the lung transplant program! We have an appointment next week with one of the surgeons where we will complete some paperwork and the final details required before listing... and then active waiting begins!
What will this look like?
I will begin regular physiotherapy appointments (3/week) to condition my body for the transplant and monitor my overall health. For the first month (12 sessions) I will be heading into Toronto for all of these appointments. After those 12 sessions I will be able to complete 2 of the 3 appointments per week in a nearby clinic (Guelph or Kitchener). This physio will continue until transplant and then begin again after discharge from the hospital. I will also have regular appointments with other members of the transplant team which they will try to coordinate on my physio days. These appointments have the similar purpose of monitoring all aspects of my health and well-being as we wait.
Timeline
There is no way to say for certain. The "average" is from 6-12 months of waiting. However, this is a very "loose" estimate given that so many variables are at play. Some people receive a call much sooner than 6 months, others can wait much longer than 12 months. So, it's a complex wait, needing to be ready at any moment, and yet treating it as a marathon, preparing for false starts and long hauls of waiting and attending my appointments.
How can you help?
I'm glad you asked! ;) We need support in many ways, from drivers to pray-ers and everything in between! You can see a starter list of roles here (and sign-up).
How am I doing with this?
As you can imagine, there's a complex mix of emotions. Upon receiving the call I felt relief and joy wash over me. Prayers had been answered! Gratitude! We live in an incredible country where this is possible and Toronto's program is one of the best in the world, top in North America! And so soon! The process of listing really is moving right along without any delays. I feel God's hand of provision and it is beautiful and overwhelming. I am excited to think about having fuller lung function, better quality of life, to be able to run and swim and play with my dog without becoming winded almost immediately. Even being able to do basic chores (change the sheets, vacuum) without lugging oxygen around and resting every minute or so will be such a delight (oh yeah... for those of you who didn't know, I really do like cleaning). Thank you God! I started crying tears of joy...
... then the second wave of emotion hit with fear, grief, resistance. I started weeping. I had a renewed realization that transplant will be a death in a way, leaving old lungs behind, and an old way of life with them. Yes, these lungs are tired and pretty used up, but they've enabled me to get this far. They are fighters, and I know them inside out. CF has taught me a physical awareness that I value deeply and it is scary to think of having to "learn" new lungs (not to mention recovery from such a major surgery). In addition, my medical routines will change. There are many current treatments that I will (hopefully) no longer need. But there are other things I will need to adopt and adjust to as I live post-transplant. And there are no guarantees that all will go smoothly (in fact it is likely there will be a rough patch of adjustment as the correct balance of meds is determined through trial and error).
So those are the two sides of the coin... and I find myself trying to balance them, embracing this opportunity as the best way forward, and still preparing for the difficulty ahead. I hope that by preparing now, we (my support team and I) can build up some resources to get us through the desert of drawn out waiting, pain, healing, and adjustment.
Prayer
Please pray for continued strength and health as I keep up with work, fight for health, and seek the fullest life day to day. Pray for Drew and my Mom especially, as they support me in this and bear much of the burden. Prayers of PRAISE for our incredible community of family and friends who have already been carrying us in this season with their caring meals, offers to help clean our house, conversations of encouragement, and so many prayers offered up.
Finally, I am praying for God's healing, and I invite you to pray this with me. I am praying that God will prepare me to receive His healing, in His way and in His time. I pray that my healing would be all about His glory, that through this process (whatever lies ahead), He would be made visible and would receive all the praise. I pray for those who are part of the healing or witnesses to it, that they would see Him and come to know Him more. I pray that this challenge would build in us even more of the character of Jesus.
I recognize that His healing can come in many ways: the routines of physio while we wait could in fact elevate my health to a point where I no longer need a transplant (and for that level of health to remain); a well-timed and "perfect fit" transplant (how incredible is it that we can recycle and reuse organs?!); miraculous and medically inexplicable restoration of my lungs (this is what I keep coming back to, knowing that our God is Creator, Healer, Restorer); and perhaps most difficult to receive, healing through death, shedding this life for eternal life. That's going to sound weird to some of you. It is weird in a world where we are so focused on what is directly in front of us or on the surface and don't consider if it might be for a bigger purpose or part of a bigger reality. I would LOVE to talk to you about this, especially if you have questions, comments, tears...
Thanks for making it to the end of this post! I am so grateful for your care and support!
- Anna
