Saturday, February 2, 2013

waiting for transplant

We have been in Toronto for five months now. James has been on the transplant list for three months. He has been in the hospital since December 25th (with a single day at home on December 28th in between admissions). This is his 6th or 7th hospital admission since arriving in Toronto. We are exhausted and drained of all energy and resources.

I want to write about the process of waiting for a double-lung transplant, but I don't know that I will be able to describe the experience.

We attempt to live our lives one day at a time, and focus on living in the moment. The speed of the surrounding world becomes incomprehensible. It is impossible to describe that feeling of watching the world move around you. Our lives are on hold. We are slowed to the pace of a single moment. We live in each and every breath, and for each and every breath. Everything may feel static, but nothing is static. It can all change without a warning sign. We persevere with hope, because there is no other choice. Transplant is the only alternative. We don't allow our mind to consider the other possibilities.

There is isolation. Our world becomes smaller and smaller. We build incredible friendships within the transplant communities. This eases some of the loneliness, but it comes with its own pain. We watch dear friends struggle for breath. We pray for everyone with the knowledge that not everyone will make it.

There is fear. The future is complete with uncertainties. It is impossible to make predictions. Each and every day can bring something different. We know the progression of the disease, but it is hard to prepare for deterioration. We lie to ourselves to counter the fear. This is for survival. It is all about attitude. 

There is a longing for something different. We struggle to imagine something different. We miss our lives. We miss ourselves. We miss each other. We are brought to tears by the smallest of memories; walking side by side and hand in hand, fall asleep back to back, and so forth.

One of the hardest part of the wait is the waiting itself. It could be days, weeks, or months. We all tell ourselves that our call will come soon. We are all aware that it could be a lot longer. We have to believe that our call will come in time. We have to believe that it will be the right set of lungs. We have to believe that it will be worth all this pain and sadness.

We find a hope and faith that we don't know had existence. We persevere through the hard days (and harder days). We wait, and wait, and wait.

p.s. I promise more photographs soon. 

love.
love.
love. 

10 comments:

  1. Adena ,I wish there was some way of taking away Jame's pain,but there isn't. But you must know we are out there praying like mad for a miracle.It will come ,it has too. Stay strong and hold onto that love that you and James share xoxoxoxDonna

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    1. Thank you! You are right. All you need is love! xo.

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  2. adena, please know that random internet readers are thinking of you and wishing you both well. May you both be well. May you both be free from suffering, and filled with health.

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    1. Thank you for leaving a message. We really appreciate your thoughts and prayers. xoxo.

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  3. Adena and James
    Big Breathless Buddies Love Comin' At Ya
    Don't Duck - you'll want to catch this full on!
    xoxo

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    1. Got that rush of love. xoxo. Sending some right back to you!

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  4. Dear Adena and James,
    You are a marvelous couple and I have read all your posts
    We are waiting just to get on the list. We are coming to Toronto for the week of testing in April. I call this whole procedure "hurry up and wait." My husband, Carl, has IPF and he is getting worse. We have to keep the good thought even on the bad days. ((hugs to you both)) I will find you in April and deliver the hug in person.
    ~Susan

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    1. Thank you, Susan. We certainly understand the wait! It took James ten months to qualify the first time around (and another nine months on the waiting list). We will keep you and Carl in our thoughts and prayers. We look forward to meeting you! Thank for taking the time to comment. *hugs* (for now and until April).

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  5. Adena and James,I did not know you both for long but my heart goes out to you both.You have touched my heart in a way that it has not been touched in a long time.You will always be in my thoughts and prays,i wish you health and happiness always.---------Love June

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    1. Thank you, June. It was a pleasure to get to know you. We really appreciate your thoughts and prayers. Lots of love, Adena. xoxo.

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