Monday, October 15, 2012

assessment day one

We had an early start to day with the beginning of James' pre-transplant assessment. The first test was early in the morning at the Cardiac Radiology Lab. I could barely manage to stay awake in the waiting room. I closed my eyes to music for the first hour, and paced the halls for the remaining forty-five minutes. James emerged from the test with the same feeling of exhaustion and restlessness, but there was also a sense of relief to be moving forward with the pre-transplant process. We are closer and closer to our goal of being officially listed for transplant. We went directly to the lab for James' blood tests and ECG. We were amazed at the collection of fifteen vials. James was drained (literally), and ready for breakfast and medications. This, of course, is a positive sign towards to the direction of being discharged from the hospital.

I left him with the necessities (that is, a warm cup of tea with loads of cream and sugar, and access to the internet) and ventured across the street to collapse at home for a few hours. I'm learning to give myself permission to leave James at the hospital for the purpose of self-care. Sleep doesn't come easily with James in the hospital, and I need to listen to my body. I will not be a able to take care of James without also taking care of myself. I need an official prescription for rest and afternoon naps.

James will have more tests in the afternoon. The Pulmonary Lung Function Lab will do a series of lung function tests. We will both be interested in the results. It is very difficult to make sense of James' decrease in lung function without a simultaneous decrease in blood oxygen saturation. James' lung function is lower than pre-transplant, and James feels a strong sense of breathlessness with even slight exertion, but he still does not require oxygen. This is positive, but also perplexing, to some extent. These tests will be followed immediately by an appointment for a Bone Mineral Density Scan. At that point, I am certain James will be almost walking in his sleep.

It is a long day of being poked and prodded. It doesn't help to have to return to a hospital room rather than his own bed at home (with Ophelia curled up with us). These are exactly the days that require the warmth and comfort of loved ones. We will have to re-define intimacy to include shared hospital beds (without the tangling of cords, isolation precautions, and background of beeping machines).

James is fortunate to have been moved to a private room. We can close the door, curl up on his bed, and bring each other to laughter and tears without the fear of being disruptive to others. James has been known to belt out Meatloaf lyrics in the hospital (without the knowledge of a team of doctors outside his door). In the weeks post-transplant, I believe this impromptu karaoke was both an attempt at courtship towards myself, and a declaration of being ready for discharge. These are the moments that demonstrate James' strength (despite the difficulties ahead). There are always moments of pure delight at being alive. He is the epitome of living life to its fullest.

(On a side note, I am reminded of my Bubie. She has only been gone 8 months. She loved life to the very end. She found joy in all possible forms. We painted her toenails in the hospital, drew pictures together on paper plates, and shared afternoon tea. There was almost always laughter in the room). 

James has a deep level of acceptance for our circumstances. We will go through another long day of testing tomorrow, and again on Wednesday, and I know that James will still be smiling at the end of the day, and well into his dreams. He has taught me to do the same (or at least, I try my best). I hope that spirit never fades.

I'll be heading back to the hospital soon to share a dinner with my love. Here we are on Skype in the late afternoon:


  1. Hey where did you get your T-shirt,, I want 1,,love it. Glad finally assessment is being done, I'm back to TO next week,,will be seeing you I hope.

    1. Adena made the shirt for me using iron-on T shirt transfers!

  2. Replies
    1. It was hilarious. He was singing so loud, with the door closed, and an entire team of doctors was outside the door! Good times in the hospital . . !