Saturday, February 9, 2013

lung disease at its finest

James' fever is gone, and all of his cultures have come back clear. This is a significant relief. He has even been requesting food. We are certainly on the right track. His heart rate has been slightly elevated, but not enough to be a cause for concern. Unfortunately, it is uncomfortable for James, and can lead to a sense of breathlessness. He has started an anti-anxiety medication to hopefully help with the fears that are associated with difficulties breathing. 

It is hard to convey in words the realities of James' struggle to breathe. Everything has become difficult for him. He has lost a lot of his independence to lung disease. He cannot stand long enough to brush his teeth or wash his face. He cannot bend down to put on socks or shoes, or even pick up items from the floor. He is afraid to shower, and even going to the bathroom is a chore. A single trip to the washroom completely exhausts him, and leaves him ready to sleep for hours. I bought him ear plugs to help him cope with the volume in the hospital, but the sound of his own breathing scared him. This is the reason that I couldn't sleep at night. I would wake to check on him, and look for the rise and fall of his chest. There is no peacefulness to his sleep.

I watch the progression of his disease with helplessness. James rarely complains, and is always open and honest about his fears, as well as his strength and hope. Sensitivity can make it hard to cope, but James embraces this part of himself. He feels the full intensity of his emotions, and this includes the positive feelings of gratitude, and a deep understanding of the value of life. He will never be done fighting. He loves being in this world, and all the coughing and wheezing in the world will never change that attitude, and a resolve to truly be alive. It is a lesson for the rest of us. It is about shifting perspectives and values. 

What are the real priorities in your life? Are you truly living? We all try to live without taking our world for granted, but it can be hard to do on a daily basis. James and I have no choice. We live in within a precarious balance. Our world is ripe with unpredictabilities and uncertainties. His relative stability of health is completely a function of his level of sickness. That is, at least in definition, but also in feeling, I believe. Everything seems to be determined by the extent of his illness (on any given day, or in any given moment). This is also in respect to his place on the transplant list. It is all dependent on a balance between "sick enough" and "too sick" for transplant. We don't want him to deteriorate further, or be listed as "rapidly deteriorating", but it is also painful to imagine this life for months on end, in wait of a single phone call.


  1. Hi Adena & James, I'm a friend of Jessica's from NS and have been following your blog for a while. What you guys are all going through, I can't even imagine, and I wonder if I would be as strong myself if I am ever in your shoes. I, as well as my younger brother, have CF and so far health has been on our side. You & I don't know each other, but I think of you and James often and keep you in my prayers. I try hard to not take for granted my health and life, and to do my daily "self maintenance" with gladness, because none of us know if things will always be this great. Tell James there are lots of us thinking of him. I don't know what else to say, I just wanted to say SOMETHING to let you know we are following your ups & downs, and hoping for good things.
    Laura Beck Patton

  2. Good evening James and Adena ,your story James is so strong.I'm not sure that there are that many people out there this sick and are fighting as hard as you are.I pray for you and think of you both every day.The love you have will keep you strong. I pray that James gets his miracle very soon. May the arms of God surround and keep you strong through this journey you are both on together.There are so many people praying for you.xoxoxoDonna

  3. Hi James and Adena it is scary reading how James is functioning now. I am reliving my life pre tx reading James story. That is exactly where I was pre tx. I lost all independence as well which was the hardest on me, I felt useless and a bother. Like James going to the bathroom was a chore, I say I must have best kidneys ever now because I would hold it just so I didn't have to get up to go. I had to buy a bath seat, showers would take my breath away and sitting in tub I would have probs standing up to get out. Tim would have to bathe me, help dry me off and dress me. I could not bend over as well. The Treadmill room, I did continue to go, but many days left without completing, bike and treadmill was down to 5 mins. Leg exercises I did no more, I would start crying because I could feel and see myself go down hill and it was scary. But James you can make it, I did. Just continue the fight, get mad, cry and scream, show your disease that you will win this battle with all that it takes. Praying you get your call very soon.

  4. A&J - this is the best news we've had in a month - Yippee to clear cultures!
    You have come to this point thru sheer determination James, your body has been working against you and you may not have literally stood up to it, but your mental fortitude is truly inspiring! It gives me a rush of excitement to see you cross the threshold of The Treadmill Room - I know the effort you've expended just to get there...and then you get to work. Even when you don't feel like it. When lesser men would cave, give up, shut down, continue to roll your shoulders back, raise your chin up and power on. Know that we notice...we cheer for you...stand by you...we send you loving hugs to comfort and calm in moments of distress - not like Adena can, but in our own way.
    As this disease wraps its cruel tentacles about your body, do not let it squeeze from you the tenacity, the spirit and the humour you have shown us as you excel within the limitations it allows you.
    Hero Hugs to you both,

  5. Hello Adena and James. Adena, you don't know me, but my husband (Paul) had a double lung transplant in Toronto within weeks of James' transplant in 2011. James, I met you briefly in the clinic waiting room at TGH. Reading this blog instantly transports me back to the intense struggles of pre-transplant, and it floods me with overwhelming empathy and compassion for what you are both going through now. Adena, I totally understand when you speak of the incredible helplessness you feel watching your husband's health slipping while simultaneously doing everything in your power to keep him as well as possible. I just want to say please take care of yourself as well. Let yourself take some time to express the full rawness of all of the many emotions you experience. It sounds like you have a lot of wonderful support surrounding you, just like I did, but let me know if you need to talk to someone who has been in your place. I know I am a stranger, but I believe our mutual experience forms an instant connection. Miracles are possible. Paul and I have been, and will continue to send our prayers to you both.

    Sandra (

  6. You will always benefit from having a health check. They can bring up a lot of different things that you probably never even knew about. They can detect if you have cancer or a lung disease before you even have any symptoms.