Some Stability, Limited Progress

Our time with Joy was limited to about fifteen minutes total today due in part to an emergency incident in the room beside her. More about that later.

Joy walked only once today and it was cut rather short due to being lightheaded and the peak of activity for the above mentioned incident. She received some additional pain medication after that walk along with an increase in oxygen to 6 lpm which is the most she has ever received (to the best of my memory) since she began supplemental O2 over a year ago. Her breathing is somewhat irregular at times but I do not know what that means at this time. During our brief time with her, she often asks that we talk and she will listen. Her speech is OK but her sentences are rather short staccato like and usually cut short to catch her breath. I talked with the social worker who is on the Transplant Team today along with two nurse "buddies" that we know and each of them provided me with essentially the same story......................."her progress is about what they generally see and nothing jumps out right now to cause grave concerns". Concerns? Yes, but not necessarily real serious at this time.

Without going back in my earlier updates, I believe I mentioned new friends that we met through the various support groups and Claude is the patient and his wife is Helen. Joy knows Claude a little better than his wife and I know his wife better than Joy. He had the same diagnosis (IPF) as Joy and both were given the same prognosis, about a year to live. Claude has had three previous dry runs and just a few hours after returning home from the last dry run, he was called back Friday afternoon. I shared in their excitement by meeting them in the Admission area and later talked with them while they were in a room waiting to hear if it was a go or another dry run. Finally after several hours, Helen told me it was a "go" and I visited with them again. He was still excited and very optimistic. Before leaving last evening while Claude was in surgery, I visited with Helen and reminded her how smooth Joy's surgery went, how long it took etc. and she too, remained positive but filled with anxiety as you would expect. I could not wait to see her this morning to hear the good news! I met Helen only to hear the words "Wayne, they do not expect Claude to survive the morning". His surgery was about fifteen hours and required fifty (yes 50) units of blood. Apparently he had a bacteria in his body that could not be detected which was the root cause of the bleeding but exacerbated due to extra work the surgeons had to do to the chest cavity. Once the new lungs were transplanted he was moved to Acute Care in the room next to Joy. These rooms are small but about twelve people worked on him constantly including performing additional surgery in that very room.

At about noon today, Claude died.

Hope to despair in a few fleeting hours. I believe this was the toughest, emotionally draining day I have ever experienced. We lost a new friend with a common bond, grieved with Helen and deep down, I know it could just as easily been Joy. He has experienced the same pre-transplant testing that Joy did and was otherwise healthy, exercised and active. He was willing to gamble knowing the odds but it did not work to his favor here on earth.

Joy is alert enough to know what happened and although we didn't talk about it much, I am sure this generates thoughts in her mind.

So, we move forward hoping Joy can improve enough to become more mobile and gain more strength and become less dependable on O2. Feeding tube process seems to be going OK and I believe some of the pain issues may be alleviated once some of the drainage tubes are removed especially in her back. These tubes are about an inch in diameter and are threaded between the ribs and into the lung cavity.

A long day comes to an end. Claude, rest in peace.