Showing posts with label myelofibrosis. Show all posts
Showing posts with label myelofibrosis. Show all posts

Saturday, September 13, 2008

Pneumonia Kills - My dad

My father died of pneumonia.

He was 80. He refused further treatment for myelofibrosis, a disorder of the bone marrow where stem cells, responsible for creating new blood cells, both red and white, are replaced by scar tissue. He received an infusion of packed red cells in the spring when he was diagnosed. In July, he thought he was dying. Daughter C and I hastily made arrangements to visit him.

No one had bothered to tell him that the life span of the red blood cells he'd received in the spring was four months or a little less. Since his bone marrow was not making any new red cells, what he was experiencing was the effects of rapidly falling numbers of red cells. He received another infusion, this time of whole blood. His condition improved, but he did not like the discomforts as his body dealt with the extra fluid along with the red cells this time.

We had a wonderful visit. He was in good spirits, and glad to see us, but it was subtly acknowledged this was likely our last time together. We took a number of pictures, many showing Dad in his PJs. He didn't have much energy, and refused to waste it on inconsequentials. We chatted and told stories, laughed and hugged a lot.

Dad didn't have much appetite, so he lost quite a bit of weight. His false teeth did not fit comfortably, so he had difficulty eating normal meals. Mother tried to create blended shakes with inviting flavors, without much luck. I'd acquired a trial pack of assorted flavors of nutrient powder mix, and promised to send it once I reached home. I also promised to send the little baby food grinder I'd used with my kids to introduce them to the delights of adult foods. I thought it might make his favorite meats and veggies easier to manage.

Daughter and I went back home.

The nutrient powder stuff was something he tasted once, held his nose and gulped the rest of the serving, and refused to sample any more. The little food grinder helped some, but Dad's interest in any food at all continued to dwindle.

My dad had an aversion to the idea that he might end up in the hospital, with tubing in all orifices, body kept going by machines, but no conciousness within. He preferred to die at home. He decided he would have no more treatments. He decided he would not go to the hospital, anymore, for anything. He and Mother discussed it all, and she supported him.

We talked on the phone over the next month, more, I think, than we had in the preceding year. I lent Mom what support I could from a distance.

The day my Aunt called to say Dad had been transported to the hospital by the emergency squad, I knew. I did not want to believe. I did not want to say it, but I knew my father was dead. I prepared to travel again, flew the very next day to be with my mother.

She told me about his last morning, how he had a 'bit of a cold' and was talking, at intervals, to people who were not there. He seemed fine when she checked on him before going out to the mail box to get the day's mail. He was dead when she returned.

We dealt with the funeral, and assorted necessary errands, together, mother and I. We talked about what she wanted for the end of her life. I promised to honor her wishes to the best of my ability when the time came.

We buried Dad in the family plot along with his parents and grandparents.