Sunday, October 14, 2012

hospital update

James has a bowel obstruction. This is very common for individuals with Cystic Fibrosis. He has been having gastrointestinal symptoms (to a lesser degree) for a few weeks, but James and I didn't consider a blockage. This was often thought to be the cause of James' pre-transplant nausea and vomiting episodes, but it was never determined to be a definite cause. The transplant team attributed his symptoms to his immunosuppressants. They had  made recommendations for a medication change to a coated version of one of his immunosuppressants, and a follow up with the St. Michael's Cystic Fibrosis Gastrointestinal Clinic. We have been the in the process of seeking coverage for the medication change, and making those appointments.

James had a really good day yesterday. He was able to eat small amounts throughout the day, and visit with a really good friend. She brightened both of our days, and was exceptionally helpful with setting up the new apartment. James and I feel very grateful for her friendship. She affirmed and validated a lot of my feelings. She reminded me that there is no shame in feelings of helplessness and hopelessness. It is hard to navigate the system as James' sole support and advocate, and I often feel alone in the process. There is comfort and security in knowing that I am never alone despite those late night feelings of loneliness. I am getting better at asking for help, and allowing others to help. Our time together was a reminder that James and I surrounded by a generous support system of loving and caring friends and family members. We are very fortunate.

James was feeling very optimistic about being discharged today. We ate breakfast together this morning, and James was feeling strong enough to shower, dress, and go downstairs for a coffee. Unfortunately, James' symptoms returned shortly after lunch. He was given some Gravol, and is closing his eyes in hopes of sleep. We are still waiting to see the doctor, but James no longer feels confident that he is ready to go home. 

We hope that James will still be able to start his pre-transplant assessment as an inpatient. We are scheduled for full days of tests and appointments on Monday, Tuesday, and Wednesday. We do not want to prolong the process, and of course, James and I are both anxious to be officially listed for transplant. His lung function is relatively steady, but it is not certain that it is stable. We will have to wait a few more days to differentiate between normal variation and a continued pattern of decline. We hope for the latter and focus on everything that is within our control. James and I always manage to enjoy being together. We find laughter and joy in the worst of circumstances. It is not difficult to give each other reasons to keep smiling. We are constantly reminding each other of the strength that comes from our ever-enduring love. (I woke this morning to a loving e-mail from James in gratitude for our relationship). There is nothing that James and I can't do together.

No comments:

Post a Comment