Another mile marker

This mile marker isn’t really a major milestone for Becky. This happens to be my 50th blog post documenting Becky’s journey. I started by collecting various notes and text messages about the progression of Becky’s non-alcoholic fatty liver disease to decompensated cirrhosis and turning them into blog posts just to have a record of the journey. Then I decided to use blog posts to keep friends and family updated as we started the next leg of the journey. That leg started when a simple day trip to Dallas turned into a two month stay at the UT Southwestern hospital and in the ICU before and after Becky received a simultaneous liver and kidney transplant on 11/28/23. And now that we’ve started on the long rehab and recovery part of the journey, I’m planning to continue making blog posts throughout - for both reasons, to keep folks informed and to create a record of the journey. Ultimately I hope that sharing our experience helps others that are diagnosed with liver disease.

There are a few updates on Becky’s rehab to pass along as well.

• There were some indications that Becky might have a UTI this week. Cultures weren’t really definitive, but she’s being treated for it just in case.
• We’re starting to see a pattern where Becky’s nausea is worst after she receives medications through her Dobhoff feeding tube. Another conversation to have with the doctors.
• Due to low phosphorus levels in her blood, the doctors decided to change Becky’s tube feed formula to one that her digestive system is even less fond of, and the resulting increased nausea from that is making it even harder for her to be interested in eating.
• Before the increased nausea the last few days Becky had just started a new process of eating very small portions more frequently and had made a small amount of progress. Hopefully we can regain some momentum if we can get her stomach to settle down a bit.
• Becky had a small fall this week during physical therapy. No damage - other than maybe a little dent to her confidence.
• Despite the fall, I feel like she’s getting a little stronger each day.
• As much as she hates the tasks, speech therapy seems to be going well. Becky generally seems more herself, and her thoughts are more organized and focused.

In some ways, I feel like Becky has come a long way in a short time. In other ways, it still feels like there is so far to go. I’ve heard various nurses and doctors say that for every day in the hospital (in Becky’s case, two months) it takes 3 to 5 days of recovery/rehab to get back to where you were before being hospitalized (so, 6 to 10 months). One nurse cautioned against trying to rush the process. She’s an experienced nurse and has seen patients push too hard and even though they may go home quicker, they can end up back in the hospital or even ICU. Her advice was that slow and steady wins the race.

Finally, for those that are interested, I have updated the Prayer Requests page and added a Thank You page. Both pages should be accessible from links in the right hand column of any blog page.

The journey continues.