Journal entry by Jennifer Gould —
Hi Friends! Well we’ve had a good week or two in our house. Derek is continuing to improve daily. His biopsy last week was still 1R and his labs all look great. They also started a new blood draw which is called Allomap/Allosure. Basically it allows them to use this test in place of actually doing a right heart cath for a biopsy every 2 weeks. It would be awesome to be able to avoid the heart caths. If the biopsy and allosure correlate then they will only need to biopsy once and year or if the allomap shows anything concerning. He gets a week off of clinic this week but we will head back for another biopsy and labs on Monday. He did have one tiny little antibody in a very low amount that popped up. They are not very worried but we are going to keep a close eye on it. For that reason we will have to have a biopsy and not just allomap this coming week. If it does increase it would mean we would just adjust one of his anti rejection meds. So, many prayers that this is nothing and all stays stable would be very much appreciated!
Derek FINALLY got an appointment with Neurology too. It’s been an absolute nightmare trying to get an appointment with them. Both the transplant team and his surgeon have been fighting to get him in for weeks. We are very much hoping for some feedback and treatment ideas for his neuropathy in his legs and feet. There hasn’t been much improvement in that area at all. We are praying that will change. Walking and living with numb legs and feet is not fun. We have to wait until November 5, but at least we know it’s coming!
With that being said, we are super excited to say he has officially graduated from home PT, OT and nursing. They all signed off the end of last week. Even more exciting, Derek started back very part time to work today! He will be working just 2 days a week, not quite a full day. But it’s a start. He’s been working from home since he came home but this will be different. He did great today and he’s so happy to get back to just a little more normal life. We are so lucky he is able to have this flexibility with his work. He will start cardiac rehab in a few weeks and we still have lots of appointments upcoming, but it’s absolutely astounding how far he has come in just 2 months. We just need to keep going on this amazing journey. Thank you again for all the many prayers and good thoughts they are still working miracles ❤️
Love,
Jen
Patients and caregivers love hearing from you; add a comment to show your support.
Help Derek Stay Connected to Family and Friends
A $25 donation to CaringBridge powers a site like Derek's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?