Becky's shoulder started giving her problems a couple months ago. It's been getting progressively worse with the pain spreading across her back and numbness down her arm into her fingers. It got to the point where she's started getting more tests done. The initial X-ray showed significant arthritis. Unfortunately, most of the medications to treat the pain from this type of joint issue are off the table because of her transplants. The first doctor suggested that a shoulder replacement may be the only way to address the pain and referred us to a surgeon. At this point we started getting the transplant team involved.
In the meantime, she saw an orthopedic surgeon. When she described the pain and also mentioned she has numbness and tingling along the back of her arm and in her fingers, he suggested we slow down a bit. He was pretty confident that the arthritis would not cause those symptoms, and his office was able to get an MRI approved to see what other nerve issues maybe be at play - in addition to the arthritis. The MRI is scheduled for next week.
The UTSW medical team would prefer Becky not have surgery until at least a year after transplant, which is only a month away. I'm not sure what the actual criteria will be, but I suspect the fact that many of her blood cell counts are outside of the normal range might be a factor. We're also waiting for a final report on whether she's still fighting the CMV virus. She has a phone call with an infectious disease doctor in a couple weeks.
At the same time, the UTSW team asked if we would be OK with seeing an orthopedic doctor there instead of being treated in Georgetown. When we said we were, they started the referral process. We had an appointment on Monday. This orthopedic doctor recommended the shoulder replacement and felt additional tests regarding nerve issues could happen in parallel. Becky had a pre-op CT scan before we left Dallas, and a tentative surgery date was set for December 12th. I say tentative because the transplant medical team has to approve, and Becky is also on a cancellation wait list which could potentially move the date up (once the transplant team approves). So, our tour of UTSW facilities and doctors continues.
Oh, in the meantime, Becky was diagnosed with a UTI over the weekend. Hopefully we caught that soon enough for it to be treated without too many extra complications.
Finally, we're starting a side-trip on our little journey. This side trip currently has a couple stops that aren't at UTSW or with doctors, but they are related Becky's liver issues and transplant. Over the last several months, we come to feel strongly that we need to be sharing Becky's story to help others in whatever small way we can.
The first stop is publishing our story on a news and information web site serving patients of rare diseases - PatientWorthy.com. In fact, Patient Worthy posts patient news and stories across a whole host of social media platforms. I submitted the first of what I plan to be three articles about our journey, and it scheduled to be published soon. I think that means I'll be able to officially claim I'm a published author.
The second stop is potentially getting involved with a patient engagement company called Snow Companies as patient advocates. It's still early in that process, but it's moving forward as they review our story to determine if and how we might get involved to help other liver disease patients.
I think that's all for now. I hope so. I need to find my way out of this maze.
