The End of a Chapter?

Once again, it’s been a few months since my last post. And once again, that’s mostly been good news. Becky hadn’t had any major issues for several months. She had some routine tests, and some not-so-routine tests, and everything came back normal. The main issue recently had been that her recovery from the shoulder surgery was quite a bit more difficult than we expected. It set her back a bit in terms of general strength and stamina, but she was getting back to the point of doing some evening walks to try to prepare for our upcoming Disney vacation. And then...

Well, before I go there, a step back. For those that have been following along at home, you may remember that Becky had been back to the ER and/or hospital for nausea, stomach, and abdominal issues several times over the past year and half. Prior to last week, she had been diagnosed with four separate small bowel obstructions (SBOs). Now, back to last week...

Becky started feeling the now familiar symptoms of an SBO once again last Tuesday. After a couple exchanges with her team at UTSW to figure out what next steps might be, she started feeling worse and the decision became easier. We were headed back to the local ER.

Once we went through all the normal steps - blood work, CT scans, etc. - there was one aspect of this episode that was slightly different. The radiologist reported that although not conclusive, there were indications that this SBO could be a “closed loop” obstruction. That raised the bar in terms of urgency because that can quickly lead to intestinal damage and related complications.

As a reminder (because I’m pretty sure I’ve mentioned this before), one of the primary causes of SBOs is scar tissue. However, we learned two new things on that front during this visit. First, it’s not likely that the transplant surgery was the primary or even a significant contributor to the scar tissue around the intestine. Her new transplant organs are not really in that area. Second, the most common cause of scar tissue in women that deal with SBOs are hysterectomy and gall bladder surgeries. Becky has had both plus a few other surgeries in her abdominal area over the years.

What did all this mean? Well, after talking through the options with the ER surgeon for almost half an hour (which I was extremely appreciative of), we decided that it was time to take the next step. Rather than continuing the typical non-invasive methods to address the SBO, we decided to go with the option of performing surgery to see if we could address the scar tissue as the root cause. Becky went into surgery somewhere around midnight, and I hung out in the very empty OR waiting room shown in the photo above.

There is a lot more to this story and decision, but I’ll go with the a short version here. The surgeon started by attempting laparoscopy, but there was so much scar tissue he could not make any progress. He ended up making a rather long incision, and spending a fair amount of time, separating scar tissue from her intestines as well addressing scar tissue around her colon and in her pelvis. Fortunately, there was not a closed loop SBO, so it was not necessary to repair or remove a section of her intestine.

The good news is that this should provide some longer term relief from the SBO problems. The bad news (there always seems to be a little bad news with the good news) is that since this was a more invasive surgery that ultimately required the surgeon to “put everything back” when he was done (his words), Becky was pretty sore afterward. It also took her system a little longer to start working again after the surgery, but we made it. After several days in the hospital, Becky is back home and back on the road to recovery so she can get back to babysitting grandkids (but without carrying them for the next six weeks).

Once again, we are thankful to those that stood beside us in prayer.

Here’s hoping this is the end of this chapter (at least for now) and that we don’t need to make any more ER trips in the near future! I don’t really need a reason to monitor the construction progress at the hospital!

One Year Transplantaversary

This will be a short post. I promise.

Today, November 28th, Thanksgiving Day, is Becky's one-year transplantaversary. I can't think of many things we could be more thankful for than the fact that she is here to celebrate it with us. We both continue to the thankful, grateful, and appreciative of all the support we've received over the last couple years. We feel blessed and thank God daily that a donor was found so that Becky could continue this journey with us.

We did have an awesome Thanksgiving dinner with all of our kids and grandkids, and all of Becky's brothers and their spouses. Her brother, Steve, and his wife, Peggy, flew in from California to join the celebration. Becky had no idea they were coming, and she was completely stunned when she answered the door and saw them there. It was a great day all around.

I also have some short updates on a few side-trips we've been travelling lately.

First, Becky has shoulder replacement surgery scheduled for December 12th. Unfortunately, this does not appear to be the solution for all of her back/shoulder/arm pain. She also recently had an MRI and has an appointment with a spine specialist at UTSW on December 3rd. We once again ask for prayers that all goes well with the upcoming appointments, surgery, and recovery.

Second, due to some ongoing short-term memory and balance/equilibrium issues that we discussed with Becky's transplant team earlier this week, she's also being referred to a neurologist to do some further evaluation. At this point, there doesn't seem to be any major concern that warrants extreme urgency, so the initial appointment is scheduled for after the first of the year. Stay tuned. The adventure continues.

Finally, as I mentioned in the previous post, I have been working on writing articles to post on the Patient Worthy website. The first article, An Unexpected Liver Transplant – Part One, which summarizes our journey from Becky's fatty liver diagnosis to her liver failure, has been posted. My second article has been submitted for review. Please feel free to share links to these articles with whoever you think might benefit or just find it interesting.

Happy Thanksgiving and Happy Transplantaversary!

Becky and Her Brothers 

Navigating the maze

As we approach Becky's one-year transplant-iversary, I really don't have much new to say about Becky's health from a transplant perspective. Her liver continues to function just as if it were her own healthy liver. The medical team is still monitoring some things related to the kidney and her white blood cell counts, but nothing too concerning. Mostly, things are quiet on the transplant front. There are a few other things that I'll mention though as we continue to navigate the (corn) maze of the recovery process.

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.