Back in Dallas

Becky’s road to recovery is taking a little detour this week. After a week in a Dallas hotel and a week back at home, now we’re back at UT Southwestern in Dallas. I'll start by saying we don't think this is anything serious. The medical team is being extra cautious, so it doesn't become serious.

As I’m sure I’ve mentioned in several previous posts, Becky's been fighting nausea and related GI issues (pretty much all of them) ever since the transplant surgery. She hasn't had an appetite. Everything she does try tastes bad, or at least, not good. And even if the taste is okay, she feels full after just a couple bites. That's why she came home with the Dobhoff feeding tube to get nutrition at night.

That problem in and of itself was not a major concern or the team wouldn't have sent us home. However, over the last four weeks, this has contributed to two additional issues. First, Becky has lost 18-20 pounds in the last four weeks. Second, at least one number in her blood work seems to indicate she's not keeping all of her anti-rejection drugs in her system long enough for them to be effective. That raised the level of concern enough for them to ask us to come back to Dallas to diagnose, observe, and adjust. We've already had a couple conversations this morning about changing some medications to try to combat the nausea and get things headed in the right direction.

On a more positive note, Becky seems to be getting a little stronger every day. She's getting around the house pretty well. Her first physical therapy evaluation session in Georgetown went well. The therapist there was optimistic that she wouldn't have to use the walker for very long as therapy progresses. With a little luck we'll be back in town before her first regular therapy appointments next week.

We're Home!

It's been a long day (even longer after our appointment in Dallas was rescheduled to an hour later), but we've made it to yet another milestone. After our one-day trip to Dallas turned into 85 days, we are finally back in Georgetown! Don't assume this means everything is back to normal - or whatever normal used to be. It's not. Far from it. Very far from it. But, compared to last summer, it at least feels like we're on a trajectory of improvement rather than a downward spiral.

Our last weekend in Dallas was filled with plenty of activity. Becky took a little tumble early Saturday morning so we ended up taking a farewell tour of the UTSW Emergency Department. She’s OK, just a little sore for a few days. Other than that, I packed up the hotel room (it’s a good thing we traded my Cruze for the Durango a couple weeks ago!), and I tried to work as many logistics and order as many supplies (and groceries, and Christmas presents) as made sense so we would have most of what we needed waiting for us at home. It was mostly successful.

Our last appointment included some conversations about Becky’s general lack of appetite and changes in her taste buds. Although not the case for the majority of transplant patients, it is not uncommon or unusual for patients to go home with the Dobhoff tube. In fact, there were two other patients being trained on how to use the Dobhoff tube on the day we left Zale rehab last week. It’s not ideal for her general nutrition and health long term, but not a major concern right now. It’s something for her/us to keep working on.

I'll be busy putting things together and getting things in order this week while we work on figuring out how much self-care Becky can do at home, how much help she'll need, and where that help will come from. I'll be trying to squeeze in a few hours of work, but I'm sure it won't be one of my most productive weeks!

Physical, occupational, and speech therapy evaluations are scheduled in the next couple weeks. We'll see what those recommendations are so we can start planning those regular out-patient therapy visits. Lab work will need to be done once a week at 8:20am every Wednesday. And we'll have to make monthly trips back to Dallas (at least for a few months).

Challenges certainly remain after almost three months in a hospital (about 40 days of that in ICU), but we're glad to continue the journey from our own house in Georgetown where we can sleep in our own bed. Blog posts will likely be a little less frequent although I do intend to continue to document the journey. For those following along on Facebook, there might even be a few non-recovery related posts (if I have time). You never know.

Thank you to our kids and grandkids for keeping our house in one piece and taking care of Spicy (our cat) while we were away!

Thank you to the girls for cleaning house this past weekend!

Thank you to Hayley (with help from a few adults) for decorating the tree so it would be up when we got home!

Love you all! It's great to be home!

Happy Discharge Day!

Well, we’ve made it to another milestone. Becky’s been released from rehab. I have to say, this day and the days leading up to this have come with as much stress as there has been at almost any other stage of this journey. It’s a lot. We are not simply returning to normal. We are just marking the point of starting another stage - one that may be harder in some ways because we’re not just sitting back while Becky’s being taken care of. We are now responsible for a whole list of new things that we haven’t been responsible before.

Unfortunately, we’re not headed back to Georgetown yet. The transplant team wants us to hang around Dallas for another week or so to make sure we have all the things and all the knowledge we need during this stage, and that there are no medical surprises without 24 hour nursing care. Looks like that will also mean a week without any therapy while we’re in the hotel in Dallas but we may have a few appointments to go to so that may be our therapy for the next week or so.

We’re expecting plenty of therapy once we get back to Georgetown. Becky will have out-patient therapy but we don’t have a specific schedule or location just yet. Since I will likely need to start spending time going into the office for work in the near future, we may need to enlist some help for getting Becky to those appointments. Worst case, we may need to hire a caregiver to help us transition. We’ll see how things play out. It’s hard to not plan ahead, but it’s hard to plan ahead with so many unknowns.

Becky still has a feeding tube since her appetite hasn’t decided to return. That means she’ll be getting her nutrition and most of her medications via that tube. That may also be a schedule challenge depending on whether Becky is comfortable administering her own meds, and her ability to do so. We have a lot to learn. It’s all a bit overwhelming. No, check that. It’s a lot overwhelming.

Becky’s strength and her ability to be independent continue to improve, but they are small steps. She still has a fair amount of difficultly getting up from a low chair. She can walk the halls at the hospital OK, but it’s a slow process and she has to take breaks. She still has a lot of work to do to build her strength and endurance back up to where the walker and wheelchair can be donated to somebody else in need. That will be another milestone.

If all goes well, we should be back in Georgetown sometime in the next week or so. We continue to be humbled by all that are following our story, thankful for all the medical professionals, and appreciative of all the support. We also continue to ask for prayers as we figure out how to navigate the logistics of this next phase - especially in light of the fact that it looks like my employer is running out of remote work tasks for me.

We’re looking forward to seeing some of you in the near future!

P.S. It’s a good thing I wrote most of this as a draft over the weekend, because today was incredibly busy and we didn’t get to the hotel after 7:00 tonight!

Navigating the tunnel

The road trip/journey analogy seems to be working well, so I’m going to stick with it. And since the psychiatrist has used the tunnel imagery during her last two visits, I thought I’d use that same mental picture for this update. Facts up front and some reflection at the end.

Sometimes as we’re marching along from day to day it feels like the journey will be endless. However, when we look closer, we can find small improvements almost every day.

• Becky’s overall health is so much better than it was one month ago, two months ago, or even in September/October of last year when we were in and out of Emergency Rooms and hospitals.
• Although it’s not 100% certain yet, the rehab team feels like Becky is on schedule to be released from in-patient rehab next Tuesday (1/16) at the tail end of a winter cold front/storm.
• Becky continues to make incremental steps in regaining strength. She’s still a long way from normal, but moving forward.

As of today, once Becky’s released from in-patient rehab, the transplant team wants us to hang around Dallas for another week just to make sure no issues pop up once she’s no longer under 24 hour medical care.

We still have a lot to learn about what daily life will look like once we leave rehab, and then leave Dallas. New meds. New routines. Lots of blood work (which should taper off over time). Out-patient therapy. Trips back to Dallas. How much assistance Becky will need. This will not be the end of the journey. This will be turning another corner in the current tunnel.

The UT Southwestern psychiatrist used the tunnel analogy because like when you’re driving through a long tunnel, it’s hard for us to see changes from day-to-day as we navigate this part of the journey. All we see is the road or the tunnel, and we’re not even sure we see the light at the end. It seems a long way off. She advised that we need to trust those around us that have been here before. There is a light, and as long as we keep moving forward we’ll eventually emerge. Life won’t return to normal overnight, but with some work, we’ll get there.

So there you have it. We’re in a tunnel. Frankly, some days feel pretty dark and we’re not sure which way to turn, but we have to trust the medical team and continue to have faith that as long as we keep moving forward, we will emerge. We’ll be stronger than before, spending time with the grandkids and family, and telling stories about those three months we lived in Dallas.

I’ll leave you with this … Don’t turn life’s tunnels into a cave!

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.

The plan is the plan until...

The plan is the plan until the plan changes. We had our first “Team Conference” with the rehab team today to go over Becky’s progress and determine the new plan and timeline to get her strong enough for discharge. After her first week of rehab, the team decided to move her tentative rehab discharge date from January 10th to the 16th. The team uses both medical and physical criteria as well as the home situation to determine when somebody is ready to take that next step.

In our case, the plan is for Becky to be independent enough to be at home alone while I return to work in the office. That means she has to be strong enough to stand on her own (from the bed, the chair, or the bathroom) and walk around the house. There may be some home health care, and will likely be some out-patient therapy, but not full-time nursing care at home or as an out-patient. Zale also provides a social worker to help us coordinate whatever medical  equipment, supplies, therapy, and health care Becky will need when we get home. I’m not quite sure yet about what kinds of grab bars I might need to install or if I might make a quick trip to Georgetown to do some prep, but one hurdle at a time.

In addition to regaining enough strength to be independent, Becky’s still working on finding her appetite. She’s been battling some pretty consistent nausea the past few days and nothing tastes right to her. We’re trying a couple different medications to see if they’re more effective than what she has been taking for the nausea. So the appetite and taste issues combined with the tube down her throat are making it a challenge for her to get excited about trying to eat. I continue to hope and pray for some kind of breakthrough so she doesn’t have to go home with the feeding tube.

In the meantime, here’s my latest view of the Dallas skyline from my new office/couch.