Navigating the Speed Bumps

This seems like a good time for me to bring out one of my favorite quotes from my favorite Hobbit.

"Go back?" he thought. "No good at all! Go sideways? Impossible! Go forward? Only thing to do! On we go!"

—Bilbo Baggins        

Becky continues to find post-transplant speed bumps, or maybe they find her. Either way, we continue moving forward because it's the only thing to do. 

The two biggest speed bumps at the moment are how the immunosuppressant medications are affecting Becky's kidney, and properly treating her anemia.

Becky's primary kidney doctor at UTSW decided that the immunosuppressant medication was affecting her kidney function enough that she needed to make some adjustments. It's not that this wasn't a potential problem all along or probably even a surprise to the transplant team. Everybody's system reacts differently, and the team was trying to make sure we had tried everything else and given it enough time to decide the overall trend was headed far enough in the wrong direction before making a change.

Everything has pros and cons, and this change is no different. The new medication will supplement the current one, but allow the current one to be at a lower dose. That should help Becky's kidney. However, the new medication has its own potential side effects, some of which have already started to manifest. Time will tell if this new mix is a good alternative or if we'll have to explore something else.

On the anemia front, progress has been made, but it also came at a cost. The good news is that Texas Oncology appears to now be fully on board and ready to take full ownership for managing Becky's anemia. She had an iron infusion last month, and overall Becky seems to have a bit more energy. However, her most recent bloodwork didn't really show much of an improvement so we'll see what Texas Oncology recommends at the next appointment in a couple weeks.

The cost of not getting everybody on the same page sooner so treatments could have started earlier is that Becky does still have some moments where she feels a little "off" and sometimes a little light-headed. It's similar to low blood pressure symptoms, but we've been monitoring that and her blood pressure seems ok. She had one episode of light-headedness while in the kitchen and she fell to her knees. She banged up one knee pretty good and bruised/cracked rib(s) again as she fell backward into the pantry door frame. She's doing better now and has been able to babysit grandkids a couple days so that helps with the pain. :-)

Through it all, we're still moving forward. The road has included a fender bender, a plumbing/flooding issue (and the resulting cleanup), cataracts (and upcoming surgeries), and probably another speed bump or two I've already forgotten. But we've also been able to continue down the road. We've been able to spend time with kids and grandkids including hosting an Easter Egg hunt. Becky's brother and sister-in-law (Steve and Peggy) stayed with us for a few days while visiting from California. Becky's cousin from Oklahoma spent the night before joining all of us at Becky's annual family gathering in Cameron. And I can't leave out the fact that we've enjoyed watching the San Antonio Spurs on their playoff run!

Maybe one of the best signs that Becky is still moving forward is that fact that she's returned to the sewing room. She sewed some curtains for Elizabeth's bedroom. After that, she decided to tackle a quilt that she had started pre-transplant. She was able to finish it and I was able to deliver it to my mom in Florida. Now she's looking forward to working on some new sewing projects! Yay!

Go forward? Only thing to do! On we go!

Twists and Turns Continue

Just in case we had started to think Becky's journey was all smooth sailing and everything had returned to normal at this point, we've been reminded over the last several weeks that her journey is not the same as everybody else's. Her normal won't ever be the same as most people's normal. For now, let's just say that this year has started out with its share of twists and turns and unexpected pit stops for both of us (consider that a bit of foreshadowing).

In general, Becky's intestinal problems have been less severe than they were last year. We did make one trip to the ER for a suspected SBO (small bowel obstruction), but it more or less resolved itself with an overnight stay. She's had a couple other recent episodes where she felt like she was headed in that direction, but she managed to will herself through them avoid more ER visits.

The bigger problem so far this year has been a combination of a virus of some sort and her anemia. Becky came down with what started out as a cold in late January. She most likely picked it up somewhere along the way during our short trip to Florida. After a making the rounds to the doctors - one urgent care visit, one after hours clinic visit, and one PCP appointment - with diagnoses of a cold, bronchitis, and "coarse" sounding lungs, she eventually ended up in the ER in late February. While there, she was diagnosed with dehydration and AKI (acute kidney injury), and was admitted to spend a couple days getting IV fluids and for general observation.

After she came home, she was still fatigued. Her regular bloodwork she does for her transplant team the next week showed she was still dehydrated and still showed signs of anemia. All this on top of some kidney bloodwork numbers that still didn't look normal to me. We didn't really get all those results until a Friday afternoon a couple weeks ago. We sent several messages to doctors to determine the best next steps and by the following Monday they had suggested we head to UTSW in Dallas for an in-person appointment and that we schedule an ultrasound on Becky's kidney. That turned out to be a bit of an adventure, but we eventually coordinated it so she could get the ultrasound on the same day while we were at UTSW.

We had a good conversation with the kidney doctor during that visit. I brought up some of my own concerns about the trends of some of Becky's kidney numbers. The doctor was less concerned than I was about some of them being out of the normal ranges. She made the very valid point that "normal" ranges don't necessarily apply to a transplant patient with only one kidney. She did want to run a few more tests since we were there so she could rule out a couple other possibilities like a UTI and also check for organ rejection markers.

Within a couple days we had another set of test results. Everything looked OK. The doctor said there were no changes to Becky's medications or routine required - other than she needs to drink more water. There was no mention of rejection concerns, and no abnormal results from the ultrasound. She'll probably be back on a schedule for more frequent bloodwork for a little while just to be on the safe side.

We are still working through some things with Texas Oncology regarding Becky's anemia and bloodwork numbers related to that. She still has a fair number of days where she's tired and worn out. Texas Oncology had cancelled her March appointment because the doctor wasn't available (or something like that). It was a little unclear. We do have something on the books for April and I plan to go with her so we can make sure we both understand the situation and the plan forward.

On a more positive note, Becky has started to get back into her sewing room. She's picking up the pieces (literally) from a quilt she had started before her health degraded to the point where she couldn't continue. She had been hesitant because she just wasn't sure if she could still do it. After getting started, she's enjoying it and even said she was looking forward to getting back to sewing and quilting.

At the end of the day, we're still both extremely grateful for the transplants and the chance to continue life together - even if the road has a few more turns and pit stops than we'd like. Thanks again to all those that have supported us and been on the journey with us.

Two Years at Home

It's been a minute since my last post. Actually, it's been a little over 140,000 minutes, but who's counting? I missed making a post on the two year anniversary of Becky's transplant (11/28/23), so this more or less marks two years since she was discharged and we were able to return home from Dallas.

I suppose one of the reasons I haven't been making as many posts recently is that things have  been going fairly smoothly. It's been a reasonably smooth stretch of highway over the last few months.

Our last visit to Dallas was for Becky's two-year checkup with her primary liver doctor. This is the same doctor she saw on that initial "evaluation" visit in October of 2023. All of her most recent liver bloodwork numbers looked good. In fact, they looked so good, the next appointment is in a year!

We did talk a little about Becky's gastro problems which have been the main issue lately. Those that we see in person or get more regular text updates know that we've been making a trip to the local ER ever 6-8 weeks or so with intestinal problems that usually lead to a 2-4 day hospital stay. On the plus side, the most recent ER trip earlier this month was a "false alarm", or maybe Becky just recognized the symptoms early enough that it resolved itself without the usual hospital shenanigans. The liver doctor did have some additional advice on steps she can take to try to avoid the issue in the future. We're still working on it.

Since I'm here, I have a couple more quick updates.

Becky's anemia seems to be better. She's finally being treated for that locally. I didn't go with her to the last appointment, but the bottom line sounded OK. I think there might still be a couple questions about longer term medications and interactions that the doctor at Texas Oncology is working out.

Another plus, we did finally get her referral for osteopenia treatment to Texas Oncology as well. It's been something we've been working on for six months. I'm not sure why in this age of electronic and online everything the simple sending and receiving of a referral between organizations is so difficult. We finally solved the problem by getting a signed hardcopy of the referral from UTSW while we were in Dallas. Becky took that to her appointment at Texas Oncology and got her first treatment that day. Paperwork!

Overall, a little two years post transplant and things feel mostly normal. Becky has a few things she’s dealing with, but most of them are not really related to the transplants. Those seem to be doing fine.

As always, we are thankful for those that helped us through this journey, no matter what form that help took. We’re grateful for every year and hope to ring in many more together.

Happy 2026!

Our Disney Adventure

Warning: This is a rather lengthy post. :-)

Some of you may already know this, but it had been one of Becky’s goals for several years, prior to liver disease and transplant issues, to take a family vacation to Disney World - one that included all the kids and grandkids. As we approached her one-year transplant anniversary last November, Becky was adamant that she wanted to schedule it for sooner rather than later. In an attempt to avoid some of the largest crowds, we decided as a family to shoot for October of this year. And so, the wheels were set in motion. We picked some dates that minimized the number of days kids would miss school and I started making reservations and buying tickets.

If you’ve been keeping up over the last year, either via Facebook, this blog, text messages, or just normal conversations, you know it hasn’t been all rainbows and unicorns. Becky has had her share of issues starting with the shoulder replacement last December, the repeated small bowel obstruction issues, a couple infections, and most recently, her anemia diagnosis. Even as these complications threatened to derail the family vacation, we continued making and finalizing plans. Even as her fatigue from the anemia threatened to keep her down, Becky reiterated that we did not need to reschedule. Even as a couple late season tropical depressions threatened to dump rain on central Florida, we crossed our fingers, bought rain ponchos, and stayed the course.

I had three goals for the trip:

1. No Emergency Room trips
2. No wheelchair for Becky
3. Everybody eats and drinks enough to survive (I borrowed that one from Courtney)

With all that as background, I imagine you might be curious to know how it went. Well, things did not start out very well. Becky and I arrived earlier in the day than the kids and spent a few hours at Disney Springs. After that, Becky decided a nice relaxing bath in the garden tub in our rental house would be a good way to cap a day that started with a 3:30 am walk-up call to make our flight in Austin. Unfortunately, she lost her balance getting out of the tub and fell pretty hard on her arm. A couple hours later, as the pain level increased, we made a trip to a local Emergency Room clinic to get it checked out. We mainly wanted to verify it wasn’t broken - even though Becky was prepared to continue our adventure in a splint of cast if necessary. Thankfully, it wasn’t broken, but the sling and pain meds meant she needed to spend most of her days in the park getting pushed in a wheelchair. It was only the first day, and we had failed to meet the first two goals.

Toward the end of our first day in the park, Becky was shopping in one of the Magic Kingdom gift shops. She was walking for a bit because it was too crowded to maneuver the wheelchair easily. When she was done, she lost her balance getting back into the wheelchair and sort of fell into it face-first and landed with her knees under the chair. This was a much less serious fall, but she did get a new scrape and did need help from Mr. Incredible to get back up. No, that wasn’t me. I was with the kids a little way up the street. It’s Halloween party time at Disney so the Mr. Incredible was another park visitor that just happened to be nearby and offered to help. The folks at Disney were awesome in helping get Becky's new scrape bandaged up and offered to provide any medical services or help we needed. I think this fall hurt Becky's ego as much as anything, and thankfully, this was her last fall of the trip.

The weather was mostly cooperative. Even though there were a couple tropical storms headed toward the East Coast the week before we left, they both veered away and headed north so there wasn’t any widespread rain. We did have a couple days with storms. One was fairly short-lived, and the other was in the evening as we were leaving the parks. Mostly, it was warm and humid - warmer than we expected for October, but not overbearing.

For those that aren't familiar, Disney has special events in Magic Kingdom during the holidays. Mickey's Not-So-Scarry Halloween party in the Fall, and Mickey's Christmas Party after that. Regular ticket holders have to leave the park early on these evenings, and you have to have a special ticket to attend the special late-night festivities. Crowds are limited to about a third of normal park capacity. We had tickets for one night and enjoyed the special Halloween parade, the special fireworks show over the castle, trick-or-treating for the kids, and some shorter lines at a few of the rides. It was a late night, but it was a lot of fun for everyone.

A couple days later, Becky wasn't feeling well and decided she needed to stay home and rest up a little. After pushing her wheelchair for most of the first few days, I felt like I could use a break as well. My hip and right leg were burning and going numb. That will be one of the topics for my PCP at my next appointment. The kids went to Animal Kingdom without us that day. They told us later that it was probably the least wheelchair friendly of the parks, so it was probably a good decision all-around.

We had one more full day with the family in the parks. We did a little park hopping to catch a few things we had missed. Brian was feeling bad, but he pushed through. He went to the CVS Minute Clinic when he got home and was diagnosed with strep throat. I'm not sure how he kept it to himself, but thankfully he did.

Becky and I stayed one extra day to make it easier to coordinate trips to the airport, and checkout from our Vrbo rental. We went back to Magic Kingdom and rode a couple things we had missed and did a little last-minute shopping. We kept it pretty low-key and we left the parks fairly early. It was hot and crowded and we were running on fumes.

Our return trip home was mostly uneventful, although we did have to do a last-minute swap of items between our suitcases at the Southwest counter because Becky's was over the 50-pound limit. She bought a few too many t-shirts.

In the end, it was a great trip. Everyone had a great time, and most of us brought home memories that will last a lifetime. The younger kids probably won't remember much, but we have hundreds of pictures for them to look back at! And we all met goal #3!

P.S. We're still working on Becky's anemia. She received iron infusions in October, and she has follow-up labs scheduled in November to see how her bloodwork looks. We also need to coordinate treatment for her osteopenia (pre-osteoporosis).

Kidney Stones, and UTIs, and Anemia, Oh My!

It's time for another update.

Things have been going fairly smoothly since Becky's last surgery in June. It feels like her SBO (small bowel obstruction) issues have been resolved - at least for now. She did make one return trip to the ER and hospital in July for what felt like another SBO issue. This came as quite a surprise since she had the surgery which was supposed to "clean up" all the scar tissue that was thought to be the most likely root cause of her SBO problems. This particular episode and ER/hospital trip was not quite as severe as most of her previous ones. Things pretty much cleared up on their own within a day or so and she was able to head back home.

On the other hand, my body decided it was time to join in on the fun. A few weeks ago, I woke up extra early on a Friday morning with pain in the left side of my back. Since I had been down this road a couple times before, I was pretty sure what the cause was, but I was hoping this kidney stone would take care of itself without a trip to the Emergency Room. No such luck. Within an hour or so, I knew that at a minimum some pains meds were going to be in order. Something stronger than over-the-counter Tylenol or Ibuprofen. It was a relatively short trip. A scan to confirm the stone (and a few other lying in waiting), some pain meds, and something to help it pass. No surgery. I was better in a couple days, but I'm doing some follow-ups to decide on next steps. Becky said it felt weird to be sitting in the chair in the ER room while I was the one on the bed being treated. Anyway, enough about me. Back to Becky

Becky also made one more trip to the ER. She had been diagnosed as being anemic a few weeks ago. In fact, she's been borderline anemic off and on since the transplant. It's a common issue that transplant recipients have to deal with, and the transplant team has tried to improve things with various vitamins and meds. It's been a little worse lately and we had been working on the best plan to get Becky some iron infusions. Anyway, Becky woke up one morning with some chest pain. Since anemia can lead to heart issues, we decided to get her checked out. Better safe than sorry. The good news was that there were no heart issues. The bad news was that during the course of running all the tests they determined Becky had a UTI. Actually, it wasn't terrible news. Since Becky's on immunosuppressant medications, it's good the UTI was found early so it could be treated. She stayed in the hospital a couple days getting IV antibiotics and everything cleared up.

As far as the anemia goes, we were able to get the insurance to approve getting iron infusions at Texas Oncology here in Round Rock rather than having to make multiple trips to UTSW in Dallas. Becky finished a first round last week, and she's feeling a little better. It was a little emotional for her to get those infusions in the same room that her mom got chemo treatments a few years ago. Life likes to throw a curve every once in a while. Anyway, she's still tired, and she'll be getting some follow up blood work in a couple months to see where things stand.

So, overall things seem to be going fairly well. We haven't had any major issues in a few months. It feels like the we're dealing with fewer of the big things, and we're finally figuring out what Becky's new normal is two after her transplants. Yep, November 28th will be two years.

Until next time...

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!

While We Were Away

It’s been a couple months since my last post. For the most part, that’s good news. Things have been fairly stable and have been going pretty well. For the most part.

For those that didn’t know, Becky had been dealing with a lot of shoulder pain last year. She saw a couple different orthopedic doctors, and the diagnosis was that she had significant arthritis in her shoulder, almost complete loss of cartilage in her joint, and a few bone spurs. The only long-term solution was to have a shoulder replacement - especially since most pain medications would be off limits for a liver transplant recipient.

Well, that wasn’t on the radar. In hindsight, even though it may not have changed her mind about having the surgery, we feel we were not well informed about the post-surgery pain, physical therapy, and recovery time. Shoulder replacement is much more painful and involved than knee or hip replacement. One of the unfortunate side-trips for Becky turned out to be the result of taking some of her medications too close together resulting in her getting over-sedated. This caused her to aspirate some of her medication, which led to pneumonia and other complications. After a couple days in the hospital, she came back home but the transplant team restricted her to only Tylenol for pain. That made the next week or two even more challenging in terms of pain management, but she made it through it and is regaining strength and range of motion in her shoulder.

After that process started to level out a little, Becky felt like she was getting a UTI. Tests confirmed that and she started an antibiotic. The symptoms seemed to subside and all seemed well…for a few days. Not long after finishing the antibiotics, the symptoms started to return. More tests. This time, the tests indicated an infection that was not likely to respond oral antibiotics, so the UTSW transplant team and infectious disease doctor recommended a seven-day course of IV antibiotics. 

Normally, this would be fairly simple, although it would require a trip to Dallas to have PICC line placed so the IV medication could be administered at home. We didn’t even know that was possible, but apparently, it is. Who knew? However, since it was flu season, all beds at UTSW were occupied and there was no clear timetable for her to be admitted. The team wanted to get the medication started so they coordinated a plan to have Becky start at the local hospital ER, and then she would get admitted to the local hospital for treatment. This seemed like a good plan, but there were a couple speed bumps.

First, it’s flu season here too, so hospital beds are hard to get. She spent the first night and most of the next day in an ER room. At least she wasn’t one of the many patients that were in beds or even chairs in the ER hallways. But for somebody on immunosuppressant medication this was not the ideal place to be. She did get into a room a little less than 24 hours after getting to the ER.

Second, coordination of treatment was not quite as smooth as we hoped. Although there was good communication with the ER doctor on duty to get things started, information was not clearly flowed to the hospital doctor on call. That lack of communication and the weekend kept Becky in the hospital for another four days before the PICC line was placed. It took almost another day to coordinate home health care to remove the lines once the medication was finished.

I’ll end this update on a good note. For various reasons, the hospital case manager could not find a home health care service to provide the needed services. Insurance and staffing were the main obstacles. However, it turned out that the nurse that came to train us on how to administer the IV antibiotic at home lives in our neighborhood and recognized us, well, our story, from my posts in the neighborhood Facebook group. When he found out that we were having problems finding a home health care service, he volunteered to take out the PICC line himself on his own time at the end of Becky’s treatment. There are still good people around!

Things seem to have improved. Becky's feeling better. I'm sure there are more tests and more bloodwork in Becky's future to confirm all is well. We're still learning how to navigate all the twists and turns.

In the meantime, we're going to start planning a Disney vacation!