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!