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!

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!