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[4/19: Updated update below in green]

The trend continues. More bumps in the road, or left turns, or detours, or whatever. I’m running out of analogies. The bottom line is this is the fourth weekend in a row that we’ve been in the Emergency Room and/or hospital.

After getting treated for the cat bite a couple weeks ago, things kinda went downhill the rest of the next week. Becky was feeling kind of “off.” We had a previously scheduled appointment at UTSW on that Thursday, April 4th. By the time we got there, Becky was feeling a little light-headed, her kidney numbers were elevated, and she had had a couple, what I’ll call “minor,” hallucinations. The combination resulted in another stay at the UT Southwestern Inn & Suites (aka, hospital, to most people).

Unfortunately, we’re starting to be able to predict the routine. Becky was subjected to after another round of tests, blood draws, scans, questions, more blood draws, more questions, and a few days of observation. In the end the diagnosis was that Becky’s s system was not dealing well with the combination of a recently added transplant medication and the two antibiotics originally prescribed post laparoscopy and then extended/updated after the cat bite - in addition to the 13 other regular medications she’s taking. The antibiotics were stopped, the new med was reduced in strength, and one other regular med was switched. After all that, Becky was released on Monday and felt better for most of last week.

Yes, “most” of the week ... right up until Friday, her birthday. The week started off pretty good. She was doing chauffeur duty for grandkids while Brian was in Dallas for work. She started feeling bad on Friday. On Saturday, she stayed in bed late because she was extra tired - which was not-unexpected with all her activity during the week. But then she started complaining of chest pains, similar to but stronger than those that led to the laparoscopic procedure a couple weeks ago.

So, not wanting to mess around with chest pains, we decided to visit the Seton ER in Round Rock on Saturday afternoon. After more tests, the decision was to admit Becky to the hospital for two reasons. One, her kidney numbers were once again elevated. IV fluids overnight have already brought those numbers back in line. Two, there was some indication there may be some fluid around her heart. Orders were placed for an echocardiogram to get a better look. The echocardiogram was negative. A stress test was scheduled for Monday morning (although not completed until Tuesday). The stress test showed some potential blockage. A subsequent CTA (CT scan with contrast) determined there was no blockage and her heart was fine. On to the next test, an EGD (endoscopy, upper GI scope) today, Friday, the 19th, showed Becky has gastritis and a hiatal hernia - both of which could be contributing to her pain and discomfort, and are easily treatable. We’re waiting to talk to a doctor about next steps.

I’ll end this post by copying my Facebook post from Friday...

Happy birthday to the love of my life! It's been one heck of a year. If somebody would have told me last year that you would be a five month transplant survivor on this birthday, I never would have believed them. We compressed an amazing amount of emotion, stress, joy, uncertainty, hope, pain, anxiety, relief, heartache, worry, thankfulness ... and emergency room visits ... into one year. In hindsight, as hectic as it was, I'm glad it didn't drag on. I'm incredibly thankful you're here for this milestone birthday, and look forward to having you around for many more. Love you. Now and forever.

Praying that the medical team is able to determine the source or Becky’s ongoing chest/GI pain so we can break the pattern of weekend hospital time. It’s really cutting into our time with the grandkids.

Bluebonnet Update!

It’s only been a couple weeks since the last post, but it feels like so much has happened. Spoiler alert for those that just want the bottom line. As we travelled the Texas highways and enjoyed the bluebonnets over the past couple weeks, I think we’ve finally turned a corner and ended up in a better place as far as Becky’s GI issues go.

After we left the UTSW hospital a couple weeks ago, it didn’t take long for things to take another turn for the worse. Although Becky felt OK when we left, by the end of last week she was feeling pretty bad. The stomach pain had progressed from the usual nausea to a more acute pain and higher up on her abdomen. After a call to the transplant team on Friday, they suggested we return to the hospital in Dallas.

The good news is that the CT scan showed something they hadn’t seen before. There appeared to be something going on with her small intestine. The team decided to take a better look with a laparoscopic procedure and found part of Becky’s intestine had adhered to her abdomen in such a way that it was causing a partial obstruction. They were able to detach it laparoscopically and kept her in the hospital a couple days for observation. She came home Tuesday after a couple uneventful days and a few more med changes.

I felt that we had finally turned a corner. Becky was finally feeling a little better. She was enjoying seeing the bluebonnets and getting out of the house for things other than going to a hospital or emergency room.

Then our cat decided she wanted some blog time. Well, she really wanted some affection Friday morning while hanging out in bed with Becky, and when she didn’t get it, she bit Becky’s finger ... hard. A few hours later, her finger was getting a little red, was sore, and a little swollen. So after yet another series of phone calls with the transplant team, we ended up in another emergency room. We left with a change one of the antibiotics Becky was already on as a result of last weekend’s procedure, and instructions to keep the wound clean and keep a close eye on it. At this point, it seems to be improving so we’re enjoying some Easter weekend time with family.

I’m sure there will be more corners, more hidden valleys, and more pit stops along the road. Hopefully we can reduce the frequency of these emergency room side trips and stay the course to a more full recovery.

Happy Easter! Remember what we’re really celebrating!

Greetings from the “Big D”

Happy St. Patrick’s Day from Dallas. A planned overnight trip to Dallas for a couple early morning appointments on Friday turned into a (hopefully short) stay at the UTSW Clements University Hospital. With a little Irish luck, which our genealogical research surprisingly shows Becky would be more likely to tap into than I would, this will be a short detour on her transplant journey.

Over the last few weeks, a couple different issues have cropped up. First, there were a few lab numbers that the medical team wanted to follow up on. That led to appointments for “special labs” to verify there were no rejection related antibodies and an ultrasound to verify the kidney still looked okay. Second, Becky’s nausea and other GI issues have ratcheted up a notch to more severe stomach pain and cramping.

After we left the early morning appointments, we headed to the car so Becky could take her meds before we got on the road home. She wasn’t able to keep them down. The transplant team had repeatedly reminded us of the importance of these meds and had told us to go to the emergency room if that became a regular problem. Since this has happened a few times over the past couple weeks and we were right here at UTSW anyway, we decided to head over to the emergency department. After some initial conversations between the emergency department and transplant team, they decided to admit Becky to the hospital to see if we could get some answers.

The good news is that all the extra tests, ultrasounds, and bloodwork that have been done over the past couple days continue to show the liver and kidney are still working well, and there are no signs of rejection, infection, or other major problems. That’s all good.

The results related to Becky’s GI issues are less clear. The most probable theory is that Becky’s system is extra sensitive to one of the anti-rejection drugs. It’s known to cause nausea and similar issues, and since she has a history of reflux and IBS on a good day, adding this and the other laundry list of drugs may just be extra hard on her system. For those that were in the loop for her last emergency room visit in Austin a week or so ago, that diagnosis of splenic infarction as the cause of her stomach pain has been ruled out. There was evidence of that condition pre-transplant and it is not likely to be the cause of her current problems.

At this point, midday Sunday, the medical team has reduced the strength of the suspect medication and is scheduling an endoscopy for Monday to see if there are any other issues going on. That means another day/night in Dallas, but waiting for an appointment as an outpatient could mean waiting until May or June. So we’ll hang out in Dallas for another day. It’s been a roller coaster and Becky’s tired of feeling “sick.” She’d like to get some answers, even if those answers are simply ruling out another underlying medical cause, and I have to agree with her.

One final note ... One good indication that, in spite of the GI issues, Becky’s feeling better overall and getting back to herself is that she had her own list of questions on her phone for the doctor today. :-)

Your continued thoughts, prayers, and kind words of support are heard, felt, and appreciated.

Happy St. Patrick’s Day!

Round and Round and Round

It's been a little over two weeks since my last post, and I'll probably sound like a broken record, but that seems appropriate. That also goes round and round and round without seeming to make any progress. But sticking with my favorite "road trip" analogy, these last couple weeks have felt a little like this post's picture. We're going along OK, maybe not at full speed, but headed in the right direction, and then we come to a roundabout. Sometimes we just cruise on through. Sometimes we feel like we're going in circles. Sometimes we exit one roundabout and find ourselves entering another. And sometimes we just get off at the wrong exit.

Cruising on through - Becky started driving in the last couple weeks. We did a couple short trips in the neighborhood and to her weekly Quest appointment to start. Last week, she drove herself to the Quest appointment. She's also pretty much over the cold that had been dragging her down for a few weeks.

Going in circles - Eating has had its ups and downs since the Dobhoff tube was removed. Most days she's trying to eat a little, but she feels full after just a few bites. Every once in a while, she eats what might almost be considered a meal. I'd like to see more of those days. Some days her nausea and stomach issues kick in and she hardly eats at all. That and the cold have limited or cancelled most of her recent physical therapy appointments, so we'll need to reschedule those. At one point last week, the stomach issues resulted in a new roundabout.

Entering another roundabout - On Wednesday night last week, Becky's stomach issues cranked up a notch to more severe cramping and outright pain. So, we made another trip to the emergency room. We left with a "diagnosis" of "splenic infarction" (yeah, we had to look it up too) and thought maybe we had some insight into something going on with her spleen that could be treated/corrected. However, the transplant team assures us this is a condition that Becky had before the transplant and that it would not account for her ongoing nausea or the more severe stomach pain. We're still asking questions about next steps including a possible endoscopy and further GI testing.

Wrong exit - In my last post I mentioned that we were trying to figure out the logistics of getting a new Aranesp injection every week to help with her low red blood cell/hemoglobin counts without us having to make a weekly trip to Dallas. We're still trying to figure that out. Becky was derailed a bit by the ER trip. We'll need to see if we can figure that out this week.

So, there you have it. My summary of another leg of our journey. Yes, most days we feel like we're on the right road. Becky's getting more and more independent, and my work schedule has returned to mostly normal - except for those trips to Dallas and occasional ER trips. Yes, we know (because the doctors keep reminding us) that this will be a long journey since Becky was so sick - being "one of the sickest people in the hospital" is not easy to recover from. Some days knowing that is not enough to keep us from being road weary, but we keep going.

As always, we thank you for your continued support and prayers! They are felt and appreciated!

On the Right Road

It’s hard to believe, but it’s almost been three months since Becky received her new liver and kidney. She had four appointments in Dallas on Thursday. All indications are that she's on the right road. Even though some days are still a little tougher than others, we seem to be on a good trajectory overall.

The last couple weeks haven't been without bumps. A couple days after our Christmas celebration, Becky started feeling like she had allergies or a cold or something. By Thursday of last week, we were getting in touch with her liver team coordinator to determine next steps. They suggested starting with a trip to the doctor to test for flu and COVID. Both tests came back negative. However, by the weekend, she was feeling worse. Another phone call. This time we headed to the emergency room to run more tests.

After six or seven hours in the ER, and the ER doctor consulting with Becky's liver team, the conclusion was that it was most likely just a cold. It just hits harder and takes longer to fight off because she's on immunosuppressants. It's still hanging around but there are signs she's getting a little better. It's a not-so-pleasant reminder that she'll need to be extra cautious when around others - like at her physical therapy sessions. They did give her another unit of blood while at the ER since her hemoglobin levels have been trending down.

On the other hand, the appointments in Dallas were encouraging. The doctor said she looked great. She's gaining a little weight - which means she's rebuilding some muscle mass. Most of the lab numbers looked good. She's obviously stronger. The best indication to me was that this was Becky's first visit to UTSW that she did not need a walker or wheelchair for the entire visit. She was a little tired at the end of the day, but she made it.

I said most of the lab numbers looked good because her hemoglobin is still a little lower than they would like and so are some of her iron numbers. So we're trying to figure out the logistics of a new injection every week without having to make a weekly trip to Dallas.

Bottom line, the doctors were very encouraging. Becky made it through the first three months with no major complications. Once we hit six months, they'll start tapering off some meds. It may be a year before she feels back to normal, but we're headed in the right direction. Oh, I almost forgot. Becky looked good enough and healthy enough that the team was willing to remove the feeding tube and give her a week or two trial period to see if she can regain her appetite and start eating. We've started an HEB list!

As always, thanks again for the prayers. The support has been awesome.

Merry Christmas!

You're probably thinking I'm a little late. Christmas was several weeks ago, right? Well, you may remember that we were still in the middle of our extended retreat in Dallas over the holidays. Our kids were kind enough to put our Christmas tree up before we came home, and as we settled in to our new routine, we picked a date for our family Christmas celebration. That date was yesterday. We had Christmas and exchanged presents with our kids and grandkids. Then some more of Becky's family joined us for a "Christmas" dinner. And a good time was had by all!

As far as recovery goes, we're still on that road. Progress continues. Becky's biggest challenge is still her nausea and lack of appetite. Although both seem slightly better on most days, the progress on that front is slow. She is getting stronger and more steady on her feet though, so that's a big plus.

It was also my first week back in the office at work since October. I wasn't able to get in a full 40 hours, but Becky and I are both making adjustments. We're also getting a little help with transportation. The road has not been easy and we don't expect the rest of the journey be short, but we feel like we're still headed in the right direction.

Thanks again to everyone for your continued support and prayers! They are felt and appreciated! 

We're home! (again)

Well, we're back home. The doctors didn't find any underlying medical problems that would be causing Becky's nausea and weight loss. In fact, one of the doctors said that given how sick she was before and even after the transplant, she looked better than he expected and is near what he would consider best case scenario in terms of progress at this point. He added that we still a long road ahead given the toll on her body over the past few months, but he was encouraged and encouraging.

They changed a few medications and are trying a different formula for Becky's nutrition, and after a couple days at UTSW her nausea seems better. The lack of solid foods and all the various medications combined with her historically sensitive GI system make it almost impossible for her stomach to feel normal right now. So, I wouldn't say she's 100%, but at least she hasn't been throwing up (sorry for graphic mental picture).

There's really not much else to update. Becky's slowly getting stronger although she's still tired. She's trying to find things she can eat so we can get rid of the Dobhoff feeding tube, but she still doesn't have much of an appetite and most things still don't taste good to her. But on the plus side, she did eat a couple bites of waffle for lunch, and about a half scoop of Braum's ice cream on the way home. We're still working on the logistics of home care and transportation so I can return to the office.

That's about it. Overall, she's much more herself than she was a couple months ago. Feel free to call or text her (she doesn't do Facebook Messenger). Afternoons or evenings are probably better than mornings.

Thanks again for all the support and prayers as we continue the journey.