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!