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!

Something Old, Something New

Just when it felt like the road was leveling out a little and things were getting a bit more predictable, we run into another pothole. Becky started having abdominal pain again early Saturday morning (June 8th). The pain got progressively worse during the day, and she started throwing up as well. By late afternoon we were headed to the emergency room. After a short stay at the ER and whole battery of tests, the diagnosis was another small bowel obstruction (SBO). So, there's the something old.

After the Seton medical team looped in the team from UTSW, they decided the best option would be to transfer Becky to Dallas for further evaluation and treatment. After a few hours, more than enough time to drive to Dallas, the logistics were in place to fly Becky from Austin to Dallas by AirMed. Yep, that's why I chose that picture for this post, and that's the something new. Becky was a little disappointed that she didn't get a helicopter ride, but I imagine the plane trip was more comfortable than riding 2-3 hours in the back of an ambulance.

By the time the team at UTSW ran some of their own tests, the obstruction was no longer there. It wasn't quite magic. It's likely that the tube that they placed in Becky's stomach at Seton to drain fluid did its job, and by relieving the pressure in her system, the obstruction was able to break free. I've learned a lot about the possible causes of SBOs and it turns out that they are much more likely after any abdominal surgery. Counting the recent transplant, and follow up surgeries, Becky has had at least eight surgeries in and around her abdomen. Each of those contribute scar tissue which is one of the leading causes of SBOs.

Becky and I hung out in Dallas for a couple more days while they monitored things to make sure the SBO was truly gone. She also received an infusion of iron and a blood transfusion, both of which we had been trying to coordinate the logistics of making happen in Georgetown/Austin. So, not a completely wasted trip. Becky got some needed medical care, and we learned a little more about what to look for the next time she's having stomach pain.

Onward we go.

Trending

[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.

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!

Back in Dallas

Becky’s road to recovery is taking a little detour this week. After a week in a Dallas hotel and a week back at home, now we’re back at UT Southwestern in Dallas. I'll start by saying we don't think this is anything serious. The medical team is being extra cautious, so it doesn't become serious.

As I’m sure I’ve mentioned in several previous posts, Becky's been fighting nausea and related GI issues (pretty much all of them) ever since the transplant surgery. She hasn't had an appetite. Everything she does try tastes bad, or at least, not good. And even if the taste is okay, she feels full after just a couple bites. That's why she came home with the Dobhoff feeding tube to get nutrition at night.

That problem in and of itself was not a major concern or the team wouldn't have sent us home. However, over the last four weeks, this has contributed to two additional issues. First, Becky has lost 18-20 pounds in the last four weeks. Second, at least one number in her blood work seems to indicate she's not keeping all of her anti-rejection drugs in her system long enough for them to be effective. That raised the level of concern enough for them to ask us to come back to Dallas to diagnose, observe, and adjust. We've already had a couple conversations this morning about changing some medications to try to combat the nausea and get things headed in the right direction.

On a more positive note, Becky seems to be getting a little stronger every day. She's getting around the house pretty well. Her first physical therapy evaluation session in Georgetown went well. The therapist there was optimistic that she wouldn't have to use the walker for very long as therapy progresses. With a little luck we'll be back in town before her first regular therapy appointments next week.

Grateful for friends and family

Not a lot of news as we approach the holiday, but I did want to share a couple things.

First, Becky’s making slow progress this week. The trip back to ICU caused a reset of several therapies. The rehab folks had to re-evaluate. They determined she’s not quite ready for that yet, so we still have a little work to do with physical therapy at the hospital. Speech therapy had to re-administer the cognitive evaluation. As an untrained observer, I think she did slightly better this time around, so that’s a plus. They’ve adjusted some meds on her respiratory therapy thinking that might have contributed to her elevated heart rate. She’s a little more accepting of my reminders to do her own breathing exercises.

Even with all that positive news, it feels like we’re running a marathon and we’ve only moved forward a city block this week. Recovery and rehab will continue to be long and challenging. The doctor this morning said it could be six months before Becky looks back and thanks them for pushing her to do more every day. I’m looking forward to that day!

On another note, I was looking for a Christmas picture the other night that I could use for this blog post when I came across a Charlie Brown scene. As we navigate a very different holiday season this year, I thought about Charlie Brown’s Christmas Story and how it reminds us Christmas isn't about all of the lights, decorations, and presents, but it's about people in our lives and what they do for us. It reminded me of how grateful I am for all the people that have been part of our lives and our story over the past few months.

I’m grateful for friends and family, including those on Facebook that I might never have met in person as well as co-workers and bible study friends that we’ve only known a few months, who have offered words of encouragement, included us in their prayers, and provided support in ways I would never have imagined.

I’m grateful for a company, managers, leadership, co-workers, and everybody else that has made it possible for me to continue working as much as I can while spending time in Dallas with Becky.

I’m grateful for the medical team at UT Southwestern that has done so much to get Becky back to the point where she is today. She’s obviously nowhere near 100%, but she’s come a long way from when she was “one of the sickest patients in the hospital.”

Last but not least, I’m grateful that God has been with us and the medical team throughout this journey and has most likely intervened in ways we will never know or understand.

Merry Christmas to all!

Out of ICU (again)

It looks like we’re back on the road to recovery, although in some ways it feels like we’re a little behind where we started. Becky was only in ICU for a day, but she pretty much slept and stayed in bed for three days. It sapped some of the limited strength she had. In any case, we’re back on the seventh floor in the transplant wing after navigating this latest bump in the road.

Unfortunately there was no clear or definitive diagnosis of why she felt so bad last weekend. Theories ranged from a possible blood clot in a lung to an infection to a possible interaction between some of the medications she’s on. From what I can gather in this stage of my transplant residency, I would guess some combination of infection and drug interactions. The white blood cell count seems to point to some kind of infection. A couple of her antibiotic/anti-fungal medications were modified, but nothing else was really treated directly or changed. This would make a blood clot pretty unlikely since her heart rate and respiratory rate returned to normal ranges and white blood cell count has come down.

Becky felt somewhat better today. She’s certainly not 100% or even quite as good as she was a week ago, but much better than she was over the weekend. She did participate in some limited physical therapy today. She’s very weak and has a lot of work to do - which goes against her nature. It’s not that she shies away from work. She packed up most of our house in Illinois before we moved back to Georgetown the last time. That was enough to fill most of semi. No small task. She’s resistant to people telling her what she “has” to do. We’re working on getting her to accept that it’s necessary in this case.

The good news is that all indications are that the new liver and kidney are doing well. The main focus now is getting her strong enough to get to rehab and getting her lung capacity back to where it should be.

Sick Mama

I was hoping to avoid this post, but it seems like we’ve hit another of those bumps in the road. I would much rather be sharing a more positive message - something like, “after 50 days in Dallas, Becky is being transferred to a rehab facility.” Unfortunately, that’s not how it’s playing out.

Starting Thursday evening, Becky started feeling worse. I’m not sure how to describe it other than she feels sick and is having more general pain than she had been having. She felt worse on Friday so they started treating symptoms. Saturday continued in the wrong direction to the point where last night they started running another whole battery of tests.

At this point it feels like they’ve done pretty much “all the things.” More blood cultures. Checked for COVID, flu, and other viruses. Removed the PICC line and replaced it with two other IV’s. Replaced the catheter. Tested both as possible sources of infection. Did CT scans, EKGs, ultrasounds, and X-rays including scans of arms and legs looking for blood clots. Nothing major has shown up so far. Small amounts of fluid, but nothing out of the ordinary considering where we are in the recovery process.

As of this morning (Sunday), she still has elevated heart rate and breathing, seems short of breath, has lower oxygen levels (she’s back on oxygen), and is still in significant pain. Good news, bad news. There was a fungal infection that they started treating a couple days ago, and white blood cell counts have come down a little. However, counts are still high and this doesn’t account for all her symptoms. The medical team discussed options this morning

The decision at this point is to transfer her back to ICU where she can be monitored more closely until we’re over this hump. Hopefully we’re able to find the root cause quickly and this is a much shorter stay than the last time.

Continued prayers are much appreciated.

The journey continues

As most of you probably already know, Becky’s liver and kidney transplant surgery yesterday was a success. However, that is not really the end of our journey. It is simply a mile marker, a significant mile marker to be sure, on this crazy road we’re on. As the picture suggests, it’s a road that disappears into the mountains so we’re not really sure what’s on the other side yet. There will almost certainly be bumps, curves, valleys, tough climbs ... should I go on? Are you tired of my analogies yet? I’ll move on.

In many ways today has been a pretty uneventful day. The surgical team for the liver is happy with how the new liver appears to be working. No concerns there so far. The new kidney is being a little slower to “wake up” (their term). Becky was placed back on the CRRT (continuous dialysis) yesterday evening. This is not a surprise. Apparently it’s common for the kidney to take a little longer to start doing its thing. In fact, from this point forward, it will be the kidney team that’s in charge of her care and medications. The kidney is more subject to rejection and overall requires more monitoring. Who knew?

Becky is still on the ventilator this afternoon. We’re waiting for her body to get over the sedation and recover from the trauma of a 6-1/2 hour surgery and two organ transplants. Again, no real concerns from any of the numerous doctors, nurses, interns, residents, techs, therapists, etc. that have been in and out today. We just need her to get past this so we can start the next part of the journey. Real time update - she just started a “trial run” of breathing on her own with limited ventilator support and seems to be doing OK.

I suspect we will be in Dallas for Christmas this year. I’m not sure yet if Becky will still be in a rehab facility or if we’ll be in a hotel room with frequent hospital visits. Hopefully that picture and timeline will become more clear in the coming days.

In the meantime, we continue to be thankful for everyone’s support, including my employer’s, and we continue to ask for your prayers as we prepare for the next leg. Maybe I should have used an Amazing Race theme for this blog. Oh well, too late now.

Four weeks and counting

It’s hard to believe, but we came up to Dallas four weeks ago today for a simple initial screening appointment to see if the liver team at UT Southwestern thought Becky would be a candidate for a transplant. Only 10 or 15 minutes into the appointment the doctor answered by sending us to the Emergency Department, and a couple days later Becky was moved to the ICU. And four weeks later, that’s still where we are.

There haven’t been any significant changes in the last couple weeks. We’re just hanging on and waiting for a matching donor to be located. Nobody is more anxious to hear some news about a donor than Becky. She asks me to take her home multiple times a day. And as much as I’d love to do that, I’m pretty sure our insurance won’t cover the kind of home health care she would need at this point.

Physically, she's been in pretty much the same place for a couple weeks. Mentally, she's suffering from ICU delirium and is starting to experience hallucinations. The doctors continue to try to tweak things to keep her on a steady path and ready for surgery when the time comes.

Personally, working from a hospital room for four weeks and watching Becky struggle is beginning to wear on me as well. I continue to be grateful for the flexibility of BAE Systems as they find projects I can work remotely, for the assistance being provided by the insurance, for the care being given by the UT Southwestern team, and for the support and prayers from friends, family, and co-workers. I'm not sure where we would be without any one of those. Thank you!

Please continue to pray for our patience, the expertise of the medical staff, and Becky's strength.

Take a number … and wait

For those of you that have already asked, and for those that might be wondering but haven’t asked, we’re still in the queue. For as fast as things progressed over the Summer and into the Fall, the days have suddenly started to drag. It feels like we’ve transitioned from a sprint to a marathon. Even that isn’t a great analogy because unlike any kind of race, we don’t have any idea where the finish line is.

The take-a-number analogy is closer, but even then you have to imagine that it’s a random number and the numbers aren’t being called in order. That’s where we’re at. We have a number. We’re in the queue. We just don’t know how many people are in front of us or how fast the line is moving. On top of that, the numbers are being called by random people and you have to wait for a person with the right skills to call your number. So, enough of the analogy.

Where are we? We’re waiting.

That’s really about it. The doctors continue to manage Becky’s fluids and various components of her blood - e.g., sodium, calcium, red/white blood cell counts, and so on and so forth. No major issues. They just continue tweaking things and making adjustments on the CRRT (continuous dialysis) as necessary. The main thing they’re asking Becky to do at this point is to try to eat more protein during the day. It’s hard for her since she doesn’t have much of an appetite and she’s not supposed to have most of the things she really wants. In fact her appetite is such that even with an appetite stimulant and the doctors giving her some grace on the diet restrictions, she ate less than 1/3 of a slice of pizza last night and about 3 chips with queso for lunch today - and those are two of her favorite things.

Most days she tries to work with physical and occupational therapy when they come by to help maintain her strength. She walks up and down the hall about every other day. She sits in the chair for a few hours on most days. We’re just managing all the things that come with an extended stay in the ICU. Becky’s also dealing with ICU delirium. She’s disappointed every day when there’s no news about a donor. She’s starting to get a little discouraged. In her current state, it’s really hard to explain that we’re waiting for somebody else that has elected to be a donor, is a match, and is healthy enough, to pass away. As one doctor stated, we’re waiting for another family to have their worst day so we can have our best day. It’s a tough spot to be in.

And so we continue to wait ... and pray ... for an unknown date and time to arrive, and for us to have the patience to make it to that date and come out stronger on the other side.

Thankful for the great care

We are both thankful for the great care Becky’s getting while we wait. Numbers are just numbers and we’re trying to remember that we’re not in control. At the same time, the numbers suggest that we could be waiting for a matching donor for a day, a week, a month, or even several months depending on Becky’s health. If she gets worse, she moves up the list and the wait time comes down. If she gets too much worse, she would possibly not be considered healthy enough to survive surgery and recovery.

There have been no major changes to Becky’s health over the last week.

And so we wait.

Well that came out of left field

Just when we thought we had a fairly good handle on things, and Becky was stable, and all we had to do was stay strong enough for surgery, here comes a curve ball. Can you throw a curve ball from left field? Probably. But I digress.

The kidney doctor stopped by this morning to let us know that Becky was being evaluated for a potential kidney transplant. Obviously since the liver and kidneys are so interdependent and she's on dialysis, we knew they were monitoring her kidney numbers. However, there hasn't been any mention of acute kidney damage or failure. And that's still the case–no acute failure/damage. On the other hand, it's not uncommon for the kidneys to be affected by the liver failure and for dialysis to be required after the liver transplant if the kidneys don't recover.

In Becky's case, a new liver doctor was in charge of her case this week and he dug into her history as he was coming up to speed. He found evidence that the kidney GFR numbers started to trend in the wrong direction in August, specifically August 14th. In the opinion of both teams it now makes sense to replace both organs at the same time rather than take the (increased) risk of a second transplant later. To be clear, her kidneys haven't failed yet, and she's on the CRRT dialysis to keep that from happening. But since she was trending in the wrong direction before, it makes sense to do a dual transplant now rather than take the risk of her kidneys not recovering after the liver transplant and having to go through dialysis and a second transplant later.

The good news is that somebody noticed this and has recommended this as a new course of action. We think it makes sense to reduce the risk of dialysis and a second transplant. The down side is that she doesn't qualify for the kidney transplant until her GFR numbers trend in the wrong direction for at least 90 days. That means we won’t be on the kidney transplant list until next Tuesday (the 14th of November) and, therefor, Becky is now officially listed as inactive on the liver transplant list. So as long Becky remains stable we'll be here in our new home away from home and my remote office, a.k.a. the UT Southwestern Medical Center ICU, until at least next Tuesday when she becomes active on both lists.

If anybody wants to come visit this weekend, I’m in a room with a trundle bed so I can easily accommodate a couple extra guests.

Please continue the prayers. They've gotten us this far!

The ups and downs continue

Perhaps on a slightly different level, but the days in the ICU have been similar to the past several weeks in one notable way. There have certainly been ups and downs. Becky’s had some good days (relatively speaking) and some not so good days. The CRRT machine seems to be doing its job of providing some relief to her kidneys. However, her white blood cell count ticked up again today so we’re doing another battery of tests to make sure there is no infection.

After a couple pretty rough days earlier in the week, Becky was pretty alert and even a little chipper while visiting with Brittany, Brian and Courtney this weekend. Some days she’s eating OK, and some days not so much. That’s probably one of the biggest things she needs to focus on right now - getting enough nutrition and protein into her body so she doesn’t end up on a feeding tube.

In the meantime we continue to wait and pray that a matching donor is found.

And now we wait…

Not really much news to share. Becky’s stable - actually improved slightly in the last day or two. We’re on the transplant list. We’re probably fairly high on the list, although I’m not sure we’ll know exactly where or that it matters. At this point the team has to find a donor that’s a good match (blood type and liver size), is close enough to transport, and that Becky is the highest risk candidate among any other matches in the area. So, we wait - from the ICU.

Keep praying that we have the patience to accept God’s timing, and that she remains stable enough to handle the surgery when the time comes.

We’re on the list!

As I mentioned in my previous post, the primary goals of the past few days in Dallas have been 1) to get Becky to a point where she’s stable overall, and 2) to complete her evaluation and provide that information to the liver team in order to obtain a recommendation to be placed on the national transplant list.

With regards to the first goal…

Becky’s liver continued to degrade as did her health. The failing liver started putting pressure on her kidneys. That led to a whole new series of problems. She’s now on CRRT dialysis in the ICU. This is basically a continuous dialysis machine that does the job her kidneys would normally do. The purpose is to give her kidneys a break so they don’t fail before a transplant would happen. She’s also been fighting low blood pressure. They used a couple different techniques to get her blood pressure back up to an acceptable level. It is significantly better today than it was a couple days ago, so that’s a plus. Overall, she’s weak but doing her best to stay strong until the team can find a liver to recommend for transplant. She’s quite a bit better than she was earlier in the week when her blood pressure was hanging out in the upper 70s/30s. She was not doing great. In fact, the surgeons were hesitant to put her on the list because she might not be able to handle the surgery. Some days have been a little better than others, but getting her healthy enough for surgery and finding a suitable transplant sooner rather than later are the only way she’s going to get to play with our grandkids.

Now for some updates relative to the second goal…

The team that makes the decision to put her on the transplant list actually met early (on Wednesday) just to review Becky’s case and gave preliminary, conditional approval based on the outcome of the heart tests and improved blood pressure. All signs pointed to a positive recommendation once those conditions were met. The initial cardiac stress test on Wednesday did not provide complete results. Everything was good as far as they could go, but they couldn’t get her heart rate to where they wanted it - primarily due to her low blood pressure. They did some additional testing and gave a thumbs up for the heart on Thursday. By this morning her blood pressure had stabilized, meds were being reduced, and they were starting to remove some of her extra fluids. At about 10:00 this morning the surgeon stopped by to give a thumbs up and say Becky would be activated on the national transplant list today! Yay! Even better, he was hopeful (no guarantees obviously) they may find a liver as soon as this weekend! Keep praying!

Footnotes…

We’re in Dallas for the duration at this point. Becky will probably remain in ICU until a qualified candidate is found, presented to us, and we accept. We have the option to accept or pass and wait for another based on what we know about the health history of the donor and any possible risks. If not for the CRRT dialysis machine she could probably be in a regular room, but that particular device is only managed in the ICU. I’ll be in a hotel from now until they release us to return to Austin (typically a month or so after the surgery).

I also want to say that after spending the week here, we definitely feel like we’re in the right place. The team at UT Southwestern has been incredible. Becky has been taken care of by an awesome team all the way from our initial planned visit to the clinic on Monday through our time in ICU starting Wednesday afternoon. A huge “Thank you” to that incredible team!

We’re not done yet, but certainly on the right road. Posts will continue for those who want to continue keeping up!

Liver transplant evaluation underway

We had an initial visit with a couple doctors from the liver transplant evaluation team this morning. They have two goals for this week.

The first is to try to get her in a better place for day-to-day life. The first doctor was concerned that if we went back home yesterday, Becky wouldn’t be able to take care of herself due to here weakness and shortness of breath. Her high white blood cell counts generally indicate an infection. They’ve taken blood several times to run various panels of tests in an attempt to find the source of any infection. She’s also had several other scans done and is scheduled for another blood transfusion today.

The second goal for this week is to fast track the actual liver transplant evaluation by performing as many parts of the evaluation as possible while she is an in-patient before the team meets on Thursday. This will include more visits with the liver team doctors, a visit with a social worker to make sure Becky has a good support network in place, and more tests to determine if she is healthy enough for a major surgery. There’s probably more that I’m not remembering or haven’t been told yet. The insurance company has amazingly already approved this path and is sending me information about coverages related to liver transplants.

We’ve had more visitors today than trick-or-treaters on Halloween. One of the most important was a transplant orientation where we learned some of the advantages and disadvantages of a living donor vs. a deceased donor. So much information in so little time. And not to discourage any potential living donors because we do still plan to pursue both options simultaneously, but it sounds like Becky’s ever increasing MELD score actually makes a deceased donor a better option. That’s because her body simply may not have the reserves to work through regenerating a whole liver from a partial liver donation. On the other hand, we are still working on getting her white and red blood cell counts back to a better place, along with a few other markers, so her score comes back down from the most recent score of 32.

In summary, all of these tests and conversations are providing data to the liver transplant team so they can make a decision on Thursday as to whether or not she is approved as a transplant candidate.

A positive outcome from that meeting is near the top of our prayer request list right now.

4 days/3 nights at the all-inclusive NAMC resort and spa

Well, we've returned home from our 3 night stay at the North Austin Medical Center. Great place. Friendly staff (mostly). Food was only so-so. In the end, I probably wouldn't recommend it unless you're actually in need of medical services. In that case, sure, I'd probably go with four stars.

A couple more procedures happened since yesterday's post. Becky had a paracentesis and they tested the drained fluid for infection yesterday. Today, she had another upper GI procedure where they went in and banded two of her enlarged veins as a preventative measure to avoid internal bleeding.

What have we learned since yesterday?

• I'm not 100% sure, but nobody said there was an infection in Becky's ascites fluid, so I think that's a plus.

• The hemoglobin counts are an indicator of possible anemia and are probably going to be a constant battle until the transplant. Since the liver's not doing its job, Becky just doesn't have the right mix of stuff in her blood. This is one of the complications we'll have to manage. Hello, Texas Oncology? Can you call us back so we can come up with a plan?

• Apparently the procedure to band the veins in her esophagus will also be a regular thing. Or at least she'll need to be checked for this, probably on a monthly basis.

In summary, Becky had a blood transfusion (where we confirmed her blood type is O+), a paracentesis (which means we don't plan to go in this Thursday), two upper GI procedures (one detected an esophageal infection, the other for the banding), some IV antibiotics and albumin, and a couple prescriptions to finish up at home.

On the transplant evalutation front, we do now have a dedicated Case Manager at the insurance company and can begin conversations with UT Southwestern Medical Center in Dallas. I've included more information related to transplants and donors on a separate page - Transplant Links and Information

Turning corners

If you’ve been keeping up, you know that we spent the weekend at the hospital. We started in the Emergency Room and were eventually admitted to the hospital Saturday night. As of today (Monday), we seemed to have turned a corner and if things go as planned Becky will be discharged tomorrow. This is a little long (a bad habit of mine), but here’s what we’ve learned:

• Becky’s hemoglobin was low. We kinda knew that already, but since Becky was feeling so bad and the count was drifting lower, they decided to do a blood transfusion. In the process, we also learned that Becky’s blood type is O+. We’re waiting for follow up blood work to confirm that her counts are better.

• Becky’s white blood cell counts were high. We also kinda knew this, but since she wasn’t showing any signs of infection (before Friday), we hadn’t pursued anything. Well, not quite true. The liver doctor had prescribed an anti-biotic, but he hadn’t told us that he had or why so she hadn’t started taking them until Friday. An endoscopy on Sunday discovered a fungal infection in Becky’s esophagus. This doesn’t generally cause significant increases in white blood cell counts, so there have been a whole host of other tests to see if there is a second infection. Nothing else has been found so far, but they are going to do another test on her ascites fluid to verify there’s not one there and she’s been placed on another more wide ranging antibiotic just to cover all the bases.

• The first endoscopy verified her enlarged varies (swollen veins in her esophagus) but no sign of bleeding (a good thing). We’re currently on the books for a second endoscopy tomorrow to band those enlarged veins to reduce the possibility of future bleeding issues.

We appear to have also turned a corner with the insurance. The liver doctor finally made the call to the right number/department to get a case opened. We’re now waiting for assignment to a case manager so we can figure out the next steps on that path. We expect to be referred to UT Southwestern Medical Center in Dallas and Becky’s ready to make a trip tomorrow. I’m skeptical things will happen that fast, but I’m also anxious to get started as soon as we can.