55 Days in Dallas

Well, here we are. We’re up to 55 days in Dallas...and counting. On the one hand, 55 days away from home seems like forever. On the other, if you would have asked me six months ago to predict when we would be on the other side of transplant surgery and starting recovery, I probably would have picked next summer at the earliest. And if you would have given me a choice last summer, I’m not sure which timeline I would have preferred.

Just a few weeks ago we were starting the process of searching for a living liver donor. And we were humbled by how many people expressed a willingness to be considered and evaluated. In a matter of days we went from thinking about the logistics of all that to being in an ICU with Becky fighting for her life while the medical team at UT Southwestern worked to find a compatible deceased liver and kidney donor. We started out by making a simple day trip to Dallas to find out if the team here thought Becky was even a candidate for a multi-week evaluation aimed at determining if she would qualify to be a transplant recipient. After only a few minutes in the clinic, Becky was sent directly to the Emergency Department to fast-track an evaluation, and she ended up in the ICU connected to continuous dialysis a few days later. My head is still spinning at how fast that all happened - not to mention all doctor and ER visits from the previous four months.

In any case, rather than reading my diary or memoirs or whatever else this post is threatening to become, you’re probably looking for an update on how Becky’s doing.

Compared to where we were a month ago or even a week ago when Becky went back to the ICU for a short farewell tour, it feels like we’re in a much better place. Some highlights of the last week:

• Becky has restarted physical therapy and took a short walk around the room today.
• We got to see two of our grandkids yesterday for the first time in 55+ days. After physical therapy yesterday, Becky hung out in a wheelchair for a couple hours and we met the kids in the lobby area.
• Wheels have started moving to get Becky to the rehab facility. There are a few medical things that need to happen including removal of a stint that was placed with the new kidney, but those conversations have at least started at this point.
• Most of Becky’s delirium seems to have been resolved. The combination of getting her body healthier, getting out of ICU, and making some adjustments to some of her meds has made a huge difference.

She’s not completely out of the woods yet. There are some things we’re still working on:

• Her heart rate is still a little elevated. Fortunately, not enough to send her back to ICU, but probably too high to start rehab.
• Her lung capacity is still pretty limited. The flow itself seems OK as she doesn’t generally need oxygen during the day although she has been getting a small amount overnight. She just tires easily because her lungs are fully expanding.
• Becky needs a lot of help standing up from the bed or chair. Some days are better than others, but she can’t stand up on her own yet. I suspect that will also need to improve before getting to rehab.
• Her blood pressure is a little high. On the plus side, that means the liver is working and in that respect her body is returning to her previous normal where she was on lisinopril for chronic high blood pressure. Some part of it may be a side effect of her medications. In any case, the docs are keeping an eye on it.
• Becky needs to find her appetite so she can get rid of the feeding tube. I think that would help the rest of her system in several ways.

All in all, it’s been a pretty decent week. It’s a little unfortunate that forward progress is slowing a little due to the weekend and holiday. In my opinion, in a lot of ways being bored in the hospital is worse than having a lot going on.

Although the pace is a little slower and the urgency a little lower, prayers are still much appreciated as we prepare for a long road of rehab to get to a full recovery.

Happy Kidney Day!

More progress. More challenges. But the best news of all is that it appears that Becky’s new kidney decided to join the party! There was enough evidence of the kidney working overnight and throughout the day that today’s planned procedure to give Becky a more permanent port for dialysis was postponed and today’s scheduled dialysis session was cancelled. If there are no new setbacks there, Becky won’t need to do any more dialysis. Woo hoo!

The general trauma of the last couple months, the stress on her body, and all the new meds are combining to affect Becky’s mental state and mood as well. Some conversations seem fairly normal, and probably more so to people that don’t really know her. Other conversations are harder because either I’m struggling to understand what she’s asking for or because she doesn’t always have a full understanding of the situation. The medical team ensures us this is normal and will improve with time.

The main medical issue right now is to eliminate all possible sources of infection as the cause of Becky’s high white blood cell count. Her count has been hovering in the upper 30’s rather than the normal range of 4-11. It may just be her body’s reaction to the new organs but infection needs to be eliminated.

There were other signs of forward progress today. Becky was able to get out of bed and take a short walk before getting in the chair for most of the afternoon. Her appetite showed signs of starting to return and we ordered lunch from Chuy’s. Less direct signs of progress included the transplant team starting the process to get rehab approved by insurance, having an initial conversation with a pharmacy tech about all of the new transplant meds, and meeting with a nutritionist to talk about some of the foods to avoid.

The last few days have felt like they’ve moved a little slow, but at least I feel like we’re moving forwards. My best guess is that we’ll be in Dallas for another 2-4 weeks. I’m not sure if Becky will need some home health care, and there will be frequent appointments for lab work as well as many return trips to Dallas. My hope is that most of them will be routine and not to address complications.

Unless there are major setbacks, my blog posts will be probably be less frequent going forward but you’re always welcome to text me or connect in any other way if you have questions.

Day 40 in Dallas

Day 40 brought a series of milestones on Becky’s road to recovery. After receiving a new liver and kidney on day 30, and going back for a follow-up procedure on day 36, we appear to have turned a corner. We had five significant events happen today. 

1. She was taken off the CRRT (continuous dialysis).
2. She had her first HD (hemodialysis or “traditional” dialysis).
3. She passed her swallow test and was placed on a regular diet.
4. She got out of bed a couple times and spent some time sitting in a chair this afternoon. 
5. Orders were placed to transfer her from ICU to a regular room. We’re currently waiting for a bed to become available.

Becky was also taken off oxygen, and the vasopressor IV meds to maintain her blood pressure were discontinued yesterday. We’re still waiting for the kidney to “wake up.” From what I understood from the doctor this morning, it’s not uncommon for kidneys that were on ice to take 2-3 weeks or longer to start working. If there are no actual problems like rejection (which there’s no indication of so far) about 98% of transplanted kidneys will eventually start working. Until then, Becky will be on dialysis.

Those that have gotten some direct texts from me over the last couple days know that it hasn’t been all rainbows and unicorns. The last couple days were kinda rough in a few ways. For those that didn’t get those updates, here’s a summary:

• Primarily, Becky was pretty lethargic and distant Wednesday and Thursday. She was watching TV, but not really engaging. She’s had a hard time completing thoughts and focusing. Some of that is still true, but she’s at least trying to hold some conversations. That comes with its own problems. :-(
• She is still confused about the details of the situation. She knows that there is still a lot of work to do, but at the same time she’s ready to go home. I have to wonder how tonight is going to go for the nurse on duty. We’re having a hard time even having a conversation about dinner without her getting frustrated with me.
• She’s really resisting her breathing treatments and doing her breathing exercises. As much as I hate arguing with her when she’s been through so much, this is one thing I’m trying to push, but she’s pushing back just as hard or harder! Pray for both of us!
• She has a very sore and weak arm that had a clot and was made more tender when they tried to “re-wire” the line in her artery.
• We need to start working on her appetite again. She’s still on the tube feed at night, but they want her to start eating during the day. It’s harder to figure out what to get her since we’re having trouble communicating (see above).

We’re not sure what the rehab plans or timetable are yet. I suspect we’ll start having those conversations after we actually get out of the ICU and into a room.

Progress is slow and mostly steady

It’s hard to believe it’s already been 5 days since Becky’s surgery. It’s also hard to believe it’s only been 5 days since Becky’s surgery. Becky’s not the only one losing track of the days. I have to double check myself from time to time.

On the plus side, her new liver is doing great. The chart on the right tells that story better than I could. Most of us are familiar with bilirubin levels and how the liver plays a role in keeping them under control. We’ve seen or had babies that looked a little yellow because the liver wasn’t quite doing its job yet. Well, during Becky’s time in the ICU prior to surgery her bilirubin numbers were steadily climbing, and her skin and eyes were getting more and more yellow. Then only three days after surgery her number was back in the green, and her normal color has returned. This is just one of many numbers that indicate the new liver is doing well.

The kidney, on the other hand, is taking its sweet time. We’re still waiting, but everyone is still optimistic that it’s just a matter of time.

Becky’s been out of bed a couple times sitting in a chair. She watched the Texas football game with her brothers yesterday. Hook ‘em! College Football Playoff bound! Hopefully we won’t have to watch those games from the hospital. She’s off oxygen. She even walked around the room a bit yesterday and she seemed to be coming out of her ICU delirium. Lots of positives in just a few days.

Last night was a bit of a setback. The doctors were trying to use Melatonin to replace her Seroquel to help her sleep. She takes Seroquel as one of her anxiety meds, but it also helps her sleep at night. I believe there are concerns about its interaction with some of her new medications which is why they’ve lowered the dose and were trying the Melatonin. However, it feels like the Melatonin was having the opposite effect on her. It was keeping her up and after two nights was leading to new confusion and some hallucinations. I think those side-effects have worn off a little as the day has progressed, and hopefully she’ll be better after a good night’s sleep. And she won’t be getting any more Melatonin.

If all goes well today, they will try to take her off the CRRT (continuous dialysis) tomorrow and transition to traditional dialysis (a.k.a. HD or hemodialysis). If that goes well, she could move from the ICU to a regular room in the next day or so. Rehab will almost certainly come after that.

She’s also been cleared to start a regular diet and ate a little bit at lunch and dinner. Not a lot of appetite, but she’s keeping down what she does eat so that’s good.

In addition to prayers for her continued recovery and minimal complications (there are almost certainly going to be some at some point), please pray that Becky has the strength, determination, willpower, resolve, self-discipline, etc. to follow the guidance provided by the doctors, nurses, therapists, nutritionists, and her family and to do the right things for her recovery and long term health. It won’t be easy for her. It will take a village.

Transplant Day +2

We’re well into the second day after Becky’s transplant surgery. There’s not a lot to report today, but I know there are quite a few of you that are looking for updates, and I appreciate your concern so here goes.

Becky got the ventilator out late yesterday afternoon. She spent some time on a BiPAP this morning, and is on limited oxygen support this afternoon. It hurts her to take a deep breath (surprise, surprise) so they’re being proactive to make sure she doesn’t develop pneumonia. She’ll probably be back on the BiPAP overnight.

She did get out of the bed and into a chair for a couple hours this morning. Physical therapy is being pretty aggressive about getting her moving. She’s been in quite a bit of pain this afternoon (again, anybody surprised?) and had some nausea. Unfortunately there are limited options for pain relief because of potential adverse effects of opioids on the new organs. They’ve been giving her what they can for pain and some meds to manage the nausea.

Other notes…

• We’re still waiting for the kidney to “wake up” and start doing what kidneys are supposed to do. That could be days or weeks or even longer and there’s no way to predict. The ultrasounds show that everything is connected correctly so we just wait for now.
• I think her delirium is a little better this afternoon, but it’s a little hard to tell since she’s in so much pain and doesn’t want to talk much. For reference, this morning when we asked her what surgery she had, and then asked her what the pillow in the photo above was as a hint, she said it was “a pig,” which when you compare it to the Arkansas Razorback logo, she wasn’t that far off.
• Apparently Becky didn’t sleep at all last night. Most likely because she hadn’t had her regular meds and the melatonin they gave her didn’t do the trick (it never has for her).
• Her color looks much better, and the doctors continue to say the new liver is working perfectly. Pretty amazing.
• Unlike the weeks before surgery, she’s maintaining her blood pressure without any support from medications - even though they probably took off more fluid than they needed to today with the CRRT dialysis. So that’s a win.

All in all, I think we’re on a good path. The doctor provided this perspective this afternoon: 

“Look at it this way. You were one of the sickest people in the hospital, and you had one of the most major surgeries you can have two days ago. Nobody expects you to be doing cartwheels at this point.”

We’ll see what tomorrow brings.

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.

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.

We’re back on the list … in fact, two lists

Well, here we are again - sort of. If you’ve been following along, you know that we’ve been in kind of a holding pattern for the last few days. And if you haven’t been following along, why not? Aren’t my ramblings more interesting than The Amazing Race or The Bachelor? Maybe not.

So where exactly are we? Let’s start with a short recap. We arrived in Dallas on October 30th for an initial screening by the liver team at UT Southwestern. They immediately sent Becky to the Emergency Room, and she was quickly admitted to the hospital and an express evaluation for a liver transplant began. By Friday, November 3rd, Becky was placed on the national liver transplant list. After being on the liver transplant list for about a week, kidney issues resulted in a short pause. Becky’s transplant status was changed to Inactive while waiting to be approved for an SLK (Simultaneous Liver and Kidney) transplant. That approval came today as did insurance authorization, and Becky is now active on the transplant list again and we begin the wait for a matching donor for both organs. That’s a lot in two weeks!

That’s the good news. It hasn’t been without some trials over the last several days.

• Becky had a feeding tube placed a few days ago and that’s been an adjustment for her system.

• She had a PICC line placed in her arm a couple days ago. The good news is that replaced a line that was in her neck. The bad news is that it appears it was initially inserted a little too far (too close to her heart) and was causing some brief V-tach (arrhythmia) events. Fortunately, it looks like that was corrected last night and no additional events have been detected since.

• Becky is tired of the hospital, tired of waiting, and just plain tired. This has started causing some ICU delirium. The symptoms are similar to the encephalopathy she had been experiencing, but this is just a result of the situation, not the increased ammonia levels she was dealing with as a result of her non-functioning liver. We’re praying that a matching donor is located sooner rather than later so that condition doesn’t worsen.

• She has been getting up to sit in a chair or take short walks on most days including today. That’s a good thing because staying active will make recovery easier. The word this morning was that transplant patients can typically expect three days of rehab/recovery for each day of waiting in the hospital. That puts us at about six weeks of recovery so far which is starting to reduce the chances of being home for Christmas.

And so we start waiting again … this time for two organs.

Stay tuned!

Trying to stay ready

Nothing new is really going on right now. The doctors continue to say Becky is doing as well as can be expected given the circumstances. She’s pretty much holding steady. She’s still on the CRRT for continuous dialysis. She’s on a feeding tube at night. They still want her to try to eat some during the day, but she doesn’t have much of an appetite. She had one piece of MOD pizza for lunch yesterday and I think she had a few bites of her dinner. I’m settling in to my new remote work office (shown in the photo).

The doctors continue to be proactive whenever something seems to be trending in the wrong direction. Becky’s sugar levels were starting to spike from time to time so now they’re monitoring that more closely and she’s getting regular insulin. As she spends more time in bed, her battle with reflux gets more challenging. The doctors are working on meds to help that as best they can.

I think the biggest medical question right now is why her CRRT filter continues to clog. If the nurses don’t see it coming soon enough, they’re not able to return her blood to her before the machine shuts down. That generally leads to giving her another unit of blood in order to replace what was lost - something they would prefer not to do any more than they have to. I believe she’s had to have three units of blood so far. At this point, they are planning to do some more tests on her blood to see if there is some medical anomaly in her blood chemistry that’s leading to the filter clogging. The ICU doctor tried to explain it to me, but it went over my head.

Waiting is hard. Becky is getting tired of having tubes connected, getting poked and prodded, and generally being told what to do. She’s looking forward to Tuesday, but that’s just the day she becomes active on the transplant list again. As much as she would like that to be the last day of waiting, there’s no way to know. This could go on for some time until a matching donor is offered and accepted.

Continued prayers are welcome. Feel free to reach out to me if you want to coordinate a phone call with her.