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.

Surgery day notes

8:00am - Becky's headed back for surgery. Estimated to take about 6 hours.

8:50am - Surgery officially began.

10:45am - New liver is in place and perfusing (blood is flowing through it) and Becky is doing fine.

Noon - Closing up the liver portion of the surgery. Getting ready to bring in the kidney team to start on the kidney transplant.

1:00pm - Kidney is in place. All still going well. Expected to be out of surgery around 2:00-2:30.

2:00pm - Kidney team is closing up. New kidney is already working. Everything seems to have gone according to plan. Becky should be back in the ICU in 30-45 minutes.

3:45pm - Last planned update for the day. I'm in the room with Becky. Lots of monitoring for the immediate future but so far everything's working as it's supposed to. She'll remain sedated for tonight. Plan to wake her tomorrow. 

Thanks for all the prayers! Now the next phase begins. 

It's time! (we think)

We finally got the call!

Well, it wasn’t exactly a call, but we were told early this morning that the liver team might have an offer. We weren’t really sure what that meant. They said they were waiting for more information so they could complete the evaluation, likely send somebody to visually inspect the offered organs, coordinate two surgical teams, schedule a private jet for transport of the organs, and who knows what else. Once again, we’re so extremely thankful for the potential donor.

I didn’t post this earlier this morning because there still seemed to be a lot of moving parts to be coordinated and boxes to be checked. As the morning has progressed things have firmed up a little. The liver team has checked the scans and biopsy and everything looks good so far. The donor does have Hepatitis C, but the team assures us that it is very treatable and that they frequently accept Hep C positive donors with no long-term complications.

The UT Southwestern teams are currently coordinating with the family and team of the donor who is currently on life support. Assuming the final visual inspection of the organs goes well this evening, we have a scheduled surgery time for 8:00am tomorrow morning (Tuesday).

I’ll post updates as I’m able. Let me know if you prefer text messages tomorrow. Text messages might be more frequent but less comprehensive. :-)

And the next phase of the journey begins tomorrow. We’ve already received some previews about potential complications and having to wait for the new organs to “wake up,” but I’ll leave all that for a future post.

Prayers for everything to move smoothly for the rest of today and successful surgery tomorrow would be greatly appreciated!

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.

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.

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!