One Year Transplantaversary

This will be a short post. I promise.

Today, November 28th, Thanksgiving Day, is Becky's one-year transplantaversary. I can't think of many things we could be more thankful for than the fact that she is here to celebrate it with us. We both continue to the thankful, grateful, and appreciative of all the support we've received over the last couple years. We feel blessed and thank God daily that a donor was found so that Becky could continue this journey with us.

We did have an awesome Thanksgiving dinner with all of our kids and grandkids, and all of Becky's brothers and their spouses. Her brother, Steve, and his wife, Peggy, flew in from California to join the celebration. Becky had no idea they were coming, and she was completely stunned when she answered the door and saw them there. It was a great day all around.

I also have some short updates on a few side-trips we've been travelling lately.

First, Becky has shoulder replacement surgery scheduled for December 12th. Unfortunately, this does not appear to be the solution for all of her back/shoulder/arm pain. She also recently had an MRI and has an appointment with a spine specialist at UTSW on December 3rd. We once again ask for prayers that all goes well with the upcoming appointments, surgery, and recovery.

Second, due to some ongoing short-term memory and balance/equilibrium issues that we discussed with Becky's transplant team earlier this week, she's also being referred to a neurologist to do some further evaluation. At this point, there doesn't seem to be any major concern that warrants extreme urgency, so the initial appointment is scheduled for after the first of the year. Stay tuned. The adventure continues.

Finally, as I mentioned in the previous post, I have been working on writing articles to post on the Patient Worthy website. The first article, An Unexpected Liver Transplant – Part One, which summarizes our journey from Becky's fatty liver diagnosis to her liver failure, has been posted. My second article has been submitted for review. Please feel free to share links to these articles with whoever you think might benefit or just find it interesting.

Happy Thanksgiving and Happy Transplantaversary!

Becky and Her Brothers 

One Year Later

This week marks a couple milestones in the Clark household. July 21st was our 40th wedding anniversary, and July 25th is the one-year mark of our first trip to the emergency room for Becky's liver issues. She had over eight liters of fluid drained from her abdomen on that day as her liver was already well into the cirrhosis stage. One year later it's interesting to look back at my first post:

I wasn't sure if this had something to do with her liver - although I suspected it did. 

[T]he fluid buildup will probably continue to be a problem.

We had no idea of the road ahead. Well, primarily, we had no idea of the speed that we would be travelling down that road. Unfortunately, neither did Becky's hepatologist, so we were completely unprepared for most of the speed bumps, detours, and roundabouts we came to along the way. Several studies that I've read suggest that an average rate of progression through the various stages of liver disease is about 7 years per stage. Becky went from the first stage, NASH (non-alcohol-related steatohepatitis), through fibrosis and cirrhosis, and finally to end-stage liver disease in a matter of months. Our heads were spinning.

One measure of the health of a liver that has started to show signs of fibrosis is something called a MELD score. The MELD score is a standard calculation primarily based on several numbers from blood work that indicate the overall health of the liver. This score is used to give an estimate of the patient's expected three-month survival rate, as well as being used to prioritize the patient on a transplant list. Once Becky was admitted to the ICU in Dallas last November, her MELD score quickly rose into the 30's, which would suggest an average three-month survival rate without a transplant. As fast as things had already progressed last year, I suspect that would have been a generous estimate. Fortunately, Becky received that transplant in November, and we can move on to a more uplifting part of the story.

In contrast to a year ago, or even a few months ago, events continue to remind us of the progress Becky has made on her recovery: 

• A few weeks ago, Becky bought groceries for her brother and left them on his porch as he was dealing with another round of COVID - a sign that she's not just surviving but is back to being able to take care of others.
• We also had a chance to babysit our newest grandbaby a couple weeks ago, and we tried to have three of the grandkids spend the night a week ago until we had an outbreak of strep throat in the house. Side note: Everybody, including Becky, is on the road to recovery from that.
• I was able to flex my work schedule so we could go to a minor league baseball game on July 3rd. We stayed for the whole game and enjoyed the post-game 4th of July fireworks show. This might have been the first time since last summer that I was able to flex my work schedule for fun and not to make up for doctor visits, hospital stays, or time at one of the various emergency rooms we've had the opportunity to visit.
• Becky has been able to do more cooking - for just the two of us as well as for the kids when they come over to visit.
• We were able to make a short trip to Oklahoma to visit my dad over the July 4th weekend.

Another sign that we've turned the corner from unpredictable trips to the emergency room and unexpected hospital stays to a more regular routine is that we are seriously considering making a short trip in the near future to relax and celebrate our 40th anniversary! It feels great to be planning instead of reacting!

A lot has happened in a year, but we really do feel like we're finally getting back to something closer to normal. The doctors are still adjusting meds. We're still learning that Becky doesn't have the stamina that she used to. We both plan to start some regular exercising and walking. We're working towards a goal of being able to take the kids and grandkids to Disney in the next year or so, so we both need to get in better shape. All of that is certainly more encouraging than seeing if we can string together a couple weeks without a trip to the ER or hospital.

In closing, I have to once again say thank you to all the prayer warriors out there that helped us through this journey. We don't even know some of you. You may have heard Becky's story from somebody at work or church or from another of our family members, and you joined her fight through prayer. Whatever brought you into our story, we feel you. We appreciate each and every one of you more than you will ever know.

Six Month Transplant Survivor

Wow! Just wow! It’s hard to believe it’s been six months since Becky’s liver and kidney transplant! As I’ve said many times, the road has certainly not been straight or easy. There have been many bumps and detours and roundabouts. The latest adventure is actually a crack in the road. More on that later. For now, fair warning that this blog post will be a bit longer than most.

The road has actually been considerably smoother and manageable lately. In my last post I mentioned that we were starting to track a new trend… normal work weeks without trips to the Emergency Room or hospital. Well, unfortunately that trend didn’t hold for very long. Within a week Becky was back at the ER and spent a couple days in the hospital with another bout of stomach/GI issues. After a phone call to a UTSW Pharmacist, we determined the most likely cause was a recently added iron pill. Pulling that back out of Becky’s daily med list put her back on the smoother road.

Then we came to a crack in the road. Overall, Becky had been feeling pretty good compared to previous months. In fact, she felt so good that she decided to take a good soak in the bathtub. It had been over six months since she had the strength to get in and out of the tub. And just as we were thinking this was another milestone on the road to recovery, Becky heard a crack while she was leaning over the edge and cleaning the tub. Nope, it wasn’t the bathtub. It was her rib. She re-injured one of the same ribs she cracked twice before in the last three years. We’re still waiting on the official results of the X-ray, but whether cracked or bruised, there’s no question it hurts. On the plus side, it was a short trip to the ER to make sure there wasn’t anything else to be concerned about - not that a rib injury isn’t enough, but it was right where the liver is, so we wanted to be sure.

So, again, things are much better. In fact, we were able to join the Eichinger family (Becky's mom's family) at the annual family reunion on Sunday. It was another reminder of how much has happened in the last year. At the time of last year's reunion, Becky was just beginning to show signs that her non-alcoholic fatty liver disease was progressing into something more. Her first trip to the Emergency Room for a paracentesis to drain her ascites fluid building up because of her failing liver was still a couple months away. After that the disease progressed into liver failure, the liver failure damaged the kidneys, Becky spent a month in the ICU waiting for a donor, she received a donated liver and kidney, and then spent another couple weeks in ICU recovering plus another month in the hospital and rehab before finally coming home. And of course, the recovery has continued for the last few months at home. What a whirlwind!

We are still working on how to manage a few things. Becky's iron level continues to be low, and her kidney numbers (primarily the creatinine) continue to be a little high. We've been working with the team at UTSW to try to come up with ways to manage both of those with resources and facilities here in the Georgetown/Austin area rather than having to continue making trips to Dallas or to the local ER. We have another round of regular checkup appointments in Dallas this week and hope to get more good news there.

Overall, the road keeps getting a little smoother and little more predictable every week. Becky is starting to catch up on appointments that she's missed over the last six months. Well, both of us are. We went to the eye doctor over the weekend. Becky's vision changed quite a bit as a result of all the stress on her body. As for me, I've started to develop cataracts and at least one is getting close to being ready to remove. Yay! Dentist appointments and other annual checkups are in the works. It's all part of getting ready for a trip to Disney World with the kids and grandkids sometime in the not-too-distant future. I think we both feel that will be the point where we can say the bulk of the stress, the pain, the struggle, and everything else is behind us.

One final note for this post. If I haven't mentioned it before, and I probably have to at least some of you, I do plan to convert this blog into a book at some point. I'm not quite sure what the plot will be yet, other than the obvious, but I'm sure I'll come up with something. Becky has said she wants to write the forward of that book when I get that far.

And I couldn't close this out without saying it again, thank you to all of you that have been and continue to be prayer warriors throughout this journey. The journey continues...

Eichinger Family Cousins

The Lego Road

A couple of you have asked recently how Becky is doing. You've noticed that I haven't posted an update lately. You may be wondering what road we're on this week. What if I told you that the photo I picked for this post is a Lego chain reaction my grandson and I spent a few hours creating last weekend (not quite a Rube Goldberg machine, but close)? Would that give you a clue? 

If you haven't connected the dots, the fact that I had a few hours to spend some quality time working on a project just for the fun of it is a sign that things have improved ... a lot. Last weekend ended what had been a streak of four consecutive weekends that we spent time in an emergency room or hospital, sometimes for days and once for an entire week. It seems that finally, fortunately, somewhat surprisingly, and almost amazingly, Becky seems to have turned the proverbial corner. And although we had a little bit of a setback with a midweek med mix-up (Becky's transplant coordinator's fault, not ours), we haven't been to a hospital or ER for two full weeks. Shh, not too loud. Now we're starting a new streak - a streak of weeks with no hospital time and where I work a fairly normal schedule. Yes, I'm knocking on wood as I write this.

Instead of spending time in a hospital last weekend, we had some family time with all the kids and grandkids enjoying a belated birthday lunch for Becky at Longhorn Steakhouse. We had more family time on the days before and after (including Lego building), and we're looking forward to more this weekend. Becky's nausea and GI issues finally seem to be under control. As a result, her appetite is improving almost daily. Thank God! Literally ... we thank God!

Becky even felt good enough this week to have lunch with her brother and cousin, set up an appointment with physical therapy, and shop for some new clothes (since she's lost about a third of her body weight in the last six months).

So, there you have it. Becky's doing better and we're praying the trend continues. Is the journey over? No, far from it. Are we on a better road? Yep, it feels like we're finally off the gravel road out in the country where there were no road signs to guide us, and back on pavement (pavement built with Legos).

Thank you, thank you, thank you to all of you that have been prayer warriors with and for us. We appreciate you more than you'll ever know. 

P.S. Don't close the book. The story's not over. We just feel like we're starting the next chapter.

 

Bluebonnet Update!

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

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

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

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

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

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

Happy Easter! Remember what we’re really celebrating!

Round and Round and Round

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

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

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

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

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

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

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

On the Right Road

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

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

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

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

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

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

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

We're Home!

It's been a long day (even longer after our appointment in Dallas was rescheduled to an hour later), but we've made it to yet another milestone. After our one-day trip to Dallas turned into 85 days, we are finally back in Georgetown! Don't assume this means everything is back to normal - or whatever normal used to be. It's not. Far from it. Very far from it. But, compared to last summer, it at least feels like we're on a trajectory of improvement rather than a downward spiral.

Our last weekend in Dallas was filled with plenty of activity. Becky took a little tumble early Saturday morning so we ended up taking a farewell tour of the UTSW Emergency Department. She’s OK, just a little sore for a few days. Other than that, I packed up the hotel room (it’s a good thing we traded my Cruze for the Durango a couple weeks ago!), and I tried to work as many logistics and order as many supplies (and groceries, and Christmas presents) as made sense so we would have most of what we needed waiting for us at home. It was mostly successful.

Our last appointment included some conversations about Becky’s general lack of appetite and changes in her taste buds. Although not the case for the majority of transplant patients, it is not uncommon or unusual for patients to go home with the Dobhoff tube. In fact, there were two other patients being trained on how to use the Dobhoff tube on the day we left Zale rehab last week. It’s not ideal for her general nutrition and health long term, but not a major concern right now. It’s something for her/us to keep working on.

I'll be busy putting things together and getting things in order this week while we work on figuring out how much self-care Becky can do at home, how much help she'll need, and where that help will come from. I'll be trying to squeeze in a few hours of work, but I'm sure it won't be one of my most productive weeks!

Physical, occupational, and speech therapy evaluations are scheduled in the next couple weeks. We'll see what those recommendations are so we can start planning those regular out-patient therapy visits. Lab work will need to be done once a week at 8:20am every Wednesday. And we'll have to make monthly trips back to Dallas (at least for a few months).

Challenges certainly remain after almost three months in a hospital (about 40 days of that in ICU), but we're glad to continue the journey from our own house in Georgetown where we can sleep in our own bed. Blog posts will likely be a little less frequent although I do intend to continue to document the journey. For those following along on Facebook, there might even be a few non-recovery related posts (if I have time). You never know.

Thank you to our kids and grandkids for keeping our house in one piece and taking care of Spicy (our cat) while we were away!

Thank you to the girls for cleaning house this past weekend!

Thank you to Hayley (with help from a few adults) for decorating the tree so it would be up when we got home!

Love you all! It's great to be home!

Happy Discharge Day!

Well, we’ve made it to another milestone. Becky’s been released from rehab. I have to say, this day and the days leading up to this have come with as much stress as there has been at almost any other stage of this journey. It’s a lot. We are not simply returning to normal. We are just marking the point of starting another stage - one that may be harder in some ways because we’re not just sitting back while Becky’s being taken care of. We are now responsible for a whole list of new things that we haven’t been responsible before.

Unfortunately, we’re not headed back to Georgetown yet. The transplant team wants us to hang around Dallas for another week or so to make sure we have all the things and all the knowledge we need during this stage, and that there are no medical surprises without 24 hour nursing care. Looks like that will also mean a week without any therapy while we’re in the hotel in Dallas but we may have a few appointments to go to so that may be our therapy for the next week or so.

We’re expecting plenty of therapy once we get back to Georgetown. Becky will have out-patient therapy but we don’t have a specific schedule or location just yet. Since I will likely need to start spending time going into the office for work in the near future, we may need to enlist some help for getting Becky to those appointments. Worst case, we may need to hire a caregiver to help us transition. We’ll see how things play out. It’s hard to not plan ahead, but it’s hard to plan ahead with so many unknowns.

Becky still has a feeding tube since her appetite hasn’t decided to return. That means she’ll be getting her nutrition and most of her medications via that tube. That may also be a schedule challenge depending on whether Becky is comfortable administering her own meds, and her ability to do so. We have a lot to learn. It’s all a bit overwhelming. No, check that. It’s a lot overwhelming.

Becky’s strength and her ability to be independent continue to improve, but they are small steps. She still has a fair amount of difficultly getting up from a low chair. She can walk the halls at the hospital OK, but it’s a slow process and she has to take breaks. She still has a lot of work to do to build her strength and endurance back up to where the walker and wheelchair can be donated to somebody else in need. That will be another milestone.

If all goes well, we should be back in Georgetown sometime in the next week or so. We continue to be humbled by all that are following our story, thankful for all the medical professionals, and appreciative of all the support. We also continue to ask for prayers as we figure out how to navigate the logistics of this next phase - especially in light of the fact that it looks like my employer is running out of remote work tasks for me.

We’re looking forward to seeing some of you in the near future!

P.S. It’s a good thing I wrote most of this as a draft over the weekend, because today was incredibly busy and we didn’t get to the hotel after 7:00 tonight!

Starting the next leg of the journey

Becky’s taking another step toward ending our extended retreat in Dallas and heading back home. The medical and surgical teams have felt she was ready for rehab for a few days now, and the team at Zale Rehab facility has finally agreed she’s ready and they have a spot for her. And yes, as the photo suggests, the facility is named after the same Zale family as the jewelry stores.

The length of this section of the road will depend on how quickly Becky is able to build some strength back up in those muscles that have gone largely unused for the past two months. I suspect that won’t be an easy task, but hopefully the incentive of getting back home and seeing family on a regular basis will be a great motivator.

A lot of things have improved over the last week. Becky’s much more aware of everything going on. She doesn’t remember a lot of specifics from the last couple months, which in many ways is probably a good thing, she’s much more clear about where she is and what the situation is. She’s also slowly regaining strength and starting to walk around again.

Other than her physical strength, the next biggest thing to work on is her anxiety. The combination of lots of new things, new people, new place, new expectations is taking a bit of a tole on her mentally, but we’re working through it, and asking for whatever help UT Southwestern can provide.

Your continued thoughts and prayers as we embark on this next stage of the journey would be much appreciated.

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.

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.

Back on the road

What a difference a couple days make. Actually, it was just a few hours. Yesterday afternoon Becky was still on the ventilator and there was pretty ugly stuff coming out of her lungs. Today it was placed on “Standby” and as of this evening it’s no longer in her room.

Yesterday afternoon Becky was still on mild sedation and the respiratory therapist admitted this afternoon that Becky wasn’t in a great place yesterday. However, a night’s rest and a nap this morning seems to have done wonders. There will still be some breathing treatments and she has some breathing exercises to do, but she’s just on minimal oxygen at the moment - no machine.

The delirium doesn’t seem to be a problem this evening. Crossing my fingers that she’ll be just as clear headed tomorrow morning when I return. Liver is still looking great. Unfortunately we’re still waiting for the kidney to wake up, but the biopsy showed no signs of rejection so no major concerns there at the moment. We’ll just keep waiting for now.

If there are no surprises overnight, she should be able to start a clear liquid diet tomorrow, physical therapy will be by to get her out of bed, and we may even start talking about a plan to get her off the CRRT and start traditional dialysis (unless her kidney wakes up, which would be even better).

So, after five weeks in the ICU we seem to be back on the road to recovery.

Thanks to all for the prayers! Keep ‘em coming!

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.

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.

Moving from end-stage to the next stage

Today was our first appointment with our new Physician’s Assistant at the liver doctor’s office. We learned a lot, but we also learned that we have a lot to learn!

Most importantly, we learned that Becky’s MELD score (the number that indicates the overall health of her liver) went up from 12 to 25 - out of a range of 6 to 40. Although the MELD score could go up and down a little, the trend doesn’t make it look like it’s likely it will come back down. The MELD score and other symptoms indicate that Becky’s liver has become decompensated and reached the end stage liver disease stage which means it will likely not recover.

At this point, our next stage is likely to find a liver donor if/when we get approved for that. There are two paths to finding a liver donor.

Option 1 : Get on a liver transplant list. This option puts us in a queue with other patients waiting for a liver from a deceased organ donor. The higher Becky’s MELD score becomes, the higher she goes on the list. We won’t really know how long that wait could be until we start talking to a liver transplant center.

Option 2 : Find a living donor. This option doesn’t require any particular MELD score. It involves finding a family member or friend that is willing to donate half of their liver. From what I understand, both halves will regenerate to normal size within about 6-8 weeks.

While we still have a whole host of questions for both our insurance company and for the medical center we choose, there a few things we learned today:

• There are only four liver transplant centers in Texas - in Dallas, Houston, and San Antonio. There are none in Austin.
• There are two centers in San Antonio. The one that takes our insurance does not do transplants from living donors.
• The transplant center in Dallas takes our insurance and does transplant from living donors.
• I believe the center in Houston also takes our insurance and does transplants from living donors.
• We would be making many trips to whichever location we pick before and after an actual transplant.
• The recipient’s insurance will generally cover the costs for both the recipient and the donor.

In addition to the transplant information, we also learned Becky’s most recent blood work points to a few other liver decompensation issues we need to address:

• Since Becky doesn’t seem to tolerate the diuretics, we don’t have any other options to reduce her fluid retention other than limiting her fluid and salt intake. The goal is to minimize the salt intake to as little as possible.
• Since Becky’s system doesn’t tolerate the beta blocker, we need to pursue getting the varices (enlarged) veins in her esophagus banded and/or obliterated.
• Her blood work also showed an elevated white blood cell count, reduced electrolytes, and signs of anemia (lowered platelet count likely due to an enlarged spleen). She’s being referred to a hematologist to follow up.
• Given Becky’s intolerance to medications that could help manage the fluid buildup, the paracentesis is something she will need to deal with for the foreseeable future, so those orders were extended for a year.

We’ll be making a decision on which medical center we want to use this weekend and notify our doctor on Monday. They will then send a referral and the process will begin. And so, the next stage of the journey begins.