Navigating the Speed Bumps

This seems like a good time for me to bring out one of my favorite quotes from my favorite Hobbit.

"Go back?" he thought. "No good at all! Go sideways? Impossible! Go forward? Only thing to do! On we go!"

—Bilbo Baggins        

Becky continues to find post-transplant speed bumps, or maybe they find her. Either way, we continue moving forward because it's the only thing to do. 

The two biggest speed bumps at the moment are how the immunosuppressant medications are affecting Becky's kidney, and properly treating her anemia.

Becky's primary kidney doctor at UTSW decided that the immunosuppressant medication was affecting her kidney function enough that she needed to make some adjustments. It's not that this wasn't a potential problem all along or probably even a surprise to the transplant team. Everybody's system reacts differently, and the team was trying to make sure we had tried everything else and given it enough time to decide the overall trend was headed far enough in the wrong direction before making a change.

Everything has pros and cons, and this change is no different. The new medication will supplement the current one, but allow the current one to be at a lower dose. That should help Becky's kidney. However, the new medication has its own potential side effects, some of which have already started to manifest. Time will tell if this new mix is a good alternative or if we'll have to explore something else.

On the anemia front, progress has been made, but it also came at a cost. The good news is that Texas Oncology appears to now be fully on board and ready to take full ownership for managing Becky's anemia. She had an iron infusion last month, and overall Becky seems to have a bit more energy. However, her most recent bloodwork didn't really show much of an improvement so we'll see what Texas Oncology recommends at the next appointment in a couple weeks.

The cost of not getting everybody on the same page sooner so treatments could have started earlier is that Becky does still have some moments where she feels a little "off" and sometimes a little light-headed. It's similar to low blood pressure symptoms, but we've been monitoring that and her blood pressure seems ok. She had one episode of light-headedness while in the kitchen and she fell to her knees. She banged up one knee pretty good and bruised/cracked rib(s) again as she fell backward into the pantry door frame. She's doing better now and has been able to babysit grandkids a couple days so that helps with the pain. :-)

Through it all, we're still moving forward. The road has included a fender bender, a plumbing/flooding issue (and the resulting cleanup), cataracts (and upcoming surgeries), and probably another speed bump or two I've already forgotten. But we've also been able to continue down the road. We've been able to spend time with kids and grandkids including hosting an Easter Egg hunt. Becky's brother and sister-in-law (Steve and Peggy) stayed with us for a few days while visiting from California. Becky's cousin from Oklahoma spent the night before joining all of us at Becky's annual family gathering in Cameron. And I can't leave out the fact that we've enjoyed watching the San Antonio Spurs on their playoff run!

Maybe one of the best signs that Becky is still moving forward is that fact that she's returned to the sewing room. She sewed some curtains for Elizabeth's bedroom. After that, she decided to tackle a quilt that she had started pre-transplant. She was able to finish it and I was able to deliver it to my mom in Florida. Now she's looking forward to working on some new sewing projects! Yay!

Go forward? Only thing to do! On we go!

Twists and Turns Continue

Just in case we had started to think Becky's journey was all smooth sailing and everything had returned to normal at this point, we've been reminded over the last several weeks that her journey is not the same as everybody else's. Her normal won't ever be the same as most people's normal. For now, let's just say that this year has started out with its share of twists and turns and unexpected pit stops for both of us (consider that a bit of foreshadowing).

In general, Becky's intestinal problems have been less severe than they were last year. We did make one trip to the ER for a suspected SBO (small bowel obstruction), but it more or less resolved itself with an overnight stay. She's had a couple other recent episodes where she felt like she was headed in that direction, but she managed to will herself through them avoid more ER visits.

The bigger problem so far this year has been a combination of a virus of some sort and her anemia. Becky came down with what started out as a cold in late January. She most likely picked it up somewhere along the way during our short trip to Florida. After a making the rounds to the doctors - one urgent care visit, one after hours clinic visit, and one PCP appointment - with diagnoses of a cold, bronchitis, and "coarse" sounding lungs, she eventually ended up in the ER in late February. While there, she was diagnosed with dehydration and AKI (acute kidney injury), and was admitted to spend a couple days getting IV fluids and for general observation.

After she came home, she was still fatigued. Her regular bloodwork she does for her transplant team the next week showed she was still dehydrated and still showed signs of anemia. All this on top of some kidney bloodwork numbers that still didn't look normal to me. We didn't really get all those results until a Friday afternoon a couple weeks ago. We sent several messages to doctors to determine the best next steps and by the following Monday they had suggested we head to UTSW in Dallas for an in-person appointment and that we schedule an ultrasound on Becky's kidney. That turned out to be a bit of an adventure, but we eventually coordinated it so she could get the ultrasound on the same day while we were at UTSW.

We had a good conversation with the kidney doctor during that visit. I brought up some of my own concerns about the trends of some of Becky's kidney numbers. The doctor was less concerned than I was about some of them being out of the normal ranges. She made the very valid point that "normal" ranges don't necessarily apply to a transplant patient with only one kidney. She did want to run a few more tests since we were there so she could rule out a couple other possibilities like a UTI and also check for organ rejection markers.

Within a couple days we had another set of test results. Everything looked OK. The doctor said there were no changes to Becky's medications or routine required - other than she needs to drink more water. There was no mention of rejection concerns, and no abnormal results from the ultrasound. She'll probably be back on a schedule for more frequent bloodwork for a little while just to be on the safe side.

We are still working through some things with Texas Oncology regarding Becky's anemia and bloodwork numbers related to that. She still has a fair number of days where she's tired and worn out. Texas Oncology had cancelled her March appointment because the doctor wasn't available (or something like that). It was a little unclear. We do have something on the books for April and I plan to go with her so we can make sure we both understand the situation and the plan forward.

On a more positive note, Becky has started to get back into her sewing room. She's picking up the pieces (literally) from a quilt she had started before her health degraded to the point where she couldn't continue. She had been hesitant because she just wasn't sure if she could still do it. After getting started, she's enjoying it and even said she was looking forward to getting back to sewing and quilting.

At the end of the day, we're still both extremely grateful for the transplants and the chance to continue life together - even if the road has a few more turns and pit stops than we'd like. Thanks again to all those that have supported us and been on the journey with us.

Navigating the maze

As we approach Becky's one-year transplant-iversary, I really don't have much new to say about Becky's health from a transplant perspective. Her liver continues to function just as if it were her own healthy liver. The medical team is still monitoring some things related to the kidney and her white blood cell counts, but nothing too concerning. Mostly, things are quiet on the transplant front. There are a few other things that I'll mention though as we continue to navigate the (corn) maze of the recovery process.

Becky's shoulder started giving her problems a couple months ago. It's been getting progressively worse with the pain spreading across her back and numbness down her arm into her fingers. It got to the point where she's started getting more tests done. The initial X-ray showed significant arthritis. Unfortunately, most of the medications to treat the pain from this type of joint issue are off the table because of her transplants. The first doctor suggested that a shoulder replacement may be the only way to address the pain and referred us to a surgeon. At this point we started getting the transplant team involved.

In the meantime, she saw an orthopedic surgeon. When she described the pain and also mentioned she has numbness and tingling along the back of her arm and in her fingers, he suggested we slow down a bit. He was pretty confident that the arthritis would not cause those symptoms, and his office was able to get an MRI approved to see what other nerve issues maybe be at play - in addition to the arthritis. The MRI is scheduled for next week.

The UTSW medical team would prefer Becky not have surgery until at least a year after transplant, which is only a month away. I'm not sure what the actual criteria will be, but I suspect the fact that many of her blood cell counts are outside of the normal range might be a factor. We're also waiting for a final report on whether she's still fighting the CMV virus. She has a phone call with an infectious disease doctor in a couple weeks.

At the same time, the UTSW team asked if we would be OK with seeing an orthopedic doctor there instead of being treated in Georgetown. When we said we were, they started the referral process. We had an appointment on Monday. This orthopedic doctor recommended the shoulder replacement and felt additional tests regarding nerve issues could happen in parallel. Becky had a pre-op CT scan before we left Dallas, and a tentative surgery date was set for December 12th. I say tentative because the transplant medical team has to approve, and Becky is also on a cancellation wait list which could potentially move the date up (once the transplant team approves). So, our tour of UTSW facilities and doctors continues.

Oh, in the meantime, Becky was diagnosed with a UTI over the weekend. Hopefully we caught that soon enough for it to be treated without too many extra complications.

Finally, we're starting a side-trip on our little journey. This side trip currently has a couple stops that aren't at UTSW or with doctors, but they are related Becky's liver issues and transplant. Over the last several months, we come to feel strongly that we need to be sharing Becky's story to help others in whatever small way we can.

The first stop is publishing our story on a news and information web site serving patients of rare diseases - PatientWorthy.com. In fact, Patient Worthy posts patient news and stories across a whole host of social media platforms. I submitted the first of what I plan to be three articles about our journey, and it scheduled to be published soon. I think that means I'll be able to officially claim I'm a published author.

The second stop is potentially getting involved with a patient engagement company called Snow Companies as patient advocates. It's still early in that process, but it's moving forward as they review our story to determine if and how we might get involved to help other liver disease patients.

I think that's all for now. I hope so. I need to find my way out of this maze.

From the Tower to the Garden

As those of you that are Facebook friends of either of us know, we recently took a trip, an actual vacation, last weekend. This was not related to Becky’s transplant in any way. No doctors were involved. Given the balancing act we’ve been doing over the last year between doctors, family, and work, this was quite an accomplishment. That’s Balanced Rock at Garden of the Gods in Colorado Springs in the picture. Balancing act. Balanced Rock. Get it? Moving on...

This vacation was a dual celebration. We were not only celebrating the continued progress Becky is making in returning to her former self, but we were also celebrating our 40th wedding anniversary. We spent three full days (plus travel days) in Colorado Springs. We visited Pikes Peak, the Garden of the Gods, and Paint Mines park.

Our last vacation was pretty much exactly three years ago. We went to South Dakota to visit Mt Rushmore, took a drive over to Wyoming to see Devil’s Tower, and had several other excursions planned. Devil’s Tower was effectively the end of our vacation as Becky fell and cracked a rib while trying to get the perfect picture. So, put a pin in this. Our last vacation included a trip to Devil’s Tower and led to an Emergency Room visit.

Soon after that vacation we started to prepare for another move. Early the next year, I had a new job back in Austin and we were selling our home in Illinois. Becky did an amazing job packing up that house. She was a warrior, spending countless hours packing boxes, donating, selling, cleaning, and everything else. At that time we had no idea that her non-alcoholic fatty liver issues would turn into complete liver failure and a dual organ transplant within the next year or so.

Now it’s three years later (from the Devil’s Tower vacation). Although I won’t be so bold as to predict this marks a complete end to Emergency Room visits, this vacation does symbolize an end of sorts to what has seemed to be an almost endless stream of doctor and ER visits over the last year. Enough so that we felt like we could plan and take this vacation. And as another mark of progress, Becky was able to do her traditional pre-vacation housecleaning without feeling completely exhausted. Ironically, or symbolically, or whatever term seems to fit, this vacation included a visit to the Garden of the Gods. And even though we both only believe in one God, it still feels like a fitting bookend for the two vacations and the last three years. Devil's Tower. Garden of the Gods. Get it? Ok, I'm just about done. 

So, here we are. Becky's getting stronger. We're figuring out what her limitations are. We're starting to recognize signs of things being a bit off - so we can try to avoid ER visits. And most importantly, we're moving on with life and enjoying time with the kids and grandkids. Thankful and grateful that she's come this far when some days it seemed like we might not ever get here.

The two biggest takeaways from this whole trip were first, Becky has been consistently feeling good enough for us to plan a vacation, and second, we made it through the entire vacation with no medical issues to report!

And here's a link to the pictures!

For those keeping track at home, we are about 2-1/2 months away from Becky’s one year transplant anniversary. What a journey it has been. Thank you for joining us on the ride.

Ups and downs continue (part 2)

Given the way things have gone over the last few weeks, it seems only fitting to use the same blog title as I used exactly one year ago. Yes, we are in a much, much, much better place than we were one year ago. However, the ups and downs do still continue. If I were to chart how Becky feels on a daily basis (physically and mentally), it would probably look something like the chart on the right. This chart isn't that. It's actually the stock market performance over the last year. But for those of you that understand how that can be an emotional roller coaster, this gives you an idea of where we're at. The good news is that much like the stock market, things are generally on an upward trend since last November. If you happen to be one of my Facebook friends, you'll understand that this plot similarity is simply coincidental correlation, not causation - i.e., Becky's health does not depend on the performance of the stock market, or vice versa.

First, some quotes from last year's blog posts around this time:

We've had our ups and downs this week.

On the plus side, her blood pressure is back up over 100.

At some point this may lead to a possible liver transplant, but for now we're just trying to address the day to day.

I suspect we have a long journey ahead.

This year, Becky's liver is functioning absolutely great. Blood work continues to show the main numbers are all within expected ranges. We're still working on getting her white and red blood cell counts up, and she's started some new treatment (injections) for that. She was also diagnosed with a couple different viruses over the last few weeks and she's back on a medication to help fight those. The transplant team has also lowered her immunosuppressant meds a bit to allow her body to help fight the viruses. This has led to the development of "donor specific antibodies" (DSAs), which is a medical term indicating her body is showing signs of rejecting the new organs (likely because the immunosuppressants were reduced). This doesn't feel like an urgent problem because they don't plan to retest for DSAs until November, but it is yet another "thing."

The new medications and/or injections also led to a drop in Becky's blood pressure. After a few days of her complaining of feeling a bit off and a little dizzy, we started monitoring her blood pressure and she was around 90-100 over 45-50. So, more adjustments to medications. And it was probably the first time Becky ever heard somebody tell her to "liberalize salt intake." We continue to do the Rx dance. Send more of this. Don't need this. Change the strength of that. Blood pressure is back up.

At this point we're rapidly approaching a year since the transplants. Hard to believe, right? We expected, and the doctors believed, that things would have pretty much smoothed out by this point. The intestinal problems and the viruses have extended that timeline a little. When I asked how typical these ups and downs are at this point, Becky's transplant coordinator said, "I agree it's been a bumpy ride." (so, not typical)

Overall, it's still an upward trajectory. We've started taking walks around the neighborhood in the evenings. Hopefully the cooler weather will allow us to continue and extend those in the coming weeks/months.

Thanks again to all those that continue to pray, support and inquire.

(Last year's blog post: Ups and down continue) 

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.

Something Old, Something New

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

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

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

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

Onward we go.

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.

 

Trending

[4/19: Updated update below in green]

The trend continues. More bumps in the road, or left turns, or detours, or whatever. I’m running out of analogies. The bottom line is this is the fourth weekend in a row that we’ve been in the Emergency Room and/or hospital.

After getting treated for the cat bite a couple weeks ago, things kinda went downhill the rest of the next week. Becky was feeling kind of “off.” We had a previously scheduled appointment at UTSW on that Thursday, April 4th. By the time we got there, Becky was feeling a little light-headed, her kidney numbers were elevated, and she had had a couple, what I’ll call “minor,” hallucinations. The combination resulted in another stay at the UT Southwestern Inn & Suites (aka, hospital, to most people).

Unfortunately, we’re starting to be able to predict the routine. Becky was subjected to after another round of tests, blood draws, scans, questions, more blood draws, more questions, and a few days of observation. In the end the diagnosis was that Becky’s s system was not dealing well with the combination of a recently added transplant medication and the two antibiotics originally prescribed post laparoscopy and then extended/updated after the cat bite - in addition to the 13 other regular medications she’s taking. The antibiotics were stopped, the new med was reduced in strength, and one other regular med was switched. After all that, Becky was released on Monday and felt better for most of last week.

Yes, “most” of the week ... right up until Friday, her birthday. The week started off pretty good. She was doing chauffeur duty for grandkids while Brian was in Dallas for work. She started feeling bad on Friday. On Saturday, she stayed in bed late because she was extra tired - which was not-unexpected with all her activity during the week. But then she started complaining of chest pains, similar to but stronger than those that led to the laparoscopic procedure a couple weeks ago.

So, not wanting to mess around with chest pains, we decided to visit the Seton ER in Round Rock on Saturday afternoon. After more tests, the decision was to admit Becky to the hospital for two reasons. One, her kidney numbers were once again elevated. IV fluids overnight have already brought those numbers back in line. Two, there was some indication there may be some fluid around her heart. Orders were placed for an echocardiogram to get a better look. The echocardiogram was negative. A stress test was scheduled for Monday morning (although not completed until Tuesday). The stress test showed some potential blockage. A subsequent CTA (CT scan with contrast) determined there was no blockage and her heart was fine. On to the next test, an EGD (endoscopy, upper GI scope) today, Friday, the 19th, showed Becky has gastritis and a hiatal hernia - both of which could be contributing to her pain and discomfort, and are easily treatable. We’re waiting to talk to a doctor about next steps.

I’ll end this post by copying my Facebook post from Friday...

Happy birthday to the love of my life! It's been one heck of a year. If somebody would have told me last year that you would be a five month transplant survivor on this birthday, I never would have believed them. We compressed an amazing amount of emotion, stress, joy, uncertainty, hope, pain, anxiety, relief, heartache, worry, thankfulness ... and emergency room visits ... into one year. In hindsight, as hectic as it was, I'm glad it didn't drag on. I'm incredibly thankful you're here for this milestone birthday, and look forward to having you around for many more. Love you. Now and forever.

Praying that the medical team is able to determine the source or Becky’s ongoing chest/GI pain so we can break the pattern of weekend hospital time. It’s really cutting into our time with the grandkids.

Greetings from the “Big D”

Happy St. Patrick’s Day from Dallas. A planned overnight trip to Dallas for a couple early morning appointments on Friday turned into a (hopefully short) stay at the UTSW Clements University Hospital. With a little Irish luck, which our genealogical research surprisingly shows Becky would be more likely to tap into than I would, this will be a short detour on her transplant journey.

Over the last few weeks, a couple different issues have cropped up. First, there were a few lab numbers that the medical team wanted to follow up on. That led to appointments for “special labs” to verify there were no rejection related antibodies and an ultrasound to verify the kidney still looked okay. Second, Becky’s nausea and other GI issues have ratcheted up a notch to more severe stomach pain and cramping.

After we left the early morning appointments, we headed to the car so Becky could take her meds before we got on the road home. She wasn’t able to keep them down. The transplant team had repeatedly reminded us of the importance of these meds and had told us to go to the emergency room if that became a regular problem. Since this has happened a few times over the past couple weeks and we were right here at UTSW anyway, we decided to head over to the emergency department. After some initial conversations between the emergency department and transplant team, they decided to admit Becky to the hospital to see if we could get some answers.

The good news is that all the extra tests, ultrasounds, and bloodwork that have been done over the past couple days continue to show the liver and kidney are still working well, and there are no signs of rejection, infection, or other major problems. That’s all good.

The results related to Becky’s GI issues are less clear. The most probable theory is that Becky’s system is extra sensitive to one of the anti-rejection drugs. It’s known to cause nausea and similar issues, and since she has a history of reflux and IBS on a good day, adding this and the other laundry list of drugs may just be extra hard on her system. For those that were in the loop for her last emergency room visit in Austin a week or so ago, that diagnosis of splenic infarction as the cause of her stomach pain has been ruled out. There was evidence of that condition pre-transplant and it is not likely to be the cause of her current problems.

At this point, midday Sunday, the medical team has reduced the strength of the suspect medication and is scheduling an endoscopy for Monday to see if there are any other issues going on. That means another day/night in Dallas, but waiting for an appointment as an outpatient could mean waiting until May or June. So we’ll hang out in Dallas for another day. It’s been a roller coaster and Becky’s tired of feeling “sick.” She’d like to get some answers, even if those answers are simply ruling out another underlying medical cause, and I have to agree with her.

One final note ... One good indication that, in spite of the GI issues, Becky’s feeling better overall and getting back to herself is that she had her own list of questions on her phone for the doctor today. :-)

Your continued thoughts, prayers, and kind words of support are heard, felt, and appreciated.

Happy St. Patrick’s Day!

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!

We're home! (again)

Well, we're back home. The doctors didn't find any underlying medical problems that would be causing Becky's nausea and weight loss. In fact, one of the doctors said that given how sick she was before and even after the transplant, she looked better than he expected and is near what he would consider best case scenario in terms of progress at this point. He added that we still a long road ahead given the toll on her body over the past few months, but he was encouraged and encouraging.

They changed a few medications and are trying a different formula for Becky's nutrition, and after a couple days at UTSW her nausea seems better. The lack of solid foods and all the various medications combined with her historically sensitive GI system make it almost impossible for her stomach to feel normal right now. So, I wouldn't say she's 100%, but at least she hasn't been throwing up (sorry for graphic mental picture).

There's really not much else to update. Becky's slowly getting stronger although she's still tired. She's trying to find things she can eat so we can get rid of the Dobhoff feeding tube, but she still doesn't have much of an appetite and most things still don't taste good to her. But on the plus side, she did eat a couple bites of waffle for lunch, and about a half scoop of Braum's ice cream on the way home. We're still working on the logistics of home care and transportation so I can return to the office.

That's about it. Overall, she's much more herself than she was a couple months ago. Feel free to call or text her (she doesn't do Facebook Messenger). Afternoons or evenings are probably better than mornings.

Thanks again for all the support and prayers as we continue the journey.

Back in Dallas

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

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

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

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

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!

Navigating the tunnel

The road trip/journey analogy seems to be working well, so I’m going to stick with it. And since the psychiatrist has used the tunnel imagery during her last two visits, I thought I’d use that same mental picture for this update. Facts up front and some reflection at the end.

Sometimes as we’re marching along from day to day it feels like the journey will be endless. However, when we look closer, we can find small improvements almost every day.

• Becky’s overall health is so much better than it was one month ago, two months ago, or even in September/October of last year when we were in and out of Emergency Rooms and hospitals.
• Although it’s not 100% certain yet, the rehab team feels like Becky is on schedule to be released from in-patient rehab next Tuesday (1/16) at the tail end of a winter cold front/storm.
• Becky continues to make incremental steps in regaining strength. She’s still a long way from normal, but moving forward.

As of today, once Becky’s released from in-patient rehab, the transplant team wants us to hang around Dallas for another week just to make sure no issues pop up once she’s no longer under 24 hour medical care.

We still have a lot to learn about what daily life will look like once we leave rehab, and then leave Dallas. New meds. New routines. Lots of blood work (which should taper off over time). Out-patient therapy. Trips back to Dallas. How much assistance Becky will need. This will not be the end of the journey. This will be turning another corner in the current tunnel.

The UT Southwestern psychiatrist used the tunnel analogy because like when you’re driving through a long tunnel, it’s hard for us to see changes from day-to-day as we navigate this part of the journey. All we see is the road or the tunnel, and we’re not even sure we see the light at the end. It seems a long way off. She advised that we need to trust those around us that have been here before. There is a light, and as long as we keep moving forward we’ll eventually emerge. Life won’t return to normal overnight, but with some work, we’ll get there.

So there you have it. We’re in a tunnel. Frankly, some days feel pretty dark and we’re not sure which way to turn, but we have to trust the medical team and continue to have faith that as long as we keep moving forward, we will emerge. We’ll be stronger than before, spending time with the grandkids and family, and telling stories about those three months we lived in Dallas.

I’ll leave you with this … Don’t turn life’s tunnels into a cave!

The plan is the plan until...

The plan is the plan until the plan changes. We had our first “Team Conference” with the rehab team today to go over Becky’s progress and determine the new plan and timeline to get her strong enough for discharge. After her first week of rehab, the team decided to move her tentative rehab discharge date from January 10th to the 16th. The team uses both medical and physical criteria as well as the home situation to determine when somebody is ready to take that next step.

In our case, the plan is for Becky to be independent enough to be at home alone while I return to work in the office. That means she has to be strong enough to stand on her own (from the bed, the chair, or the bathroom) and walk around the house. There may be some home health care, and will likely be some out-patient therapy, but not full-time nursing care at home or as an out-patient. Zale also provides a social worker to help us coordinate whatever medical  equipment, supplies, therapy, and health care Becky will need when we get home. I’m not quite sure yet about what kinds of grab bars I might need to install or if I might make a quick trip to Georgetown to do some prep, but one hurdle at a time.

In addition to regaining enough strength to be independent, Becky’s still working on finding her appetite. She’s been battling some pretty consistent nausea the past few days and nothing tastes right to her. We’re trying a couple different medications to see if they’re more effective than what she has been taking for the nausea. So the appetite and taste issues combined with the tube down her throat are making it a challenge for her to get excited about trying to eat. I continue to hope and pray for some kind of breakthrough so she doesn’t have to go home with the feeding tube.

In the meantime, here’s my latest view of the Dallas skyline from my new office/couch.

Happy New Year from Dallas!

Yep, we’re still in Dallas. Becky’s had four pretty full days of rehab so far, and she’s pretty worn out at the end of each day - which means they’re doing their job! I don’t think every weekend will be as busy as this first, but they want to get her jump started on this new road. There has been a little progress physically. She’s still working on getting her appetite back, dealing with taste changes due to all the new meds, and having some swallowing issues.

You might be wondering how long we’ll still be in Dallas. So are we. We don’t have a definite discharge plan yet, but here’s what we know. The doctors and therapy team will get together every Wednesday and determine their best estimate for a discharge date. That date can be adjusted each week depending on Becky’s progress. As we get closer to that date, the team will talk to us more about what rehab looks like after discharge - e.g., outpatient rehab in Georgetown, home healthcare, etc. Since Becky just checked in last Wednesday afternoon, the various therapy disciplines hadn’t officially evaluated her yet so they gave us a “tentative” discharge date of January 10th. Personally, I think that’s a little optimistic, but only time will tell. I hope I’m proven wrong. Side Note: We also don’t know yet if the liver team will want us to hang around Dallas for any additional time after the rehab team says she’s ready to go home with a plan for continued therapy.

There have been a few more milestones reached this week. Becky has been able to wear her own clothes (she still needs help getting dressed, but she was glad to get out of the hospital gown). Becky’s general anxiety about rehab seems to be under control. We’re talking to a speech therapist and psychiatrist about how to deal with the anxiety and appetite/swallowing issues. It’s a lot. There’s been a lot of trauma. Some of it may just take more time.

Visitors are allowed and welcome. However, keep in mind that Becky will have therapy sessions scheduled through 3:00pm each week day. After that, she’s free except for dinner (around 5:00). Weekends are likely a little more flexible since I don’t expect therapy to be scheduled all day on future weekends. Resources are a more limited and prioritized based on patient needs. If you want to visit on a weekend day, just  be prepared to be flexible and feel free to text me in the morning since we’ll have a schedule by 7:00am each day.

My New Year’s Resolution is to watch fewer football games from Emergency Rooms and hospitals in 2024 than I did in 2023.

Continued prayers for Becky’s strength, discipline, appetite, swallowing, and ability to process her feelings and deal with her anxiety triggers are much appreciated.

Happy New Year and Hook ‘em!

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.

Sick Mama

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

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

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

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

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

Continued prayers are much appreciated.