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.