Our Disney Adventure

Warning: This is a rather lengthy post. :-)

Some of you may already know this, but it had been one of Becky’s goals for several years, prior to liver disease and transplant issues, to take a family vacation to Disney World - one that included all the kids and grandkids. As we approached her one-year transplant anniversary last November, Becky was adamant that she wanted to schedule it for sooner rather than later. In an attempt to avoid some of the largest crowds, we decided as a family to shoot for October of this year. And so, the wheels were set in motion. We picked some dates that minimized the number of days kids would miss school and I started making reservations and buying tickets.

If you’ve been keeping up over the last year, either via Facebook, this blog, text messages, or just normal conversations, you know it hasn’t been all rainbows and unicorns. Becky has had her share of issues starting with the shoulder replacement last December, the repeated small bowel obstruction issues, a couple infections, and most recently, her anemia diagnosis. Even as these complications threatened to derail the family vacation, we continued making and finalizing plans. Even as her fatigue from the anemia threatened to keep her down, Becky reiterated that we did not need to reschedule. Even as a couple late season tropical depressions threatened to dump rain on central Florida, we crossed our fingers, bought rain ponchos, and stayed the course.

I had three goals for the trip:

1. No Emergency Room trips
2. No wheelchair for Becky
3. Everybody eats and drinks enough to survive (I borrowed that one from Courtney)

With all that as background, I imagine you might be curious to know how it went. Well, things did not start out very well. Becky and I arrived earlier in the day than the kids and spent a few hours at Disney Springs. After that, Becky decided a nice relaxing bath in the garden tub in our rental house would be a good way to cap a day that started with a 3:30 am walk-up call to make our flight in Austin. Unfortunately, she lost her balance getting out of the tub and fell pretty hard on her arm. A couple hours later, as the pain level increased, we made a trip to a local Emergency Room clinic to get it checked out. We mainly wanted to verify it wasn’t broken - even though Becky was prepared to continue our adventure in a splint of cast if necessary. Thankfully, it wasn’t broken, but the sling and pain meds meant she needed to spend most of her days in the park getting pushed in a wheelchair. It was only the first day, and we had failed to meet the first two goals.

Toward the end of our first day in the park, Becky was shopping in one of the Magic Kingdom gift shops. She was walking for a bit because it was too crowded to maneuver the wheelchair easily. When she was done, she lost her balance getting back into the wheelchair and sort of fell into it face-first and landed with her knees under the chair. This was a much less serious fall, but she did get a new scrape and did need help from Mr. Incredible to get back up. No, that wasn’t me. I was with the kids a little way up the street. It’s Halloween party time at Disney so the Mr. Incredible was another park visitor that just happened to be nearby and offered to help. The folks at Disney were awesome in helping get Becky's new scrape bandaged up and offered to provide any medical services or help we needed. I think this fall hurt Becky's ego as much as anything, and thankfully, this was her last fall of the trip.

The weather was mostly cooperative. Even though there were a couple tropical storms headed toward the East Coast the week before we left, they both veered away and headed north so there wasn’t any widespread rain. We did have a couple days with storms. One was fairly short-lived, and the other was in the evening as we were leaving the parks. Mostly, it was warm and humid - warmer than we expected for October, but not overbearing.

For those that aren't familiar, Disney has special events in Magic Kingdom during the holidays. Mickey's Not-So-Scarry Halloween party in the Fall, and Mickey's Christmas Party after that. Regular ticket holders have to leave the park early on these evenings, and you have to have a special ticket to attend the special late-night festivities. Crowds are limited to about a third of normal park capacity. We had tickets for one night and enjoyed the special Halloween parade, the special fireworks show over the castle, trick-or-treating for the kids, and some shorter lines at a few of the rides. It was a late night, but it was a lot of fun for everyone.

A couple days later, Becky wasn't feeling well and decided she needed to stay home and rest up a little. After pushing her wheelchair for most of the first few days, I felt like I could use a break as well. My hip and right leg were burning and going numb. That will be one of the topics for my PCP at my next appointment. The kids went to Animal Kingdom without us that day. They told us later that it was probably the least wheelchair friendly of the parks, so it was probably a good decision all-around.

We had one more full day with the family in the parks. We did a little park hopping to catch a few things we had missed. Brian was feeling bad, but he pushed through. He went to the CVS Minute Clinic when he got home and was diagnosed with strep throat. I'm not sure how he kept it to himself, but thankfully he did.

Becky and I stayed one extra day to make it easier to coordinate trips to the airport, and checkout from our Vrbo rental. We went back to Magic Kingdom and rode a couple things we had missed and did a little last-minute shopping. We kept it pretty low-key and we left the parks fairly early. It was hot and crowded and we were running on fumes.

Our return trip home was mostly uneventful, although we did have to do a last-minute swap of items between our suitcases at the Southwest counter because Becky's was over the 50-pound limit. She bought a few too many t-shirts.

In the end, it was a great trip. Everyone had a great time, and most of us brought home memories that will last a lifetime. The younger kids probably won't remember much, but we have hundreds of pictures for them to look back at! And we all met goal #3!

P.S. We're still working on Becky's anemia. She received iron infusions in October, and she has follow-up labs scheduled in November to see how her bloodwork looks. We also need to coordinate treatment for her osteopenia (pre-osteoporosis).

Kidney Stones, and UTIs, and Anemia, Oh My!

It's time for another update.

Things have been going fairly smoothly since Becky's last surgery in June. It feels like her SBO (small bowel obstruction) issues have been resolved - at least for now. She did make one return trip to the ER and hospital in July for what felt like another SBO issue. This came as quite a surprise since she had the surgery which was supposed to "clean up" all the scar tissue that was thought to be the most likely root cause of her SBO problems. This particular episode and ER/hospital trip was not quite as severe as most of her previous ones. Things pretty much cleared up on their own within a day or so and she was able to head back home.

On the other hand, my body decided it was time to join in on the fun. A few weeks ago, I woke up extra early on a Friday morning with pain in the left side of my back. Since I had been down this road a couple times before, I was pretty sure what the cause was, but I was hoping this kidney stone would take care of itself without a trip to the Emergency Room. No such luck. Within an hour or so, I knew that at a minimum some pains meds were going to be in order. Something stronger than over-the-counter Tylenol or Ibuprofen. It was a relatively short trip. A scan to confirm the stone (and a few other lying in waiting), some pain meds, and something to help it pass. No surgery. I was better in a couple days, but I'm doing some follow-ups to decide on next steps. Becky said it felt weird to be sitting in the chair in the ER room while I was the one on the bed being treated. Anyway, enough about me. Back to Becky

Becky also made one more trip to the ER. She had been diagnosed as being anemic a few weeks ago. In fact, she's been borderline anemic off and on since the transplant. It's a common issue that transplant recipients have to deal with, and the transplant team has tried to improve things with various vitamins and meds. It's been a little worse lately and we had been working on the best plan to get Becky some iron infusions. Anyway, Becky woke up one morning with some chest pain. Since anemia can lead to heart issues, we decided to get her checked out. Better safe than sorry. The good news was that there were no heart issues. The bad news was that during the course of running all the tests they determined Becky had a UTI. Actually, it wasn't terrible news. Since Becky's on immunosuppressant medications, it's good the UTI was found early so it could be treated. She stayed in the hospital a couple days getting IV antibiotics and everything cleared up.

As far as the anemia goes, we were able to get the insurance to approve getting iron infusions at Texas Oncology here in Round Rock rather than having to make multiple trips to UTSW in Dallas. Becky finished a first round last week, and she's feeling a little better. It was a little emotional for her to get those infusions in the same room that her mom got chemo treatments a few years ago. Life likes to throw a curve every once in a while. Anyway, she's still tired, and she'll be getting some follow up blood work in a couple months to see where things stand.

So, overall things seem to be going fairly well. We haven't had any major issues in a few months. It feels like the we're dealing with fewer of the big things, and we're finally figuring out what Becky's new normal is two after her transplants. Yep, November 28th will be two years.

Until next time...

The End of a Chapter?

Once again, it’s been a few months since my last post. And once again, that’s mostly been good news. Becky hadn’t had any major issues for several months. She had some routine tests, and some not-so-routine tests, and everything came back normal. The main issue recently had been that her recovery from the shoulder surgery was quite a bit more difficult than we expected. It set her back a bit in terms of general strength and stamina, but she was getting back to the point of doing some evening walks to try to prepare for our upcoming Disney vacation. And then...

Well, before I go there, a step back. For those that have been following along at home, you may remember that Becky had been back to the ER and/or hospital for nausea, stomach, and abdominal issues several times over the past year and half. Prior to last week, she had been diagnosed with four separate small bowel obstructions (SBOs). Now, back to last week...

Becky started feeling the now familiar symptoms of an SBO once again last Tuesday. After a couple exchanges with her team at UTSW to figure out what next steps might be, she started feeling worse and the decision became easier. We were headed back to the local ER.

Once we went through all the normal steps - blood work, CT scans, etc. - there was one aspect of this episode that was slightly different. The radiologist reported that although not conclusive, there were indications that this SBO could be a “closed loop” obstruction. That raised the bar in terms of urgency because that can quickly lead to intestinal damage and related complications.

As a reminder (because I’m pretty sure I’ve mentioned this before), one of the primary causes of SBOs is scar tissue. However, we learned two new things on that front during this visit. First, it’s not likely that the transplant surgery was the primary or even a significant contributor to the scar tissue around the intestine. Her new transplant organs are not really in that area. Second, the most common cause of scar tissue in women that deal with SBOs are hysterectomy and gall bladder surgeries. Becky has had both plus a few other surgeries in her abdominal area over the years.

What did all this mean? Well, after talking through the options with the ER surgeon for almost half an hour (which I was extremely appreciative of), we decided that it was time to take the next step. Rather than continuing the typical non-invasive methods to address the SBO, we decided to go with the option of performing surgery to see if we could address the scar tissue as the root cause. Becky went into surgery somewhere around midnight, and I hung out in the very empty OR waiting room shown in the photo above.

There is a lot more to this story and decision, but I’ll go with the a short version here. The surgeon started by attempting laparoscopy, but there was so much scar tissue he could not make any progress. He ended up making a rather long incision, and spending a fair amount of time, separating scar tissue from her intestines as well addressing scar tissue around her colon and in her pelvis. Fortunately, there was not a closed loop SBO, so it was not necessary to repair or remove a section of her intestine.

The good news is that this should provide some longer term relief from the SBO problems. The bad news (there always seems to be a little bad news with the good news) is that since this was a more invasive surgery that ultimately required the surgeon to “put everything back” when he was done (his words), Becky was pretty sore afterward. It also took her system a little longer to start working again after the surgery, but we made it. After several days in the hospital, Becky is back home and back on the road to recovery so she can get back to babysitting grandkids (but without carrying them for the next six weeks).

Once again, we are thankful to those that stood beside us in prayer.

Here’s hoping this is the end of this chapter (at least for now) and that we don’t need to make any more ER trips in the near future! I don’t really need a reason to monitor the construction progress at the hospital!

While We Were Away

It’s been a couple months since my last post. For the most part, that’s good news. Things have been fairly stable and have been going pretty well. For the most part.

For those that didn’t know, Becky had been dealing with a lot of shoulder pain last year. She saw a couple different orthopedic doctors, and the diagnosis was that she had significant arthritis in her shoulder, almost complete loss of cartilage in her joint, and a few bone spurs. The only long-term solution was to have a shoulder replacement - especially since most pain medications would be off limits for a liver transplant recipient.

Well, that wasn’t on the radar. In hindsight, even though it may not have changed her mind about having the surgery, we feel we were not well informed about the post-surgery pain, physical therapy, and recovery time. Shoulder replacement is much more painful and involved than knee or hip replacement. One of the unfortunate side-trips for Becky turned out to be the result of taking some of her medications too close together resulting in her getting over-sedated. This caused her to aspirate some of her medication, which led to pneumonia and other complications. After a couple days in the hospital, she came back home but the transplant team restricted her to only Tylenol for pain. That made the next week or two even more challenging in terms of pain management, but she made it through it and is regaining strength and range of motion in her shoulder.

After that process started to level out a little, Becky felt like she was getting a UTI. Tests confirmed that and she started an antibiotic. The symptoms seemed to subside and all seemed well…for a few days. Not long after finishing the antibiotics, the symptoms started to return. More tests. This time, the tests indicated an infection that was not likely to respond oral antibiotics, so the UTSW transplant team and infectious disease doctor recommended a seven-day course of IV antibiotics. 

Normally, this would be fairly simple, although it would require a trip to Dallas to have PICC line placed so the IV medication could be administered at home. We didn’t even know that was possible, but apparently, it is. Who knew? However, since it was flu season, all beds at UTSW were occupied and there was no clear timetable for her to be admitted. The team wanted to get the medication started so they coordinated a plan to have Becky start at the local hospital ER, and then she would get admitted to the local hospital for treatment. This seemed like a good plan, but there were a couple speed bumps.

First, it’s flu season here too, so hospital beds are hard to get. She spent the first night and most of the next day in an ER room. At least she wasn’t one of the many patients that were in beds or even chairs in the ER hallways. But for somebody on immunosuppressant medication this was not the ideal place to be. She did get into a room a little less than 24 hours after getting to the ER.

Second, coordination of treatment was not quite as smooth as we hoped. Although there was good communication with the ER doctor on duty to get things started, information was not clearly flowed to the hospital doctor on call. That lack of communication and the weekend kept Becky in the hospital for another four days before the PICC line was placed. It took almost another day to coordinate home health care to remove the lines once the medication was finished.

I’ll end this update on a good note. For various reasons, the hospital case manager could not find a home health care service to provide the needed services. Insurance and staffing were the main obstacles. However, it turned out that the nurse that came to train us on how to administer the IV antibiotic at home lives in our neighborhood and recognized us, well, our story, from my posts in the neighborhood Facebook group. When he found out that we were having problems finding a home health care service, he volunteered to take out the PICC line himself on his own time at the end of Becky’s treatment. There are still good people around!

Things seem to have improved. Becky's feeling better. I'm sure there are more tests and more bloodwork in Becky's future to confirm all is well. We're still learning how to navigate all the twists and turns.

In the meantime, we're going to start planning a Disney vacation!

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 

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.