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!

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!

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.

Thankful for the great care

We are both thankful for the great care Becky’s getting while we wait. Numbers are just numbers and we’re trying to remember that we’re not in control. At the same time, the numbers suggest that we could be waiting for a matching donor for a day, a week, a month, or even several months depending on Becky’s health. If she gets worse, she moves up the list and the wait time comes down. If she gets too much worse, she would possibly not be considered healthy enough to survive surgery and recovery.

There have been no major changes to Becky’s health over the last week.

And so we wait.

We’re on the list!

As I mentioned in my previous post, the primary goals of the past few days in Dallas have been 1) to get Becky to a point where she’s stable overall, and 2) to complete her evaluation and provide that information to the liver team in order to obtain a recommendation to be placed on the national transplant list.

With regards to the first goal…

Becky’s liver continued to degrade as did her health. The failing liver started putting pressure on her kidneys. That led to a whole new series of problems. She’s now on CRRT dialysis in the ICU. This is basically a continuous dialysis machine that does the job her kidneys would normally do. The purpose is to give her kidneys a break so they don’t fail before a transplant would happen. She’s also been fighting low blood pressure. They used a couple different techniques to get her blood pressure back up to an acceptable level. It is significantly better today than it was a couple days ago, so that’s a plus. Overall, she’s weak but doing her best to stay strong until the team can find a liver to recommend for transplant. She’s quite a bit better than she was earlier in the week when her blood pressure was hanging out in the upper 70s/30s. She was not doing great. In fact, the surgeons were hesitant to put her on the list because she might not be able to handle the surgery. Some days have been a little better than others, but getting her healthy enough for surgery and finding a suitable transplant sooner rather than later are the only way she’s going to get to play with our grandkids.

Now for some updates relative to the second goal…

The team that makes the decision to put her on the transplant list actually met early (on Wednesday) just to review Becky’s case and gave preliminary, conditional approval based on the outcome of the heart tests and improved blood pressure. All signs pointed to a positive recommendation once those conditions were met. The initial cardiac stress test on Wednesday did not provide complete results. Everything was good as far as they could go, but they couldn’t get her heart rate to where they wanted it - primarily due to her low blood pressure. They did some additional testing and gave a thumbs up for the heart on Thursday. By this morning her blood pressure had stabilized, meds were being reduced, and they were starting to remove some of her extra fluids. At about 10:00 this morning the surgeon stopped by to give a thumbs up and say Becky would be activated on the national transplant list today! Yay! Even better, he was hopeful (no guarantees obviously) they may find a liver as soon as this weekend! Keep praying!

Footnotes…

We’re in Dallas for the duration at this point. Becky will probably remain in ICU until a qualified candidate is found, presented to us, and we accept. We have the option to accept or pass and wait for another based on what we know about the health history of the donor and any possible risks. If not for the CRRT dialysis machine she could probably be in a regular room, but that particular device is only managed in the ICU. I’ll be in a hotel from now until they release us to return to Austin (typically a month or so after the surgery).

I also want to say that after spending the week here, we definitely feel like we’re in the right place. The team at UT Southwestern has been incredible. Becky has been taken care of by an awesome team all the way from our initial planned visit to the clinic on Monday through our time in ICU starting Wednesday afternoon. A huge “Thank you” to that incredible team!

We’re not done yet, but certainly on the right road. Posts will continue for those who want to continue keeping up!

Another week, another emergency room

This week turned out to be another stop on our emergency room tour.

Starting with the good news. We finally got some insurance stuff straightened out last week, and we received a call to set up an initial “liver screening” appointment at UT Southwestern in Dallas on November 7th. That felt like progress. Becky actually felt pretty decent, all things considered, for a few days after we got home. Then we got a message saying there was a cancellation and we could move our appointment up to Monday, October 30th. Even better.

However … as the week progressed she started feeling weaker. Over the course of the weekend, she started getting chills (more than usual) and feeling bad. As we were getting ready to leave for Dallas Monday morning, her knee was bothering her and she was nauseous. We made it to the appointment, but I had to find a wheelchair for her since she was so weak and her knee was hurting. After talking to the doctor at the screening appointment for 10 or 15 minutes, he made some recommendations.

He felt like we needed to figure out the cause of her shortness of breath and lack of strength. He also wanted to try to accelerate the team’s transplant evaluation process which typically takes weeks to months. He sounded like he was concerned that if we wait for that normal process to take its course, Becky will be in a much worse place - especially given her current MELD score and how quickly things have deteriorated over the past few months.

More testing and a visit with the liver transplant team planned for Tuesday, and a another blog post once we know more.

Do they make pins or something we can start collecting at Emergency Rooms?

From fatty liver to cirrhosis in a few months

Becky had an appointment with her liver doctor yesterday, September 1st. We knew things weren't going well, but the news was worse than expected.

Let me start with a short history. Becky was diagnosed with nonalcoholic steatohepatitis (fatty liver disease) several years ago. About a year ago that progressed to a diagnosis of early signs of cirrhosis. Within the last few months that's unexpectedly and inexplicably rapidly progressed to decompensated cirrhosis (end-stage liver disease), and she's been dealing with several consequences as a result. At some point this may lead to a possible liver transplant, but for now we're just trying to address the day to day.

Here's a summary of what we learned from the doctor:

• Fatty liver disease can lead to cirrhosis. Diet changes can usually slow or stop that progression.
• Cirrhosis is diagnosed when there is scarring which is permanent liver damage.
• Becky is dealing with both at this point - fatty liver and initial signs of cirrhosis.
• We need to try to reduce the fatty liver by changing her diet (more protein, less carbs and salt) in order to keep the healthy part of the liver working as well as possible.
• Becky is at the "decompensated" stage of cirrhosis, which is considered end-stage liver disease.
• Decompensation is associated with blockage of blood flow which leads to other consequences such varices, ascites and hepatic encephalopathy.
• Varices is the enlargement of veins which can rupture and cause internal bleeding. There was evidence of varices in Becky's last endoscopy but no bleeding.
• Ascites is the fluid which the liver can no longer filter and process now seeping out into the abdomen which Becky is now dealing with.
• Hepatic encephalopathy is an increased ammonia level which is causing her some general confusion and shaky hands.
• I believe that although the cirrhosis itself can't be reduced, we can attempt to move from "decompensated" back to compensated and recover some liver function.
• The doctor admitted he probably over-reacted to the ascites and increased her diuretic prescriptions too fast in an attempt to reduce her fluid retention. This led to her blood pressure dropping to the 80s over 50s range and also aggravated her kidneys.
• We have more blood work in a couple weeks (without diuretics) to re-evaluate the kidneys and get more liver numbers.
• After the next round of blood work, we'll get a new MELD score (this number is used to determine transplant eligibility and urgency). Her first score was 7 a few months ago out of a range of 6-40 where 6 is a healthy/functioning liver.
• We'll determine need for preliminary transplant conversations/testing her next appointment.
• If/When the transplant path becomes a reality, I'll have some information on living donors and "donor champions" that I can pass along.

The doctor (actually a nurse practitioner) is very knowledgeable and personable and spent almost an hour with us yesterday. He feels that some kind of infectious event such as a viral infection caused liver inflammation which in turn caused the unusually rapid progression of the cirrhosis.

The main focus right now is to change her diet in order to reduce the fatty liver and keep the ascites and hepatic encephalopathy under control. That sounds simple, but it's just a step. It's not really fixing the main liver issue. I suspect we have a long journey ahead.