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.

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.