March 15, 2019

Hello family and friends! Since the last update on Tom was in October, there are a few things to fill you all in on. In November, Tom had his 3rd bout with hepatic encephalopathy (the brain confusion that can affect many with advanced liver disease) — he had to go back to the hospital for about 4 days, but thankfully, we caught this episode much more quickly and were able to start upping his dose on his medications before he even got to the hospital, plus there was no indication of any other infection in his body (which can also increase his risk of the confusion happening), so they were able to get it under control much faster. Praise the Lord it was a much, MUCH quicker experience than last time.

Since then, he has been doing decently well, getting his paracentesis (abdominal draining) done once or twice every week, depending on how he is doing. There is one area, however, that has NOT been getting better, and this has become the current area of concern.

As a result of the fluid accumulation in his abdomen, Tom has developed two hernias — one that doesn’t really bother him too much, and one that really does. We have continually spoken to the doctors about both of these hernias for about two years now, and we have asked if there is any way that something can be done about them, as they drastically affect his quality of life. The continual, short answer has always been “No. Liver patients do not handle general anesthesia well, and liver patients do not recover quickly at all from major surgery. We NEVER do surgery on liver patients until after their transplants are complete. It is much too risky.”

Well, out of the blue, on our last two visits to the liver clinic, it was like they were seeing the true effect of the hernias for the first time — they could see he couldn’t walk well, sit well, stand well, that he is in continual, severe pain from them, and that he is not able to function independently in many ways because of these limitations. They recommended for us to at least come and talk with a surgeon because his quality of life has been so drastically reduced. The surgeon (who told us he was planning on denying Tom the surgery based on what he normally tells others) took one look at him and said, “We have to do the surgery. We can’t NOT do the surgery. At this point, there isn’t even room for a new kidney in there, so if you don’t have hernia surgery, you will not even be able to receive your transplants. Hernia surgery before transplant is now your only option. And it will still be risky.” So, long story short…..Tom is getting hernia surgery done in a couple months.

Why in a couple of months? Before they attempt the hernia surgery, they need to do one other liver procedure to increase the chances of the hernia surgery going well — the procedure is called a TIPS (transjugular intrahepatic portosystemic shunt — feel free to Google). It will hopefully reduce the amount of fluid in his abdomen over the next couple of months to make it easier to do the hernia surgery with less complications.

Why didn’t we do this procedure earlier? It carries with it an increased risk of hepatic encephalopathy, which Tom REALLY wanted to avoid, and quite understandably so. However, it is now not an option to avoid.

SO….Tom goes in for his TIPS tomorrow morning at 9am. If all goes well, he will go back to see the surgeon in the middle of April to schedule the hernia surgery. After hernia surgery, he will probably be in the hospital for at least 2 weeks for recovery, due to his slower than normal healing time as a liver patient.

Prayer requests —

* Please pray for the TIPS to go well and for Tom not to develop any hepatic encephalopathy over the next couple of months as a result.

* Please pray for the hernia surgery to be successful. As with any surgery, there are risks. For a liver patient, there are more risks than normal. Pray for the surgery to hold, that there are no infections that develop, that his liver can stay healthy enough to handle the surgery, and that he can recover more quickly than they expect. That being said, Tom is more than ready to have this surgery done as the chances for success mean a much easier road for his continued wait for dual transplant, much less pain and discomfort, and an increased ability for him to become more independent during his wait.

* Pray for peace and endurance for Tom and for our family. It continues to be a long, hard road with multiple twists and turns. We have no idea what to expect for the future, but we know God is faithful and good in the midst of the difficulties.

Again, we thank you for much for your prayers, your support, your donations, your encouragement, and your love. We could not have made it through these past 2 1/2 years without you all and without the Lord walking alongside us through this journey.

October 10, 2018

It’s been a few months since we last wrote, and to be honest, a LOT has happened. As you may have seen from the last update (which only covered the beginning of what happened), Tom went through a few really, REALLY crazy months. He developed a case of hepatic encephalopathy, which affected his brain and caused intense confusion, possibly due to an infection. His liver and kidney function spiralled, and he developed pneumonia, as well as other complications while in the hospital. They finally got his brain confusion under control, but then it reoccurred while still in the hospital, prompting us to move him to the Liver Floor at the campus in the Houston Medical Center instead, so that they could stabilize him. There were attempts to get rid of multiple infections, to improve his spirits, and also an attempt at dialysis, which triggered atrial fibrillation in his heart, so that was discontinued immediately. He was on a feeding tube for quite awhile. It seemed like one thing after another. At one point, his condition was so poor that the transplant team deactivated him (not removed him) from the transplant list because he would not have been healthy enough to withstand transplant. He was, however, reactivated about a month ago.

Overall, Tom was in the hospital for more than 5 extremely difficult weeks (from the end of June until the beginning of August), then he was moved to a skilled nursing facility for 3 more weeks (the rest of August) for physical and occupational therapy, as well as for continued healing from his ordeal. Thankfully, once they got all of his major issues under control and moved him into the rehabilitation facility, he dramatically improved. While he still has many issues due to his condition, he is doing as well as a person who has been waiting for a dual-transplant for 2 years can be doing. He is now officially active on both the liver AND kidney transplant lists. He is currently receiving paracentesis (draining of his abdomen) twice a week, and he has a nurse, physical therapist, and nursing assistant who visit him every week at his home. He is able to walk without a walker, and sometimes without his cane, and his spirits are considerably better as well, which is always a good thing! We are continuing to do small fundraisers as we are able to help cover the cost of all of his medications, his doctors appointments, procedures, and, of course, for the transplant itself. Thank you for being a part of his life and his story. Please continue in your prayers for him — they are immeasurable in their encouragement and effect.