I want to know the real kicker here. Mary is allergic to TPN. He is allergic to a single source of nutrition. Because of this allergy, he itches all the time. His eyes itched, his skin itched, his insides itched. And then, in addition, he was admitted to the hospital on several occasions with blood infections, the most common side-effect of TPN. These blood infections keep him in the hospital for days to weeks. His quality of life was deteriorating and he was finally in complete intestinal failure. His spirit, faith, family, oil, and medical team kept him alive, but something had to change.
Mary had no choice but to find the best medical providers because an intestinal transplant was the only option left. His life depends on it. They tried to become patients at the Cleveland Clinic. However, for some reason, that situation won’t work out for them (one reason is that he will only be added to the transplant list when his other digestive organs fail. Sounds like fun, huh?). He and Mark continued their research and learned that Georgetown, just down the road from Fort Belvoir, had one of the top intestinal transplant teams in the country. The Georgetown team was very attuned to Mary and Mark’s needs and Mary quickly became a patient at Georgetown.
Mary and Mark had several major milestones they needed to meet before Mary could be added to the transplant list. She needs to find child care for Bash. For those of us who have gone through the trials and tribulations of finding care for our children, it is no easy task. It was emotional for everyone and it was the case for the Henleys. They find care and, luckily for everyone, Bash is very happy there. The next thing was for Mary, a wife and mother of over 20 years, to write an advance medical directive. I have no experience with this but I can only imagine the emotions that went through her and Mark as they wrote this. He believed in the Lord, knowing that He had plans for him and making the advance directive easier to process. Another big milestone was Mark’s Ranger School experience. With these, and several other milestones, concerns, and experiences behind them, Mary was activated on the transplant list on July 19th.
At first, he was told it could happen quickly. But they prepared. Things are in place and ready to go. Still no call. Just waiting. praying Trusting in the Lord.
In mid-September, after being on the list for two months, Mary posted a great video on Facebook that answered many of our questions. He explained part of the reason why it took a little longer than he expected. In the video, he explains that there are three compatibility factors for matching a potential bowel donor with a recipient and these factors are assigned a number that results in a PRA score (the score is 0-100 with 100 being the most detailed). The first factor is blood type. He didn’t have the rarest blood type, so his team decided it wasn’t a big factor. The second factor is the size of the donor compared to the size of the recipient, especially the size of the abdominal cavity. Makes sense, right? Mary’s intestines took up very little space compared to what a normal intestine would take up. Luckily, he’s an average size, so that’s not a big factor either. The latter factor is more significant, and Mary and her team only learned the severity after she was placed on the transplant list. The third factor is antibodies, and for Mary, a particular virus for which she had no antibodies, became the limit on potential organs. This ended up delaying the transplant a little longer than his medical team had expected. On October 17th, after being on the list for just 3 months, her transplant team told her to throw the timeline out the window. The transplant can happen tomorrow or in a year.
Mary continued to pray and trusted the Lord that in His time, it was her time.
