Do you have someone in your life who is just truly amazing? Someone who seems to defy the odds or who has a deeply positive outlook on life or who leaves you in awe every time you interact with him/her? Someone who personifies the term “wow”? Well, I certainly do. And today, on #GivingTuesday, I want to talk about her. Today’s article is going to be a bit public-service-announcement-y and, honestly, only loosely tied to postpartum doula/parenting work. But, I feel so inspired and so compelled by my friend Mary Henley that I’m willing to accept the feedback on stepping outside my typical lane.
An Abridged Version of Mary’s Story
Let me tell you a little bit about Mary and her family, adorably named the Hen House (their last name is Henley!). Mary is a lover of the Lord. Her faith and devotion alone are enough to emulate. Given several of her past experiences, others would likely question God and his presence, but Mary is a true believer and her faith grows deeper as her struggles intensify. Her faith is evident in everything she does and it is purely uplifting. Mary is a fellow Army spouse. I’ve never met Mark in person, but everything I’ve learned about him over the past couple years, he’s just as amazing as Mary. Y’all he made it straight through Ranger School! He’s a great Soldier, fabulous spouse, and has a t-shirt proving that he’s “World’s Greatest Dad!” You’re amazing Mark, but this article is on Mary, so back to Mary. Mary is also an oiler. She gives essential oils much credit in helping her “emotionally, physically, and everything in between.” When she was having recurring blood infections, she’d bring her diffuser to the hospital and she quickly because the favorite room for providers to visit!
Another fact about Mary, she’s a fellow mother. She’s mom to a 3 year old little boy. Bless her heart, right! I have a 3 year old little boy so I know many of the struggles she’s currently encountering with her little fella. I think he is the cutest little guy! But her life is topped with what you are about to read, and the reason I am writing this article today.
Mary has lived with severe Crohn’s Disease for damn near all of her life, diagnosed at age 5. According to the Crohn’s and Colitis Foundation, Crohn’s diagnosis can occur at anytime during a person’s life but most frequently occurs between ages 15 and 30, so Mary has experienced this much longer than most. She had three resectioning surgeries (the most recent one in November 2015), leaving her with only about 3 feet of intestines (which were sewn together like a quilt). According to one study, the average length of the human intestine was found to be between 21.8 feet and 30.3 feet. Mary had THREE feet! She had 11.5% of the average intestine. As you might imagine, this led to a degraded ability to properly digest food so she started tube feeding (enteral feeding). Unfortunately, she continued to experience pain with tube feeding so her medical team switched her to total parenteral nutrition (TPN). I’ll be honest with you here, I had to look this up. I saw Mary at least twice a month with her TPN backpack, she talked about her experiences to include her nurse bringing her new TPN and checking her port, but I didn’t really understand what it meant until I skimmed this easy-to-understand website. I learned that, unlike tube feeding, TPN completely bypasses your digestive system. It is entirely nutrition-by-IV. Nutrition went straight into her bloodstream. The only thing she consumed, for over a year, was Starbucks chia lattes!! Can you imagine that? No Thanksgiving turkey. No stealing halloween candy from her son. No celebratory cupcakes. No huge dinner when Mark pinned on that beautiful black and gold Ranger tab. No delicious brunch at MOPS. Nothing but Starbucks for over a year. I’m not sure how anyone could mentally survive that…except Mary.
Mary = wow!
Ya wanna know the real kicker here. Mary was allergic to TPN. She was allergic to her sole source of nutrition. Because of this allergy, she constantly itched. Her eyes itched, her skin itched, her insides itched. And then, to top it all off, she was admitted to the hospital on multiple occasions with blood infections, the most common side-effect of TPN. These blood infections kept her hospitalized for a few days to a couple weeks. Her quality of life was degrading and finally she was in complete intestinal failure. Her spirits, faith, family, oils, and medical team kept her alive, but something needed to change.
Mary had no choice but to seek the best medical providers because intestinal transplant was the only option left. Her life depended on it. They attempted to become patients at the Cleveland Clinic. However, for a couple of reasons, that situation would not work out for them (one reason being that they would only add her to the transplant list once her other digestive organs failed. Sounds like fun, huh?). She and Mark continued their research and learned that Georgetown, just up the road from Fort Belvoir, had one of the top intestine transplant teams in the nation. The Georgetown team was very much aligned with Mary and Mark’s needs and Mary quickly became a Georgetown patient.
Mary and Mark had a few major milestones they needed to address before Mary could be added to the transplant list. She needed to find child care for Bash. For those of us who have been through the trials and tribulations of finding care for our children, this is no easy task. It’s emotional for everyone and this was the case for the Henley’s. They found care and, fortunately for all, Bash is very happy there. The next thing was for Mary, a wife and mother in her late 20’s, was to write an advance medical directive. I do not have experience with this but can only imagine the emotions that came over her and Mark as they wrote this. She put her faith in the Lord, known that He had plans for her and making the advance directive easier to process. The other huge 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.
Initially, she was told it could happen quick. But they were prepared. Things were 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. She explained part of the reason it was taking a bit longer than she expected. In the video, she explained that there are three compatibility factors for matching a potential intestine donor to a recipient and that these factors are assigned a number that results in a PRA score (score being 0-100 with 100 being the most detailed). The first factor was blood type. She doesn’t have the most rare blood type, so her team decided this wasn’t a huge factor. The second factor was donor size versus recipient’s size, especially the abdominal cavity size. Makes sense, right? Mary’s intestines took up a very small amount of space compared to what a normal intestine would take. Fortunately, she is an average size, so that wasn’t a huge factor either. The final factor was 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 specific virus for which she didn’t have antibodies, became the limiting factor on potential organs. This ended up delaying the transplant a bit longer than even her medical team anticipated. On October 17th, after being on the list for just shy of 3 months, her transplant team told her to throw the timeline out the window. The transplant could happen tomorrow or in a year.
Mary continued to pray and trust in the Lord that with His time, it would be her time.
She got the call on October 27th. It was her time. She was going to receive a new intestine, all because someone decided to #DonateLife. This organ donor from Pennsylvania will literally live on, through Mary. And not just with anyone. This organ donor and his/her family, get to have the privilege of now literally being connected to Mary and the Henley family. LUCKY!
She spent 25 days in the hospital. To me, that seems like a long-ass time. But, considering that she just had massive abdominal surgery and received a whole new intestine, that’s a miraculously short hospital stay. She and Mark were told to anticipate a 4-8 week stay, so long as there were minimal complications. Yet she powered through and amazed everyone with the first parts of her recovery.
Again, Mary = wow!
Her recovery will be intense and challenging and full of good news as well as bad news. It will last a year, and then some. She will have colonoscopies twice per week for the foreseeable future then down to once per week then spaced out from there. Each transplant recipient has tests and screenings for rejection, but most tests/screenings are accomplished through blood work. Unfortunately, the only way to truly test for rejection with an intestine transplant is through colonoscopies.
Her immune system is forever altered, as is the case with any transplant recipient. She will live her life with varying doses of steroids and anti-rejection medication, as is also the case with any transplant recipient. She will live her life with new intestines. Her life is forever changed.
On November 10, Mary had her last bag of TPN, her sole source of nutrition for about the past 1.5 years (if you don’t count her chai lattes!). She is now on a “small bowel diet” and will continue with this for a few months. She is also able to take medication orally. Old habits die hard and she still has a bit of anxiety when eating, fearing that she will have an intestinal blockage (what she because accustomed to anytime she at for the past couple years).
One of the happiest things I read about Mary over the past few weeks came from Mark when he wrote “Every day her doctors and nurses come in telling her how extraordinary she has been doing. They have asker her to come back and be a motivational speaker for the other transplant patients because they’re so impressed by her motivation.” I can’t think of anything more true! She has always been an advocate for patients. I am so thrilled to see what comes of this!
A Different Kind of Giving…#DonateLife
As is my nature, I wanted to do a bit of researching to make sure I understood what I was talking about, to learn a bit more for the purposes of this article, but mainly to learn a bit more about what Mary’s been through. I found the US Department of Health and Human Service’s website to be the best one for me. Their website, www.organdonor.gov, is comprehensive and to the point. They address many of the myths I’ve heard (and, to be honest, wondered myself over the years) and do a nice job of debunking said myths on their donation myths and facts page. The biggest myth that this site clarified for me was one my parents mentioned about many, many, many moons ago - “If they see I’m a donor at the hospital, they wont try to save my life.” The fact is, medical providers have to save your life. It is their job. They are under a professional and ethical obligation to do just that. No matter if you’re a donor or not.
Mary mentioned this in one of her Facebook posts, but can you guess how rare intestine transplant is? I knew it was rare, simply because I hadn’t really heard about it as much I’d heard about kidneys and livers. But geesh, look at this! 109 intestine transplants compared to over 19,000 kidney transplants last year. Wow, makes me really pause and pray for those who gave those organs and those who received them.
Alright, let’s do this. What can you do? First, talk about this with your family. If you wish to donate organs, make sure your family knows. And talk about it more than once. When the time comes, our families will be full of emotions, possibly causing them to forget your intentions if you only discussed it once. So, be sure to mention often that you wish to donate your organs.
Then, make it official. You can hit the DMV (unless you live her in California then avoidance of the DMV is the best possible option for your own sanity! Check out https://donatelifecalifornia.org instead!) or you can do it online. This page walks you through the process, https://www.organdonor.gov/register.html. You can also visit www.RegisterMe.org and sign up there. Or, go to www.donatelife.net and register there. Or, you can register right through your handy-dandy iPhone Health App!
Or you can talk to Mary. Or Mark. Or, in a few years when he starts to truly understand and process it, talk to their son Sebastian. What a different life these three will have. Everything is about to be different (and already is!). Everything.
All because someone checked a box.
#DonateLife #GivingTuesday #UNselfie
So proud to call you a friend, Mary Henley!