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|Newsletters: Life after Intestinal Transplantation|
Life after Intestinal Transplantation
The Reid family came to the United States when Matisse was a toddler, knowing Matisse would require intestinal transplantation and it would not be available to her in their native country. Matisse received a transplant in December 2011, and two years later, in December 2013, the family returned to New Zealand.
Jodee and Matisse Reid have been active members of the Oley Foundation community for several years. Even from New Zealand, Jodee will serve as an Oley Regional Coordinator. (So if you’ll be visiting New Zealand…)
For those who haven’t had the privilege of meeting them, we wanted to introduce you; for those who do know Matisse, here’s an update from December 2012, just before the family left for New Zealand. Matisse has been an inspiration to us. She and the rest of her family have exhibited tremendous strength and courage.
Oley: Jodee, how is Matisse doing, two years post-transplant? What are her daily routines?
Jodee:Matisse is doing really well. Small bowel transplant is one of the most complicated of all transplants and recovery is the most lengthy. Two years on and we are still in recovery phase and still learning “the new normal” for Matisse. However, compared with pre-transplant, Matisse is 100 percent better.
Today she is taking all her medications in pill form, which is huge for a kid who did not eat for ten years. She recently came off overnight tube feeds, which were started soon after transplant and have been slowly reduced over the past two years to the point where we were just supplementing daily oral intake. Matisse gets all her nutrition from food—and boy does she love to eat!
I think we are all enjoying the freedoms we now have. Hooking up to home parenteral nutrition (HPN) every single day for ten years was a big commitment and one that we got used to, but Matisse’s chronic pain and bilious vomiting ruled our lives. Even if we did make it to an event or a dinner, or just a gathering with friends, we often left in a hurry when things turned sour for Matisse—and they always turned sour. If Matisse made it school, I would be there every day to administer IV pain medication and more often than not, to pick her up early due to illness.
Since transplant, Matisse has enjoyed the freedom to swim, the energy to ride a bike, and the ability to sleep over at a friend’s house and even attend camp. She feels well enough most days to go to school and we’ve even on occasion been the last family instead of the first to leave an event.
Of course, post-transplant is not a walk in the park and we now have other issues we need to be aware of and monitor. Matisse still has an ostomy and always will due to a separate issue with her anal sphincter. We need to ensure her output is not too high, which could signify rejection. Any fever needs to be addressed immediately, as infection could cost her her life, just like in her HPN days. We need to monitor her immune suppression levels to make sure they are not too high or too low, and like the days of HPN we need to ensure she is not exposed to flu and viruses. So it is still a juggling act.
I had always described transplant as swapping the devil we know for the devil we don’t, and I stick to this. We knew intestinal pseudo-obstruction well; we knew Matisse well. Now we are getting to know post-intestinal transplant and how it affects Matisse’s life. This devil is certainly kinder to her, but she will always be medically fragile and under doctors’ care.
Oley: Could you tell us about Matisse’s passion for cooking?
Jodee:Once we learned that Matisse would never eat, we made a decision to make food a healthy part of her life. It seems strange, I know. However, food is a huge part of life of which we did not want to exclude her.
Matisse did not realize she could not eat for many years. We never stopped her from putting food in her mouth. Sometimes she would chew and swallow, but mostly her instincts told her not to. Food caused her tremendous pain and she soon learned that. She learned to chew and spit, which helped give her a taste without the pain. When Matisse was small, like most other littlies she owned teas sets and toy kitchens. I packed her school lunches when she started school and she would have great input into acceptable food—which, of course, all came home uneaten.
When Matisse was around age six, she really took a liking to cooking and would help me prepare family meals. Also at this age she starting watching cooking shows on TV and became almost obsessed. Matisse would entertain herself on the many days of being at home, too sick to leave the house, by chopping up vegetables, making marinades, and concocting all sorts of recipes using real food and ingredients.
Oley: How did the column with Cooking Light come about?
Jodee: Matisse made headlines after her transplant predominately because of our coming from New Zealand. However, as she did so well, she was a poster child for Children’s Hospital of Pittsburgh transplant program. Reporters were obsessed with the fact that this kid who could not eat for ten years was now not only eating and cooking, but her favorite food was squid. Here’s this kid who could never eat, but who has this very sophisticated pallet. She cooked for all the reporters, one of whom happened to be married to the editor of Cooking Light Magazine.
Oley: Any advice you’d like to share with parents with a child on the transplant list? Or for parents who may be facing this option for their child?
Jodee: I will always be honest and tell you the good, the bad, and the ugly. I welcome anyone waiting for transplant to contact me if you need some support. It’s not an easy ride, but neither is what you are going through now. For us, it has been the greatest blessing. We waited four years for organs and for two years, Matisse has predominately done well. We don’t know what the future holds but remain hopeful and positive that Matisse will be well for a very long time.
Everyone’s experience is different; there is no cookie-cutter version, so don’t get bogged down on the negative stories. Look for the positive, as well. Educate yourself, and once the decision has been made, know that it is right for you at this point in time. None of us know what the future holds; we all just do our best with the knowledge and tools we have today.
Oley: We are sorry to see you go, and hope to see you and Matisse again in person some day. In the meantime, we are grateful that through the Internet we’ll be able to keep track of Matisse as she grows into a teen and young woman.
Jodee: I am happy to be “friended” on Facebook by any Oley member. Just mention you are an Oley member if you send me a request. Or visit us on www.caringbridge.org/visit/matissereid.
LifelineLetter, March/April 2013