Transplant - An Ongoing Journey

As I sit here in the hospital with Kai as she recovers from another bout of CMV (for more information on CMV, click here), I am reflecting on some of the questions that people have asked me regarding Kai, her transplant, and her continuing health. 

I think one of the most frequent misconceptions about transplant that we encounter is that, once the transplant is done, recipients go on to live 100% "normal" lives and that's the end of the journey.

Well, they do live normal lives; a different kind of normal. Transplant recipients have a whole spectrum of "normal", in fact. Once the transplant is complete, the journey has just begun. Especially for children, who are often not equipped, psychologically or emotionally, to deal with this journey when it begins.

"Normal":

Kai has a normal day-to-day life, now that she has recovered from her transplant surgery. Full recovery, by the way, took almost a year. Her "normal" routine includes taking anti-rejection/immunosuppressant medications to keep her from rejecting her "new" liver. Kai also has frequent trips to the hospital to get her blood drawn and sometimes have other tests and routine check ups to make sure she is still on track and not heading into rejection. She, occasionally, has to take supplements to help keep her kidneys functioning well or to increase her iron or magnesium which, for some reason, is often low in transplant kids. Another degree of "normal" for Kai includes being admitted to the hospital when she gets a common cold, flu or other infection/virus. 

This time, even though Kai is being discharged after 3 days, she will receive daily Home Care from a nurse for the next two weeks (at the very least), twice daily infusions of a cytotoxic drug that is considered a potential human carcinogen, teratogen, and mutagen, and have weekly follow-up appointments and blood work here at Georgetown University Hospital (where she received her transplant). If she has any complications, she will be readmitted.

"Normal" for Kai, means staying away from people who might be or have been around anyone who might be sick. It means carrying sanitizer every where we go and applying it liberally and frequently. It means not being able to go to parties with lots of people we don't know or at places like Chuck-E-Cheese's because of the risk of contracting an illness. It means always having a hospital bag packed and ready to go. It means being stuck over and over with needles and being held down by people who love and care about her; people she trusts. It means that she has some psychological back-lash from dealing with painful experiences, both physically and emotionally. It means that she often pushes beyond other people's limits because her limits are so often breached, which is frequently observed and classified as bratty or "bad" behavior by people who don't know or understand. Kai has also developed an intricate, imaginary world that she retreats to, to help her deal with some of these things, complete with it's own cast of characters and even a special language. 

Kai can tell you which arm is best to draw blood from, and where on that arm the "good vein" usually is. She has a preference of where to tie the tourniquet (over her sleeve), how she prefers to be held, how many vials of blood are usually taken and that she prefers to have the needle pulled out rather than "snapped". She has terrible luck with peripheral IV's (as many transplant kids do), her veins are very fragile and scarred and they have a difficult time sedating her because of this. She has woken up during several minor, but painful, surgical procedures. She has a psychological sensitivity to being touched anywhere near an IV and hates to have her lines flushed, which can make caring for her in these situations a little difficult. She loves her PICC lines for this reason, because they don't cause as much discomfort but, they come with an increased risk of other infections, mainly staff infections that are resistant to antibiotics and can be deadly. 

Despite all this, Kai is just a "normal" 4-year-old kid. She loves to dance, twirl, sing and play with her friends. She has an indomitable spirit and sunny disposition, even when she's not feeling well. We've been told by many that she inspires them to push through their own difficult experiences. 

Kai's journey will last her whole life. There will never be a day when she won't have to worry about going into rejection, or getting sick. She will always have to deal with the psychological trauma that the experiences she must endure have caused. She will never be able to safely travel to places like India, Africa, or even Mexico. She will always live under the threat of side effects, like an increased risk of developing certain cancers or kidney failure. These things are her "normal".

While that may seem overwhelming and difficult, and it can be, we try to bear in mind that she is really fortunate in her situation. There are many, many others who are not as fortunate as Kai and have to deal with so much more. Kai knows this, as well, and we remember those people in our Loving-Kindness practice often and pray that their suffering may ease. 

Kai is no stranger to the concept of death; some of her small friends have passed on and that has required explanation. She is no stranger to sickness, pain and fear. She is also no stranger to strength and has a better concept of bravery and forgiveness than most adults I know.

Kai is Amazing. Kai is Love. We are blessed to be able to have her in our lives, to remind us to live each day fully, in the moment and with true love and compassion. We wouldn't change a single thing about her or trade one moment with her. This is her journey and we are glad to share it with her.