July 13 marks the anniversary of my double organ (liver and small bowel) transplant; this year being my 14th year out. Every year that passes I grow more appreciative of the gift of life I received as I experience new things that I otherwise would have missed out on. I would have not have experienced graduation from high school, college, and university, my first job which I still enjoy to today, watching my brother’s family grow, my sister setting out on her career in radiology and hearing of her travels around the world, or my parents buying a lovely house in the mountains only to see it burn down in a fire, then to watch them rebuild it better than before and retire in it, the list could go on. I have been able to live 14 years in much better health than my prior 11 years aside from occasional set backs dealing with dehydration and kidney stones.
One of the caveats of an organ transplant is that a patient’s immune system naturally fights the foreign organ and we must take anti-rejection medication for the rest of our life or else our own body will kill off our transplanted organ, and in turn, kill us. However, this year’s anniversary is particularly extraordinary as it marks a significant step forward in my life. It marks the first year out that I have gone without any anti-rejection medication. That’s right, I’ve gone against the biggest threat to my life; call me crazy, the doctors certainly do. In fact, docs at UCLA can’t believe what they’re witnessing because, obviously I’m an exception to a very strict rule. They have told me that there is about a 10-20 percent success rate in transplant patients going of their medication. But there’s another astonishing thing. Not only am I an exception to the rule that transplant recipients must take anti-rejection medication or else, but it turns out I am the first intestinal transplant patient they know of who’s ever been able to do this. From what I’ve learned from my doctors and some medical journals I’ve researched is that this may (notice the “may”) be due to a genetic factor where the patient’s body is simply more accepting of foreign organs. My doctor calls this surgical tolerance, I call it crazy luck. Basically, after a given amount of time, the patient’s immune system gives up its fight against the organ and accepts it as a part of the body. This is most common in kidney transplants and entirely unsuccessful in hand transplants with varying results in other organs, at least until another exception to the rule comes along. One other thing that’s been tried with success is transplanting bone marrow simultaneously with the organ, effectively replacing the patient’s immune system with that of the donor’s. This was not done with me though.
I’ve been asked by several doctors, residents, and other medical professionals at UCLA why I would take such a risk. I really don’t have an answer since I didn’t do this intentionally, but rather through neglect. I was habitually bad at taking my medication on any regular schedule and over the years had got so off track that I went from taking it three times a day, to once a day, to a couple times a week, to a month, and eventually I came to the conclusion that perhaps my body just simply didn’t need it anymore. This is one of those medications that you just don’t miss a dose, it has to be taken on a very regimented schedule. My doctor has some patients who have missed a couple doses and immediately rejected, but there are some of us who simply don’t reject. In fact, aside from the hydration and kidney stone issues I’ve had, the side-effect of hand tremors caused by the drug, which made my work on computer hardware work difficult for me, has entirely gone away. I also can’t count one incident of a common cold or flu that I’ve caught since I seized taking the medication, which suggests that my immune system is alive and well right along-side my transplanted organs.
So why the risk? Of course I could always reject by not taking my medication. But this is true even with taking the medication, it isn’t a 100 percent guard against rejection. What if I just don’t need it and I can live my life without the medication and it’s side-effects of a weakened immune system? One of the coolest things about this is that I’ve already been asked to participate in a study of non-medicating patients that could help them isolate the reason why some of us can tolerate transplantation without drugs. However, this particular study primarily consists of adolescents with liver transplants, and because of my exceptional case of being the first intestinal and double organ transplant patient to successfully go of medication I could skew the results of the study. I’m waiting to hear back from the researcher on whether the ethics board overseeing the study will allow it, and if so, participating is as easy as giving a blood sample.
Yes, it’s a huge risk and the doctors have informed me multiple times what could happen and what I need to watch out for (weight loss, lack of hair/fingernail growth, etc) and let me tell you, I can’t count how often I need to cut my nails or hair, and I’ve actually gained about five pounds in the last two months. Funny thing happened at my recent doctor’s checkup. The doc and his residents asked me if I was at least maintaining my weight. When I told him quite the opposite was true he just looked at the residents, shrugged, and said, “Well, there ya go.”. They really are at a loss of words.
What better way to use my second chance at life and my body’s natural resilience than to contribute to the medical community in hopes that they can discover the cause of this anomaly and possibly get other patients off their harmful medications.
If you know anyone that would like to read this, spread it around or get them in contact with me. I think the best thing my story can do is give hope to patients and parents going through similar difficulties I and my parents went through or to medical professionals seeking new solutions for their patients. However, this is not a guide! I don’t wish for other patients to get the bright idea to, as my doctor put it, “Jump off a diving board hoping there’s water in the pool.” I have thought for many days of what I’m doing here and it took a long period of lessening my medication to be confident that my body could sustain itself. I’m fully aware of the risks involved and it’s not a leap of faith to take lightly. I appreciate feedback on anything I put out there, constructive criticism only helps us grow and the response I get may push me to elaborate more on what I’ve detailed here.