Two years ago, when I was visiting the National Institutes of Health for days of marathon tests, I met a woman who has had an everlasting impact on me. She was staying in the little hotel by the NIH and we ran into her here and there over the course of the three days. I was instantly drawn to her. She reminded me of my Grandma Kay for some reason, and it wasn't something as simple as out outward appearance. It was a deeper air that she had about her soul, the way she carried herself with such grace. Before I knew the story behind why she was attending a government research hospital, I watched her intently as I worked up the courage to approach her and ask her more questions. (That is an extremely special aspect of the whole NIH experience, you know everyone else there is battling something serious and because of that, you form an immediate bond.)
While observing her, I admired her boots she wore every day to the hospital. She seemed so put together from afar, every morning as we boarded the shuttle bus to the grounds of NIH. By the time my experience there was over, I learned her reasons for being there. She had tumors all up and down her spine that were killing her. She was out there in hopes of lengthening her time here, even by a little bit.
I don't know if she is still alive. I have thought of her so often over the course of the last two years. Her poise up against something so brutally unfair, her strength in continuing to fight up until the very end, her kindness that practically radiated from her through her heartbreak.
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"Sometimes I think we can learn everything we need to know
about the world by reading fairy tales.
Be careful, be fearless, be honest.
Leave a trail of crumbs to lead you home again.
(Alice Hoffman)
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The most incredible thing about my whole kidney transplant experience is that my mom's kidney has always worked beautifully. In the 19 years since the surgery, I've never had an episode of rejection. That practically never happens. I've definitely had many obstacles and other complications related to transplant, but they have been diabetes from too much prednisone and problems with infections because of a weakened immune system.
Last Friday my nephrologist (kidney doctor) told me that Epstein Barr is again active in my system. I was 95% sure that is what was causing everything that has been going on with my lately, including but not limited to my extreme exhaustion.
Epstein Barr and I are old friends. My doctors believed it first came from my mother's kidney. It has been causing me extreme stress on and off over the last 19 years. It is a complicated thing to explain quickly and precisely, but I've had many ask me about it lately and I wanted to write it all down for my own sanity and to assist others.
When you have any kind of organ transplant, you are required to take immunosuppression drugs which lower your immune system so that it doesn't attack the newly transplanted organ because it recognizes it as a foreign object in your system. 99% of the time, you have to stay on these anti-rejection drugs for the rest of your life. The majority of the time, these medications are a crucial part of a successful transplant.
In my case? I had to taper these medications slowly until I wasn't taking them at all, in order to prevent me from ending up with lymphoma and possibly losing my kidney as well.
Let me back up a little bit. For years I was extremely sick with EBV and CMV. Two viruses that caused absolute havoc on my body because my immune system wasn't strong enough to fight them. Simple tasks left me completely and utterly exhausted; I would shower for a day of junior high and end up in bed for the rest of the day, unable to do anything else. The lymph nodes in my neck would swell and sting constantly, I lost my appetite completely and was nauseous all the time. Headaches, fevers, chills, sore throat, swollen and painful spleen. There were hospital stays that lasted weeks, PICC lines (kind of like an IV that is more permanent) on two different occasions to administer heavy duty antibiotics, CT scans every 3 months for years to keep an eye on my lymph nodes to make sure I didn't have lymphoma. I had my tonsils and adenoids removed as well to see if that would help. All of this during my early teenage years. The best part of all this? A long term side effect was kidney damage.
After numerous conversations and meetings between my pediatric nephrology team and infectious disease doctors, it was decided that ultimately we had to taper off all my medications that suppressed my immune system in order to give it that boost to fight off both EBV and CMV enough so that I could function, not in constant worry of developing lymphoma. I held my breath and hoped at the very least I could get everything under control, even if it meant losing the kidney my mother so graciously gave me. It was one of the scariest times in my life; it felt like a horrible, terrible gamble on all accounts. Probably because it was.
One of the million of miracles in my life is that everything worked out great. I didn't have any episodes of my body rejecting my kidney, even with the decrease in meds. Even when stopped completely it was as if my body thought,
"Yes, we know this kidney...it is a part of us. We are family." I don't know of another kidney transplant recipient who has been able to stop taking anti-rejection drugs without serious consequences. I am so unbelievably lucky in that aspect.
It has been over 10 years since all of this happened and my kidney function has remained magnificent throughout it all. I haven't been hospitalized because of EBV or CMV either.
Last fall I dealt with EBV and my nephrologist (kidney doctor) wasn't sure what to do...so we kind of let it ride it's course. I type that nonchalantly, but it was hell. And here I am again, a year later with all of it active again and very little answers. It feels worse this time than last year, particularly the fatigue and the pain in my lymph nodes in my neck. My nephrologist is confused and doesn't know what to attempt because hypothetically, my immune system should be strong enough right now to keep the virus under control so it isn't making me feel so terrible. She has referred me to an infectious disease doctor because my case is not common. However? The fabulous ID people cannot get me in until October 28th. I let frustration rule because of this for a few days, then yesterday?
Yesterday I woke up ready to move forward, even if I had to do everything myself. I started calling, emailing, reaching out to people who treated me way back when I was 13 and beginning this specific roller coaster. Within 2 hours I had replies from 2 different doctors I trusted, one local and one an expert in all of this. One opinion is that I need to have a biopsy of the lymph nodes in my neck in order to be positive about what is going on. I've also been researching two other potential treatments that have me hopeful.
And here is the thing; today I took a bath with Sookie with a dragon's egg bath bomb from
LUSH, I watched as family and friends celebrated the soon arrival of a new little being named Hazel, I laughed at little girls wearing frilly dresses while playing in the dirt, I witnessed Sookie's eyes light up with fascination as she watched Timmy the Turtle creep around on the grass, I was grateful for a b12 shot and the assistance it will provide my body, I clapped with glee as I sat in our cozy house watching crazy awesome Utah Utes fans storm the field as we upset Stanford.
So, whatever comes next? I'm ready for it.
