Transplant Trekking…

Like most things in life, it has been a process to get to where we are right now with Myka’s impending liver transplant.  While the details of this “transplant trek” may not be super interesting to many of you, I’ve decided to dedicate this post to just that — the process that has led us to this point so that I not only remember these details in years to come but also to help others who may be considering this option or find themselves in a similar situation in the future…or find themselves currently in a less than ideal or less than desired circumstance of any sort!

The potential of Myka needing a liver transplant was brought to our attention on Night 1 in the NICU — within hours of us learning of her likely diagnosis and while she was still fighting for her life through dialysis.  It was NOT what I wanted to hear; it added to the overwhelmed state I was already in; and it seemed foreign, unknown and made zero sense to me…just being honest.  In the months to come, Myka’s geneticist always (always) brought it up in passing at each of her appointments.  My feelings then were of sadness and frustration — we were finally enjoying time with our baby, not seeming to be drowning anymore.  This was an option for the future — why couldn’t the doctor leave well enough alone and let us be happy for one minute?!   My feelings now are often still of sadness and fear, but I look back with such gratitude that our doctor was honest with us from the get-go.  The possibility of a liver transplant has not caught us by surprise in the last six months but has been blinking on the radar from those first days.  As much as I hated it then, I’m thankful for it now.  It’s been part of the process — accepting and understanding that even on the “good” days there is something dangerously wrong within Myka’s body that we can’t ignore and that won’t “behave” itself forever.

Last spring we really began to look more seriously into the option of a liver transplant for Myka to hopefully reduce the effects of her MMA long term (or until there is a cure, for which we pray)!   A week after Myka’s hospital stay in June to fight a nasty staph infection from her port, we had several days full of pre-transplant evaluation appointments at Children’s Hospital of Pittsburgh to speak with the transplant surgeons and liver doctors, psychologists, social workers, financial advisers, transplant nurse educators, as well as lots of lab work, an EKG, echocardiogram, X-rays, ultrasounds, ETC….you get the idea!   Two weeks after that, on our way to a short vacation at the lake in Michigan, we got the call that Myka was approved and officially listed on the UNOS list for liver transplant as of the beginning of July.  I’m not going to lie – we exhaled deeply as we left for vacation after a very rough couple of months, only to get that phone call an hour into our trip.  (Last year on the way to the lake, we got a call that my husband’s grandfather had passed away…so next year on the way to the lake, please don’t call us!  🙂  I’m only sort of kidding.)  Moments like the one when we got that call can suck the life right out of me, when sometimes it feels like we just can’t catch a break.  Very quickly I can become jealous and bitter if I think about how great everyone else seems to have it, even though this is far from true and even farther from the Truth.

For several months we thought that we would be pursuing a living-donor option, in which my husband would donate a portion of his liver to Myka.  We started to plan a trip to the National Institute of Health in Bethesda, Maryland, to meet with Dr. Charles Venditti, the Senior Investigator of the Medical Genomics and Metabolic Genetics Branch.  (In other words, he’s a hero and innovator in the field of research of MMA!)  Our trip was scheduled for July of 2016, and one week before our trip it was cancelled for several organizational reasons.  However, we arranged a phone conference, and I was blessed to be able to speak with Dr. Venditti for almost an hour regarding Myka’s history, current health and possible transplant.  After that conversation, as well as conversations during the days of pre-transplant evaluation appointments and much prayer, we decided to no longer pursue the living-donor option, as Richie and I are both recessive carriers of the ineffective gene.  While our livers work fine, and we would still seek a living-donor option if it was our only option, we have instead chosen to wait on the UNOS list for a donor organ.  Myka was bumped up to status 1B in the middle of September, so we continue to wait for the right liver at the right time — for which we pray each day at 1:30 (her birthday is 1/30) — please join us in prayer!

As I wrote about in my last blog post, we’ve had one false alarm call so far as we wait for the right match for our baby.  I chose to write through our “transplant trek” today not to bore you, not just to chronicle this journey, but to relate to you.  While our current situation is a tad bit more out of the ordinary than some, it’s really quite similar to many life adventures that you are experiencing.  My emotions have included sadness, frustration, excitement, fear, anxiety, disappointment and even anger.  In my flesh, I have wondered why this path has been the one chosen for our family, why it couldn’t be a little easier for my sake.  And there’s what it all boils down to.  When I let myself focus on what I want, what would be easier for me, how I think things should go…that’s when I’m faced with a decision that not only holds the capability to alter my attitude but possesses the power to transform the trajectory of the trekking…

And so I must trek back to TRUTH…

Romans 12:2 says this, “Do not be conformed to this world but be transformed by the renewal of your mind, that by testing you may discern what is the will of God, what is good and acceptable and perfect.”

2 Corinthians 4:16-18, “So we do not lose heart.  Though our outer self is wasting away, our inner self is being renewed day by day.  For this light and momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen.  For the things that are seen are transient, but the things that are unseen are eternal.”

This isn’t easy or fun.  In fact, I dislike it…a lot.  And that is OK.  I don’t have to like the circumstances that I’m faced with, but I do have to consciously choose how to navigate through them.  Would you pray for me as I walk the journey that lies ahead?  I’m not going to do it all well or respond the way I should every time — my flesh is weak…but I desire to walk into this battle holding firmly to TRUTH — relying on the power of God and His Word instead of my emotions.

So that’s the LONG and short of it!  If you made it this far — you are a true friend (or family member)!  Thank you for caring for us!!