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Need Liver – Will Travel

It was during a phone conversation on March 30, 2018, that my doctor suggested the idea for me to travel out of state to get a liver transplant. My knee-jerk reaction was, “no way!” We can’t do that! How are we going to pay for it? What will we do with our home in CA and our cat? What about my husband, Noah’s, work? How would this even be possible? My hepatologist understood all of my valid concerns, but after petitioning for additional MELD points (The Model for End-Stage Liver Disease system which prioritizes patients waiting for a liver transplant), she got me 28 points. But 28 would not put me at the top of the list in California. I would need to continue to get sicker in order to move to the top of the list in CA to start receiving offers for a liver. However, if I travel out of state to a center like Barnes Jewish Hospital in St. Louis, MO, a 28 MELD score would put me at the top of their waitlist and I would receive a liver a lot quicker than in CA.

My hepatologist gave me her top three suggestions. Number one: travel to Barnes Jewish Hospital in St. Louis, MO and get a transplant there so I don’t have to keep getting sicker and possibly die waiting. Number two: get listed at CA Pacific Medical Center and continue to get sicker in order to move up the waitlist. Number three: pursue a living liver donation. Noah was traveling for work at that time and I felt too overwhelmed to give my doctor an answer and told her I would talk to my husband. When Noah got home that evening, I advised him on everything my doctor told me and I assumed he would share my same “no way” sentiments. However, he instantly said, “Let’s go to St. Louis. We will do what we have to do to get you better.” I started crying as I was overwhelmed with gratitude for Noah’s support, love and dedication as a husband.

Fast forward two months, and Noah and I have recently returned from transplant evaluation at Barnes Jewish Hospital in St. Louis. This was round two of enduring a transplant evaluation as we have already gone through one at CA Pacific Medical Center (CPMC) in San Francisco, CA. I can best describe a transplant evaluation as a scavenger hunt…and not the fun kind. In St. Louis, it consisted of 20 hours in two days of non-stop tests, appointments and consultations. We were given an itinerary and flew to a city and center we’ve never been to before and navigated ourselves around back-to-back appointments. It was exhausting and mentally draining. Having one or two doctor appointments in a day can be tiring. Imagine 20 hours of them in two days!

CPMC sent all of my records from their transplant evaluation to Barnes Jewish Hospital. In addition to the records they received, my evaluation at Barnes Jewish consisted of an MRI of the liver, 30 tubes of blood work, 24-hour urine, EKG, chest x-ray, dental panorex, heart ultrasound, and pulmonary testing. The consultations included: social work, financial, transplant hepatology, anesthesia, nutrition, and transplant surgeon. We also attended a liver transplant teaching class.

Getting prepared for a transplant in-state or out-of-state is no joke. It takes a lot of work, coordination, determination, money, energy, and the will to live. It is a lot for a healthy person to endure, let alone someone who is sick and in need of a lifesaving transplant.  I need a new liver because of primary sclerosing cholangitis (PSC) and the fact that we can’t control my infections – cholangitis – which turn into sepsis. My doctors are concerned that I may not make it through the next infection and that is why I need a transplant as soon as possible. Flying to St. Louis was a huge task for us, especially with the concern that I would get sick while traveling. I dealt with liver pain, nausea and fatigue throughout the trip, and Noah and I were so grateful to get back home without an infection happening in St. Louis.

It makes me sad that myself and others have to travel out of state for transplants because waiting in our home state might mean we won’t survive. Getting a transplant at an out-of-state facility is a huge undertaking. It is not for the weak or faint of heart. It is for those who will do what it takes to survive. I’m so thankful that I have Noah’s support and love to make this happen, which I realize not everyone may have. My advice to those heading towards transplant evaluation: find a caregiver/supporter who is up for the task to endure this with you; take a small carry-on type bag on wheels and fill it with snacks and water as you may not get a break all day; create a binder with tabs to organize all of your paperwork; eat a good dinner after Day One and go to bed as early as you can because Day Two doesn’t get any easier; prepare for the “scavenger hunt” of navigating through the buildings to find all of your appointments; and try your best to breathe normally, as all of it will work out in the end.

As I write this, I still find it hard to believe that all of this is happening. It was quite surreal to hear the anesthesiologist discussing all of the tubes that he will place during the operation and the transplant surgeon discussing where he will make the incision around the one that I have along my entire rib cage as a result of my kidneys being removed 16 years ago. We sure don’t expect things like this to happen in our life, but we have no other option but to deal with it and as best as possible.

Since the call with my doctor, some of my knee-jerk questions have been answered. Thanks to the love and support of my husband, parents, family and friends, I’m realizing that this is possible and we can do this. Noah qualifies for Family Medical Leave Act (FMLA), which will allow him to be with me in St. Louis for a couple months. My amazing parents, who live in PA, have offered to take turns of staying at our home in CA to take care of our house and precious cat. If Noah has to return to work before I am released to come home, then my parents will take turns of being with me in St. Louis once Noah is back to work.

Next step for me is having the Barnes Jewish transplant team meet and decide if they will list me at their Center. Noah and I were very impressed with the Center and the individuals and we hope their answer will be “yes.” If so, then they will submit for approval to my insurance company. Once the approval is received, then they will petition to their regional committee to see if they can get the 28 MELD points that California received. If they are successful, then it is “go time” and Noah and I will relocate for several months to St. Louis, MO to wait for the gift of life, endure the surgery and recover from the liver transplant operation until they release me to return to California. Is this real life? Yes, it is, and I’m going to continue to fight for a better quality of life so that my husband and I don’t have to live in fear of when the next liver infection will happen and deal with feeling sick every day. I want to live a long life with my husband and be the healthy and strong wife that he deserves.

Thank you to my future donor and all donors who say “yes” to organ donation and allow lives like mine to continue on.

 

Have you gone through the transplant evaluation process? If so, where and what tips do you have to share?

 

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