Julian’s Story

Site created on May 13, 2019

Welcome to our CaringBridge website. Because some have asked for more information, we are using CaringBridge to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. My journey began nine years ago when I was diagnosed with non-alcoholic cirrhosis of the liver. Since then, I've had numerous health issues ... surgeries and infections ... related to this diagnosis, and have been in and out of the hospital throughout these years. In January of last year I began doctoring at Mayo because someone volunteered to be a living liver donor for me. In this process, a portion of the donor's liver would be removed, while all of mine would be removed and replaced with the donor's liver. Each portion would then grow to the person's needed size (height, not width). In January of this year, I was placed on Mayo's transplant list, but not on UNOS (United Network for Organ Sharing) because my MELD score (a combination of five scores relating to the liver) are not high enough. A needed score of 15 regularly was required, but because my symptoms have increased, the doctors determined that I would benefit from a living donor and have allowed my donor to begin the process of being tested. My body is exhibiting signs of a later stage liver disease. My platelets are very low, causing me to become easily fatigued. My spleen is, as one of my doctors said, "rather impressive," as it is much larger than it should be. I am now getting a weekly paracentesis, a procedure which drains the accumulating fluid from my abdomen because my liver does not work adequately. The technician is able to get anywhere from 6.5 to 11.5 liters each time. I have had multiple hernias because my insides have weakened. I have a very large one now that cannot be operated on because the mortality rate is extremely high. It will have to wait to be fixed until there is a transplant. And, there's always more pain than I'd like! I spent two nights in the Mayo hospital, very unexpectedly, last week while they were trying to decipher the extra pain I was having. While there, some difficult conversations were had again: more people die from this than get fixed, and our donor may not be a match (only 1 in 4 is), for just a couple of them.  We know. We understand.  But maybe what they don't realize is that God already knows the end of this story? That He is always good? That He is not bound by man's science and knowledge?  We have a peace that only comes from a secure trust in and a relationship with a loving God. May we live our lives as if God matters, and may we always point people to Him as we accept His will for our lives.

Newest Update

Journal entry by Kathy Suarez

It's been awhile since I've posted. I guess I just didn't even know what to say! Julian's been in and out of the hospital and transitional care centers. In fact, from the end of December to March 6, he was home maybe a total of two weeks.

Our kids flew home this week to go with us to appointments at Mayo. They were able to ask questions and hear information first-hand, rather than through my interpretation. Our hearts have been so encouraged to have them here. 

Julian's liver numbers were good, which would normally be a great report, but he needs them to be not so good in order to move up on the transplant list... it's a catch 22! He is one of the ones who exhibit many of the stage 4 issues without his liver numbers showing that, yes, he is in stage four.

The doctor's recommendation is that we have anyone test who may want to be a living donor. Information about being a living liver donor and the subsequent form are found at https://www.mayoclinic.org/tests-procedures/living-donor-transplant/about/pac-20384787. 

We are always prayerfully considering God's will and how He would choose to direct. We would never want anyone else to do otherwise.

Thanks for remembering to ask and carr about Julian's journey. Thank you for praying for him. So much strength comes at times we don't even know that others are upholding us, but we are aware someone has.







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