Transplant: A Musical by Julie Hinz

In the fall of 2011, at 42, I noticed one morning my ankles swelling, my eyes puffy, feeling rather punk. After an intense battery of tests and a kidney biopsy, I was diagnosed with Membranous Nephropathy, an inflammation of the “basement” cells of the kidney that filter protein and waste from the body. This is often a secondary condition brought on by cancer, hepatitis, diabetes, or the like; but the evidence in my case pointed toward a primary condition. Doctor’s could not determine how I got it, it just appeared. My body was dumping proteins like water in through a sieve. I underwent treatment for several months and it appeared things were moving along fine until August of 2012.  I became unemployed and uninsured.  I was fortunate that my doctors and the hospital continued to see me at a reduced rate and I was blessed to remain stable for quite some time.

In January of 2014 I secured employment with an Episcopal Church in downtown Chicago and was able to resume health care. All was going fine as my kidneys were holding steady and functioning well enough, though not nearly 100%. In October of 2015, after feeling absolutely crappy for about 3 weeks, I went to my regular MD to see if she could figure out why I was continuously nauseous and tired. A urine dip revealed I was back to losing a lot of protein and she sent me immediately to my nephrologist (whom I will refer to as . Dr. Naratadam G(my nephrologist)). Dr. G ordered an immediate second kidney biopsy knowing that would be the only way to determine the present condition of the kidneys. The biopsy revealed that my kidneys were functioning at roughly 10%. I had moved from General Renal Disease to End-Stage Renal Failure in the course of, well, moments.

How quickly life changes. Today I am still at about 10% kidney function and holding steady. This is mostly due to sticking to a strict Renal Diet, monitoring everything I put in my mouth, increasing exercise, keeping on top of my medication routine, and…well, prayer. January and February have been a blur of medical tests and doctor appointments to assess my body for kidney transplant. Because my condition is usually caused by another disease they were concerned that taking my immunity down to nothing might allow some latent primary cell to grow. As a precaution I have undergone some tests, like an upper and lower GI that are not usually necessary at my age. I appreciate the precaution. Also, as someone who has struggled with my weight all my life, the doctor is requiring that I lose a certain amount before I am listed for transplant. Thus, the forced focus on food and exercise. I appreciate the concern of the medical community. I hate this waiting.

Several things have become crystal clear in all of this. Nothing in our lives is truly ours to control. We may exercise control over things but “the Lord giveth and the Lord taketh away.” Our lives are in His keeping. If I am honest with myself, truly honest, there is more comfort in knowing that than thinking I am in control. He knows I will screw it up. So, I have learned to let him drive and I sit in the back…I don’t try to navigate, I don’t try to know where we are going. I simply sit back, enjoy the scenery, enjoy His company and let Him take me where He will, even if it be somewhere I had not intended or even want to go.

The second most important thing I have learned is that God puts people around us for a purpose. We are in each other’s lives to be IN each other’s lives. Not observers but participants. When people ask “how can I help?” it’s because they want to. I simply said, in my anxiety and fear “I’m going to need a kidney…” and the response of people willing to be tested for a match was overwhelming.  Sometimes you have to swallow your pride, shut your mouth and extend you hand…reach for help. Someone will be there simply because you have allowed them to see your need. So, for all of you who have read this far, here is my need.

First and foremost, prayer is of great comfort. Knowing I am lifted up before God is a great gift and if you can offer that, I am grateful. In human and base terms, the cost of this process is overwhelming (more than a quarter of a million dollars) and, while I have excellent insurance, I will still need to cover approximately $15,000 of it. This will include all my testing, surgeries, and post-operative care as well as that of my donor (should I be lucky enough to have living donor.) This does not include approximately $3000 in lost wages while I am out and the cost of anti-rejection medication which can run anywhere from $0 - $3000 monthly depending on the medications used. The first 6months is a cocktail of things they try and adjust and try another and adjust so it’s a long process until they figure out what combination works best for me…for the rest of my life.

To be honest, it was almost easier to ask for an organ than it is to ask for financial support but that is a matter of pride. God requires that I put away all pride and rely on Him. He has put resources/people in my life for just this purpose, to help in my time of need. He has been my constant guide and resource through this long and winding path back to full health and I know He will see His will done, in the end.

Thank you…for being a part of my journey.