Growing up, I learned some things that I thought were absolute truths turned out to be untrue or merely shades of the truth.
Now that I am a mom of three very inquisitive high school freshmen, I am often questioned (interrogated?) about what I present as the truth. Part of this annoys me – a very small part. The rest of the time, the fact that they feel safe asking questions and challenging authority is refreshing. All I ask is respect, forgiveness and a chance to learn.
The biggest fallacy that I have had to face is that if someone needs an organ, that person will be on the transplant list. UNOS (United Network for Organ Sharing) is the clearinghouse for organs and tissue donation. Have you ever watched “ER” or “Grey’s Anatomy”? UNOS is a regular discussion between the doctors and patients. Rarely is a person denied access to an organ or tissue.
Reality is another story.
I have learned in the last seven years that access to an organ is so much complicated. Obviously, there is a process and organ availability to be considered. There is no doubt that the process is somewhat fictional on television, but it colors how viewers see UNOS.
I have never doubted that I would donate my organs and tissues. As parents, Harlan and I talked about donating Olivia, Ben and Rebecca’s organs if the unthinkable ever happened. My grandmother donated her body to Albany Medical College. This was process she started many years before her death, and she had a card in her wallet she proudly showed me a few times. My mother is an organ donor. Just a few months before Harlan was diagnosed with End Stage Renal Disease (ESRD) he received his new driver license with “organ donor” on the little card, although now he cannot be a donor. We were a family of potential organ donors and very proud of it.
Raising my three amazing kids hasn’t been easy since Harlan got sick. I’ve seen them go from carefree 7-year-olds to kids who appear to have a heaviness in them. Their father has gone from working full time and being active at home to being mostly ill due to ESRD. Now, at 14, the kids are aware that life is not always fair and sometimes even good people don’t get what they need. My kids love their father and will do almost anything for him. Setting up dialysis supplies, microwaving some oatmeal or just hanging out and watching a car show with him while he is having dialysis are just a few of the ways that they show that they love him.
The pre-requisites for getting an organ are long and involved. Harlan and I sat through the seminar listening intently to the representative. Candidates must have all dental work up to date, no obesity, non-smoker, no diabetes, no HIV, no skin cancer, no congestive heart failure, no high blood pressure and no substance abuse. A candidate also should not have severe neurological deficits or be over 70 years of age. (According to the UNOS website and Johns Hopkins website.) This is not a complete list, obviously.
Harlan is not a suitable candidate for a kidney. His main disqualifiers are multiple abdominal surgeries and blood transfusions.
Living for a long time on dialysis is hard on the body and mind. Harlan often feels trapped by the needles, tubes, wires and machines. We all know so much more about renal diets and what blood marrow is responsible for. The first time I had to tell the kids, “Don’t touch the blood in the refrigerator,” was memorable. I take care of dialysis and monthly blood draws. The kids are not afraid of blood now.
All families have stress. Ours is just a little different. I have hope, faith and friends that help me get through the darkest nights.
Jennifer Steuer is an Albany mom whose busy household includes her husband, Harlan, and 14-year-old triplets Olivia, Benjamin and Rebecca. Follow her on Instagram: jennifersteuer.