The Hard Truth About Transplants – Spotlight News

Growing up I learned some things that I thought were absolute truths that turned out to be untrue or just shades of the truth.

Now that I am the mother of three very curious high school students, I am often questioned (questioned?) about what I present as the truth. Part of it 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 for is respect, forgiveness and a chance to learn.

The biggest mistake I’ve had to deal with 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 organ and tissue donation. Have you ever watched “ER” or “Grey’s Anatomy”? UNOS is a regular discussion between doctors and patients. It is rare for a person to be denied access to an organ or tissue.

The reality is another story.

I have learned over the past seven years that accessing an organ is so complicated. Obviously, there is a process and organ availability to consider. There’s no doubt that the process is somewhat fictional on television, but it colors the way viewers view UNOS.

I 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. It’s a process she started many years before she died, and she had a card in her wallet that she proudly showed me a few times. My mother is an organ donor. Just months before Harlan was diagnosed with end-stage renal disease (ESRD), he received his new driver’s license with “organ donor” on the little card, although he could no longer be a donor. We were a family of potential organ donors and we were very proud of that.

Raising my three amazing children hasn’t been easy since Harlan got sick. I’ve seen them go from carefree 7-year-olds to kids who seem to have a heaviness in them. Their father went from full-time work and housekeeping to being mostly sick due to ESRD. Now, at 14, the children realize that life isn’t always fair and that sometimes even good people don’t get what they need. My kids love their dad and will do almost anything for him. Setting up dialysis supplies, cooking oatmeal in the microwave, or just hanging out and watching a car show with him while he’s on dialysis are just a few of the ways they show they love it.

The prerequisites for obtaining an organ are long and complex. Harlan and I sat throughout the seminar listening intently to the rep. Applicants must have all up to date dental work, no obesity, non-smoker, no diabetes, no HIV, no skin cancer, no congestive heart failure, no high blood pressure and no substance addiction. A candidate must also not have severe neurological deficits or be over the age of 70. (According to UNOS website and Johns Hopkins website.) This is obviously not a complete list.

Harlan’s not a good 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 the mind. Harlan often feels trapped by needles, tubes, threads and machinery. We all know a lot more about kidney diets and the responsibility of the blood marrow. 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 tests. Children are not afraid of blood anymore.

All families are stressed. Ours is just a little different. I have hope, faith and friends to help me through the darkest nights.

Jennifer Steuer is a mother from Albany whose busy home includes her husband, Harlan, and 14-year-old triplets Olivia, Benjamin and Rebecca. Follow her on Instagram: jennifersteuer.

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