At the age of 28 Amanda was receiving her workup for transplant and was asked how she was able to maintain her attitude throughout her 13-year battle with Kidney Disease. Amanda answered, “It’s simple. I don’t get too anxious or worried. I take a moment to acknowledge it and move on. I take after my Dad.”
It was a hectic morning as I raced across Pittsburgh to pick up my brother for our six month post transplant check up. It was cold outside and I was dying for a cup of coffee. As we hurriedly entered the hospital, I scoured the waiting room looking for familiar faces. I looked forward to seeing the doctors and nurses with whom I had shared one of the most profoundly impactful times of my life.
My brother was called into his appointment as I sat in the transplant waiting room on a comfortable chair with coffee in hand, I noticed a young women holding a large box of medications in her hands. She had long, dark hair and a smile that reached her eyes. I was immediately curious about her. I knew she had received a kidney by the medications she carried. Everything else about her looked happy and healthy.
Here’s her story…
I was shocked to learn that Amanda had received a transplanted kidney only two weeks prior! She had a bright, sunny disposition and I could clearly see she had a wonderful outlook on life. As we started to talk, she immediately mentioned her seven-year-old son who was obviously a light in her life.
Amanda shared her experience and how she got to this place with me. Her symptoms started at the age of 15 when one morning she woke up with pain that ran from her right lower back to her side. She tried, but could not walk. By evening she had a fever and was vomiting. When her Mom took her to the pediatrician the next day, she was diagnosed with the flu. Amanda’s Mom pushed for more tests and it wasn’t long before they realize her creatinine levels were off. Normal levels of creatinine in the blood are approximately 0.6 to 1.2 milligrams and Amanda’s were much higher.
Amanda began a regimen of going to the children’s hospital every three months for evaluation. It wasn’t until her 22nd birthday that the pain flared up again. She ignored the pain, thinking it would go away until a horrible dream of death one night caused Amanda to face the reality that she needed to have this problem checked out. Her creatinine levels were at 1.9.
And… two months later Amanda and her husband discovered that she was pregnant! Due to her precarious health, her pregnancy was deemed “high risk” and Amanda was monitored closely. The good news is that she carried her baby to full term and she and her husband welcomed their beautiful and healthy son to the family?)
A year-and-half later, Amanda’s condition deteriorated to the point that she had to start dialysis. She was transported by ambulance to the main dialysis center in Pittsburgh. A port was put into her jugular and she started dialysis that day in the hospital. Her attitude remained upbeat and she was put on the list to find a donor. Her immediate family and friends were tested and were either not a match or unable due to health reasons.
During the first year of dialysis she found a center nearby and was able to maintain her job along with her dialysis appointments. Not surprisingly, Amanda found she was the youngest person there, every other day she would go to the clinic and see the same nurses and patients. She would lie there for four hours at a time while they emptied out her blood, cleaned it and put it back in her body. This was an exhausting process, particularly with a young child at home.
During this time Amanda had at least six replacement catheters in her chest (catheter is placed by puncturing the internal jugular vein in the neck) and the catheter is then advanced downwards toward the chest). A catheter is used for exchanging blood to and from the hemodialysis machine from the patient. Most patients would have one added in the arm. However, Amanda’s never matured enough to use it.
Amanda eventually had the opportunity to do home dialysis Peritoneal dialysis (PD), which she did for two years before receiving her transplant. Home dialysis gave her the flexibility to do it at night for eight hours while she slept and she didn’t have the exhaustion.
At times she felt it would never end. But after three years on dialysis her Aunt flew to Pittsburgh to donate her kidney directly to Amanda.
Amanda is so proud and grateful of her Dad’s sister who after surgery is doing a 100% better. At 55 years of age she is retired and living in California and watches her three grandchildren while her own daughter and son-in-law are stationed overseas in the US Air Force.
Studies show that a kidney from a living donor can last up to 20 plus years. Amanda is taking good care of herself. She is healthy and recently got a membership to a health club. She is focused on eating well, exercise and taking her medications as directed. And, I can’t help but think that her positive outlook on life makes a huge difference in her overall success.
Amanda’s hope is to have more children, and she happily tells me that she will be talking about just that when she meets with her doctors in January, which will be her first anniversary with her new kidney.
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