Dec 13, 2017 Latest post:
Feb 25, 2021
On April 14, 2009, Amanda was scheduled for her required physical to be a competitor in the Special Olympics. During her examination, her blood pressure was found to be extremely high for a 9-year-old. During that time, we also asked about her itching of her arms and legs and how she's always thirsty. The high blood pressure was a sign of the body in distress and the itching was a sign of kidney problems.
April 16th Amanda was scheduled for an appointment at the Sandford Children's Hospital for an echocardiogram. Her blood pressure still elevated and an innocent(harmless) heart murmur was discovered. Because her heart was not causing the high blood pressure, additional tests were ordered immediately. Blood and urine samples were taken and we were whisked off to get her kidneys checked with two different ultrasounds. She had been fasting for the first test and couldn't eat or drink for the kidney ultrasounds. After 6 hours of testing, she could finally eat and drink. By 6pm that night, they discovered that her creatinine level was 2.1 and her kidneys were only functioning at 25%.
Our itinerary for our Mayo Clinic visit was being prepared for us late Friday afternoon and was to be picked up by 5pm Monday. There are no pediatric urologists in South Dakota, so our referring doctor, Dr. Paul DeJong, felt more comfortable with us going on to the Mayo Clinic. We packed our bags for the week. Our friends, Dan & Sondra Patrick, were gracious enough to take Maisie for the week. She was very concerned about Amanda, but excited to stay with her best friend, Haley, for a whole week! We talked each night and her first question always was, "How's Amanda?" Her aunt Kay took care of her hamster, Chip, and Grandpa Dave took care of the rest of the zoo.
On Tues, Amanda was fasting again and started the day with blood tests. After her first "poke," she was none too thrilled to go onto the next test. She was now being tested as to how fast her kidneys were filtering. She was to drink lots after being injected with a dye. When the nurse asked what her favorite drink was, of course, POP was the answer. She happily drank two 12oz. cans of diet Sierra Mist while watching Nickelodeon with Mom & Dad by her side. The other cool thing was the "potty" with wheels right in the room!
Finally, at 10:30 on Wednesday, we met Dr. Carl Cramer, our Pediatric Urologist. He did some thorough checking of her blood pressure and all body parts. He then told us the worst news we had imagined--Amanda will need a kidney transplant.
When she was tested at 3 months for her visual impairment, she had many tests and an ultrasound of her organs was done. Her kidneys are the same size as they were in 2000. The left one is not functioning at all and the right is now at 15-20%, which makes her qualify for a transplant. Of course the doctor had to give us all of our options--do nothing, wait until the kidneys fail and then she would endure dialysis-which only gives a person 10% kidney function, or a transplant from a live donor which would give her 50% kidney function, which will enable her to live a full life. The donor kidney lasts between 15 - 40 years, so she will likely need another transplant in her life.
Without a doubt, a transplant is the option we want for Amanda. Dr. Cramer left for a short time for us to read and sign a document for him to go ahead and get things going. By 3:30 pm, we had a new itinerary with many, many more tests and consultations for Thursday and Friday.
Amanda was such a trooper! She had 15 vials of blood drawn from her that next morning after fasting(again). She had the nicest nurse, Janet, and didn't shed a tear with her daddy by her side. We rushed to the cafeteria after that and got her an o.j. and a banana, her color returned immediately. Poor kid had to endure an x-ray of her organs, to make sure they are of normal size, and a kidney influx test soon after. I took her into the kidney test, they often only let one parent come in. The test showed her bladder is normal, so good news there. :) (By the way, she cried for her daddy thru that test) After one of the nurses learned that Coke is her favorite drink, she had a cold one after that test too. Does everyone know that Amanda's only motivator is a soda? Now you do. :)
On Friday it was mostly consultations with our transplant team. We have a transplant coordinator who makes appointments for us including a financial consultant, a transplant class, a dietition, and surgeons. We also met with a doctor in charge of controlling infectious diseases. Amanda had to get FIVE vaccinations, which will cover her for the rest of her life. Transplant patients take drugs to lower their ability to fight off infection so the body doesn't reject the new organ, so she's covered for college. It was a sore end to the week, but we are so happy to be home.
God has shined his light through so many wonderful friends and family. We are so very blessed. We came home to hugs, visits, calls, cards, and gifts and found many kind words through emails. Bill and I feel stronger already to know we have such support from those around us. THANK YOU everyone for your support, it means so much.
I will be the first one tested to be the donor for Amanda. My blood is being used for many tests to see if I pass the first round. If so, there are 2-3 more days of testing required to make sure I am a perfect match. I am hoping with our next round of appointments starting Monday, we will get some good news. Bill is unable only because of problems with kidney stones in the past. There other stipulations, but I have the toll free number to call if you would like find out how to be a donor. You must be between the ages of 18-40. If you are interested, call: 1-866-249-1648.
So much has happened in the last 11 days, I will probably add things that I have missed another time. I hope I can keep everyone informed and look forward to the sweet words from all of the wonderful people in our lives and read them to Amanda.