The Roach Family Story

January 1, 2015 / admin / 1 Comment / Living with ARPKD/CHF

Harrison’s Journey with ARPKD

We were an average family, myself, my husband and our son. Then Harrison came along. He was planned and much wanted and already loved. My pregnancy was good with no complications until 36 weeks when I went into labor. He arrived and after an hour of trying to keep his temperature at a good level, the doctors felt he needed some help in the NICU. Harrison was diagnosed with ARPKD. We had never heard of this condition and didn’t have any kidney problems in either of our families. That was the start of a very bumpy ride.

Harrison continued to need hospital care over the first year without patient appointments and stays on the wards. He had difficulty feeding which obviously meant growing and thriving was hindered. His blood pressure was at times a battle but the most troubling of all was his difficulty in breathing. His kidneys were growing faster than he was and his lungs just didn’t have room to inflate properly. He squeaked, whistled and wheezed. It got to the point where he was in intensive care on a ventilator after tuning blue in the car on the way to the hospital. It was decided the best way forward would be to remove one of Harrison’s kidneys, which was the best thing for him as he could now breath and eat/feed better. He was 8 months old by this point and we could start to enjoy him and see him progress and grow. This was the scariest and stressful time ever.

Harrison is now 4 1/2 years old and is a loving, funny, intelligent, happy, sweet boy. He has growth hormone treatment each evening. He gets Aranesp injections each month and iron infusions as required as well as his regular medications. He still has hospital visits, which over time has gone from every two weeks to around every two months. We try to keep everyday life “normal” and have learned to take each day as it comes. Harrison is now on the transplant list for a combined liver and kidney transplant. He has been on it for seven weeks now and we are hoping it won’t be too long a wait. His liver is relatively okay but it’s his kidney dictating events as his creatinine is over 250.

We are a stronger family now and very proud of Harrison and his big brother Mackenzie who is 14. Mackenzie has had to deal with situations and events you wouldn’t ask an adult to have to deal with and has done this with great maturity. We are positive for Harrison’s future and will continue to love and support him to help him achieve his full potential in life. Primary school is his next chapter in September as long as the transplant coordinator doesn’t call first.

ARPKD & CHF is a cruel disease and affects the whole family. You can’t let it beat you. Stay positive.

Kind regards,

Melanie & Michael Roach