First of all, I'm hoping that it's ok to post here. Please let me know if it's not. I did post this under special needs, but really wanted to hear from my new women/mommies/grandmothers friends, too.
Koby, my 17-year-old son has been on dialysis for almost a year, now. He was born with a metabolic disease, called Cystinosis, and resulting kidney disease, called Fanconi's Syndrome. In 2006, he was down to 19% kidney function, and was blessed with a donor kidney from my brother.
In February 2011, we found out that his body was rejecting the kidney. This past year has been so difficult for him. He has had 9 major surgeries, 27 hospitalizations, dialysis 4 hours/session, three days/week, and numerous other things that have really brought him down. His is a fighter, but MAN! Can't the kid get a break?!?
My husband was diagnosed with cancer 5 years ago, which was removed and treated, but that takes him out of the running for being a donor. I cannot give him one of my kidneys due to hypothyroidism and chronic hypertension. Of course, being a military family, we're about 1,400 miles away from our families, which makes testing for a match even more difficult.
The doctors said that we could start the listing process, once after he had been on dialysis for 6 months. So, we waited . . . and waited. Right at the six month mark, the donor kidney was causing all kinds of trouble, so it had to come out. This surgery put him further from starting the listing process.
As of now, over a year after finding out he was in rejection, he's still not listed. We have started the process, but there's so much red tape and so many time lapses happening, that it seems so far away. You can only imagine just how much emotional toll this has taken on him, as well as our whole family.
Tonight, though, he was back to his happy-go-lucky, resilient self. A reporter from NBC 5 Chicago's Health Watch sat down with him at the dialysis center and interviewed him for about 15 minutes, on camera, for a segment that will be airing on the 10 pm news on the 18th of April. Before and after the interview, the entire crew talked with Koby, and really brought his spirits up.
He knows he has also been my hero. But to hear someone (besides mom) praising him, and offering up their respect and admiration for his struggles gave him a new lease on life! It's just such a good feeling to FINALLY see him happy, and I just had to share!
Thank you for listening.
Koby, my 17-year-old son has been on dialysis for almost a year, now. He was born with a metabolic disease, called Cystinosis, and resulting kidney disease, called Fanconi's Syndrome. In 2006, he was down to 19% kidney function, and was blessed with a donor kidney from my brother.
In February 2011, we found out that his body was rejecting the kidney. This past year has been so difficult for him. He has had 9 major surgeries, 27 hospitalizations, dialysis 4 hours/session, three days/week, and numerous other things that have really brought him down. His is a fighter, but MAN! Can't the kid get a break?!?
My husband was diagnosed with cancer 5 years ago, which was removed and treated, but that takes him out of the running for being a donor. I cannot give him one of my kidneys due to hypothyroidism and chronic hypertension. Of course, being a military family, we're about 1,400 miles away from our families, which makes testing for a match even more difficult.
The doctors said that we could start the listing process, once after he had been on dialysis for 6 months. So, we waited . . . and waited. Right at the six month mark, the donor kidney was causing all kinds of trouble, so it had to come out. This surgery put him further from starting the listing process.
As of now, over a year after finding out he was in rejection, he's still not listed. We have started the process, but there's so much red tape and so many time lapses happening, that it seems so far away. You can only imagine just how much emotional toll this has taken on him, as well as our whole family.
Tonight, though, he was back to his happy-go-lucky, resilient self. A reporter from NBC 5 Chicago's Health Watch sat down with him at the dialysis center and interviewed him for about 15 minutes, on camera, for a segment that will be airing on the 10 pm news on the 18th of April. Before and after the interview, the entire crew talked with Koby, and really brought his spirits up.
He knows he has also been my hero. But to hear someone (besides mom) praising him, and offering up their respect and admiration for his struggles gave him a new lease on life! It's just such a good feeling to FINALLY see him happy, and I just had to share!
Thank you for listening.
Last edited:
