Ladies I've Got Fantastic News

[Tri Girl]

Wow- that's fantastic news!!! Please keep us updated as everything progresses!!!

[sbctwin]

Good news, indead. What a wonderful gift your brother is giving.

[Jenn]

Oh it is SO nice to finally read or hear about something good and positive happening!! What a TRUE blessing that is. Your brother is an amazing person!

[Python]

My brother is a wonderful, caring person. Best brother and Uncle in the world

We have a kidney disease called Alports Syndrome which runs in our family on my mother's side. It's a genetic hereditary disease. Unbeknown to me, I inherited the bad gene and passed it onto my son. It's a disease that hits the males much harder than females. Most females don't even know they've got it. Some, like my grandmother go on to full kidney failure. She died in 1934 because of it. We knew she died of kidney failure but didn't know what had caused it and had no idea it was hereditary. Of course, in 1934 there was no dialysis or transplants, so she died at the relatively young age of 55.

My brother inherited the good gene so he doesn't have the disease. Unfortunately Ian has full-blown Alports. The disease also causes eye and ear problems (why I wear specs). Ian is also deaf and wears hearing aids. He's also very short-sighted. Basically, what Alports is, is a collagen is completely missing from our DNA structure. That collagen is the one that forms the tissue for the kidneys, ears and eyes, so the filters of the kidney eventually end up looking like a frayed rag with holes in it, the ears gradually go deaf (total deafness eventually is not uncommon, Ian has about 20% hearing in his "good" ear) and the lens of the eyes are mishapen, hence I'm very long-sighted and Ian is very short-sighted. It also damages the peripheral nerves so Alports people often suffer from Reynauds disease as well - one of the reasons I hate getting cold.

The kidneys fail over a period of time. We first knew there was a problem when Ian started passing blood in his urine at the age of 11 months. The deafness started to show at about 2 years old and gradually got worse so that by the time Ian was 10 he was quite deaf. At 15 his kidneys completely failed and he's been on dialysis all this time. He never complains and tries very hard to lead as normal a life as possible between dialysis sessions - even coming out on his bike with me although we don't go too far as he tires easily.

We're really hoping things go well as Ian's never known what it feels like to be healthy.

My kidneys could fail too and I do know, although they work, they're not 100% and that's why I couldn't be a donor for Ian which was a pity as I would have been the best match. This placed the hospital in a bit of a dilema. Their reasoning was if my kidneys failed then my brother would be an excellent match for me. My reasoning was let Ian have my brother's kidney as there was no guarantee mine would fail and I've at least had something of a life. It was a bridge I would cross if it ever happened. Fingers crossed that it doesn't.

Ian is still very young (only 20) and deserves to lead a normal life and thanks to my brother he may get that soon

[cosc]

What great news to rejoice over. I will keep you, brother and son in my prayers.

[Mr. Bloom]

I didn't know about that, but it sounds like a wonderful blessing!

[amymisk]

What wonderful news. Best wishes.

Kidney transplant surgery these days can be done with minimal incisions and recovery time is not too bad for the recipient. A friend donated one to her brother and she was down and out for much longer than her brother. He immediately felt better.

Keep us up to date!

[madscot13]

Amymisk,
I don't know how long ago that surgery was done, but I hear things have changed quite a bit. A friend from school (a biker before a racoon/ rabbit combo got the best of him and his front wheel) was telling me about how kidney transplants have changed over the years, and he would be an expert seeing as how he had one a while back. Basically without getting into too much detail, a much smaller incision is made into the donor and in a way that the donor can help relieve the pain following the surgery. The result- a much better recovery for the donor and someone gets a kidney. Everyone is happy, especially Python, Python's son, and Python's brother.

[Zen]

That's one lucky boy and one wonderful brother. Dialysis must be an awful hinderance to a normal childhood. If only more people were willing donors.

What does it say on YOUR drivers license?

[SouthernBelle]

Fantastic is not suffcient. Keep us updated!

[madscot13]

best wishes to your son and brother. It takes courage to voluntarily undergo a surgery that leaves you without an organ and courage to live with such a difficult disease. May this bring ease to your son and to your family's worries.

[Python]

If only more people were willing donors.

What does it say on YOUR drivers license?

I carry a Donor Card. Although I can't donate my kidneys to anyone there are lots of other bits and pieces of me that could help bring normal life to someone

[pooks]

I'm so happy for you and your family.

As for your decision to make sure your son gets the kidney, and being willing to roll the dice for your own future --

I have a friend who has a genetic kidney problem that all four of her children inherited. I don't know if it's Alports or not, though. But when she needed a kidney donor there was nobody available in her family because it was so widespread (though somehow nobody had ever known this until her situation came up).

She went on the donor list expecting to be there a long time waiting her turn, when after only one session of dialysis, she got a phone call that there was a kidney available for her. It seems that (in the US, anyway) if the next available kidney is a really really good match for somebody on the waiting list, they jump ahead of everybody else. That was about 15 years ago and she's still doing great.

We never know what is waiting for us around the next corner, so I don't blame you for wanting Ian to have that kidney.

Keep us posted.

[northstar]

Python,

Many happy thoughts of hope and thanksgiving for your family! What terrific news!