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Hi Amy!

Glad you are enjoying the articles. You have been

doing terrific so far! Keep up the good work.

When I was off induction, and doing Atkin's

strictly, I also allowed myself some fruit every

other day. My favorite fruits are strawberries. I

would eat half a cup with some sour cream and

splenda, and it was so good. Congrats on the

weight loss. Haven't you noticed that the inches

go faster than the pounds?

Take care!

Warmly,

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  • 3 weeks later...
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Kari: Things are great--this is my last week of classes, finals start next week then I'm off until Memorial Day. Crunch time! I've lost another couple pounds. . . down to 180 now. Went shopping and got some cute tops, plus off the rack shorts, in misses and not women's so that was a big motivator! 20 more lbs to go, I think. . . starting back with taebo, I took a few weeks off it & walked etc. My mental attitude has changed along with the weight loss-I am just normal now, not depressed & sluggish all the time. This has truly been a life changing experience for me. . . . Amy

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  • 3 years later...

Thanks . It's a psychological thing for me. Craig looked at me and asked

" are you sure you should go? " I guess I looked that bad this morning. LOL! I

knew if I didn't at least go and try I would have given myself and excuse to not

go in the future....instead I opted to give myself a reason to get up and try if

I'm feeling lousy later on.

Thanks for the encouragement!

Amy

Re: Amy

Hi Amy,

I neglected to say in my last reply to you that I am so proud of you for

getting out there and trying to get through the curves circuit even though you

were feeling pain. I know how hard it is when you feel like you just want to

stay in bed because you feel bad to make the effort to get out there and try.

You go girl!

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  • 2 weeks later...

Amy:

Thanks so much for your support. I am very hopeful that we can hold

things off for quite a while. But as with IgAn, it is difficult to

predict.

wants to go into the Air Force, but is slowly realizing that they

wouldn't accept him with his multiple medical issues. There is a program

through his high school where he can get his pilot's license during his

junior and senior years. I found out today that he will have to pass the

FAA pilots medical exam. So we will do that next spring and hope he

passes the physical.

I did find an excellent site with multiple places to look up info on

Alports. So I have a lot of reading to do.

Thanks again for your help.

, mom to Rob

On Wed, 1 Sep 2004 00:51:38 -0600 " Amy Griswold "

writes:

I'm sorry to hear of 's diagnosis. You are more than welcome to

stay with the group and please draw as much strength as you need from us

to help you thru this, that's what we're here for. I hope he is one who

can make it as long as possible before having to face ESRD. At least his

outlook for a transplant is better than and IgAN patient...as we can have

it recur in the transplanted kidney. I hope his sight and hearing stay

as normal as possible. It's wonderful that he has normal creatinine

levels and his hearing is still 100%.

Hang in there and ask away with questions here. We will try our best to

answer them or point you in the direction of answers.

Amy

's diagnosis

I have been somewhat of a lurker here, I have only posted a few times.

I

have a 15 year old who had gross hematuria starting May 2003. This

continued through November 2003 and then cleared up. He had 24 hour

urine

test (slightly high calcium, the rest of the results were normal),

normal

renal ultrasound, normal CT of the kidneys. When hematuria began again

in

July and he had casts, crystals, and protein, a renal biopsy was

performed, August 6.

He was diagnosed, based on the biopsy results, with Alport's syndrome.

Alports is a genetic collagen disorder affecting the collagen in the

glomerular basement membrane, the ears and the eyes. In males, ESRD

typically occurs around age 40 or sooner, depending on how severe the

defect. Hearing and vision loss can also occur. Rob's hearing is NORMAL

right now (YEAH!), and he is pretty nearsighted, but vision is

correctable with glasses to 20/20. His BUN and creatinine are currently

normal, despite the appearance of his urine. (another YEAH!)

He is starting Cozaar to control his borderline high BP and this should

also help the proteinuria, per his nephrologist.

I will probably remain on this list, as Alports is fairly rare,

affecting

only 1-2 people in 10,000. I haven't yet found an online support group,

but I am still searching (with a dinosaur computer that isn't

cooperating

too well).

It had been thought he had IgA nephropathy because it does affect those

with ankylosing spondylitis, which he also has. However, the Alports is

unrelated to the AS.

I admire those on this list for their courage and support. You have

been

a great support to me and my son.

, mom to , 15

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