Re: Appt. with new Neph today

[Guest guest]

Cathy

It sounds like you have a good neph on the team now. The 24hr urine test

will help give him a more accurate view of what is happening in her kidneys.

Being on the bad end of things could mean different things to different doctors

so I won't even attempt to guess at that comment. Does she have a lot of

crescent scarring in her biopsy report? I wouldn't call being at 65% all that

bad unless she is losing function quickly.

I'll have to say the first 6 months of my early treatment were a rollercoaster

ride too. Between doctors appointments every 2-3 weeks, the biopsy, IV

steroids, a tonsillectomy, 3 CT scans for various things, all the bloodwork,

weekly UA's for 3 months, and 6 different drug reactions (one rather serious one

that lasted close to 3 months) I felt like I was constantly at the doctor, lab,

or hospital. What I'm getting at is it will lighten up once they gather all the

information they need and she is regulated with her drugs. Just keep on hanging

in there. It sounds like she is doing well and though tired she isn't letting

this rule her life....that's a good thing.

I think every parent on this board would switch places with their child in a

heartbeat. I know if I had the ability I wouldn't allow these kids to have to

deal with this disease. All we can do is support them the best we can, make

sure they have proper medical treatment, and hope....never lose hope.

Amy G.

Appt. with new Neph today

Hi Everyone,

Sorry I haven't been on a lot in the past few days. I hope everyone

is doing as well as can be expected.

We had an appointment today with our new Neph for my daughter

Jennell. It went really well, I really liked him very much and felt

very comfortable. He took his time with us, examined Jennell, read

her data and answered as many questions as he could with what he had

for information. He did have Jennell do more blood and urine

testing. She is also to do a 24/hr urine this weekend (the first

one she has ever done) and I am to bring it to the hospital lab on

Tuesday.

He did look over Jennell's previous testing, kidney biopsy, ultra

sound and labs. He didn't want to say too much until he get's the

testing back and he consults with the rhumatologist. He did say

that on the IGA Spectrum, Jen is at the bad end, what that means I'm

not really sure he wouldn't go into details until after he gets the

new labs back and he has had a chance to read her history. After he

gets the labs back and the 24/hr he will give me a call but until

then we are at a stand still. From what he read from the previous

tests he said it looks like she is at 65% kidney funtion.

He did increase her fish oil from 3 gel caps a day up to 9 a day.

He increased her Enalapril from 5 mgs a day to 10 mgs a day. He

said after he gets the results back from the test he had her do

today and he speaks with the Rhumatologist they may take her off the

cytoxan (thats what I am praying for provided it won't her to be off

of it, that drug really scares me).

All in all, she is doing pretty good I guess, just really tired and

discussed, all that she wants to do is be a typical 16 yr old girl.

Although I have to give her credit, she is a fighter, (very strong

willed) she goes to school everyday, stays after for all her school

clubs and for extra help with her accademics. She is starting to

get the moon face and she doesn't like that.

So now I'm told by the doc that I have to learn about trans fatty

acids and what they are and how they work. Geeeeee, I'm still

trying to learn about HSP and IgaN.

My godness, this past month has been so busy, doctor appointments

(many), one hospitalization, test and more test and trying to learn

so much in such a short time.

My heart is just breaking for Jennell. I did have my blood tested

and found out that my blood type is the same as Jennell's and my

kidney function is fine, I did that just out of curiosity and for

future reference.

Well, this post is too long and for that I'm am sorry. I still feel

like I am on this really fast roller coaster and it just isn't

slowing down yet. I know I am rambling on, I just wish we all had a

good solid answer to all our questions and our situations. I want

to know what the time frame is of Jennell's IgaN, what the future

holds for her and I want to know she is going to be okay. I just

wish it was me that was handed this horrible sickness, not her.

God Bless eveyone in this group and their families. My prayers are

with you all.

Cathy.......Jennell's Mom

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