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Discussion Starter · #1 ·
Hi:

Ok, so I have been leaking protien for as long as I have been tested...I have seen a neprholoigist. First 24 hour showed protien at a high level...next one was, high normal.

He said if the next one come out anywhere above normal levels, I was to have a kidney biopsy.

So mentally I thought I had prepared myslef. NOT!!!!

I went in to see him today, I am leaking protien at a high level again (wonder if it is the weaning off steroids - as only normal test I was on 30mg a day). So I am to have a kidney biopsy.

Not only that...no waiting alowed...so Next Week I go in to have it done. He said I will get my results on October 9th...

I am petrified...not of the test, I can handle that, of the potential results.

He is having my name added to the transplant list, as a non-priority, just to be safe. He also wants me to take a walk through of the dialysis center at my local hospital and talk to the nurses there so I can understand the process if necessary.

To say this all scared the poop outta me would be an understatment...I am sitting her shaking and scared.

Now I know...all is OK for now, and I shouldn't worry till there is something to worry about...I won't need any of this...

However he wants me to be prepared for the worst just in case...I guess I would rather wait until I know for sure that it is the worst than spend a month worrying about it!

Anyway...just wanted to whine to my friends who understand!

Thanks for listening - Stephanie
 

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Aw Stephanie :hug:

I'm sorry to hear that this hasn't settled down. I'll keep my fingers tightly crossed for a good biopsy result :fingers: and I'm sorry I can't do more.

Sending lots of hugs and vitual choccies :grhug:

Katharine
 

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Discussion Starter · #3 ·
Thanks Katharine...I settling down a bit...doin some research on alkl of the possibilitibilities and options available to me.

Thanks for the support and choccies...they hit the spot without the calories..YUM!

Stephanie
 

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I'm really sorry to hear that - I'll have my fingers and toes all crossed for you!:)

Best of luck - make sure you have some really nice treats for yourself while you are waiting- have nice bubbly baths, get some scented candles - eat Katherine's chocolates :lol:

Take care,

Nellie
 

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Wow Stephanie this would be enough to scare anyone. I will add you to my prayer list. I do hope that the biopsy goes ok and that things work in your favor.

Keep your chin up and I will give you a phone call to chat, maybe over that cup of coffee we never got to have.:lol::lol::lol:

Take good care of yourself.:wink2:
 

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Discussion Starter · #6 ·
Thanks guys I appreciate the support!

Karol I'd love to chat...right now Im a bit emotional, but hey you cant get wet over the phone.

I appreciate the prayers, I know they help!

Stephanie
 

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Hi Sam

guess any one would be scared. think its bad enough having Lupus.

Just to say my dear mum in law had to go on dialysis. and she was in her 80s. There r different types she had like fluid bags to do at home every day she did real well.

(((((((((((((((((hugs)))))))))))))))))))

dixy
 

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Hi Sam,

No wonder you were so frightened. Even being told..all the info was "just in case." It is still a lot to take in..I do hope that your biopsy comes out o.k.

Please know Sam that your friends here on the site are pulling for you friend.

Maybe your crochet can help keep your mind off of what your going through..for a bit? I hope so..

Yes, you deserve to be pampered. :) Some bath bubbles, chocolate, or whatever suits your fancy..and lots of love and hugs from friends and family.
Even kisses from the family pets..:lol:

Love and support,
Sandy
 

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(((Stephanie)))))

I am so sorry that things are not settling down for you.:hug:
Hearing all that information your neprohologist gave you would scare the poop right out of me too.:eek:

With heart failure I have heard a few stressful statements too. I know the worry is almost impossible to get out of your head.:hug: I tried finding things to distract me to get my mind off of my problem.

You will be in my thoughts and prayers.

Sending more chocolate your way.

Love,
Lyn
 

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(((Stephanie))) I *think* I understand but I also think you're right in that you don't really know until you're there and it's you. Best wishes for a good outcome and may the next month pass quickly for you - waiting can be very hard so in a way I'm glad you don't have to wait too long to have the procedure done.

Hang in there.
 

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Hi Stephanie - I hope the biopsy turns out ok, and that should you have nephritis, it responds well to treatment.

I've been through a couple of bouts of it, but generally respond to treatment (prednisone and Imuran, but I know there are other, newer, stronger options...)

I'm a bit surprised that your nephrologist would go straight to putting you on a wait list for transplant and start getting you to think about dialysis without actually knowing exactly what's going on - most of the types of nephritis have treatment options that can be tried before they start talking about dialysis or transplant.

I admit that whenever I get the "you're leaking protein" news, my mind immediately goes to transplants and dialysis, even though I think the evidence suggests that the majority of cases don't get to that stage. (can't remember the exact statistic, but I remember being reassured by it...)

I'm a worrier though, so maybe my nephrologist just chooses to manage that (and my blood pressure!) by not crossing bridges until we come to them...

I hope it all goes well for you, feel free to pm if you have questions about the biopsy.

Lisa
 

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Yep, I think I'd be kinda stunned if my nephrologist had put me through that - especially as you haven't had the biopsy yet and don't know how severe the problem is. My kidneys aren't great either, but I'm all for crossing bridges when I get to them - I've got no wish to see what a dialysis unit is like until I definately need it...

There are more treatment options before jumping straight to a transplant (cytoxan for example isn't a nice drug, but it does have a good record when it comes to sorting out kidney problems), so please try not to worry about that until you have to. And you're right, the biopsy is usually fairly straightforward - just boring because you have to lie still for a few hours afterwards.

:hehe:
 

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Discussion Starter · #15 ·
Good Morning:

Thanks all of you for your kind answers and unending support. You are my lifeline! Sandy 0 crochet is out for now...hands are tooswolen and clumsy for the needle...playing some online poker - LOL

I think the reason that he is being aggressive, is that my numbers were very high both times, something like 1800 and 2400? Not real sure - as I was pretty numb.

Also I am already on CellCept and Prendisone. Have been through Metho, Imuran and Arava.

Cytoxin has been discussed as an option to be added to the CellCept for 6 months (i think) to see how my response is.

I think the term (sp?) is glomularnephritis...at least that his dx before the biopsy...so I know that I wont know more until October.

It's true only about 3 in 10,000 wind up needing dialysis and/or kidney transplants, so those numbers are very reassuring.

Thanks again for all of your support. I had a good cry last night (hubby was there with a shoulder and a box of kleenex) and we talked for hours...and I must say I do feel better...although I think he's the one whose scared and worrying now - poor baby..

Love you all so very much, don't know where I'd be without this site!

Stephanie
 

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Hi,

Hi Stephanie..

I think its more than necessary and natural to have a deeply emotional cry.
I found that it offset the fear somewhat that I was experiencing when I was worried about tests for my heart.
There is some relief is talking about it espically to someone who cares and is close to you.

Hopefully you will get some reassuring news quickly.

I really hope things turn out well for you.

Lots of love and postive thought.
Nicky:)
 
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