79% lost ! HELP

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79% lost ! HELP

Postby Tony » Tue Aug 10, 2004 7:10 pm

Hello all, not been on this new site before, i used to use the old one.Im hoping some of you could help me. I have FSGS & Nephrotic Syndrome.I'v lost 79% of my kidney function. Im on Atorvastatin,Perindopril,Doxazosin,and Frusemide.
They cant stop the FSGS & the Nephrotic so what i need to know is, whats next for me??? I know its going to be steroids but will that stop me losing more function or just slow it down. Im swelling up, feet hands face. On advridge my kidney function lose is going up 5% in 6 weeks.
If any of you would like to e-mail me. :- splashzildjian@hotmail.com
I hope some of you can help me with this.
All the best to you all
Tony :o)
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Joined: Sun Apr 25, 2004 3:02 pm

hi there

Postby nycpetit » Tue Aug 10, 2004 7:19 pm

I have the same as you, both diseases. Seven-nine percent lost, puts you at about 21% right? Sorry, my math isn't so good with the mental confusion of this illness.

Okay, well, I'll be straight with you. Losing function that quickly, it's not likely that steroids are going to do the trick for you. It's late in the game to give them a try. I too blew up, and after my function got below 20%, we'd tried the steroids, and everything else, the swelling stopped, but then the anemia and such came on.

The steroids MIGHT slow down the progression to give you time to plan for a transplant, to look for a donor, to plan for dialysis, or it may do nothing. Some people have had success with cyclosporin to slow down the protein loss (Which is what is causing the edema).

Are you young? Where do you live? In otherwise good health? I would ask the nephrologist what your options are NOW, and proceed from there. My nephrologist always told me that my finding him when I was at 25% meant we had time to find me a transplant before dialysis. And he was right. I will be transplanted with my stepfather's kidney this Thursday, two days away.

This is a great place for support. All of at different points in our illness. I am NOT trying to scare you. You will get through this. You must stay on top of all of it from here on out. Get your diuretics dosed to get rid of as much edema as possible. Find out if the steroids are a hope right now, or more problematic (they are not easy to take) than a blessing I took them for 18 months, and it didn't work for me. But I am guessing it did slow the progression to give me time to get donors tested,and do the tests necessary for a transplant.

Keep us posted.
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Location: Miami Beach

Postby Tony » Tue Aug 10, 2004 8:20 pm

Natalie are you saying that you started on the steriods when you had only 20% function and they slowed you down and you stayed on the steriods for 18 months at the same time your kidney functions stayed at 20% ?
I am 38 years old i was diagnosed with fsgs and nephrothic just 13 months ago, i am generally healthy before this and not too bad now. When i saw the kidney doc 12weeks ago I had 74% kidney function lost - when i saw the doc 6 weeks ago I had 79% kidney function lost - I am seeing the doc again in one weeks time if I have lost another 5% (taking function lost to 84%) is it going to do any good going on steriods ????????

Any replies to this from any one would be of great help..... Tony
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Joined: Sun Apr 25, 2004 3:02 pm


Postby nycpetit » Wed Aug 11, 2004 1:24 am

I can't say if they'll work for you. I started them when I was at about 26% function. In 18 months I am now down to 11%. I took steroids for 16 months of that time. It was not fun.

We can't ever know if that helped or not. I was losing maybe 15 grams of protein a day. The interstital filters were/are very scarred. So it was pretty hopeless at that point. But basically we weren't trying to reverse, we were just hoping to stabilize, maybe gain a few percentage points.

Doctors I've spoken to, and it does make some sense, state that for most people, once you reach a certain point, it slides downhill much faster. There are a few here on this board who went downhill very fast once they were under say 15%. The kidneys, even with a careful diet, just cannot keep up with the workload, and the filters wear out.

Cyclosporine was an option we were also going to try. But I was nervous about it, and still on the steroids at that point. I was going to be doing both at once. Eventually my doctor said there was no point, I was probably at about 18% then. He said it was better to aggressively do testing for a transplant.

At 20% where you are now, I can't see the point in trying to keep you where you are, which would be precarious and probably you aren't feeling so great, huh? I mean, maybe you don't notice how you feel different, but there are probably good and bad days, no? It's possible that the steroids could minimize your protein loss. How many grams do you lose in 24 hours? We got mine down to 3.5 grams in 24 hours, from 15 grams, but that's not what you would call a steroid response. A steroid response would be a 24 hour urine protein at less that 1 gram, and anything over three is protein overload. Meaning I was steroid dependent. But it might have helped me last a little longer if only for the sake of testing donors, and getting a better insurance to cover the surgery.

I'd want to talk to my doctor more if I were you. Find out at what point they look to begin testing for a donor,and getting listed on the transplant list. It takes time for all of this process. It was short for me, about three months, but I am young, and otherwise in great health. Even at 11% I still eat well, and work out at the gym for over three hours five-six times a week, and walk at least 100 blocks a day, work three jobs, and just basically pull through. But not everyone can do that, and it does seem as though you are losing function fast.

At best I can say it held me where I was for a bit to be on the steroids, yes, it did. But at that point, 26% my doctor had already said that if there wasn't a recession in the protein loss, and therefore a slight increase in overall function, that a transplant was imminent.

When you do have some time to prepare, I say use it to the best of your advantage. There's nearly no one here who wouldn't agree that a transplant is a gift for a little more "free" time and living.

Ask more if you want!

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Location: Miami Beach

One more thing

Postby nycpetit » Wed Aug 11, 2004 1:30 am

At 11% I am NOT on dialysis. And I met three other people who are currently where I am going on Thursday, the Rogosin Institute in NYC (you can "google" that) that are at 10% and they are also being transplanted before dialysis. With living donors obviously, since the wait time here in NYC for a kidney is about seven years. If you go to NJ or CT, it's much shorter for a cadeveric kidney.

I would just say that given the process and rapidness of your function loss, that it would be wise to ask about getting listed, and talking to people in your family about donating. It's hard to do, but it's necessary for those of us with this condition.

Again, I don't know your age, health otherwise, or where you live. Every unit is different. You could likely go until 8% without dialysis. Some units abroad have no "elective surgery" which is what a living donor transplant is considered, and must go on dialysis prior to being listed.

You can google almost anything you need to find out.

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Location: Miami Beach

Postby Pam » Wed Aug 11, 2004 5:19 am

SO happy to hear that you are getting your transplant! :D :D :D You can be sure I will be saying prayers for you and your stepdad!
As for losing weight, I usually do not notice much difference-I am pretty fortunate-the food at the hospital I go to is pretty good as far as hospital food goes. :wink: I lost a lot of weight (30lbs) last year while hospitalized, but they had me on a cardiac diet and I just couldn't stomach the food! :x It had no flavor, plus I was being taken off certain meds that had slowed my metabolism way down, so without the meds, everything really picked up speed! :wink:
One time you might have to watch is after your txplant when your diet is more relaxed. I don't want to scare you...I gained 40 lbs after mine, but this was before they really knew a lot about the steroids and how they can make you want to eat! Of course, if you have gone the steroid route with your kidney disease, you know the side effects and lots of hospitals give you an eating plan now.
I hope that everything goes well with your surgery Thursday-be sure to let us know how you are as soon as you are up and about!
Best wishes and prayers,
32 yr cadaver transplant recipient, now on peritoneal dialysis with the help of Audrey, my Homechoice machine... as of 4/3/09
Romans 8:28
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Location: Springfield, Illinois, USA

Postby Mike » Wed Aug 11, 2004 9:56 am

Hi Tony,
I'm 32 and I have the same as you as well but my function dropped much slower I have been losing about 1% a month. I have just been put on the transplant list as I don't have a live donor and unless I am very lucky I will be on dialysis before that.

I was put on steroids first then cyclosporin when my function was around 40% but they didn't work for me.

There's not much I can tell you as I can't remember my figure from back then apart from that I found steroids very hard dealing with as I suffered badly from the side effects but that was just me and they may not affect you in the same way.

I hope that it works for you.

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Location: Mansfield :o)

Postby rosa t » Wed Aug 11, 2004 12:54 pm

Sorry to hear about your new. I have NS but diagnosed with minimal change disease July 03. Steriods didn't work for me and cyclosporine has left me with chronic renal failure. My kidney function is about 40% and I take lot of tablets but the cyclo. has been stopped.

The steroids have a good success rate up to 90%. let's hope they work for you.

I know how hard it is when you loose a lot of function in such a short time. I lost 60% in a couple of months but I'm steady at the moment.

I've been told the Dr's won't intervene until function is 10%. I hope it takes many years for that to happen.

Sometimes function can improve. Mine did after the cyclo. was stopped.

Howevber, I have a bad problem with fluid retention and the steriods can increase this. I look like i've had 10 rounds with Mike Tyson when i wake up.

hoping you get some good new very soon.

rosa t
rosa t
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