F.S.G.S. Advice Please ?

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F.S.G.S. Advice Please ?

Postby Rob 112 » Mon Aug 02, 2004 8:35 pm

Hi,
I am a 32 year old who has very recently been given the news that I have F.S.G.S. after a biopsy, which was 'A routine Test Nothing to worry about, we just need to know what type of Neurphrotic syndrome' and came back with ' Sorry you have F.S.G.S.' oh dear I thought. Now I know that reading some of these posts some of you good people are in a way worse position than I am, but never the less it does cause me some concern, I have a protein leak of 24g per 24 hours, a massive blood pressure, 184 over 104, and a high cholesterol 25, and triciculide 31, I am also a tad over weight. I have been told by my consultant (renal) that it is certain that one day I will need transplant etc. I now take a lot of tablets, but if anyone can offer me any advice on slowing it down it would be great, I know the long term view, Fortunatley my out put is still very good, But if anyone could help, it might make me sleep alot better.

Thank you
Rob :D
Rob 112
 
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A fellow fsgs patient

Postby nycpetit » Tue Aug 03, 2004 3:45 am

Well, not the best of terms to meet another, eh? Okay, 24 grams is very hefty indeed. Did the doctors say anything about you taking steroids or cyclosporine to slow down the protein loss? It depends on you and on the stage of your disease. You might be at a stage where taking steroids could halt the protein loss ( howcver this does not always work, as it did not for me..I had a response to steroids, meaning it lowered the protein loss, but i never got as low as they wanted me to which was 1 gram), hence slowing down the protein loss. An ACE inhibitor can also help to preserve kidney function, and get that blood pressure down.

In the midst of all of this, you should try to get a good diet under control, lose the excess weight, and exercise. A pain, I know, but you will benefit yourself greatly.

The cholesterol comes largely from the protein loss. I was also at about 400 and my bad cholesterol was high too, and I take 30 mg of Lipitor and 10 mg of Zetia. I hate the statins (they make me stiff and gassy) but they did the trick.

What advice has your nephrologist given you? Do you feel comfortable with their care? What measures have they discussed with you as far as slowing the progression? Where is your exact kidney function at this point, meaning what percentage do you have left? I was at about 25% when I tried the steroids, which I think was a bit late in the game.

Also, since you are losing so much protein, a lower protein diet will help to lessen the workload of your kidneys, specifically animal (meat) protein.

Please try to get more specifics. And to change doctors if you feel they are not giving you enough information.

I am getting a transplant next week. And you can feel free to email me from this site if you'd like more answers or have more questions.

natalie
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Postby Mike » Tue Aug 03, 2004 10:17 am

Hi Rob
I'm 32 too and was diagnosed with fsgs about 12 years ago. I am only just about to go onto the transplant list and like Natalie I was put on steroids and then cyclosporin for a short time about 3 or 4 years ago. For me they did not work and I hated steroids so much, I pretty much got every side effects from them that there was and they are pretty nasty. But saying that they can be very effective and some people can cope with / dont have as many side effects from them.

You blood pressure sounds fairly high, mine was in that region about a year ago but is now nicely on the low side around 120/70 ish sometimes lower. It is a matter of finding which drugs work best and it can take some time to sort out but I sure they'll get it under control. It is very important to keep your blood pressure down as it can cause more kidney damage amongst other problems and losing weight can help so worth thinking about.

You didn't say what your renal function was? they would get you to do a 24 urine collection followed by a blood test usually although occasionally they might do a GFR (I think thats what it's called? it was so long ago) which involves a injection followed by a blood tests 2 hour after then 2 more at hour 3 & 4. The renal function is judged from measuring the amount of creatinine in your blood and the amount in the collection over 24 hours. they will then tell you the 2 figures, for instance for me my creatinine clearance is 17 and creatinine about 624 this means that my kidney function is roughly 17% and a normal creatinine level would be in the region of around 100 or maybe less.

You would normally be put on the transplant list at 15% and on dialysis around about 10% but it can varies depending on the unit and your general health or how you are feeling.

This can all seem very scary and I'm sure everyone on this board has been though the same feelings as you, feeling that your life is over, you can't make any plans but you will find lots of very good support from the other patients and carers on this board.

good luck with everything and hope you are feeling ok

Mike
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