Quote Originally Posted by gilders View Post
Veronica,
I'm glad you mentioned about "water". I should have wrote "3 ways to stop kidney failure progressing", rather than "2", because dehydration will caused harm to your kidneys. The confusion about limiting water is due to the fact that when your kidneys have almost completely failed, you no longer produce urine (or produce less urine then the amount of fluids you intake). Dialysis will remove excess water, but you do have to seriously limit your intake (dependant on which type of dialysis you choose). Like I mentioned earlier, I'm at 9%, and still drink plenty. Admittedly, I have a little oedema around my ankles, my hands swell a little when it's hot and I'm exercising, and I do take a diuretic, but I can drink as much as I like.

Hopefully this will help put your mind at ease a little - I was first diagnosed with Wegener's aged 17 (almost 24 years ago) and at the time my kidneys were damaged to the extent that I needed dialysis. Fortunately they recovered well (I don't remember the exact % function) and I only needed dialysis for a few weeks. Since then my kidney function as only dropped during flares, i.e. while I've been in periods of remission my function has been stable. This changed after my last flare which brought my kidney function below 18%. Once your function gets below 20% you kidneys will deteriorate even without having a flare (this deterioration may be very slow, over many years).
So, as you are at 50%, your kidney function is unlikely to drop so long as you remain in remission. Even if you do flare, prompt treatment will help prevent further damage to kidneys. Research and improved treatments over the years since I was diagnosed, has put you in a good position for keeping that function above 20%.

Just eat a generally healthy diet, don't worry about the odd alcoholic drink, I was a HEAVY drinker from aged 17 to 30. However bad your diet previously was/is, the only way it may have had a bad effect on your kidneys is if it has caused you to have high blood pressure for MANY years, so don't blame your lifestyle for lack of kidney function.
Masha is correct about stress and I have flared during periods of stress, so wherever possible, try to be stress free (much easier said than done).
Hey Gilders,

I went to bed talking about you to my husband yesterday. Trying to vent how I was scared to get to the stage you are with your kidneys with the life style I bring myself in bad eating maybe, but now I understand more of you. Thank you so much for opening this to me/us. I won’t beat myself anymore. I am going to drink more water, I get very thirsty around evening time every day I always think it’s the prednisone. I couldn’t sleep thinking what you told me about how your kidney went down to 8% and I said to myself, Gilders sounds so smart in all the research it has been done, now what hope do I have to get better if I eat the way I do. Meaning regular white rice, salts and again dairy. Now I don’t eat in exesive (only when I was at 60mg with prednisone for the first time in my life and I didn’t had any control over my body)

At the hospital, after the kidney biopsy, specialist Rheumatologist told me the same thing, at 50% he sees me having a lifetime of 40 years plus or maybe 60. (I was told before treatment I had 6 months of living time) and my question was “would I be needing a transplant soon?” And he said “no, I’m sure you will have a normal life time with your kidneys just like this. And this was another Rheumatologist in the hospital not my doctor. So I believe all your research. Now that you mentioned it i feel much better. Thanks!

Also I feel better after you explained that kidneys don’t crash fast. Now im not so scared for you, im happy we have hope and time. That’s all we need.

I do try to be stress free, It’s just a bit hard sometimes. But I had changed a lot these months after this diagnosis. I try to keep it calm.