I’d like to share my experience and the information I received from my Nephrologist today and apparently he’s one of the best in L.A. I’m hoping that you might find this useful.
eGFR is 52 from 59 last March. I was asked to do a renal scan flow and it showed that my REAL GFR is at 35. It was scary but talking to him calmed me down and made me understand the whole situations. Doctor said I can live for many years even without dialysis if I keep myself healthy. He recommended the following for now and ordered more labs to make sure all labs are in line:
1. Keep Blood Pressure to 120/80
- I’ll be keeping a log for a week to check if my BP is controlled. If not, I need a second medication. Uncontrolled BP will totally destroy my kidneys in 6 months.
2. Check weight every day or every other day
- this will tell me if I’m retaining water (anything more than 2 lbs is bad). He also checked my legs and lower back - negative
3. Low salt diet 🥡
- 24 hr urine will tell you if you consume a lot of salt among other things. Maybe once in a year visit in Chinatown or never (?) 🤔🤷♀️
4. Avoid pain meds 💊
- any medication you take, always ask if it’ll affect your kidneys
I can get pregnant but I’ll loose my kidneys so he recommended doing surrogate/adoption which I’m already leaning towards to. He also mentioned that I can still eat everything and still do the normal as long as I keep in mind the things he said.
I’ve been battling this for years but did not get the proper diagnosis. This is the first time that I was told that I have Interstitial Nephritis. Inflammation happens when blood pressure is uncontrolled.
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htnckd3
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Good advice. Only thing I would add is to make the bp log go longer than a week. I was diagnosed last November and have been tracking bp nightly ever since. It helps you to see when something makes it go up.
Hi, I also have interstitial nephritis. I have had it for more than 30 years. When it was diagnosed, via renal biopsy, my gfr was 64. Now I am at 23 (stage 4). After I was diagnosed I had my youngest child. It was a high risk pregnancy and she was born weighing only 5 lbs. You might want to further look into child bearing, with a lot of care and a good doctor, you might be able to have your own child. Then, I don't have all the details and only can speak of my experience. I keep kicking dialysis away... Hope you the best! Keep the blood pressure down and watch the sodium in all it's many forms. Don't eat frozen foods, they are a direct shot to your kidneys, too much sodium and potassium. Just try to eat wisely and drink only clear drinks.
Thanks for the info. I can still get pregnant but my doctor said that I might lose my kidneys and baby will be small. He mentioned a hospital in Idaho but the risks are still the same unfortunately. A lot of things are going through my head and you guys have been a very good support. I’m still in the grieving process and hopefully to be able to get out this sooner.
I would respectfully add to his advice that you consider eliminating soda from your consumption of fluids as well as limit or avoid completely NSAIDS (like aleve, advil). May you continue on and remain healthy to stave off dialysis or transplant. There is virtually little to no research on women with lowered renal function (at your stage), pregnancy and impact on kidney function. This was likely his assumption. You must do what you feel best doing regardless. Many Blessings
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