Introductions

[Judiblue]

Hi, I'm new here. I was diagnosed with Focal Segmented Glomuralosclerosis 20 years ago, which has progressed to CKD. I am currently in stage 3. I'm looking forward to meeting others who are walking the kidney disease journey, as well.

[Hidden]

Hello and welcome. You may be new to this site but it seems from what you posted you are a veteran of kidney issues.

I've known about my CKD for about 4 months but suspected it for a bit longer due to issues with previous doctors. I'm currently at Stage 3 and hopefully, can hold that for as long as possible with kidney-friendly diet and exercise.

[Judiblue in reply to Hidden]

I am beginning with a new nephrologist this month and have a new GFR count that is lower than the one I had in May of this year. It's gone from 54 to 49. It's been a gradual decline until the last 3 years. I will be discussing a more kidney-friendly diet. I've lost the function of about 40% of both my kidneys because of FSGS. I'm anxious to hears what this new doctor has to say and to know how it's going to affect my daily life.

[orangecity41 NKF Ambassador]

I am 76 and was diagnosed about 2 years ago and likely had it longer, as previous Doctor unable to diagnose it. So far diet and exercise routine has slowed down the progression. Good luck on your CKD journey

[Judiblue in reply to orangecity41]

Thank you. It's been a long journey so far with the FSGS/CKD and I'm looking forward to being part of this community. I wish you well with your CKD.

[hazel-hearty]

👋 judiblue, my aggression (CKD) functions at 15 and I exercise daily, try to stay focus breathing when mediating but that is difficult for me, and we cook and eat at home every day. The only exception is when we go on vacation then I watch what I eat. I avoid highly processed food and high sodium foods, I also watch my potassium and potassium foods. The best to you.

[Zazzel]

Hi Judiblue,

Welcome to our group!

[Jenkea]

Hi Judi blue. I was diagnosed in March. Last labs I improved slightly. I find the diet difficult and frustrating

[Judiblue in reply to Jenkea]

I worry about the diet changes. My last Nephrologist had me reduce my animal protein to "nearly vegetarian" and I follow a diabetic diet. I think I'm going to have to get with a dietician or nutritionist who can help teach me what I need to know about cooking for both diseases.

[Zazzel in reply to Judiblue]

Sounds like a dietician would be a great idea for you. Have you tried going gluten free? This is NOT for everyone, but there have been people with FSGS that have reported they were able to stabalize their GFR through gluten free diets because gluten flares the inflamation in the glomeruli. Again, this was only some cases on forums that I read people can been helped, but does not apply to everyone, buIt might be worth bringing this up if you talk to a dietician.

[Judiblue in reply to Zazzel]

Thank you for the advice. That is certainly something I will discuss with the Dietician.

[Jenkea in reply to Judiblue]

My Dr won’t refer me to a dietician so I figure it out myself as best I can

[orangecity41 NKF Ambassador in reply to Jenkea]

Hi Jenkea: I do the same, as so far unable to get referral to dietician. That is the best we can do. Davita helps me on their recipes, but have to be sure to select ckd non dialysis for recipes.

[Jenkea in reply to orangecity41]

What stage are you?

[orangecity41 NKF Ambassador in reply to Jenkea]

stage 3.

[Jenkea in reply to orangecity41]

Same as me I hope I can remain at that. This is crazy!

[orangecity41 NKF Ambassador in reply to Jenkea]

yes it is crazy. Something one never expects for a disease, but thankfully are things we can do to stabilize it. It has been almost 2 years since put on diet and has stabilized.

[Jenkea in reply to orangecity41]

That’s good to know. Mine actually improved by 1 It’s scary Are you on Facebook ?

[orangecity41 NKF Ambassador in reply to Jenkea]

Not yet on facebook. My numbers improved, and will get blood work this month.

[Jenkea in reply to orangecity41]

Wishing you improvement with the blood work. It’s always scary waiting for the results

[newbie1956 in reply to Jenkea]

My goodness. That doesn't seem right. Have you asked why? I know I need all the help i can get.

[orangecity41 NKF Ambassador in reply to newbie1956]

It is because of Medicare/insurance rule. Maybe will change in 2018. However, now would rather use Davita recipes/menu for CKD non dialysis as can make own choices, and with diet guidelines given to me by Doctor seems to be working.

[newbie1956 in reply to orangecity41]

I must examine Davita recipes thanks.

[newbie1956 in reply to Jenkea]

Jenkea, I've gone from one extreme to the other. Lots of junk food for years (i did watch sodium because of high b/p) but indulged in sweets DAILY, especially ice cream. Since being diagnosed less than 2 weeks ago, I've eliminated all junk food, lost 7 lbs and my B/P is great. Actually was a little LOW today. No more swelling (fluid) in my ankles. But, was lightheaded today and grabbed a bottle of Gatorade with sugar. Feel back to normal now. I agree it's frustrating, we really need to know WHAT to eat & how much. Ate cabbage & a tiny piece of cornbread. If the dietitian says no cornbread I WILL COMPLY. Seems you're improving & that's good...Please keep in touch

[Jenkea in reply to newbie1956]

Thank you so much, I actually saw a different Dr today, she is a diabetes specialist and I have known her for 20 yrs. we met for lunch and she reviewed all my labs. She said I don’t need to worry my kidneys should stay where they are at for 20 yrs , gave me plenty of advice and told me to try cut out red meat and soda. I dont eat/drink these anyway. I feel so relieved tonight , less stress you keep in touch also

[newbie1956 in reply to Jenkea]

Wow, what a relief ! I'm happy for you. Did your friend have any advice about dairy ? Butter, cheese, yogurt or ice cream? I wish

[Jenkea in reply to newbie1956]

Morning. She never mentioned anything about dairy, I did change to almond milk for cereal, will still be careful what I eat I have lost 4 lb.!! what stage are you? I’m glad I went to lunch and talked to her my own Dr was so vague about everything. A few months back I took myself off BP meds, even after cutting down to half a pill a day My BP was so low making me feel like I was going to pass out, my friend said to just monitor it and if hoes high for over a week go back on it Can you see a dietician? I think they would be best to help sort thru it all. I found lots of recipes on Pinterest, Nice talking to you. What area do you live ?

[newbie1956 in reply to Jenkea]

I'm just North of New Orleans, La. I too just cut one of my b/p meds because since I've been on this diet my pressure has been lower than it's been in years. Actually had a weak spell yesterday (eating like a bird) I guess I've lost weight too fast. I've always been extreme with food. All or nothing. I've been called the Ice cream Queen, seriously. And even if my Dr or dietitian says it's ok, I'll never go back to the amount I was eating. At stage 3, I realize the seriousness...Are the recipes on Pinterest for ckd ? I will be checking, thanks. Btw, my Dr told me that Benazepril for b/p "could be" hard on kidneys, so that's the one I've recently stopped. Watching B/P daily (home monitor)

[Jenkea in reply to newbie1956]

I monitor BP also. Was making me dizzy and tired. I was also starving myself but now since my 2nd opinion I’m not so stressed Did lose weight also. I live in Kauai, Hawaii

[newbie1956 in reply to Jenkea]

Aloha As you know HBP is serious on it's own. I'm shocked to be keeping mine down... Jenkea, you've been very blessed by that second opinion. Happy for you.

[Jenkea in reply to newbie1956]

Thanks. Can you get a 2nd opinion ? I’m still plan on eating similar to how I was anyways, I just won’t be so obsessed

[Jenkea in reply to newbie1956]

Also I use Almond milk and ice pops. Sugar free jello.

[newbie1956 in reply to Jenkea]

Hi, I was listening to a video of interest, maybe you would get something from it. I'm not sure about it, but here's the link: beatkidneydisease.com/?hop=... (hope it's true)

[Jenkea in reply to newbie1956]

Interesting video

[newbie1956 in reply to Jenkea]

i can actually eat cereal with water and a little fruit true.

[Jenkea in reply to newbie1956]

I was doing the same thing but 2 dr,s have told me that my condition is mild and no need to change diet, I never ate red meat or junk food, I wasn’t sure when my Dr told me this I though he didn’t know what he was talking about so I did changes on my own and at last visit I had improved. Since seeing the other Dr yesterday who is a diabetic specialist but saw plenty of kidney patients also due to it being linked together and she thoroughly checked my labs and told me the same thing, no need to worry. Kidneys should be good for 20 yrs. funny though I still have doubts, guess I’m reading too much info

[Hidden in reply to newbie1956]

Dairy products are high in phosphorus and if that is a problem for you based on your blood labs then they should be drastically cut back if not cut out entirely.

I saw two doctors earlier this week and both did a variety of labs (some similar and some different). The most surprising was that my GFR went from 35 to 52. The thirty-five was up from 32 which was the level in June. While some of that may be attributed to the kidney-friendly diet I've been on, the reality is that there has been a major change in my medications and dosages over the last four months and with the last labs this week any residual meds still in my system are now gone. I take just 5 pills per day + vitamins so why don't I feel better? I HATE COLD WEATHER! I woke up this morning to our first freeze. Our second is coming tonight. So much for bike riding. I'm having to switch to my indoor exercise. How many days until spring arrives?

My phosphorus labs this week showed a steady (3 previous tests) level of 3.4. Other numbers in kidney-related areas are good so I'm staying with what works and the kidney-friendly meals. I'm learning to love rabbit-type food.

Stay warm everyone.

[newbie1956 in reply to Hidden]

Well, Mr K... we are what we eat, so caution is best. Until 11 days ago I was known as The Queen of ice cream. Ate a large mug daily !!!(none since I was diagnosed) Sure didn't know what I was doing. Didn't know anything about phosphorus. My daughter who lives with me, bought every new Blue Bell flavor and there's still several cartons in the fridge. I'm not even tempted. Trust me. I'm starting to appreciate "rabbit food" also. I feel better already after just 11 days off the junk food. If my numbers don't respond to the changes I'll be seriously disappointed but I know it takes time. We do need self-discipline and prayer helps me. Let's try to catch some free Vit D (sunshine) Have a productive weekend

[Hidden in reply to newbie1956]

I'm all for Vitamin D but the sun is gone for this weekend. Oh well, there's always Monday. You know you could hold a neighborhood ice cream social to get rid of the temptation with all of those Blue Bell flavors in the freezer. You provide the ice cream and the neighbors bring the toppings. Does cabbage go well with ice cream? I've got lots of that.

[newbie1956 in reply to Hidden]

Haha...even though my 43 yr old daughter had colon cancer ( now in remission) she still loves Blue Bell but she never eats as much as I did... Believe me I'm willing to give it away... Cabbage would be better w/ meat (sausage) but it's no problem as is...Do you take vitamins? Calcium? Magnesium? Zinc?

[Hidden in reply to newbie1956]

I've taken Centrum Silver and an extra Iron pill for many years to combat (possible diet deficiencies and anemia) so those numbers on my lab values are good. Sausage is out for me, as I'm now on chicken, pork, fish, shrimp and maybe once or twice a month beef. Yes I know pork is usually included in sausage but the other hidden things aren't good for me so lean beef once or twice is it along with lean pork. I also take two AREDS 2 pills a day to hold off further AMD. I signed up for a webinar the other day on Holiday Foods and eating right at the upcoming time of the year. Not a great presentation but it was informative. Pumpkin pie is also out for me but I wonder if I put a scoop of cabbage on top, will they cancel each other out?

[newbie1956 in reply to Hidden]

Your sense of humor has kept you going and I enjoy a good chuckle. I'll miss pumpkin pie but my red, gold & green peppers might make nice "french fries" (coconut oil?) Hey, I'm tryin'

[Hidden in reply to newbie1956]

Roasted red peppers are a big part of my diet but I can't get the yellow or green ones past my lips. Post your recipe for pepper fries and I'll check out the possibility of adding to my collection. Anything new is always a positive.

[newbie1956 in reply to Hidden]

As soon as i try it, Mr K...just a thought.

[orangecity41 NKF Ambassador in reply to Jenkea]

That is good news. Just keep on your renal diet. I go for bloodwork this week to see if CKD is still stabilized. However due to medical conditions, have to take 2 meds now, that say can damage kidneys. Hopefully can avoid dialysis for the long term.

[Sirrahbed]

Hi Judi😀 I had to research FSGS as I had never heard of it. I know my kidney are hard, small, mishapen and damaged....happened ling ago as a young child due to either my reflux Nephropathy, the use of dye in exams, physical injury or all three. FSGS sounds similar except the damage appears first in isolated "focal" areas...us this correct? Do they know what caused it? I was also stable at stage three for many years with a couple dips due to medications, and now down to stage four GFR 20 for unknown reasons.

Hope you feel welcome here and have a chance to read posts from people and get to know them a bit😀 I think we each can learn from each other. Debbie

[Judiblue in reply to Sirrahbed]

Yes, the damage appears in focal areas first and then grows from there. At this point, I've lost about 40% of both of my kidneys and my most recent GFR is 44, (down 10 pts. in 1 month).

I'm finding that, although, I've been diagnosed for 20 years, I don't have to journey alone. That's, in part, due to this site.

[Dustypye]

Hello! I was born with only one kidney and it's not a great one. I'm stage four with about 18% function. Talking to people on this site has made me feel a lot less alone. I was diagnosed about 2 years ago and have been on the transplant list for about 9 months. Reading posts on here really scared me at first because I thought that everything that was happening to everyone would happen to me too. But, now that I know more about my disease and I'm used to the symptoms, it's not as scary and actually comforting to talk with others and hear their stories. I hope you too find some level of peace interacting with everyone here.