Now what?!

Hi! I'm new to the forum & loving what I'm seeing. Thank you in advance.

I'm 46 yrs old. Diagnosed 26 yrs ago with IgA Nephropathy. Recently had a ureteral blockage which caused damage to my left kidney.

Robotic Pyeloplasty fixed the blockage.

Now I'm faced with Stage 3b - GFR 35.

I've been monitoring & medicating high blood pressure for the last 26 yrs. Typically at 135-140/90-100

So still on the high side.

BMI is 30 so weight loss is an ongoing challenge.

I'd love to hear your advice on what to do now. Diet & exercise seems so generic to me. I feel like I should be doing something more specific. I've read thru the renal diet which seems contrary to everything I've previously learned to be healthy. The more I read, the more conflicted I become about fluid intake, protein intake & overall have & have nots. I'd love to hear any tips & suggestions you have. I'm so sorry to read the advanced stages some of you are experiencing. Is there something you wish you did sooner?

CKD is always in the back of my head. But most days it's even further back. And I carry on with work & parenting. As time goes by, I think that I should be doing something more about it. Kindly advise. All comments will be appreciated!

11 Replies

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  • Welcome. Diet and exercise may be generic but many of us learned about CKD when, after years of going blissfully along, we found out we were in either the early or middle stages. The only things we can control to slow down the process is diet and exercise. I guess you could go into that slowly but for me, it wasn't an option.

    I have also done a lot of research about CKD and the best way I've come to explain it is that everyone is different (health issues, gender, body type) and fluid intake and protein intake are just two examples of person specific guidelines a renal dietitian will take into account. I've also read that water intake and other fluids may be restricted when you are on hemodialysis.

    I can't speak for others but for me, I would have made changes much sooner. Back in that time I didn't have a strong support system and it would have been much harder to accomplish but I know me and I would have still tried to do something.

  • Thank you. I'll be seeing my nephrologist this week. I've tried to lose weight & go no salt on my own without too much success. I think I'll request a renal dietitian to help me sort things out. Thanks!

  • Hi Rosemary, welcome to the forum. I also have IGA Nephropathy diagnosed Exactly one year ago. Since you've had it for much longer than I have, you probably know way more about it, but here are some things I have discovered.

    Specific to IGA Nephropathy is an association with certain food intolerances. When eating these foods, more inflamation can occur causing greater damage to the kidneys. Several studies were done in the 80s and 90s involving gluten and dairy. I have listed several of the studies in my reply to Becks here healthunlocked.com/nkfearly...

    In any case. Personally I have a large number of food intolerances, gluten being only one. Once I got those under control, my GFR seemed to increase. I also went on a bunch of suppliments and take flaxseed oil daily. Many people take fish oil for the same purpose- increase Omega 3 to decrease inflamation. This is really hard, but try to eliminate all Omega 6 from diet which causes inflamation. This is particularly important in our type of CKD. So, basically that means most oils such as sunflower, canola, safflower, vegetable oil etc. Stick with olive oil, and occasionally coconut oil, palm oil macadamia oil and small amounts of grass fed butter. Red meat should be grass fed which is high in Omega 3, as regular store bought red meat is high in Omega 6 since they are fed grains, and you should really limit the intake. Better choices are turkey, chicken and fish.

    Avoid NASID such as aspirin and ibuprofen. If you need a pain killer, only use Tylonol in small doses.

    As Mr Kidney said, diet is very important and different stages call for different diets. Generally early stages call for less protein and later call for more protein.

    It seems that IGA Nephropathy is a strange animal. It can start many years earlier and hang around without taking action, then suddenly start affecting you. Then, it can go into remission or get worse really quickly. This is what I've heard from my doctor, but again, you probably know more about it than me.

    When I found out about my condition, I was actually in stage 3, but with diet and suppliments, have gotten it back to stage 2. However it seems to bounce around drastically if I get an infection or accidentally overlaid on a food I'm intolerant to. Message me if you want any time and I can tell you more.

  • Thank you so much, Zazzel. Despite the number of years of my IgA diagnosis, I don't know a whole about it. I've been seeing my nephrologist about every 6 mos & we monitor blood pressure & creatinine levels. Nothing earth shattering. It's only this past year that things really got my attention when we discovered the ureteral blockage. Somehow my ureter narrowed in only a 1 yr period & caused significant damage... my left kidney is now only functioning about 9%

    The robotic pyeloplasty procedure fixed the ureter & thereby saved the damage kidney.

    It's reassuring to hear that you were able to move from Stage 3 to Stage 2.

    I haven't heard of IgA associated with food intolerances. How do your food intolerances affect you? What are the symptoms? I seem to be able to digest & tolerate all foods. I truly appreciate your knowledge sharing... you & Mr. Kidney have given me much to think about.

  • Hi Rosemary, I was on my phone and couldn't cut and paste the studies.

    Here they are:

    Here are a few:

    ncbi.nlm.nih.gov/pubmed/231...

    healthunlocked.com/api/redi...

    healthunlocked.com/api/redi...

    Your issues are different due to your ureteral blockage, however there might be a possibility of slowing further damage through diet.

    I am very sensitive to many things so the smallest amount of medications work on me and I feel small imbalances in my body more quickly than I believe others due. Therefore, my food intolerances left me with many years of feeling flu-like symptoms, flank pain, stomach issues, extreme fatique, joint pain, swelling, hives, itchy throat, rhinitis, excessive thirst, itchy skin, anxiety, depression, rashes. I'm sure there are more, this is just off the top of my head. Of course many of these symptoms can be written off as anxiety or other types of ailments.

    I usually had doctors blow me off telling me it was just an anxiety attack making me feel like a hypochondriac, which I probably am after all those years of symptoms, but I finally found a naturopath a few years back who did a bunch of testing on me and had me take the ALCAT test. It's a very controversial test which ranks food in various categories of extreme, moderate and mild intolerance. This is different than allergies, though I have those as well.

    Once I cleaned up my eating, many of my symptoms went away. Since the list is long of many healthy foods that I'm intolerant to, I still have episodes as I can eat foods in moderation, but if I get too many all at once or too large a dose, I end up with issues. Makes eating out hard. The biggest thing was the gluten as I would get extremely fatigued after eating and had bad stomach issues. Not sure why it took me so long to figure that one out. In any case, several years later when I found out I had IGA Nephropathy I saw all the articles about gluten and how it can worsen IGAN. I belonged to an IGAN facebook group for awhile and many of the folks on there also saw results from going GF along with low salt and eating more whole foods and drinking water.

    Others were also saying they were going dairy free. I've played around with that, but find it harder as I still enjoy cheese and occasional yogurt or ice cream. Probably those changes were enough for many, but I have so many intolerances which has caused so much inflamation in my body, that I have to make sure to watch all the foods on my list. I wish there were more recent studies on this topic, but haven't seen many.

    Your doctor will probably not know much about this. I have a really great nephrologist, but she wasn't aware of the studies.

    Kidney disease is kind of a mystery. Per rarediseases.org/rare-disea...

    "Causes

    IgA nephropathy usually occurs following flu-like (viral) infections of the upper respiratory tract or the gastrointestinal tract. This suggests it may be caused by a postinfectious process. There are some theories that the condition is an autoimmune disease because of the increase in the immunoglobulin IgA factor, but the mechanisms leading to glomerular immune deposit formation is unclear. Autoimmune disorders are caused when the body’s natural defenses against “foreign” or invading organisms (e.g., antibodies) begin to attack healthy tissue for unknown reasons."

    Therefore, the gluten free diet may only work for those who are having an autoimmune response such as food intolerances, allergies, lupus, celiac, etc.

    I'm still learning, but that's what I know so far.

    I am working with a holistic doctor and a regular nephrologist and probably need to find a dietician as well.

    I'm glad they were able to save the kidney. It sounds like many people on here have been able to keep going for many years by following some dietary guidelines.

    Are you by chance on or have been on medication for proteinuria?

  • Hi, I think if you just cut way back on red meat-that's really bad, no vitamins -none. I fix a picture of Tomato juice with radishes crushed up -blend them together, more fruits, more vegetable. 1/2 hour every other day on treadmill.in the morning I take 1 tablespoon Vinegar mixed with 1/2 glass of water- tastes terrible but its soooo good for you. get Braggs Apple Cider Vinegar. I also have too much protein in my blood but with all that I have been doing it went down to 8.4 which is still high but so much better than it was. I also have no creatine which I had the last blood test. Hang in there and try these things, it will work for you. Eat more chicken and fish. no processed meat or dairy products such as milk , cheese yogurt. Hope this helps you.

  • Sounds like great advice!

    Thank you very very much

  • I was diagnosed with CKD level 3 over a year ago. I have been on a prescribed renal diet and exercise routine and so far so good. Maybe best you check with your Doctor to see what diet is appropriate for you. Basically are limits on phosphorus, potassium and sodium. Some do not have to avoid potassium for example but maybe limit it. .

  • Thank you so much

    It's very encouraging to have Stage 3 friends on here 😁

  • Just an update... saw the doc & nutritionist. Good news is that I don't need to follow any strict dietary guidelines other than, healthy eating. I've been keeping portions low & focusing on protein & veggies at almost every meal. I love the idea of overnight oats in a mason jar!! Easy breakfast & satisfying with fruit. Doc wants me to lose 20 lbs & it's working (even with the few cheats). Drinking about 8 glasses of water a day. #dayByday

    Blood pressure ... still an issue... hopefully the weight loss will improve that.

    warm regards 😊

  • Hate to say it, but diet & excerise is about the only thing you have, the only thing you can actually control. Plus it's one of the hardest things to do too.

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