Hi all. Some of you have read and shared your input on my last post "CKD 2 and relationship" and I cannot thank everyone enough for their time. My partner and I had a long talk one where we both acknowledged there was compassion fatigue. We agreed to re-establish how we used to communicate and make a list of needs.
Since our dog had cancer, it has been a while since we could both leave the house at the same time. I want to take her out to dinner but I'm afraid to eat anything I want. I've talked to three nutritionist, I've been consulting three since I'm the type that doesn't accept one opinion, and each one said restricting myself entirely isn't healthy physically or mentally. They said since I'm already good at moderation and control, one meal of whatever I want (even one full day) every couple of weeks won't effect treatment. My GP also shared this consensus. I have an issue accepting that because of the fear nonetheless. When I do allow myself more of what I want I coordinate it with my gym days. Always have even before the diagnosis.
I guess my question is, does what my nutritionist (s) and my doctor sound reasonable? If there is a chance to stop progression I really don't want to mess anything up but I feel like she could use a night just being reminded how loved she is.
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Live4Hope
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I have discovered after two and a half years of a completely earth shattering dx of Stage 3 disease out of NOWHERE, that living with this disease is a constant source of guilt trying to do your best to mitigate any further progression. I have received the exact same advice and after a long period of debating what to do, I try to follow a WFPB diest and try to be about 80/20 eating what I want. I do watch sodium 100% of the time,and try to limit potassium and phosphorous when able.
When I am "perfect" my numbers are still off, when I take a day or two every few weeks or even every week my numbers are still off and on a slow decline. I went 100% Lee Hull for one year and my numbers were still in a slow decline. My creatinine declined slightly but not enought to really make a difference in my eGFR computation. I still follow a VLPD and do take albutrix for extra protein because I try to follow a WFPB low PRAL diet 90% of the time. Even on my "cheat" days I do not eat animal products just because of the acid load of those things.
I have no other chronic disease and have always been very healthy and athletic, and extremely active never stopping really. No high BP, diabetes, overweight, etc. My CKD was exposed during routine bloodwork performed at a regular annual physical. The only thing off was high creatine and low eGFR. No protein, hematuria, etc. Like most people it seems, after pulling and reviewing lab work going back to 2014 it appears that I had been in a slow decline since then. Admittedly I did not closely review my labwork but accepted the phone call after my physicals of "everything looks great with your lab." Even my husband who is a physician never really saw a red flag that bothered him.
After a huge battery of testing with nothing to point to a reason or cause for my damage, I finally had multiple biopsies that revealed bilateral neprosclerosis in both kidneys. The only thing the multiple specialists can surmise is that during the time I was a competitive cyclist in my late 40s, I raced on more than one occassion over threshold and over my VO2 max for a sustained period of time shutting down my body basically and resulting in a very short period(s) of rhabdomyelosis. The general conclusion is that I got behind on nutrition and hydration but was on top of it quickly enough to not send me to the ER but the damage was done.
Needless to say it has been a devastating diagnosis and incredibly difficult to live with. According to my nephrologist (third one), my kidney disease is a "good kind to have" because she feels like it was actually "caused" by injury and didn't happen over time. HOWEVER, I argue that because in my opinion there is NO GOOD KIDNEY DISEASE. As my numbers continue to slowly decline (1-2 points a year), I question if my disease was caused by an injury why are my numbers still declining? And the answer I have been given is that this comes with aging under normal circumstances Diabetics can take insulin to control there disease, people with high BP can take antihypertensives, even ppl with cancer can do radition and chemo to mitigate their disease, however, we are left with nothing.
I have discovered that in the eyes of most neprhologists, there are two treatments for kidney disease; dialysys or a transplant!!! Neither of those are acceptable to me, however, who knows, I may be slowly heading that way. According to my nephrologist I am a "perfect candidate" for a transplant because I am so otherwise healthy and active at 60, but I personally do not consider either of those an option.
Lab phobia is real, the anxiety around the numbers is very real, and in reality my physician husband constantly tells me that my damage is what it is and I am simply trying to manipulate the numbers and that lab values are not consistent and can change every day. eGFR is a computation of several lab values so of course the better the lab values are the better your eGFR is but that DOESNT MEAN that your kidney damage has been mitigated or progession has stopped. That only means that you are managing your diet better which is STILL a good thing and YES, I do believe this will slow the progression, but whether it will stop the progression or not that depends on the etiology of your disease.
There is a huge fear of this disease, I believe in those of us who are absolutely petrified of it progressing so you are in a constant state of angst "am I doing the right things or enough?" This in an of itself IMHO also contributes to our disease because I think the body absorbs this tension and strain it takes on your psyche. It sounds like you are doing a great job so hang in there and lets all pray one day there will be a better treatment for this other than DIALYSIS or a transplant!
I really appreciate your indepth response. It's suspected it is due to high blood pressure but I still haven't seen my nephrologist yet, hopefully soon. I wish you well and hope that things improve for you because you're trying so hard and probably feel like nothing helps but I appreciate you taking the time to help me.
I’m not quite following, you have CKD 2 and already talked to three nutritionists? It seems like you are taking it a little too extremely. Unless you have diabetes and are overweight, go eat whatever you want. Don’t let a prognosis take over your life.
Each professional has a different opinion/knowledge/methods of expertise on CKD. When shopping for a car do we just accept the first one we see or go to one dealership? Most likely not. I used to be overweight, not anymore, lost about 86 pounds. CKD and it is often not treated early before worsening. I'm also 27 so being in this stage this early in my life is considered abnormal. It's also easier said than done considering the prognosis is different per individual while I appreciate your response and agree with the sentiment of trying to not let this rule my life but when you first hear the news there is a shock factor and answers about the disease are not always consistent. It can be minimizing by telling someone their reactions are unorthodox. I understand what you're trying to do but someone else might not. You are correct, this stage there isn't much restrictions but I'd also like to try to keep it that way.
27 is a bit early for CKD 2, so I agree that you should be monitored - probably blood work once a year? You are doing the right thing - keep an eye on it, maybe it's nothing and maybe its something - and it might takes years to develop into a real concern. Sometimes nothing happens and then mid-life the kidney function starts to degrade and there isn't much one can do about it. Eat healthy but don't take it into any extreme - in reality food does very little for CKD.
Not quite whatever no processed food easy on the red meat , stay within sodium guidelines, drink a goodcamoubt of water( to keep those suckers flushed out) water and otherwise a healthy diet
I totally agree that dialysis and transplant shouldnt be accepted as the only options despite seemingly most nephros thinking that way. That leaves nutrition & lifestyle (n&l).....and maybe drugs. We are totally focused on the former for my mum (stage 3) via a Nutritional Therapy protocol whilst keeping tabs on the latter in terms of risk-benefit.
And yes the 2 unmentionables may become reality for some but n&l is fine for now.
Aging alone contributes to decline. I you are stage 3a the decline of 1-2 points is not a big deal if you are otherwise compliant w nutrition and water intake. I suspect you are and wont have to worry about anything til you hit tour high 90's if at all.
Just a tip. We all eat far too much salt. It’s in everything we buy. Not surprising so many people suffer from high blood pressure. If you do one thing it’s reduce your sodium. I try to stick to under 2 grams a day. Not an exact science of course. Impossible when you eat out. At CKD2 you could absolutely not have to worry about sodium when having a special meal out or even a weekly meal. Ask your nutritionist how many grams she/he recommends for you personally. As you reduce salt you find you don’t even want it. It’s an acquired taste. Like sugar. I find a lot of foods too salty now. Make sure to drink at least two litres of water everyday but don’t go overboard. Too much fluid not healthy either. You got this
Thank you. ❤️ I appreciate your input. I do 1500 mg but it isn't easy. I am over sometimes by a few mg. Nutritionist says 1500 is a good range but agrees it is difficult. She says she wants to see my next test results to see if changes are needed to be made since my sodium has been normal on all my test thus far.
I do got this, giving up on myself isn't an option, I have to remember that sometimes.
Why can't you moderate your food choices? You don't have to eat anything you want just because you are in a restaurant. Have a little fun, you don't have to go overboard
It's different doing this kind of eating when you "want to" versus have to. I developed this habit of measuring my portions and tracking my food in October because I wanted to lose weight, I didn't know there were problems yet, I just wanted to look better to myself so moderation is easy but it's harder knowing I can't just "slip" or at least that's how I felt.
I did go to a fair and it was nice. I made sure I ate enough to be full and not need to eat a meal for the rest of the day then went to the gym to work off some of what I digested. It was nice. Still worried about everything I ingest for sure but I'm trying not to be.
I did. It was very nice to relax and just enjoy my time without measuring everything. I've already been doing the measuring my portions even before I found out I had CKD because I wanted to lose wait but I did it because I wanted to, now it's a bit harder since the fear lingers but I think it's getting easier. I've pushed for a lot of treatment and referrals since the discovery so hopefully me getting ahead of things will help me manage.
Thank you. ❤️ I think that's the hard part, I've had difficulty trusting providers since my dog's cancer was almost missed if I hadn't pushed for more testing. He was very special to me so it has been difficult not to question everything I'm told by doctor's but I'm trying to let at least some of that go. I went out with her and it was nice.
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I understand what you're trying to do but someone else might not. You are correct, this stage there isn't much restrictions but I'd also like to try to keep it that way. 
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