Seeing my pcp today and wrote out concerns but more tactfully...with ultra sound indication of renal disease, called for ff-up appt w/her; her nurse called to tell me 2 cycsts on liver beneign and no need to come in; went anyway for neph. referral; neph diag me with Stage 3 GFR 54; massive reading on ckd and called PA about appt for Reclast for osteo with stage 3; told couldn't have the infusion.
Bet 1st neph appt and one month later, began restrictive diet for more kidney healthy foods; 2nd visit had lost additional 3 lbs; from 124 to 109 since Jan. Last 3 from changed diet and increased stress?
Urine collect and blood showed GFR up from 54 to 62..is that usual for 1 mo? 2 different labs. Asked 3 times for dietician referral; went over lab rept instead and told me to eat more fats, carbs,dairy etc; labs didn't merit dietician; asked about diet stimulants, Boost or other supplements; said No. would see me in 6 mos.
Nausea and wt loss started this journey; took self off Metformin; nausea stopped but no appetite since Jan. Walking, watching pre-diab diet put me back in normal A1c range.
PCP either missed the orig GFR 54 or didn't take it seriously even tho I kept the appt to ask for neph referral. With no diet. ref. from neph. will ask pcp for one.
Ff 2nd neph visit, started heavy carb, dairy, caloric diet. Yesterday had lost two more lbs. Am I overreacting? I need med team suppt and help with osteo condition. Maybe a request for lung cancer CT scan? COPD but non smoker, bronchitis.
If doc refers dietician, will good ins probably cover sessions? I'll go either way but need help juggling these conditions. Mr. Hull's book says overweight is better than underweight for ckd.
If pcp blows off dietician request, would you change docs? Should I request another GFR test ? My thinking is to gain weight and then get to kidney friendly diet. At 5'7" and usually stable weight of 124-126, 17 lb wt loss makes me vulnerable for other problems.
Any comments appreciated. Just want to be proactive.
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FlowerPreciousLover
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Have you tried contacting a renal dietician to see if her or his office can help you get an appointment as well as to discuss whether your insurance will cover the appt or not?
I have been told consistently that PCPs and nephrologists don’t get too concerned about our data until it falls outside the normal range. With 1.1 creatinine being the upper end of the normal range, that means GFR of approximately 55 or slightly less. That puts us in Stage IIIa chronic kidney disease before they “take it seriously” or get even moderately concerned.
I have asked them whether a decrease in creatinine over a 6 month time period is reason for concern as well. My nephrologist responds that if the decrease is sufficient during that time frame it should be cause for concern but that, unfortunately, not many PCPs refer patients to see nephrologists based solely on that sort of data. Rather PCPs are not likely to refer patients to a nephrologist until the creatinine elevated outside the normal range no matter how much deterioration has occurred nor how suddenly that deterioration has occurred.
Consequently, we do need to be our own advocates. A renal dietician would definitely be of help for you at this point. And I attended Kidney Smart classes as well as read as much credible information as I could find about CKD. I’m still reading and learning... I can’t effectively advocate for myself without a decent understanding of CKD.
Thank you, Jayhawker, for your response and information. I responded earlier to your post but must not have hit the send button. Took typed concerns and copies of lab reports with me and was happy that pcp listened and responded with actions.
Had planned to ask why she'd not mentioned at last visit the GFR54 but since my 1st concern stated shock at the neph's diagnosis of stage 3, she made a comment to a trainee that "we go back and forth with neph's about this all the time; they often overreact to GFR and creatinine numbers" that pretty much covered that subject...smiles
She agreed to refer me to a dietician...not sure if renal which I requested but will start with whomever because of the pre-diabetes, osteoporosis, ckd and continued wt loss concerns.
She also will look into meds/treatment for osteo which was a great relief and prescribed a liquid appetite enhancer.
At daughter's suggestion I asked about marijuana as an appetite stimulant but she said no studies had been published showing that either m. or cbd made a difference. Have you read of other underweight ckd patients trying it successfully for wt gain? Never touched anything like it but willing to try most anything that might help with added calories.
When asked if 8 pt GFR variance within 30 days was unusual or because of 2 diff labs, she said kidneys were one of our most elastic, changeable organs and labs were dependent on so many factors. Seemed surprised that a diff lab was used by neph. and when asked if another lab would be helpful before 6 mos appt. , she said we would do the next at annual in Jan.
I checked my area for Kidney Smart classes but none listed. I think it was an online K.S. class I registered for but couldn't figure out how to do the electronic signature so maybe I can find someone to help me with that next time.
I am so appreciative of you and other seasoned members of this forum for your quick, informed responses to questions and for the courage and positive determination many exhibit in facing new ckd challenges.
This can be a lonely, scary path but having this forum and becoming a self-advocate with the resources listed here makes it all seem so much more doable. You guys are worth your weight in gold! Sincerely.
I’m so glad to hear that your recent PCP appointment went better! That’s a good start.
I use Quest Diagnostics for my labs. I’m not sure where you live so have no idea if Quest Diagnostics is available in your area. If so you might want to use them for labs. They have an option where you can request your own labs without a doctor’s lab order. They have physicians who will sign off on your lab request. I have had them run s few extra renal panel labs on me when my nephrologist thought I only needed the labs once every 3 or 4 months. I like the extra data so I can keep a close eye on my data. (I’ve been in Stage B since January of 2017 and am still not on dialysis. It’s a major issue for me to be sure my diet and meds are actually working. So knowing my data and that it’s current actually helps me to both stay on track and lowers my stress level...)
I have just the opposite issue with my weight so I’ve not tried anything to increase my appetite🐶 (Wed likely be just about right if we could combine our weight management issues:)) I have heard some talk about using pot for appetite reasons but honestly have never checked this out as far as research goes. Maybe others will chime in on this issue.
The recipes on the Davita website have modifications made by renal dieticians for persons to use if they are having trouble maintaining their weight.
As far as the Davita Kidney Smart classes go, I think you could email them for help enrolling. There may be a phone number you could call as well. Some have mentioned similar classes through Fresenius, the other gif profit dialysis group as well. The National Kidney Foundation also has a lot of excellent information you can access online.
I live in west Texas and am so glad to hear that I can req. addt'l labs from Quest Diagnostics because that is the lab the neph. sent me to. Thank you!
Absolutely wonderful that you have maintained stage 3b since Jan.,2017! Reports like yours give hope to all of us.
Between Jack Spratt's no fat & wife's no lean; bet you and I could wipe the platter clean as well...smiles.
Will definitely look at Davita site for help w/maintaining/gaining weight. Will also check out Fresenius site and agree that the NKF has excellent information as well.
Dietician's scheduler told me to ask pcp for referral w/ "kidney failure" to receive ins. coverage. Since my GFRs of 54 and 62 aren't "failure", I requested it from nurse but she hasn't yet called back. One appt is $330 and diet. usually wants a 3 mo check-up.
Will check back today and probably keep appt regardless but wonder how much can be accomplished with 1st diet appt? Will take lab rept and record of daily food intake to give a glimpse of current diet.
I was stable in Stage IIIb for about 6 years with gradual deterioration during that time. I wasn’t in Stage IV very long though. I essentially went from low Stage IIIb directly into Stage V. And this happened suddenly. It surprised my nephrologist.
I’ve been in Stage V renal failure since January of 2017. I am still not on dialysis. And over the past 8-9 months I’ve experienced s very modest improvement in my renal function. So my data now hovers at the very top of Stage V or the very bottom of Stage IV (eGFR 14-16).
So for my kidneys, I seem to experience these sudden plummets in function. There will then be a modest improvement. Then they will stabilize for several years. It’s an overall decline in function but usually several years of stable functioning at each new lower level...
You’ve definitely got quite a lot of function left at this point. So a couple of good appointments with a renal dietician could be well worth the extra money right now.
I just saw a renal dietician for the first time this past Tuesday. (I had seen a different renal dietician s year ago but this was a new one to whom I was referred as part of a kidney transplant evaluation.
To be able to work effectively with you the dietician will need both copies of your current labs AND specific dietary recommendations from your nephrologist. For instance, does your nephrologist have any dietary restrictions for you at this point? (I had no dietary restrictions for quite some time. But as my potassium began to run hig my nephrologist then told me yo eat no more than 2000 mg of potassium daily.
So you may have no specific restrictions yet; that will depend on your lab values. The renal dietician will need you to bring this information to the appointment. Had I been able to see a renal dietician when I still had as much renal function as you’ve got and I did nit have dietary resyrictions( the appointment would focus on designing a diet that would provide as much support as possible for my kidneys.
I always think that there are parts of my medical situation I can’t win. But there are other parts I definitely can win, like eating appropriately. So I focus on what I can win and try to maximize that.
I’m so glad you’ve got a Quest Diagnostics in your area and it’s your regular lab. For me, keeping a regular eye on my data helps me stay on track. Plus, if my data is drifting out of the normal range and I have been totally on track with eating and meds (which I always am:)) I then know I need to contact my nephrologist’s office.
Sometimes your eGFr can vary, especially if you have had tests done by different labs. Your eGFR is just a view at some point in time. My Doctor does an average. Your statement about Mr. Hulls book: I do not know that being overweight is good for CKD? I am at my weight due to renal diet, because of limitations on amounts of sodium, potassium and phosphorus. Renal diets are not 1 size fits all.
Thank you for your response, Orange City. The pcp today said that our kidneys are one of our most changeable organs depending on all sorts of variables. She did seem surprised that the nephrologist used a different lab and intimated that might account for the 8 pt variance in GFR in just a month.
Mr. Hull wrote that "obesity is associated with higher mortality in the gen. pop., but this is reversed in patients on dialysis" . With good diet management, I hope to not reach that stage.
Regarding the" BMI Paradox and Obesity, Inflammation and Atherosclerosis Syndrome in CKD", he wrote that the above is "a risk factor paradox" in which those with high BMI have a better survival rate in chronic kidney disease.
Having read that some ckd patients lose weight on their renal diets, I was alarmed because I eat very fresh, whole foods and most of my lab values were within the normal range so the mystery for my 17 lb wt loss remains a mystery but I have hope that working with a dietician will help improve wt gain while restricting unhealthy kidney choices.
Her responses to my concerns has calmed me and dialed down my stress level which should also aid the appetite.
Thanks to all of you seasoned members for your knowledge sharing and your responsiveness. What a blessing you are for those of us just starting this new journey.
A large part of the medical community do not see a egfr of 54 as a problem. As my husband's nephrologist said, there are so many others so much worse. My thinking is, if you took us seriously earlier, there might no be so many worse off later.
I cannot agree with you more, lowraind! A good friend was taking Chantix but ins. would only pay for 2 rounds? prescriptions. Same ins. pays out millions in later cancer care.
The U.S. could do so much better in preventive care but lack of insurance coverage for it may be a big factor in why there isn't more available for earlier stage treatments.
I understand your frustration. The diet thing is particularly challenging especially if you have more than one health issue going on. I was at GFR 51 in 2013. I saw it was out of range and questioned my integrative doctor who said it could be various reasons. He ended up doing a urine test because of other issues, and since I had hematuria sent me to a urologist. Now I question why I wasn’t sent to a nephrologist. It took 2 years at the urologist running every test before they sent me to a nephrologist. By that time I had already started changing my diet and increased my GFR into the 60s.
A year after seeing her, When I was finally diagnosed a year later in 2016, it was because I had high protein spilling so a biopsy had to be done. Even then, I was told no renal dietician are prescribed until late stages and she didn’t know of anyone to suffers for me. I was told, watch my sodium, cut back on red meat and take fish oil. I found a holistic kidney doctor who gave me some guidelines for my particular situation and have bounced around with my GFR in the mid 60 to 80 range since though my GFR stays most stable and higher when I follow her protocol.
I’ve gotten quite thin as well after giving up sugar and most oils and am also struggling with what to eat as I have many food intolerances. Most of the groups recommending a vegan or very low meat protein diet recommend either flax oil or ground flax as flax has a good balance of Omega 3to 6 ratios. The majority of vegetable oils other than olive oil have high Omega 6 which causes inflammation and should be avoided. The ground flax can be added to anything and it is generally recommended 3-4 tbs a day. Each tbs has 3g of fat, 37 calories so you can get some extra fat and calories in to help keep the weight on. Use ground not whole and grind your own as it can lose nutrients if you buy a ground bag that has been sitting on the shelf. It’s apparently good for osteoporosis as well.
Everyone has different approaches to the diet thing and there is no one size fits all. You have to experiment to see what works for you. I have my labs done every 3 months and adjust what I’m eating as a result of my labs keeping an eye out on my phosphorus, potassium, calcium, sodium and of course GFR, creatinine, BUN and cholesterol. Eating to your own labs is key.
If you enjoy the vegan lifestyle that Hull is suggesting, you might consider looking into the Natural Kidney Journey Facebook group. I can’t personally follow the lifestyle as I am intolerant to half their suggested “must have daily” foods, but there is a lot of success going on with people increasing their function through diet and exercise. Best of luck on your journey!
Zazzel, I appreciate not only your responding but your understanding and also really helpful suggestions. I can be glad my PCP did the neph. referral at my request as quickly as she did!
I'm sorry you had to wait so long to get to neph. and to the holistic kidney doc for help. Sounds like you and the latter, particularly, are really improving your GFR scores...Congrats on that.
I will try grinding flax seeds to add to meals...utube showed a coffee grinder or blender works? I have both. I do mostly extra virgin olive oil and my neph. rec'd butter over Smart Balance.
It really bothers me that I won't see neph for 6 mos but will get a GFR stat from annual w/PCP in January. My chol. readings are normal range; I take Lipitor; my Bun was 10 in Sept; A1c 5.6 in June;Protein in Urine, 34--normal listed as 5-24 so that is concerning; glucose, 106, hemoglobin, 16.4; hematocrit, 47.6; phosp. and sodium hi-normal & pot, normal. More than anyone would want to read.
Since neph told me to "eat more food" in Sept., I've completely set aside kidney friendly diet in trying to pack on more lbs with carbs, fats, dairy, animal protein. My thinking may be totally off ??? What do you or others think? Am I off track by doing this until Jan? I want to gain some weight and then resume more plant friendly protein/kid. diet.
You mentioned being quite thin as well and that is a big concern for me. With 17 lb loss, my BMI is now 17 and feel that puts me at risk for other problems. My PCP prescribed Megestrol, liq. appetite stimulant and after being on it for 7 days, i've gained 1 lb!
I am so hopeful a dietician on Wed. can help me with a plan to add calories while accounting for diabetes and ckd. Honestly just read one chpt of Mr. Hull's chpt on obesity and underweight before leaving for visit with family. I know this is a continuous learning curve and I may be swinging too radically from one diet to another?
I joined this forum yesterday so I'm new. But please seriously consider a new doctor. My PCP missed an egfr reading of 55. I saw it 3 months later when I logged in to scan my chart. I called and they kind of blew me off but said yeah, come in we'll recheck it. It was 36.9. they said come back in 4 weeks. Trust your gut instinct. You know your body better than anyone. It shouldn't have to be this hard to get the care we need and that includes seeing a dietician. Insurance companies don't want to pay for dietician visits which means we can wind up getting sicker because what we think is the right thing to do isn't. So they wind up paying out more and we get sicker.
Thank you, Sassymom. I had relied on docs too much to interpret my labs and wouldn't have even known to ask about the initial GFR. Good for you for following up!
I do so agree that it seems like many if not most docs don't take our labs seriously until we have several values so out of the normal range that they trigger a response from the docs. I had never studied any of my lab reports seriously over the years until asking for a referral to the nephrologist who left me speechless with the Stage 3 CKD diagnosis.
The good news is that once diagnosed there is a wealth of great information from trusted sources on the web, much of it recommended by those in this group who not only understand the challenges of CKD but are quick to respond and share valuable suggestions that can make a real difference for those of us just starting this journey.
I am a new member also and this group has truly been a blessing.
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