When do you limit e.g. potassium (or: what ... - Kidney Disease

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When do you limit e.g. potassium (or: what does your kidneys in?)

Skeptix profile image

I'm following a slightly modified version of Lee Hull's recommendations. For example:

- quit meat, dairy, fish, eggs (bar for the occasional egg he permits)

- sticking to a VLPD + ketoanalogues (Hull's Albutrix

- steering clear of acidic foods in the quest for a neutral/alkaline diet:

- aiming to get my BP down (further than the non-too ambitious target set by my nephrologist)

- aiming to get my BMI up to the higher end of the normal spectrum

I emailed him a question and it's a question I'd pose here:

If, for example, my kidneys are able to keep my potassium levels in range, is there any need for me to limit my potassium intake? It's not that I want to eat kg's of potassium a day, but if not having to attend to potassium levels, I can simplify my diet in my not having to balance/limit that nutrient. A simpler diet is more interesting and easier to stick to.

(Lee said that no, there wasn't a need to limit potassium in that event, but to stick to his diet for 90 days nontheless.)

What are the things that we CKD-ers ought to limit intake of, even though our kidneys are able to keep plasma levels in the normal range?

51 Replies

To answer your question, When your nephrologist or renal dietitian who know you and your health situation tells you that you need to adjust your meal plan. An author who writes a book cannot tell you that, since the author doesn't know you and your health situation.

orangecity41 profile image
orangecity41NKF Ambassador in reply to

I agree Mr_Kidney that what your Doctor and or dietitian prescribe for you based on your blood work is very important. It could be detrimental to limit something that need not be or to overeat something that should be limited.

Skeptix profile image
Skeptix in reply to

We're it so simple.

You can't get a renal dietician in Ireland (unless you are on dialysis) and my nephrologist said I should limit my sodium and red meat intake. Hardly at the races territory. Indeed, it was me who (twice over the course of a year or so) suggested to my nehprologist that I bump my ACE meds 5 > 7.5 > 10 mg so as to bring my BP into better range. They agreed, following my lead.

Ought I really take the lead from my nephrologist matters diet, an area they have little expertise in? Or my GP who outside of kidney basics probably (and not unexpectedly) would have little clue as to CKD management, let alone diet-as-management.

Let me precursor the question posed with 'in the event it is not practical to assemble a renal team around you'

What's your view on setting specific limits on potassium intake when kidneys are currently maintain serum levels? Does handling potassium 'harm' CKD'd kidneys?

I wouldn't be so against a guy in a book when he's proved infinitely more informative on CKD than a professor nephrologist over 7 odd years. Which would you prefer: someone who tells you not to worry until you hit dialysis territory - maybe go easy on Big Macs. Or someone who says to do what you can to preserve what you can

in reply to Skeptix

If you have to manage it yourself stay within the reference range on your labs. Specifically, for potassium keep it under 5.0.Are the costs there too high to pay out of pocket for an RD consult?

Skeptix profile image
Skeptix in reply to

It seems you just can't get one - they operate at the dialysis end if the spectrum.

And my guess is that if that's their paradigm there's little point in arriving in as a stage 3b-er looking for cutting edge dietary advice.

There is a US one I'm checking out kidneyRD but that's next month. They seem a tad 'commercial too but I judge later.

Yeah, that's what I figured to do, to keep bloods in range as a starting point.

I was wondering though, whether potassium (or anything else) was something that ought to be reduced anyway, even though my kidneys are currently handling most things fine. For example, my serum sodium could be fine, yet its advised to restrict sodium for BP reasons. Is anything else like that - handled adequately but you'd be better off taking the food off the pedal. Or getting the reading down to lowest end of the range by restriction.

in reply to Skeptix

If you have heart issues you have to look at potassium as well as sodium. Protein should be managed carefully as well.

Skeptix profile image
Skeptix in reply to

I've a washlist the length of your arm for things needing monitoring judging not only by what Hull writes but all the rest I've been reading.

I'm simply not confident of the docs here. I am convinced that if you walked into an Irish nephrologist/renal dietician and asked what they thought of a very low protein diet and keto they look blankly at you. This has nothing to do with the merits/demerits of that diet at stage 3b. It simply wouldn't feature because of the paradigm being worked to here (do nothing until dialysis. The fact that renal dieticians don't operate outside dialysis clinics tells you all you need to know.

I'll surely bring my doc in board - she's pragmatic and doesn't rely on her white coat. And will let my nephrologist know what I'm up to whilst I look for another (needle in a haystack). I'll follow up online for a dietician. But it will be down to me to drive this gig. I can feel it in me waters.

😀

in reply to Skeptix

Are there no advocates, individuals or groups, in Ireland that can fight for the patients? Dialysis is expensive, and the longer a patient can hold off dialysis by starting a kidney-friendly meal plan, exercising, and staying on top of underlying conditions the amount of money saved can be enormous! Waiting until the patient is on dialysis to start a safe meal plan doesn't save any money and potentially costs lives. Best of luck as you navigate this journey on your own.

nellie237 profile image
nellie237 in reply to

It's the same in the UK. I am sure that you could probably find an experienced private renal dietician in London, but anywhere else outside a renal unit............

in reply to nellie237

By holding off dialysis they can save money and possibly lives. Again, no advocates are available there?!

nellie237 profile image
nellie237 in reply to

I absolutely agree with you, prevention would be the sensible option.

There are advocates for people with mental incapacity, and help for people with physical disabilities. Some of the schemes are very good eg If you have an illness that prevents you from walking anything but very short distances, you may qualify for funding which will pay the lease on a new car, or a mobility scooter.

In other areas care is appalling. A couple of years ago I found one of my neighbours outside with a letter in his hand looking confused. It was a hospital outpatient appointment at a hospital about 30mins away. He had dementia, he could understand what I was saying to him, but his words were limited and often came out jumbled. I took him home and tried to organise welfare transport for him, but they wouldn't accept him unaccompanied with dementia. I took him to his appointment.

The thing that I found most disturbing was that he'd got some paperwork detailing that he'd been assessed and been discharged only a couple of weeks earlier with a list of contact numbers. He clearly could not use a telephone. I contacted 'Adult Services' who basically just went through his paperwork to determine whether he could self fund his care. I found a telephone number in the back of his passport.....cousins who advocate for him today.

Sorry, I've gone off topic. Renal care........I live in an area with 3 local hospitals, only 1 with an emergency dept., covering a population of approx 450,000. We do not have a renal unit. The information that you and others provide is very much appreciated.

Skeptix profile image
Skeptix in reply to

When dropped to 3b. Told by my nephrologist (only when asked) to maybe limit red meat and perhaps start looking (informally) at renal diets. This is a professor in a teaching hospital who sometimes does our consulations in scrubs, coming from the wards...

And forget a GP. My GP will play ball in the testing I ask to have done. But forget her having a better understanding that me!

And I always thought US healthcare was 3rd world. Here is a disaster ..

Skeptix profile image
Skeptix in reply to

It's tragic, I mean really tragic.

When I was shook awake by a gfr drop from mid 40's to mid 30's all my up-to-then-unperturbed nephr had to remark was 'do you know someone who can give you a kidney?'

You what???

Queried on diet modifications I might make I was pointed to the Irish Kidney Foundation. The Irish Kidney Association is the 'advocacy' group.

On their website, I was pointed to patient booklets on a few topics. In those booklets I came across diagrams my father happened to have been commissioned to produce for the IKA about 45 years ago. The booklet information was 'back of a cornflakes packet level

That's Irish advocacy for you. 45 years past its sell by. This isn't untypical for Ireland - up until a boom in 2000's we were an absolute backwater in terms of sophistication. 20 years isn't enough time to change much.

Believe me: this is a gig that I'll have to lead.

in reply to Skeptix

How can changes come about in both the UK and Irish healthcare systems? We see changes happening in the US slowly, but still more on staving off dialysis and focusing on prevention and slowing the progression. I am only beginning my research on holistic nutrition for CKD patients but more is coming out all the time. Holistic nutrition is not new but steering it specifically towards kidney patients seems to be a burgeoning area.

Skeptix profile image
Skeptix in reply to

Ireland tend to be followers rather than leaders in such things. When the paradigm shifts at European level, it may trickle down to here.

On my way to my last nephrologist appointment, I worked my way through hoards of fresh faced med students on their way to and from class. My nephrologist is usually suited but was in scrubs - indicating their having just been interacting with aforementioned students.

It struck me that my nephrologist was teaching these students the view that they themselves hold - which is to take virtually no action at stage 3a or b or perhaps even stage 4. And so the paradigm rolls down hill.

Indeed, the diet side seems to be massive - everywhere you look is research. But it doesn't appear to trickle down..

in reply to Skeptix

My current nephrologist is part of a larger group. I started with them four years ago with a different nephrologist who was terrific. Sadly, he left to go back to a teaching college where he was going to build a unit for their med students on early detection of CKD and how to inform them of best practices to invoke to slow the progression. Included in the unit were renal dietitians for meal planning for each stage based on symptoms and labs for each patient. My last appointment with him before he left was to tell me about it and that it was happening at major teaching hospitals.Hopefully, it will bring about the needed changes here.

Skeptix profile image
Skeptix in reply to

Wow.

It's hardly rocket science: applying the latest understanding directly on the ground. But we're at the other end of the spectrum here.

I've decided I'll at least approach my nephrologist with my proposal to manage this via diet and see what the response is. I realise it's not optimal to go solo but compared to sitting on my hands...

They way I view it is that there are many, but still a limited amount of metrics. If I know what they are and what the ranges ought to be and am being checked against them, then little can go wrong.

But the idea of asking either my nephr or my GP whether they think grape seed extract is a good idea or not. It'll be blank looks and so I either investigate and take a punt or I do not.

Bet117 profile image
Bet117NKF Ambassador in reply to Skeptix

I can understand your frustrations and concerns. What next?

Here is a link to the National Kidney Foundation. It's filled with good information, email lists and tele numbers to call.

Take a look.

kidney.org/treatment-support

Tuolumne profile image
Tuolumne in reply to Skeptix

Take this for what it's worth (which is nothing) but I think I saw in Mr Hull's cookbook a sort of "standard" list of food values for kidney patients. (He used it as an example, not saying it was for anyone in particular because we all must consult our doctors.) Since my doctor says the only thing I have to limit is sodium (2000 mg) I decided to try Mr Hull's example numbers as a guideline because I don't think it'll hurt. It sounds...moderate. Not too high, not too low. I'm stage 3a right now.

3500 potassium and 1100 (if memory serves) of phosphorus (because we don't absorb the phosphorus well in plant-based foods, this number can be a little higher than it ordinarily would be). I'm usually a little lower than that with phosphorus.

I'm aiming for 20-30 g of protein from food (and then getting to my goal of 50 g of protein with some Albutrix). Calories are what my doctor advises.

Skeptix profile image
Skeptix in reply to Tuolumne

Thanks. I emailed Lee on the issue of being able to omit managing something when our kidneys were holding things in spec. My kidz are able to hold potassium in check and it would relax the Nazi-aspect of Lee's diet where it okay to do so.

He said no need to manage potassium intake if my serum levels are okay.. but said to stick to diet (i.e. manage potassium intake despite my serum levels being okay) for the 90 days recommended. A answer that isn't an answer thus.

Sodium is a good example of what I'm trying to find out generally. My serum sodium is okay, but I'd accept that I ought to limit dietary sodium to help BP. That's an example of managing something even though serum levels okay.

Is this the case for potassium, calcium, phosphorous, etc.

Good luck on the 20-30gr protein. Holding to 25gr dietary is really challenging I'm finding. It always ends up being 30gr by the end of the day.

Calories hard to obtain. That said, I'm eating better than I have in my whole life with a vegan diet.

Bet117 profile image
Bet117NKF Ambassador

I agree with both Mr._Kidney and Orange City in this matter.

Keeping an eye on labs and consulting with your doctor regarding potassium, phosphorous, or any other kidney functions is imperative.

There are many books out there but they are not monitoring your blood pressure, glucose, albumin, calcium and other vital components of your health.

Remember that your doctor sees you face to face and knows the big picture of how your body is functioning.

My very close friend lives in Cork, Ireland, so I know how the medical system works.

She had a good GP who could not initially refer her to a nephrologist.

She wound up in the emergency room in the UK where they admitted her, found a good nephrologist and biopsied for diagnosis.

Her journey with autoimmune kidney disease was trying; three immunosupressant drugs after they found a steroid allergy. She is holding her own five years later.

She did her research when she and her family moved back to Ireland prior to the pandemic. She found a good nephrologist; not as personable as the one in the UK, but competent.

Her husband had issues with adapting to the Irish medical system from the UK; high cost of medication and they both found another GP as he handles most issues there.

If you are not happy with the care received from first your GP and then nephrologist, have you considered getting a second opinion? I know that it's not simple, but worth a try.

We are all pulling for you. Read up and call some of the places suggested.

Reach out..

You should have a look at the NKF nutritional guidelines. It might not be absolute but it does provide a good coverage. kidney.org/professionals/gu...

According to the documents that I've read there are no guidance for Potassium intake and my understanding is that it's an active are of research. This page provide some good information regarding potassium. lpi.oregonstate.edu/mic/min...

Have a look here. As a CKD patient you should not take any supplement without consulting with your medical team (I know that you are still looking for specialists) but this page provide lots of good information regarding blood pressure. If anything it shows that blood pressure is affected by nutriments and there are foods that you can eat that will provide those. lpi.oregonstate.edu/mic/hea...

Bet117 profile image
Bet117NKF Ambassador in reply to Michael__S

Agreed.

orangecity41 profile image
orangecity41NKF Ambassador in reply to Michael__S

Thanks for the link to Kidney.org on potassium. It is very helpful.

Aside from your bloodwork as interpreted by your PCP and Neph, you're gonna have to come to your own conclusions based on your own research. And it sounds like you're a research-aholic, which is a great thing. Many of the things you'll hear from armchair quarterbacks and doctors are completely unfounded by scientific research, so I'd press them to cite research backing up their recommendations. How much to drink? How much exercise? What type of exercise? The exact role that diet plays? Is continued high potassium intake safe if your plasma levels are within the reference range? Can that cause future heart problems? You can ask these same questions about ALL of the electrolytes that are tested in your CMP. The most important thing to know about potassium is that if bad kidneys can't remove the excess amount efficiently, it could lead to serious heart issues. And NEVER forget that ckd patients are twenty times more likely to die from heart disease than the normal population. That's why heart health/exercise is so important. It may not halt the progression of ckd, but it lowers the risk of dying of a heart attack prior to dialysis or transplant. Perhaps research will one day be able to prove that exercise slows ckd progression. Exercise certainly tends to lower blood pressure, and that "may" enable a person to cut back on BP meds. If I were you, I'd add the words "safe for ckd research study" after most of your google searches. About the only thing that's backed up by research is that a low protein diet tends to slow ckd progression. Not by a whole lot, but definitely measurable. Most everything else is inconclusive, including much of the stuff in Lee Hulls book. And god forbid if you don't need to lose weight because Hull's book makes it very difficult to get enough calories to sustain an active lifestyle. Be your own best advocate!

Skeptix profile image
Skeptix in reply to Marvin8

"Aside from your bloodwork as interpreted by your PCP and Neph, you're gonna have to come to your own conclusions based on your own research. And it sounds like you're a research-aholic, which is a great thing."

It's interesting, but I'd much prefer lying on a beach with a page turner. Bare necessity is the mother of my particular interest.

"Many of the things you'll hear from armchair quarterbacks and doctors are completely unfounded by scientific research, so I'd press them to cite research backing up their recommendations. How much to drink? How much exercise? What type of exercise? The exact role that diet plays? Is continued high potassium intake safe if your plasma levels are within the reference range? Can that cause future heart problems?"

We were in a posh hotel where the airco wasn't functioning. We went through a couple of miserable days of our week stay with an overheated suite and after complaint finally had it rectified and got some decent compensation.

I was walking down the hall one day when, through open door, I heard an American discussing his issue with air conditioning with a polite member of staff who'd been summoned.

The American: "You want to talk to engineering about this matter? Hey, there's no need to leave, you can call them right now from the phone right here!"

Staff member "Sir, we'll certainly see about getting it rectified as soon as we possibly can"

The American: "Well, that's great but I'd like a room change, right now. Could you send someone up to carry my bags - I'll go pack"

"Press them to cite research" HA-HA-HA .. the mere idea from an Irish context!!

"The most important thing to know about potassium is that if bad kidneys can't remove the excess amount efficiently, it could lead to serious heart issues. And NEVER forget that ckd patients are twenty times more likely to die from heart disease than the normal population. That's why heart health/exercise is so important. It may not halt the progression of ckd, but it lowers the risk of dying of a heart attack prior to dialysis or transplant. Perhaps research will one day be able to prove that exercise slows ckd progression. Exercise certainly tends to lower blood pressure, and that "may" enable a person to cut back on BP meds. If I were you, I'd add the words "safe for ckd research study" after most of your google searches. About the only thing that's backed up by research is that a low protein diet tends to slow ckd progression. Not by a whole lot, but definitely measurable. Most everything else is inconclusive, including much of the stuff in Lee Hulls book. And god forbid if you don't need to lose weight because Hull's book makes it very difficult to get enough calories to sustain an active lifestyle. Be your own best advocate!"

I've budgeted to add a bit of weight to get me up to the top end of my currently healthy BMI. But it's a struggle to get calories in. I don't plan on doing any more exercise than I have too!

I'm guided by Hull's approach (PRAL, vlpd+keto, exercise, sodium, etc.). But I'm trying to establish where I can leave his approach aside so as to make the diet more easy to adhere to. If I can, for example, forget about trying to manage e.g. potassium intake once my numbers are good, then that's an example of the simplification.

Skeptix profile image
Skeptix in reply to Marvin8

'Aside from you bloodwork being interpreted'

I went to my newish GP requesting bloods for my annual visit to my neff When they came back with a drop in eGFR from mid 40's (steady for years) to mid 30's I went back for a repeat set to confirm.

On visiting my neff and with my querying what might be going on to have resulted in such a drop, I was sent for more bloods as specified by the neff

PTH, b12, foliate, ca/potassium were things added to the blood check, over and above the items ticked for checking by my GP.

Why would a GP be expected to usefully 'interpret' results when, on being told of a sharp dip in eGFR they don't know to expand the list of things requiring checking in the first place??

Not being facetious and I accept that if bloods are out it's not the case that I know best what next to do. But for monitoring, surely there's a list of things to check, a range and little to 'interpret' unless you're out of range.

I've only got creatinine, urea out of range. A little BP (135/80 at present but working on it), slight elevation cholesterol. And that's it. What's to interpret?

missdc profile image
missdc in reply to Skeptix

I have a rare kidney disease that leaves some very subtle levels "off". Only a nephrologist caught it, and I have had it my whole life. (It is genetic and a congenital birth defect.)

So there are things to interpret that have to do with blood chemistry as well. Yes, I have chronic kidney disease, but I also have renal tubular acidosis and one kidney.

It took a lot of tests to really narrow down what was wrong. It's super rare - 20,000 people in the US have it total.

I can't tell you which labs were the magical ones that they added up to catch it. But the treatment is working, and I have been diagnosed by more than one professional. ( Yes, I've had more than one 2nd opinion)

Interesting debate re quality (or lack) of support for ckd by medics etc at least outside US. Like Nellie, we are in UK and basically try to help my mum with ckd3 ourselves It has been a case of having to since her nephro is useless and we don't want to waste time (yet) trying to get another in the hope he/she is better.

Fortunately ckd seems largely based on diet and well-being so our personal background/training may help and appears to be (fingers crossed). Our current mission is to reduce the rate of protein leakage by diet - the nephro was unconcerned about it in past 2 video calls!!

We have no experience of renal dieticians as the nephro hasn't suggested any. But my personal, past experience of an NHS dietician is underwhelming!

Skeptix profile image
Skeptix in reply to userotc

I've concluded my nephrologist not so much useless as operating according to an out of date paradigm. Which is another kind of useless.

Interesting to note, the latest NKF guidelines KDOQI 2020, which prescribe a low protein/very low protein diet commencing stage 3, are an update on the previous KDOQI issued in 2000.

2000? That's [EDIT] f**kin' [CLOSE EDIT] 20 years ago. Surely guidelines can't be up to date for a period of 20 years?!

PS. If you haven't read Lee Hull's book, "stopping kidney disease", you should. It's flawed and overly long, but as a 'go to' way to get yourself quickly up to some kind of speed on the matter, invaluable.

Marvin8 profile image
Marvin8 in reply to Skeptix

I could agree more.

Skeptix profile image
Skeptix in reply to Marvin8

Edited the post to better reflect my feelings on the matter

Marvin8 profile image
Marvin8 in reply to Skeptix

Sorry, I meant to say I COULDN'T agree more.

Skeptix profile image
Skeptix in reply to Marvin8

I was assuming the typo. "I could agree more" would be properly cryptic!

userotc profile image
userotc in reply to Skeptix

I agree about medics in general. It's not personal as they often follow outdated and/or illogical (imo) guidelines. For example, I believe mum's nephro is broadly following protein leakage guidelines of kidney research UK which make no real sense but an acceptance of their limitations. And he appears comfortable to wait until protein leakage is high enough to consider other options. We are not.His skill is kidney transplanting which may also explain his approach!

Thanks for the references. I will read KDOQI 2020 and maybe Lee Hull eg if we cannot resolve the protein issue with our DIY plan.

Hello ... I am a Filipino working in Singapore for the past 20 years. Until I moved here, the quality of medical support I experienced in my country was lacking and appalling. I had to do a lot of research and learning myself and moved from 1 Urologist & Nephrologist. When I had done a matrix study (comparative) on where I should do my transplant (and elected to do it in Singapore) I found out that the medical services in my country has not improve that much. I even have to stay is Singapore for 1 year after surgery to complete my recovery as we (my current Nephrologist and me) could not find the same sophisticated set up in the Philippines. Or even just an experience kidney management focused Nephrologist in my hometown.

Even in Singapore, it took me 5 years to find my current Nephrologist. I have been lucky to be with him for the past 14 years.

He has a network of Urologist, transplant & Surgery team, cardiologist, psychologist, dietitian, nutritionist, GP, etc. All my other ailments & conditions are referred to his circle. And what I noticed is that my Nephrologist had always the final proposal (among a few options). And I always have the final decision.

He would overrule some of the prescribed meds but explain to me why (how a lower or higher dose is better for the kidney, or the side effects that he knows I cannot tolerate or would affect my other conditions, or if another meds is preferred, etc.) They have one interconnected seamless system that each one of them can view. I would come back to my cardiologist and he would know why he was overruled. I suspect they discussed among themselves, that is why they continue to be a team. BTW, I have not taken any vitamin supplement with this Nephrologist. He would likewise vet my own recommendations and would agree, find better options or disagree.

I am lucky to be in this position and I could only wish you all can have the same experience. I hope that the advances in technology can allow you to at least virtually contact my team (or any similar one in any country that have them) in the future. It really a blessing that my team allowed me to concentrate on me and my recovery.

Take care everyone and be well...

Wow. To have an integrated service like that. Makes complete sense.

I'm used to Ireland being 3rd World in terms of its health system. As the saying goes: if you suspect you're having a heart attack, get yourself to Dublin Airport and hop on the first flight to Paris or Berlin. Best to collapse there...

I'll share my experience with managing potassium and protein. When I was still in Stage 3b (now in Stage 5 awaiting a kidney transplant next Tuesday), my potassium was high normal or slightly above the limits. My neurologist at the time had me start watching/limiting potassium intake, which I found extremely difficult since I tended to ear lots of fruits/vegetables, milk, and Italian foods (tomatoes).

There were two reasons potassium went high. first, I was on Lisinopril, which worked great at maintaining a healthy BP, but which is known to elevate the potassium level in my blood. I was also eating a very high fiber cereal that had a lot of potassium in it. In my case, cutting out that cereal and some other high potassium foods did the trick and I have not had issues with my potassium levels in the 30 years since. For my case, Occam's razor proved true.

The one are I have struggled is with getting sufficient protein. For the last several years, my albumin has hovered at or below the limit. To prep me for either a transplant or dialysis, my neurologist has had me take > 1 g/kg each day of protein. I weigh 85 kg. While this is counter to all the advice we get - low protein diet, he was balancing a sense of competing interests. Fortunately all of my mineral levels have remained in range. The challenge with that level of protein is that it still tool 6-9 months to raise my Albumin levels, but they can drop in a month if I am not vigilant. I always have to remember the time constant for things to change is part of the process of managing my kidney disease

As has been said before, each of us is a unique case, and we have to be diligent about monitoring/adjusting treatment in concert with our neurologist and GP. In my cse, the one thing that has made the biggest difference, positively and negatively, is proper management of my BP. My rapid transition into Stage 5 came as a result of having to change my BP medicine and taking too long to adjust it to keep my BP low.

Bet117 profile image
Bet117NKF Ambassador in reply to ILMA54

Quite a journey! I Sending you healing prayers on your upcoming transplant. It will go well.

Reach back and let us know how you are doing.

B...

Skeptix profile image
Skeptix in reply to ILMA54

Best of luck on the transplant, that's quite a journey.

Question if I may. This higher protein diet. Did your doc ever mention keto acid analogues - basically, they're the amino acids you get from consuming protein without the urea downside.

Or did you just have the pleasure of munching your way through a McD's double quaterpounder with cheese and bacon?

ILMA54 profile image
ILMA54 in reply to Skeptix

He did not. His primary concern was not letting albumin get too low because if I went on dialysis, I was going to have a hard time keeping my Alb level up, and if I got too low pre-transplant, it might result in being placed on hold. Perhaps the fact that all my mineral levels have been in range and stable influenced his thought process.

Bassetmommer profile image
BassetmommerNKF Ambassador

Interesting question. So based on my recent labs, I would say it is best to watch potassium limits even if the numbers are good. When I first saw the renal dietician, she put me at 2000mg a day. Normal is over 4000mg. So I log my food with keeping it within2000. I was doing great, potassium was below 5 for a couple of labs. Then I switched to totally plant based and upped my Potassium intake and whammo.... I was at 5.6. So I am back to limiting it. Things I do not eat and haven't for years now are potatoes in any form, winter squash, and of course no read meat. Within the last 6 months I got rid of any chicken or fish too. I added brussels sprouts and zucchini, which I may get rid of again because they are so high. I do eat broccoli since in the winter, its about all that's good. I eat a LOT of fresh salads in the summer as I grow my own lettuce and I think that also raises my potassium. I put cukes, radishes, green and red peppers in my salads. I also enjoy fresh cherries, strawberries and watermelon and nectarines. I eat a lot of pineapple too. NO oranges, bananas or other citrus or cantaloupe. I cut down cheese, which was really hard to do although I still have Laughing Cow wedges on my wraps. No milk, eggs and only rarely Lite whipped butter. I try to stay away from any processed foods. The interesting thing is by cutting out even more PB foods, it may have raised my potassium but I dropped my glucose levels to the point where I no longer need insulin in the morning and dropped the evening shot 12 units. I have been limiting my carbs such as pasta and the fruit doesn't seem to raise it. So it is such a balancing act.

What is frustrating is although I limit my caloric intake to between 950 and 1200 calories daily, I am unable to lose weight.

ILMA54 profile image
ILMA54 in reply to Bassetmommer

The two things that have the biggest impact on my weight are diet and exercise. Over the last four years (prior to March 2020), I had gained 20 lbs as a result of working 7 days a week and not exercising.

Last summer, I started Weight Watchers again, and I began swimming 45 minutes four days a week. Coupled with some extremely stressful family issues that were generating a great deal of stress, I lost 25 lbs.

When bullous pemphigoid reared its ugly head this spring, I had to stop swimming and got minimal exercise. Combined with being a bit sloppy in my eating habits, I have put back 10-15 lbs.

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to ILMA54

It is easy to do. Even with my caloric intake at such a minimum I also put in at least 2 miles every day and I try for 3 on most days. Still..... not dropping a pound. I lost 45 all total but now I am permanently stuck and have been for over 2 months.

Skeptix profile image
Skeptix in reply to Bassetmommer

950-1200 calories and you can't lose weight?? How can that be? Surely it takes x amount of calories to move from a to b or y calories to power a heart for a day?

What are you running on, if not fuel?

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to Skeptix

This, my friend, is the issue. They cannot figure out why I am not losing weight. I am seeing a specialist right now for this very cause. I have tons of energy though but she is concerned with muscle wasting. It has been a very frustrating and expensive journey.

I have stage 1 cancer in one kidney. The kidney will be removed soon. The doctor at John Hopkins told me that I will have to eat a diet of 70% veggies and 30% protein as my remaining kidney will work hard to process large amounts of protein. This will totally flip my world as I'm practically a carnivore for other health reasons.

Skeptix profile image
Skeptix in reply to Stage1

Commiserations on the loss. When you say practically a carnivore you mean you eat largely animal products only? What health condition forces that?

Stage1 profile image
Stage1 in reply to Skeptix

Diverticulitis problems. Fiber is abrasive and painful to deal with at times.

Skeptix profile image
Skeptix in reply to Stage1

F@#k. What a crock, having diseases with opposite requirements. You have it tough, and that's the truth..

If it makes you feel good, do it. Plant based is the way to go for sure according to the research regarding just about all diseases. Salt is the real killer. Potassium in veggies is only half absorbed due to the fiber. You can take fiber supplements. They have gummy bear ones.

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