Shock kidney function result, any related experiences?

[userotc]

After reporting on here a few times that mum's kidney function had steadily improved for 5y, last week’s results reversed much of the gains made. After improving from eGFR 36 (post-nephrectomy) to 76 ml/m as creatinine fell from 131 to 72 umol/L, her creatinine is almost back to where it started (129) with eGFR 46. Though technically low/moderate CKD (just), its concerning.

On further investigation, I suspect 1/more of the following may contribute. Related experience(s)?

i. Drinking less water in recent months (down to barely 1l/dy)

ii. Benadryl 1 night; renaldiethq.com/benadryl-ki...

iii. Weight increase albeit only ~0.5 stone

iv. Formication & skin issue (itchy - mainly stomach, thigh areas). Nurse thinks a heat rash.

v. Blood sugar (hba1c 42 from 41 a year ago, albeit fasting glucose stable)

vi. Slightly lower ferritin (62 from 71 but is 19% thro normal range)

vii. Slightly increased phosphate (1.3 from 1.12 but 83% thro normal range)

Note also:

• Some serum data not worsened including urea (11.4 from 12, range = 2.5-7.8) and albumin.

• Proteinuria increase continued but data conflicting eg 24h improved from 0.44 to 0.26g.

• No significant changes to a good diet.

• Took Megamax for 1+ wks but natural ingredients.

PS Please don’t advise asking her nephrologist, hes been useless for 5y and likely to just say all OK.

[drmind]

I had to stop taking benadryl as per my nephrologist who has been very helpful. I found this that may explain why:"Acute kidney injury (AKI) can be caused by a commonly used over-the-counter and prescription medication, diphenhydramine (Benadryl, McNeil). We do not usually think of this drug as a major source of renal impairment, but it can cause problems in some predisposed patients, including elderly populations.

ncbi.nlm.nih.gov › pmc"

Hope this helps.

[userotc in reply to drmind]

Many thanks, I really appreciate confirmation of one of the options I listed (and linked) - though mum may not appreciate reference to elderly populations at age 66 lol!!. For my records, I'd appreciate further details but I couldnt get the link you sent to work.

[drmind in reply to userotc]

ncbi.nlm.nih.gov

This is the link I used. However, several months ago, I found a number of sites that said similar negative comments about benadryl. I had used benadryl for a number of years as a sleep aid and was shocked reading about it. I also knew a physician that did research at the

University of Florida and he told me 15 years ago to stop using it. It was difficult to believe at the time as I saw it as an innocent over-the-counter supplement.

I now use a very low dose of melatonin (.05 mg) and it works to help me fall asleep but, of course, not to stay asleep. BTW melatonin works best at the very lowest dosage for ones situation.

Apologies to your mom. At 65, shes a young lady. I was just starting to get into my own at that age. Best to you and your mom.

[KidneyCoach NKF Ambassador]

Find a new nephrologist.

[userotc in reply to KidneyCoach]

Thanks A full response is in my reply to futureckd.

[KidneyCoach NKF Ambassador in reply to userotc]

I've read all responses etc. I disagree that proteinuria is not an issue. Every urologist, nephrologist, pcp I have encountered would disagree as well. I was diagnosed in 1980 and have had *many* over 42 years. If you had sought out a new nephrologist 5y ago its likely you would have a better, newer one by now. I hope you and your mom do well and continued improvement is in your future. Blessings

[userotc in reply to KidneyCoach]

It appears that US nephs are better than UK. I recall several others on here criticising theirs eg re protein (mum's is unconcerned at least at her level). If I remember correctly, they were mainly in UK.

[Drawi]

Everyone should drink about 8-10 glasses of water a day it's been said some disagree but also it depends on the persons body as well; we need to keep our bodies hydrated during the day. Especially when it's hot & most of all humid although I'm not a doctor or nurse I did take care of our Mother for almost 10 years after her massive stroke so I educated myself also with diet & nutrition. Plus just most recently my one brother last year was diagnosed with severe covid thankfully is doing well & off dialysis but I still encourage him to watch what he eats and even go onto the website of the National Kidney Foundation. I also have additional information for him when I see him the next time but also another good hydration is coconut water it's full of electrolytes plus it's low in sugar since it's natural not like regular gatorade that has a lot of sugar in it. Allergy & cold medicines you do have to be very careful with because they can over time it says so on the box with kidneys; liver so it's always very important to discuss anything like this with the doctor first. If not then a Pharmacist is the next best thing because a doctor knows the medical part as where a Pharmacist knows the technical part. If you were to explain something as to the medicines that the person is taking vitamins they can help assist you with that & help point you in the right direction. The body doesn't need a lot of protein unless your doctor says so through bloodwork according to the AHA/ASA a plate should be 1/4 grains such as rice; quinoa; etc. 1/4 protein meaning that it should be about no more then your 4 fingers regardless if it's chicken; turkey; or fish. When shopping for that ask the person who's cutting it if they can cut it about 3-4 fingers in measure of your hand, and there shouldn't be any problem. And 1/2 of your plate should be of vegetables because it helps absorb the protein into your body also some fresh fruits if possible otherwise frozen is next best and a little dessert on the side & try to avoid a lot of added sugars. This I even tell my brothers especially the one who's still recovering & going through therapy & one thing he says is that he knows & he watches everything he eats & thanks for looking out for him. I say to him anytime we're family but I do or help wherever I can for others also, also make sure the person gets enough of exercise even if it's say 15 minutes say once or twice a day can also help. When drinking water you can either use fresh lemon or lime or both for a little added flavor or you can use from the lemon & lime filled bottles in the produce area also. It's better then nothing even though lemons & limes are very acidic once mixed with water & they pass through the body in most cases it become alkalized. But again I would also confront with say a nutritionist in say a Shoprite some have them & you can speak to one for free & they can maybe help you further with this, I hope this helps you out a little so you can ask someone else some questions further about this.

[userotc in reply to Drawi]

Many thanks for your reply. Its good that you educated yourself with diet & nutrition as did I before taking it 1 step further by completing a 3y Diploma in Naturopathic Nutrition. I start to practise next year once Im qualified in 2-3m time, specialising in a non-renal area.

I have been her main advisor re CKD as her nephro has been useless but a key part is that the client/patient must (a) want to do it and (b) be disciplined! In this case, mum lapsed with water (her protocol from me was circa 2-2.5l/dy) and she also decided to take an OTC medicine from the cupboard (now in the bin!) without checking. Hence my prioritised list showing those as the most likely causes of her results setback - thanks for agreeing.

Hopefully her results will get back to where they were once she's back on track.

[RoxanneKidney]

Sounds like she still is in good health actually. The overall trend has been up despite one result.

[userotc in reply to RoxanneKidney]

Many thanks. Yes we think/hope so which is great though a 40% eGFR drop in 10m is disappointing, particularly after a steady rise of 111% in the past 5y. 🤞 for the future!.

[Futureckd]

Userotic, - you were complaining about your mom’s neph in almost every post since I started reading this blog. Why did you continue on using “ a useless nephrologist”? Even though you received a degree in naturopathy and your mom follows a natural protocol prepared by you, you still need a new nephrologist that you trust as you never know what might happen in the future. My advice is to change the nephrologist to a new one that you have some trust in. I had 3 neph in one year, the first one was local and I needed a second opinion from a research hospital, so he/she would be on top of line on advanced research, which I did. The later shared my case with a specialist in a tiny part of kidney disease, vasculitis , whom I continued on with her (vasculitis is the immune system attacking fine blood vessels in kidney). That does not mean I follow every single thing she says, I alway research and ask other patients, read some books and ask her and the renal dietitian questions. Every time she sees me, it is almost 1 hour discussing every number in my blood test to see if the immune system is not attacking the kidney, otherwise I would need to repeat the medication Rituxan infusion. What to not trust about that? - The other point is that, also in your posts recently, you mentioned that your mom’s kidney function improved naturally with the protocol she follows except for the protein in urine. This marker, in addition to creatinine, is the most significant one to indicate kidney damage. You mentioned here it is fluctuating between 260 mg and 440 mg per 24/hrs, and that is moderately high. - I read somewhere that you can decrease creatinine level but it does not mean improved kidney function if the protein is high in urine.

All the above are my own observations and thoughts as I am not a doctor but a patient like everyone else here.

[userotc in reply to Futureckd]

I appreciate your comments albeit coming across as a bit abrupt! Some key points you need to consider re neph change include:1. The current one is mum's so it's her decision.

2. He was referred by her urologist who she rates highly so may explain reluctance to change.

3. Unlike you, we live in the UK where all medics are scarce (increasingly past 2 years).

4. We are unaware of a good way to change except maybe trawling "I want great care", matching with a local neph and then 🤞Feel free to share change experiences, albeit non-UK.

5. Others on this forum have criticised nephs in the UK so 4 may be wasted time anyhow.

You may also recall our discussion on here where I was clear that we avoid drugs (which medics generally offer) so they would only be a last resort and many on here/elsewhere share that view. Consequently I would be more likely to suggest seeking a renal naturopath - but it's mum's decision. Meanwhile I reserve the right to criticised her neph based on experience to-date.

Whilst I sought others' relevant experiences with my post (for mum's benefit) and am grateful to have received some, I see her setback as temporary which we will correct. If not, then we will seek support elsewhere whether that be a naturopath or indeed another nephrologist.

PS if you have a link re your reference to proteinuria essentially negating kidney function improvements via creatinine, please send. As I'm sure you've read in my posts, mum's neph has gone on record saying her proteinuria will never be a problem and that her function via serum data alone was improving (that's fact, not a criticism!). Another neph may disagree but such inconsistency would give little confidence.

[Futureckd in reply to userotc]

I think keep criticizing your mom ‘s neph, although it is your right as you said, may influence other patients in a negative way. So we all need to be careful about that. Regarding protein in urine, I have all my information from medical nephrologists and my primary physician whom I meet and discuss in person about this issue. for creatinine/protein in urine issue in particular, if that what you are after, in this blog , someone posted a video by a retired nephrologist, university researcher also, who emphasized on this issue that creatinine alone low or high without testing protein in urine may or may not be conclusive of kidney function. I followed other videos by same neph and I do like what I hear. If you can’t find the video, let me know and I will dig it out for you. Hope this helps.

[userotc in reply to Futureckd]

Yes please find video or send further details so I can find. Many thanks.

Re reporting on here about nephros, I personally think that true experiences are what people want so that all options can be considered. Isn't that why people log on? That's certainly what I sought with my post. Believe me, I'd love to say mum's nephro has been excellent in helping her CKD and I'd be the first to report it on here.

[Futureckd in reply to userotc]

Here is the link namto the video that hislittleone posted in this blog last weekend. It is on Dadvice TV - Kidney Health Coach, the title of that video is “Chronic Kidney Disease Stage 3”. I tried to post the link but it became a sentence as you can see (iPhone). That was my first video for this doctor. Then I listened to several ones of his, each video is focused one one topic. He talks a lot about protein in urine and egfr relationship. He is talking about the must to change lifestyle, plant based diet, exercise, etc which are all natural methods, in addition to the main meds for treating protein in urine. Hope this helps.

[Futureckd]

I should add that I bought his book and midway in reading it. Just Google DadVice TV kidney disease stage 3 and you will see the video, I just tested that.

[userotc in reply to Futureckd]

👍👍

[userotc in reply to userotc]

Thanks for the video identity (Id watched before but didnt recall!). Key points for mum:

1. Her proteinuria is below his "significant" criterion of tot protein of 20 or 30mg/dl in UK at 12 so thats good.

Also her 24h figure improved to 26 g, as youve noted but strangely other urine markers eg microalbumin (73 ug/ml) and albumin/creatinine ratio (16 mg/mmol) have worsened.

2. He indicates single eGFR/creat results can often be ignored to which I agree (especially as mum's serum urea is slightly less this time;11.4 mmol/L). Retest likely ~5m.

3. He suggests "shooting for" BP 110-120 and mum's is stable at ~118/82 so good.

4. He recommends reducing hba1c. Mum's is a concern and we continue to try to lower it.

So overall mum's latest results are not too concerning according to him, fingers crossed.

Note: He is rather negative about water and vlpd but hey he's radical!. He also "criticises" (US) healthcare.....mmmm....not nice. Lol!

[medway-lady]

I wish you would stop with the sweeping generalisations. I'm in the UK my Nephrologist is lovely and I've never seen a huge number of posts that say that Nephrologists in the UK are worse than in the USA. And let's not forget our point of care is with the NHS unlike America which does not have an NHS. People always dislike being told the truth and frankly and I do mean this but if you have the answer to your mothers problems why do you need a Nephrologist anyway. I'm so remember reading how you improved her CKD and now it appears to be worse. Forgive me but might it be that your improvements were just part of the natural function of her kidneys. Function declines as we get older as our kidneys age as do all our organs so please if you don't like her Nephrologist and she does ? then she must be the person who makes the decisions to carry on as his/her patient. CKD is complex and it takes many years to become a consultant so perhaps have more faith in their ability to diagnose and treat your mother. I wish you the best of luck but do wonder why you posted previously of such success and now it appears not to be that success although of course you do seem to be looking at finding something else wrong. I'm only posting because of your comments about Nephrologists in the UK as we have some of the best care in the world and yes the NHS is hard pressed but people with serious conditions are still treated and treated well. We are never turned away when in need it may not be perfect but in my experience our medics are hard working and have continued under extreme pressure during the pandemic. I can't be bothered to say anymore but have relatives in the USA and Germany and France and I'm b---y glad to be in the UK with a serious illness.

[userotc]

Wow! I post on here to help my mum with her CKD by seeking some relevant experiences and get attacked by some (but many thanks that shared their experiences).

My understanding of being on a forum like this is to share experiences to help others eg that answers your question "why you posted previously of such success". It was in response to queries on improving CKD as an illustration of how natural methods might help and subsequent replies indicate that was useful. I also believe/hope that mum's latest experience also just sends out a message that those methods must be followed diligently. Time will tell.

But I must accept that being on a forum like this and sharing our experiences and making reference to others' comments on the forum may upset some people. Likewise you should accept that everyone's experiences are different and readers can benefit from that. You clearly have had good experiences with the NHS which is fine but others have not, Im afraid. As an example, I can summarise the contribution to-date of mum's neph (who she was happy to accept at the outset in expectation of his help) and let you decide if it is good or not. But clearly there would be little point in doing so.

[medway-lady in reply to userotc]

I think you are mistaken and have not looked for shared experience at all but to brag about your helping your mum in her CKD journey. I have asked you before without a response what is her diagnosis as if like me she had an AKI no amount of diet can bring her kidneys back from the dead. I think your posts do upset people as if someone has CKD with a diagnosis then surely anyone who is prepared to tell people how to improve their function would be expected to provide some evidence.

[userotc]

Mum's UTI was not corrected naturally so she had to revert to an antibiotic - which responders on this forum had positive experience with. But her frequent UTIs have not since returned and we believe that may be due to specific probiotics she took for a while after the a/biotics. Evidence? Well we did not undertake an RCT study(!) but the UTIs have not recurred since that post you refer to a while ago 🤞which is as much "evidence" as you can expect with allopathic treatment.

[wingsofadove]

I don't know what happens. I am just into Stage 3a. Gram Neg. Bacteria. After Covid restrictions were lifted I was assured that the lab. would do a culture...Result came back No Bacteria...Culture not indicated at this time. Chronic Cystitis...Worsening. I just did not know what to make of it!!! I have 2 sites to pass on which you may already look at, but here they arethinkkidneys.nhs.uk and britishkidney-pa.co.uk

There is also Kidney Care UK

I find them all helpful, but especially the National Kidney Foundation UK who have two trained counsellors to talk with on a Helpline.

Best wishes X

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