[Steven Chua]

https://www.kiseki.asia/postbiotics/

[Diane Smith]

I just don ‘t know if these are good for PKD or not. 

Sent from my awesome Gold iPhone 12

~Diane

On Oct 3, 2021, at 12:07 AM, Steven Chua <steve...@gmail.com> wrote:



https://www.kiseki.asia/postbiotics/

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[j bayne]

I am committed to my diet etc.. as recommended but I also want a good quality of life. One aspect of that is dealing with the other side effects of the disease like lack of collagen, aging aneurysms lack of fascia..hernias. so wondered if anyone has looked into any pkd safe devices, treatments herbs lotions, supplements etc that can help with addressing these issues including aging appearance. I still have people ask me when the baby is due so must look that old but, as a women I can hide my tummy back can't hide the face so want to age gracefully and the vein and arteries and hernias all cause me grief. Open to hear your experiences

Jen.

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[anthony...@fastmail.co.uk]

I have my large natives yet also a TXP going on 16.5 years. My extra takes are, for the skin and ageing, Selenium, daily. I have since the age of 19. Now 65!

Taurin for heart and general muscle. Approved by my neurologist.

Cider vinegar in a glass of water a couple of times a week for plaque in the blood ways. Also for that, 225gr of garlic and ginger and cider vinegar, 500gr honey, simmered for thirty minutes and bottle when cold. A tablespoon a day or every other. When not doing just vinegar!

Rotunda size, fat not old kidney, keto diet of low carbohydrates and intermittent fasting. I do eat meats!

Drink good quality water all the time. Just water.

I use saccharin sweeter in place of sugar, the modern version.

This all suits me. Arrived at, after long and failed experimentation’s.

Eat organic as much as possible and keep fibre good in the weekly diet.

Of course, I don't think about this it is just natural now to do. 

Not that any of that might be of assistance to you, yet trying stuff eventually gets results. Certainly keep enquiring. 

All the best Michael 

Cavalier de l'iPad:

 “ Every moment happens twice : Inside and Outside ..and they are two different histories ..! 

Carpe diem🌀

To view this discussion on the web visit https://groups.google.com/d/msgid/pkdiet/CACVc-mZCVrXkiKasAvq%2BHvni0oxtc0yzh-TvyiQyonRjJ91SrQ%40mail.gmail.com.

[j bayne]

I have to admit I don't know what txp is and I am guessing natives means you still have your kidneys?

To view this discussion on the web visit https://groups.google.com/d/msgid/pkdiet/AA1FF93D-36B7-459F-B08E-100DE4CEB548%40fastmail.co.uk.

[j bayne]

Thank you Anthony for your input. 

On Sun, 14 Nov 2021, 19:49 anthony...@fastmail.co.uk, <anthony...@fastmail.co.uk> wrote:

To view this discussion on the web visit https://groups.google.com/d/msgid/pkdiet/AA1FF93D-36B7-459F-B08E-100DE4CEB548%40fastmail.co.uk.

[anthony...@fastmail.co.uk]

Transplant abbreviation is TXP!

All the best Michael 

Cavalier de l'iPad:

 “ Every moment happens twice : Inside and Outside ..and they are two different histories ..! 

Carpe diem🌀

To view this discussion on the web visit https://groups.google.com/d/msgid/pkdiet/CACVc-mZ%2B6QVV%2BE9nUtdci%3D%3D4EM6ZnSHJg5CB2-kkFs%2BL2UH-8A%40mail.gmail.com.

[PKD Diane]

I remember Patrick. Once he had his natives removed, he had so much more energy!

Sent from my awesome Gold iPhone 12

~Diane

On Nov 14, 2021, at 3:39 AM, anthony...@fastmail.co.uk wrote:

Transplant abbreviation is TXP!

To view this discussion on the web visit https://groups.google.com/d/msgid/pkdiet/0332015E-004C-410E-BF31-5196861F8A6A%40fastmail.co.uk.

[j bayne]

Thx for sharing 

Jen

To view this discussion on the web visit https://groups.google.com/d/msgid/pkdiet/0332015E-004C-410E-BF31-5196861F8A6A%40fastmail.co.uk.

[Cristina Clark]

I think the gluten, sugar will make the belly big.  I eat lots of pineapple, blueberries, berries in general for snack . I don’t have a big belly. I wonder if the losartan helps too?! Don’t know . I take 25mg

Sent from my iPhone

On Nov 14, 2021, at 5:39 AM, anthony...@fastmail.co.uk wrote:

Transplant abbreviation is TXP!

To view this discussion on the web visit https://groups.google.com/d/msgid/pkdiet/0332015E-004C-410E-BF31-5196861F8A6A%40fastmail.co.uk.

[PKD Diane]

Do you have IBS also ?  It uses the monash university low fodmap diet

Sent from my awesome Gold iPhone 12

~Diane

On Nov 21, 2021, at 5:22 PM, Cristina Clark <crisc...@gmail.com> wrote:

I think the gluten, sugar will make the belly big.  I eat lots of pineapple, blueberries, berries in general for snack . I don’t have a big belly. I wonder if the losartan helps too?! Don’t know . I take 25mg

To view this discussion on the web visit https://groups.google.com/d/msgid/pkdiet/ACB03136-AE04-47CB-B0E7-5675D3DB0B30%40gmail.com.

[PKD Diane]

Losartan helps with blood pressure. 

I eat large amounts of watermelon and do not get a big belly. I eat alkaline mostly vegan

I am the oldest PKD 1 allele at the Mayo. 74 y/o

I realize we each have different diets but for me alkalinity works!  I am scheduled for a Doppler ultrasound of my renal arteries to be sure there

are no restrictions. My blood pressure’s all over the place, 50% of elderly women have this. 

Sent from my awesome Gold iPhone 12

~Diane

On Nov 22, 2021, at 7:22 AM, PKD Diane <pkd...@gmail.com> wrote:

Do you have IBS also ?  It uses the monash university low fodmap diet

To view this discussion on the web visit https://groups.google.com/d/msgid/pkdiet/CE685E3F-8964-481C-B798-3AAC9AA540FC%40gmail.com.

[j bayne]

Diane, you are an inspiration and I hope your bp improves.

Do you think blood type may play apart in different outcomes? 

My mum is a different blood type to me. mums version of pkd is different from me. 

I have polcystic disease in kidneys and liver bad version. Mum has it in kidneys and 3 other organs, her tummy is flatter. 

She opted for dialysis for last 13× yrs to avoid life long txp drugs. 

She is mostly plant based apart from the happy,  organic chicken eggs for protein. 

She is late 60s has a heart of a 20 year old according to heart tests a week ago, but is more tired. 

She does spin bike, weights and her kidneys have shrunk cause she is not using them on dialysis. Nurses are surprised no bp or other meds, tummy etc stupidly low bp.

Doctors removed to many parathyroid nodes so she has calcium issues.

What do you do for calcium? 

I NATO, vit d and k2

Do you have a searchable Polycystic organ food herb meds ... app, as it would be easier than using the book. I would pay for it

To view this discussion on the web visit https://groups.google.com/d/msgid/pkdiet/D66E05BD-CB9C-46FF-86C6-EED38651E9AC%40gmail.com.

[Diane Smith]

I have an app as well as a website

http://www.pkdiet.com/foods.php
Several websites

Alkaline diet

PLD

PKD

Pkdiet.com

PKD recipes

Hi, I came across this app called PKD Foods and I thought I would share it with you. It is a great resource for Polycystic Kidney Disease and Polycystic Liver Disease Foods. 
https://itunes.apple.com/us/app/alkaline-diet-foods/id689582946?mt=8

Sent from my awesome Gold iPhone 12

~Diane

On Nov 22, 2021, at 11:23 AM, j bayne <jba...@gmail.com> wrote:



To view this discussion on the web visit https://groups.google.com/d/msgid/pkdiet/CACVc-mY30jeOAct0mLg-qb2%2BZ66CcniTqRRtQEm-hXb6eanvHg%40mail.gmail.com.

[Diane Smith]

Your mom sounds great!

Sent from my awesome Gold iPhone 12

~Diane

On Nov 23, 2021, at 8:12 AM, Diane Smith <smith...@mac.com> wrote:

I have an app as well as a website

[Diane Smith]

I too had no blood pressure problems until 73.  Then it went crazy. 

There was a clinical trial using hibiscus to lower BP. It works for me!

123/85

I still have to watch my sodium..

Sent from my awesome Gold iPhone 12

~Diane

On Nov 23, 2021, at 8:13 AM, Diane Smith <smith...@mac.com> wrote:

Your mom sounds great!

[j bayne]

Wow thanks

To view this discussion on the web visit https://groups.google.com/d/msgid/pkdiet/2036F8D1-BAB3-4D6D-A0AC-CE2D888C115E%40mac.com.

[j bayne]

I don't have an apple ph :(

To view this discussion on the web visit https://groups.google.com/d/msgid/pkdiet/4996C5B7-3EC1-4F8F-BD38-16642D059624%40mac.com.

[Diane Smith]

Try the websites!

Diane

To view this discussion on the web visit https://groups.google.com/d/msgid/pkdiet/CACVc-maUrtFpF89yy8dfCdA7nHd8VwGoqdb%3DuNBXWYWL1psO5Q%40mail.gmail.com.

[Marie Louise]

 j bayne

i was interested to see you are using K2 with your vitamin D. I've been getting vitamin D in the dialysis machine 3x per week and after reading some eye opening literature on K2 and its importance in getting calcium to the right places in the body and reducing the likelihood of calcification of the arteries, and the importance of taking it if supplementing vitamin D, i asked my dialysis team if i am also getting K2 and they said no just vitamin D. For this reason i got myself a K2 supplement to take after dialysis, i hope it is as good as the literature promises.

Louise

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[j bayne]

I believe it will help and I have also started to have half serve of NATO which is like table spoon full and it's the highest k2 content food high.  

Popular in parts of Japan. Turns out they have significantly less bone breaks and osteoporosis in these areas. I believe that was more of an observational study. 

Still can't hurt.

Can I ask,  has you tummy shrunk? 

Mum's on dialysis for like 12 yrs and has cysts on kidney, liver pancreas and spleen.  

She is quiet tall but her tummy has shrunk. Trying to work out how that works.

To view this discussion on the web visit https://groups.google.com/d/msgid/pkdiet/CAO9n9y0neoxRon%3DKABofrcDsWMYoicO-U5UzRt8MYHHcvqOt-w%40mail.gmail.com.

[Diane Smith]

My tummy has shrunk but I had my ovaries and uterus out when I had ¾ of my liver out. 

http://www.pkdiet.com/diet_lotusroot.php

http://www.pkdiet.com/diet_vitK.php

Sent from my awesome Gold iPhone 12

~Diane

On Dec 3, 2021, at 4:42 AM, j bayne <jba...@gmail.com> wrote:



To view this discussion on the web visit https://groups.google.com/d/msgid/pkdiet/CACVc-mbv-kPAkC-9tA8QhqSfqzo7%3Dw7xWR8S_zY9A0yHnCeVFw%40mail.gmail.com.

[Diane Smith]

If your Mum has liver cysts on her pancreas maybe she has a different liver disease? 

Sent from my awesome Gold iPhone 12

~Diane

On Dec 3, 2021, at 8:45 AM, Diane Smith <smith...@mac.com> wrote:



[j bayne]

Doctors told her she has pkd, and the cysts on the other organs can happen but not common.

I got it from her and she got it from her mum.

She has different blood type, balanced hormones and is much taller, so the disease hasn't harmed her the same way.

Dads side of the family have dodgy hormones,  which is why i think my Liver is so huge. 

From https://www.kidney.org/atoz/content/polycystic

What other organs besides the kidney are affected by PKD?

PKD can affect other organs besides the kidney. People with PKD may have cysts in their liver, pancreas, spleen, ovaries, and large bowel. Cysts in these organs usually do not cause serious problems, but can in some people. PKD can also affect the brain or heart. If PKD affects the brain, it can cause an aneurysm. An aneurysm is a bulging blood vessel that can burst, resulting in a stroke or even death. If PKD affects the heart, the valves can become floppy, resulting in a heart murmur in some patients.

To view this discussion on the web visit https://groups.google.com/d/msgid/pkdiet/44F2301D-D897-44D7-A775-828F70DE66FE%40mac.com.

[Diane Smith]

https://www.mayoclinic.org/diseases-conditions/pancreatic-cysts/symptoms-causes/syc-20375993

Pancreatic cysts are typically found during imaging testing for another problem. Most aren't cancerous, and many don't cause symptoms. But some pancreatic cysts can be or can become cancerous.

Pancreatic cysts can be another problem.

 von Hippel-Lindau disease, a genetic disorder that can affect the pancreas and other organs.

Diane

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[Diane Smith]

https://www.mayoclinic.org/diseases-conditions/pancreatic-cysts/symptoms-causes/syc-20375993

On Dec 3, 2021, at 9:31 PM, j bayne <jba...@gmail.com> wrote:

To view this discussion on the web visit https://groups.google.com/d/msgid/pkdiet/CACVc-mZaTP5-mrguZA6GPRB_FWg5%2BfxABdMu3SdEtPKk9GzSOA%40mail.gmail.com.

[marielo...@gmail.com]

j bayne, 

oh i wish my tummy would shrink, it used to be lovely and slim but since i got severe edema and begun dialysis, my stomach looks like im having a baby and im quite upset about it. Another lady with PKD on dialysis also experiences the same so i wondered if it is usual to have a large belly on dialysis. My aunty who also had dialysis said i wont have a flat stomach anymore on dialysis. And i do 50 sit-ups every day and other stomach exercises but it has still expanded not shrunk..unfortunately.

Louise

[anthony...@fastmail.co.uk]

Louise

I have found the exception of tummies which have become less, yet usually ones natives remain the same size. 

I suspect, like myself, your tummy competes for space between large kidneys and digestion (including fluids) and muscles. I have never made the connection between dialysis and belly size as a reason. Might be wrong, yet I am not on dialysis now and a certain belly size is default to me!

I have monitored my kidney size yearly for fifteen years and they remain mainly the same. Now and then a cyst dissipates.

All the best Michael 

Cavalier de l'iPad:

 “ Every moment happens twice : Inside and Outside ..and they are two different histories ..! 

Carpe diem🌀

To view this discussion on the web visit https://groups.google.com/d/msgid/pkdiet/8e0f9be7-1e9c-4f9d-8075-d834ca2aacc6n%40googlegroups.com.

[marielo...@gmail.com]

Michael, 

I think it may be water retention in the torso..after all, when i came to dialysis with extreme Edema, the torso was shocking and it did not yet return to normal...

Louise

[marielo...@gmail.com]

J bayne,

how is your blood pressure since you began K2 ? was there any change? i ask as i just read the following:

"Vitamin K may increase blood plasma volume, which increases the thickness of your blood. If you suffer from high blood pressure or have naturally high blood plasma volume levels, vitamin K-2 supplementation may increase your risk of developing hypertension and cardiovascular disease due to an over-thickening of your blood. Consult your physician in regard to how much vitamin K is acceptable to take if you are on any medications for high blood pressure or blood-thinning medications."

the reason i am searching for any contra-indications is because since i started taking a number of new supplements a couple of weeks ago, namely grape seed extract, vitamin C, K2, co enzyme q10 and some Chinese herbs to help the kidney function, also i was given aspirin to thin the blood, my blood pressure has gone through the roof, so now im trying to figure out which is the culprit. I also found that people with high blood pressure should not take high doses of grape seed extract with vitamin C because the combination might worsen blood pressure. So i stopped that combination but it is still too high. I also found that aspirin weakens the bp reducing effects of Lasix and other bp meds. There are so many interactions which may adversely effect bp its mind boggling..

Louise

On Friday, 3 December 2021 at 15:42:30 UTC+1 jba...@gmail.com wrote:

[anthony...@fastmail.co.uk]

For best assimilation, I used vitamin D3. It absorbs, and quickly. I think you can now buy it outside of prescription. 

All the best Michael 

Cavalier de l'iPad:

 “ Every moment happens twice : Inside and Outside ..and they are two different histories ..! 

Carpe diem🌀

To view this discussion on the web visit https://groups.google.com/d/msgid/pkdiet/49bdb28f-f25c-44b3-826d-4a63020ee82en%40googlegroups.com.

[j bayne]

Hi Louise, 

Yes been taking it for ages kidneys have got bigger size I assumed that cause no to go up

I am on 300mg irebasartan daily now adding physiotens 20mg daily for last month, 40mg per month for octteotide for pld it works  

I spoke to liver transplant patient who has PKD and PLD and had really high diastolic like me and straight after transplant no back to low. It happened the same after resection but it grew back with the bp problem.

I also try to reduce cysts by slathering castor oil all overtummy and back where kidney are most prominent and then keep on all night and just wear old T-shirts and apply hottie heat packs and good for pain. 

Supposed to do as poultice for 30mins hour heated. And you can reuse the muslin cloth. Turns out removes adhesion too. 

I have recently experienced higher no and it could be the k2 as you suggested 

https://www.healthline.com/nutrition/vitamin-k1-vs-k2#TOC_TITLE_HDR_6

I also eat NATO sometimes.

I have terrible veins,  they are thin roll and just hard to canulate. Now I need to fix brain aneurysm I started taking 'caruso's vein away' see attached. On top of other before mentioned supps these contain grape seed.

You are also on dialysis for you have slot to juggle and issues with toxin overload.

I found it is low for last 2 days and trying to figure out how I did it. 

Will let you know when I work it out

To view this discussion on the web visit https://groups.google.com/d/msgid/pkdiet/49bdb28f-f25c-44b3-826d-4a63020ee82en%40googlegroups.com.

[j bayne]

Also drink along of lemon juice, mum usually has phenomenal bp stupid low on dialysis and eats green drinks salads egg and even eats avocado and mango sometimes. don't know how she gets away with it, she does eat loads of garlic makes a tonic amd her carer who has bad heart problems takes it it helps him.

I will get re cope and post for you to try

She also lives in Queensland Australia  hot and tropical. Bad for really hot days cause she has trouble regulating body temp,  but good because she can sweat out toxins.

She has actually been on dialysis for 15 years

And is now doing weight training at gym and is stronger ad a result

Maybe you can go to do warm steam room with a support person to make sure you stay 👍 if u live in a cold climate hiit training and intermittent fasting can help to 

[PKD Diane]

I find to get BP down I take hibiscus 🌺 tea

There was a report done on the clinical trials with. PKD and hibiscus!

Sent from my awesome Gold iPhone 12

~Diane

On Dec 15, 2021, at 1:31 AM, j bayne <jba...@gmail.com> wrote:



To view this discussion on the web visit https://groups.google.com/d/msgid/pkdiet/CACVc-mbG-JMvvjUz5TdhEbfiGPxaZn8WP_UYjYGdrOtaXv3JQA%40mail.gmail.com.

[Marie Louise]

j bayne, 

so you say your bp is high, how high is that ? mine is out of control on dialysis, after 2 hours it soars over 200 top reading. Bottom is generally around 100 at this time. A pulse pressure of 100 is really out but that is what it is. Then i am given super strong medications to lower it, and it does NOT lower, instead the bottom value increases to about 130. Its a disaster, i had to stay 2 hours this evening after dialysis until it went down. It does go down when i get off the machine. And after i eat it drops like 70 points to something like 135/95. So i react strangely on dialysis. Apparently most people see their bp drop on dialysis. I tried no K2 for the last 2 weeks in case that raises it, but it made no difference and since my calcium is so low i figured i may as well take the K2 at least 3x per week on the dialysis days when im getting a vitamin D infusion.

regarding bulging blood vessels, wow i never even heard of that but i wonder that could be a problem im having hindering blood flow on the machine raising bp. its strange, when i lift my arm over my head, my bp drops 30 points and when i hold the arm down by my side, it is high. 

@Diane, this pancreas cyst issue is interesting. My pancreas values are very raised, i wonder if cysts on the pancreas could cause this ?

Louise

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[Marie Louise]

Oh i'm now trying everything to get my BP down..i was drinking hibiscus tea religiously the last few months but changed recently to a herbal tea which is good for the kidney and indeed it worked to increase my urine from nearly stopped at 200 ml per day when i first started on dialysis to now over 2 litres per day. I don't know if stopping hibiscus was responsible for the out of control bp, i mean i still take my (Rilmenidine) bp meds, i even increased them, but i have resumed the hibiscus tea now having 3 (strong) cups of it per day, i also started beetroot juice - 250g of beetroot, also hawthorn tincture and garlic tablets. I only embarked on this aggressive lower my bp program a couple of days ago, so it's probably early days but it's pretty desperate. I don't know if K2 poses a problem or not. I take coenzyme Q 10 and and also vitamin E which are supposed to lower bp. Also, the b vitamin complex is supposed to help I believe.

@j bayne, that is incredible to hear how well your mum is doing.. 15 years on dialysis with a slim stomach, low bp, that is absolutely fantastic, so great to hear this.

Louise

To view this discussion on the web visit https://groups.google.com/d/msgid/pkdiet/B437A6DB-9A47-4537-B13E-5396F6CAECA1%40gmail.com.

[j bayne]

Hi Marie louise,

Mum can't wee at all anymore.  What do you take to increase urine output? 

Mum is pretty tall so she could house bigger organs, I think since she hasn't been using the kidneys they have shrunk.  They were bigger than mine.  

She is on fluid restriction and now keeps to them. The wee stopped after they put her on the peritoneal dialysis, they put her on 4 litres and was way to much fluid for the available space in her abdominal cavity and caused hernias too.  

She confessed that she has been naughty and has been eating a slice of cake or a couple of biscuits they give out at dialysis but the rest is super healthy  green smoothies, salads fruit porridge and bread, and some cooked veg and eggs,  she does love legumes but can't get enough in to cover the protein she needs cause of potassium content. Especially cause she continually get told to cut down cause she loves her greens cucumbers etc..  Also gets veg chow neon couple times a week for a treat. Makes cashew cheese,  coleslaw with variety of cabbage beets carrot and onion lemon olive oil sometimes tahini in dressing 

She has a medium potato usually with her salad and only eats two meals a day. And occasionally fasts.

Her no is crazy low she has to raise with ginger tea. 

The tonic I believe helps her to because of the crazy amount of garlic in it she doesn't get sick and if she feels a start of something, she takes it

For high bp need to lower it

- 25 - 30 cloves of garlic,  take outside paper off leave final layer

- 6 lemons all organic 

- Pure water 

Cut small, put everthing in skin pips put in pot. Pour filtered water in until you have it covering up to a quarter inch above garlic and lemon. Simmer until u see by bubbles, turn it off and drink half a cup or 100ml

For low bp

- 1 finger ginger slice thin and poor hot water over it in a mug.

  

Jen

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[j bayne]

Mine used to be 110/70

Now 120/95-150/100

To view this discussion on the web visit https://groups.google.com/d/msgid/pkdiet/CAO9n9y2%3DnnQBSu82fFuJ1JzA2NmCyoYMZhdk-rtXWT-Z28mtGQ%40mail.gmail.com.

[j bayne]

Hey Marie Louise

Mum has cyst on pancreas, spleen, liver if that helps,  what do you eat?  Do you exercise? 

Mum does Hiit Training, cycles inside and outside it can all contribute to better be,  I look 9 months pregnant but still manage to do 6-7000 steps a steps a day and usually in a rebounder for most of it,  kinder on my joints

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[j bayne]

This is not a flattering pic cause she was exercising, but it shows she is quite slim and only has a little pot gut from the cakes she had been eating

Please don't share this is to show how active she is

[j bayne]

Thanks Diane, I went out straight away a bought some hibiscus tea on your reccomendation.

To view this discussion on the web visit https://groups.google.com/d/msgid/pkdiet/B437A6DB-9A47-4537-B13E-5396F6CAECA1%40gmail.com.

[anthony...@fastmail.co.uk]

Dear Louise and J bayne

I paste a URL on kidney and BP. Although you may effect the BP from being higher it is, in PKD, a reflection of damage in the kidney which for the most part becomes irreversible. BP drugs are used to compensate the lost function, and there are literally hundreds of types now to use some of which will suite the individual whereas others may not. Matter of trial and error!

 https://turntobehealthy.com/how-do-the-kidneys-help-regulate-blood-pressure/?amp

External things higher BP, mainly anxiety. Stress, mental and phisical.

Salt.

Sugar’s.

Some other stimulants, various to the individual!  

All the best Michael 

Cavalier de l'iPad:

 “ Every moment happens twice : Inside and Outside ..and they are two different histories ..! 

Carpe diem🌀

To view this discussion on the web visit https://groups.google.com/d/msgid/pkdiet/CAO9n9y1Xm%2BB-CNkagq1Y5x5O3V82J3r%2BHnMBDa9e7Q9KghJ_jQ%40mail.gmail.com.

[marielo...@gmail.com]

Jen, 

Im using some herbs to increase the urine output: 

Dandelion Leaf (Taraxacum officinale)
Plantain Leaf (Plantago lanceolata)
Gravel Root (Eupatorium purpureum)
Cornsilk (Zea mays)

 Parsley Root & Leaf (Petroselinum crispum)

 Uva Ursi (Arctostaphylos uva-ursi)
 Nettles (Urtica dioica)


also

Juniper Berry
Cleavers Herb
Ho Shou Wu Root
Marshmallow Root

the hospital also have me on Lasix diuretic but that is def. not doing such a good job as the herbs. So your mum sounds like she is doing really well though i am surprised that she lost her urine on PD. I thought one lost it on hemo dialysis. Did she do hemo first before PD ? i was thinking to switch to PD because i assume my bp would not get so crazy raised on PD, though im not sure how it works with potassium removal as i do have a potassium problem as i eat  mainly fruit and salad with a piece of fish and cheese daily for the protein, as i was very protein deficient. I then take a potassium binder to lower my potassium levels. That is nice that patients get fed on dialysis. So she does in centre PD ? thats unusual isnt it ? i thought one does it at home with some 4x bag changes throughout the day, every day ?

Louise

[marielo...@gmail.com]

Michael, 

thank you for the link, this kidney blood pressure issue is hard to understand. Why does mine go UP when i take vessel dilating meds. Its supposed to decrease but the meds just don't seem to work for me.

Louise

[Marie Louise]

It seems that my bp rises when i take any bp meds, whether they be doctor prescribed or natural whole foods or supplements. I wonder if this could be my problem:

A new study explains that many people with high blood pressure1 actually have low renin function resulting in high blood pressure and that giving these medications makes them worse – even further elevating their high blood pressure. Doctors don’t measure for renin levels partly because the test is expensive and partly because they don’t really want to know. Since renin function is often low in individuals who consume too much salt or are diabetic, the numbers of individuals being recklessly injured by the standard practice of medicine is substantial.

from https://www.wellnessresources.com/news/why-blood-pressure-medication-often-raises-blood-pressure

i'm not quite sure what the solution is though..

Louise

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[Marie Louise]

omg i see its pretty complicated: 

The renin-angiotensin system or RAS regulates blood pressure and fluid balance in the body. When blood volume or sodium levels in the body are low, or blood potassium is high, cells in the kidney release the enzyme, renin. Renin converts angiotensinogen, which is produced in the liver, to the hormone angiotensin I. An enzyme known as ACE or angiotensin-converting enzyme found in the lungs metabolizes angiotensin I into angiotensin II. Angiotensin II causes blood vessels to constrict and blood pressure to increase. Angiotensin II stimulates the release of the hormone aldosterone in the adrenal glands, which causes the renal tubules to retain sodium and water and excrete potassium. Together, angiotensin II and aldosterone work to raise blood volume, blood pressure and sodium levels in the blood to restore the balance of sodium, potassium, and fluids. If the renin-angiotensin system becomes overactive, consistently high blood pressure results.

[Marie Louise]

Jen 

I have tried the garlic drink to lower bp but my body didn't seem to like it and I vomited it all out again.. so i'm not so keen to make that again.. I have no problem with a garlic capsule after my meal though, but it doesn't seem to be doing much ..

Louise

[j bayne]

Hi Marie Louise,

Mum did PD first hated it as previously mentioned and has been on hemp for 15 almost 16 years, no problem fistula and not on any meds apart from iron and calcium infusion injection due and the blood thinners for dialysis process. 

I have asked her to join the group. But she is overwhelmed with spam at the moment so I just ring, SMS or video chat with her at the moment.

Some other things that you could consider renting dialysis 

Mum can't cope with dialysis pump speed more than 280, usually does 270. 

She uses the largest kidney 280 in size as it removes move toxins. She said she can't do PDF but others in the unit find it better. 

Jen

To view this discussion on the web visit https://groups.google.com/d/msgid/pkdiet/bfad3780-ade6-4eac-ab57-c304d4e65d97n%40googlegroups.com.

[Marie Louise]

Jen, 

I don't understand a few things you wrote. Was your auto completion incorrecting some words ? hemp, PDF ?

Louise

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[Diane Smith]

dear Louise and Jane

I am getting an ultrasound of my renal arteries just to be sure there is no stricture. In older women 48% of them have a stricture of renal arteries. Do each of you read the items’sodium content  I try to keep mine below 110 mg.

Diane

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[j bayne]

Hi Louise, sorry was auto correcting it is short for the two kinds of dialysis Pd =peritoneal dialysis and hemo = hemodialysis. Mum referred to a pdf hemodialysis see li k below. 

The kidney x project also showcased a syemcell treatment they used on acute ICU dialysis patients to test aspects of the biokidney future function and patients thrived and got better clearance and improved up to 50% I will try and find the youtube video and send it

hemodialysis is to restore the intracellular and extracellular fluid environment that. is characteristic of normal kidney function. This is accomplished by the transport. of solutes such as urea from the blood into the dialysate and by the transport of. solutes such as bicarbonate from the dialysate into the blood (Figii

 https://www.researchgate.net/publication/47675142_Hemodialysis

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[vikram varma]

Hi,

Researching Enteric dialysis. Attaching some literature. Any body with any experience on this ? Please share 

Vikram 

https://youtu.be/ZXBn1ZruOyk

 

Sent from my iPhone

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[j bayne]

Hi Louise,

That's terrible I did the garlic tablets it did help but made me smell like garlic AI I stopped

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[Atlantis 007]

Happy Holidays Pkders/Plders,

Just wanted to comment on this front.......I have been experiencing bloating in my stomach area which I thought was a sugar/dairy intolerance. But then I started researching even more and I'm not sure what this bloating is.
Also I'm getting older and our digestion changes much as we age. I'm 44 going on 45 years of age. Relatively good health, no kidney issues other than my ADPKD.  BP normal, sugar normal level and cholesterol levels.
Vegan - vegetarian for years (over 25 years). I'm on no medications other than my essential mineral multivitamins. 
Can any perhaps shed some light on my bloating?

On 3:44AM, Wed, Dec 8, 2021 anthony...@fastmail.co.uk <anthony...@fastmail.co.uk wrote:

Louise

I have found the exception of tummies which have become less, yet usually ones natives remain the same size. 

I suspect, like myself, your tummy competes for space between large kidneys and digestion (including fluids) and muscles. I have never made the connection between dialysis and belly size as a reason. Might be wrong, yet I am not on dialysis now and a certain belly size is default to me!

I have monitored my kidney size yearly for fifteen years and they remain mainly the same. Now and then a cyst dissipates.

All the best Michael 

Cavalier de l'iPad:

 “ Every moment happens twice : Inside and Outside ..and they are two different histories ..! 

Carpe diem🌀

On 8 Dec 2021, at 12:23 am, marielo...@gmail.com <marielo...@gmail.com> wrote:

j bayne, 

oh i wish my tummy would shrink, it used to be lovely and slim but since i got severe edema and begun dialysis, my stomach looks like im having a baby and im quite upset about it. Another lady with PKD on dialysis also experiences the same so i wondered if it is usual to have a large belly on dialysis. My aunty who also had dialysis said i wont have a flat stomach anymore on dialysis. And i do 50 sit-ups every day and other stomach exercises but it has still expanded not shrunk..unfortunately.

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[PKD Diane]

The only thing that works consistently with me is hibiscus tea.

http://www.pkdiet.com/pdf/hibiscusTrial.pdf

I love garlic, but then I am Filipino. It is what I grew up on

I had fish and rice three times a day!!!

Sent from my awesome Gold iPhone 12

~Diane

On Dec 21, 2021, at 12:52 AM, j bayne <jba...@gmail.com> wrote:



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[PKD Diane]

I do not like Natto.  It is supposed to contain the highest percentage of ACE inhibitors naturally.

https://pubmed.ncbi.nlm.nih.gov/22040882/

http://www.pkdiet.com/diet_natto.php

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[marielo...@gmail.com]

Jen, 

so i am very curious to read that she now does PD because today the head of the hemo dialysis came to me because of my now completely out of control blood pressure on dialysis. On Monday the top level reached the dizzy never before seen heights of 274/ i was too dizzy to even ask what the lower value and pulse was. So she suggested i may be better off on PD as it wont be so strenuous on my circulatory system and heart. Since i can do this at home, i think it is a good idea. A few things im wondering though. Does PD effectively lower potassium levels ? and what happens if there is any edema ? luckily i have my urine back but still im wondering, surely PD can not remove excessive water if there is any excess can it ? Jen does your mum do the bag changing 4 x per day or the (night) PD machine ?

Louise

[marielo...@gmail.com]

Diane, 

the older women with a stricture of renal arteries, is that women with kidney disease or all older women ? strictures in arteries surely may cause complications with hemo dialysis ? i wonder that as i have horrific problems with hemo nowadays, my bp keeps rising through the roof..

regarding sodium, well i always avoided salt, i didn't add salt to any food for over 10 years as i was under the impression that salt raises blood pressure. I probably lost a lot of salt by running long distances and did not replenish it. I'd assume being in a hot country (Hawaii ?) may also cause more perspiration and hence more loss of sodium than in colder climate. Anyway, then i got a seizure due to low sodium levels..this ended up being what caused me to eventually have to start emergency dialysis, because the hospital were determined to correct my serum sodium to normal levels and gave me back to back saline infusions for a week, however, so much salt so suddenly caused me to get extreme Edema. I swelled up like a balloon, after the 7th consecutive saline infusion i started retaining all fluids and put on 20 kg in like 5 days, got water in the lungs, couldn't breathe, needed to be rushed back to the ER room on oxygen. That is when they put an emergency catheter in my neck and started dialysis. Interestingly that normalized my low sodium levels (which were at 114 where as is it 138 or 139 is normal) in the first week of dialysis and started hacking away at removing the excess fluid. It actually took a month or 2 to remove all the excess fluids i retained due to the salt infusions. And it took about 5 months on dialysis before i got my urine back.. . So Diane, what is your sodium level ? i had no idea what serious consequences too low sodium could have,  for me it ultimately caused my premature begin of dialysis.

Louise

[marielo...@gmail.com]

well i had rediculous bloating i was so shocked when i looked at my stomach in the mirror and it was due to fluid retention when my kidneys packed up. They say fluid loves to gather in the torso. and that was the most stubborn to remove. It took about 5 months of dialysis to remove this excess fluid in the torso which looked unbelievably bloated. Only once i got a good urine back for the last month, has the bloating in the torso subsided.

Jen, is your mum not bloated on PD with all the fluids in the belly btw ?

Louise

[j bayne]

Hi Marie Louise,

Mum is not on PD she is on hemodialysis and has been now for 16 years.  She hated PD and stopped her urine output , mum said she would send you a reply. Did you see my previous email about this and her dialysis pump speed 270-280 and kidney size 280? 

Mum doesn't eat any animal products besides the expensive organic, cruelty free eggs, these eggs ensure the hens are in good healthly, free of disease, happy,   have sunlight and given optimum nutrition  in order to get the best quality eggs.  It makes a difference in taste and quality. She needs this to help  top off her protein. Herhigh intake of green left veg etc.. Already gives her high potassium, so to many legumes can put her to far over. Though she does eat these in small amounts. She only uses celtic salt because it's mineral content. Letting a small small grain under tongue with a small glass of wTer can help with hydration. She also eats Tofu, organic soy milk.

Exercise, diet I believe play a big role.

I told her about you and forwarded her email and she said she would reply if you had questions, only her email account is overwhelmed with spam. So my take her a while to reply 

  Jen

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[Diane Smith]

Dear j bayne

Tell your mom I am with her about diet and exercise. 

Sent from my awesome Gold iPhone 12

~Diane

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[j bayne]

Hi Diane,

Will do.

What do you think about

https://www-dailymail-co-uk.cdn.ampproject.org/v/s/www.dailymail.co.uk/femail/article-10345879/amp/The-HRT-face-cream-claims-revive-skin.html?amp_gsa=1&amp_js_v=a6&usqp=mq331AQIKAGwASCAAgM%3D#amp_tf=From%20%251%24s&aoh=16406399018333&csi=0&referrer=https%3A%2F%2Fwww.google.com&ampshare=https%3A%2F%2Fwww.dailymail.co.uk%2Ffemail%2Farticle-10345879%2FThe-HRT-face-cream-claims-revive-skin.html

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[Diane Smith]

I don’t do any hormones because PLD.

Diane

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[jo arch]

Hi Diane and Michael, I seem to have gotten lost in the threads. Is there a link to a recommended way to fast for PKD? I’ve been going through the emails and haven’t been able to find it. 

Thank you! 

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[anthony...@fastmail.co.uk]

Intermittent fasting is something I do. Recently, as in the last year I have followed Ketone diet to loose fat by using it rather than carbohydrate’s. Ketosis is reached during fasting

https://youtu.be/lwCRjwDs1Ek

I reached a 101 kilos and that was my limit. So I decided to loose ten. Which is where I am now. Ordering new fit me trousers!

The video here was originally inspired by an old student of mine who reformed his vast overweight problem. I tried it with fasting and it works well. 

How it sits with PKD I am unsure. Weight regulation is good for all body systems, so?

There is only one other book on fasting and it is a bit yogic.

All the best Michael 

Cavalier de l'iPad:

 “ Every moment happens twice : Inside and Outside ..and they are two different histories ..! 

Carpe diem🌀

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[anthony...@fastmail.co.uk]

Keto not ketone

Cavalier de l'iPad:

 “ Every moment happens twice : Inside and Outside ..and they are two different histories ..! 

Carpe diem🌀

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[Diane Smith]

i use Vitamin K within shine

Diane

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[j bayne]

Wow thanks so much for sharing. Sent to my drs to see what they say and if we can get in Oz

Jen

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