Diet

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Diane Smith

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Jan 31, 2022, 4:04:43 PM1/31/22
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I have been vegan since in my 20’s. I am now 74. Yet I am living longer than my school mates. One died, who is younger than I am, of complications from a Cabbage procedure for the heart..

I am the oldest PKD patient at the Mayo with PKD 1 allele, the more aggressive kind.

I had my ovaries uterus removed at the same time as my liver resection for PLD. I have eaten a diet low in hormones no dairy meat wheat. Also no over the counter medications like aspirin or Tylenol. No spinach, nightshade plants, and no foods that I have found to cause a rise in oxalates and purines in me.

Well I am here to tell you, it’s working!!
Occasionally I will eat a pouched egg or pancakes or French toast. I am wondering if any of you have noticed this? As I age I do get wobbly a bit. I have to eat an egg so my heart gets protein.

I’m wondering if this diet is for me alone or will it work for PKD? Please send your age and any feedback.

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~Diane

Mark de Buisseret

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Jan 31, 2022, 5:15:18 PM1/31/22
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Hi

Im on dialysis. 5 years ago the diet for renal patients in the uk changed to allow a boiled or poached egg or two. Meat is now encouraged as long as it white meat. They found renal patients lacked enough protein but for existing patients its very hard to reset your diets.

Im still about despite having to fight Covid Delta. in the UK for me the chances of survival was just 5%. Im still ill and have issues getting up,  walking and breathing.

Mark

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Diane Smith

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Jan 31, 2022, 5:21:35 PM1/31/22
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Thanks Mark. How long have you been On dialysis. Did you also get COVID ?


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~Diane


On Jan 31, 2022, at 12:15 PM, 'Mark de Buisseret' via PLD Polycystic Liver Disease <polycysticl...@googlegroups.com> wrote:

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Diane Smith

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Jan 31, 2022, 5:30:05 PM1/31/22
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Mark

The ct scan shows all your blood vessels are also blocked


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~Diane


On Jan 31, 2022, at 12:21 PM, Diane Smith <smith...@mac.com> wrote:

Thanks Mark. How long have you been On dialysis. Did you also get COVID ?

Diane Smith

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Jan 31, 2022, 5:30:48 PM1/31/22
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Did you get the vaccines?


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~Diane


On Jan 31, 2022, at 12:30 PM, 'Diane Smith' via PLD Polycystic Liver Disease <polycysticl...@googlegroups.com> wrote:

Mark

Mark de Buisseret

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Jan 31, 2022, 5:41:47 PM1/31/22
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Yes the Delta form. I spent over month on life support, had to learn to walk again, had several veins unblocked. I had pneumonia, stomach and kidney infections, gall bladder trouble and pleurisy at the same time. It meant four months in hospital and Im still nowhere near fixed.  My arm swelled up so much so that i couldnt use the entire arm and my fingers and thumbs had balloons of fluid. Hence the vein unblocking procedure.

Ive spent a decade on dialysis.


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On Mon, 31 Jan 2022 at 22:28, 'Diane Smith' via PLD Polycystic Liver Disease

Diane Smith

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Jan 31, 2022, 5:43:45 PM1/31/22
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Mark
I feel so badly for you



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~Diane


On Jan 31, 2022, at 12:41 PM, 'Mark de Buisseret' via PLD Polycystic Liver Disease <polycysticl...@googlegroups.com> wrote:

Yes the Delta form. I spent over month on life support, had to learn to walk again, had several veins unblocked. I had pneumonia, stomach and kidney infections, gall bladder trouble and pleurisy at the same time. It meant four months in hospital and Im still nowhere near fixed.  My arm swelled up so much so that i couldnt use the entire arm and my fingers and thumbs had balloons of fluid. Hence the vein unblocking procedure.

Mark de Buisseret

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Jan 31, 2022, 5:55:12 PM1/31/22
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I am in the process.  Im having Pfizer.

Theres been zero support helping my partner getting jabbed as we are both disabled. Many housebound people and their carers are still waiting help. My partner had a 5 week stay in hospital in another hospital in a different city. I was in Bristol. She was in Bath.

Meanwhile 70,000 nurses and doctors are refusing to have it even the vaccinators! I really do not understand antivaxers and how they can say its a hoax. I should know.


I wouldnt wish covid delta on anyone!


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On Mon, 31 Jan 2022 at 22:30, 'Diane Smith' via PLD Polycystic Liver Disease

Mark de Buisseret

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Jan 31, 2022, 6:03:04 PM1/31/22
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They show up with dyes in ct and ultrasound.

The unblocking is basically keyhole surgery. The tool was sent up the veins and pushed through the blockage a balloon inflated and then pulled back to the entrance pulling the blockage bits with it. Its done in a catheter lab under local and very common for dialysis patients.


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On Mon, 31 Jan 2022 at 22:30, 'Diane Smith' via PLD Polycystic Liver Disease

Diane Smith

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Jan 31, 2022, 6:29:49 PM1/31/22
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Wow I did not know this. I’ve gotten an ultrasound without dyes. Usually I get a yearly mri again without dyes


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~Diane


On Jan 31, 2022, at 1:03 PM, 'Mark de Buisseret' via PLD Polycystic Liver Disease <polycysticl...@googlegroups.com> wrote:

They show up with dyes in ct and ultrasound.

Diane Smith

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Jan 31, 2022, 6:31:44 PM1/31/22
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Did the unblocking hurt?


Sent from my awesome Blue iPhone 13

~Diane


On Jan 31, 2022, at 1:29 PM, 'Diane Smith' via PLD Polycystic Liver Disease <polycysticl...@googlegroups.com> wrote:

Wow I did not know this. I’ve gotten an ultrasound without dyes. Usually I get a yearly mri again without dyes

Mark de Buisseret

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Jan 31, 2022, 8:09:11 PM1/31/22
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They put on a different head and software so the ultrasound can be used as a doppler scanner. It can be used also to measure blood flow through a vessel over a set time frame. That point can be anywhere so you can measure at junctions, blockages etc. 



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On Mon, 31 Jan 2022 at 23:29, 'Diane Smith' via PLD Polycystic Liver Disease

Mark de Buisseret

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Jan 31, 2022, 8:10:59 PM1/31/22
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Not after the locals. Overall theres odd sensations by the blockages and about same level as dialysis sessions.


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On Mon, 31 Jan 2022 at 23:31, 'Diane Smith' via PLD Polycystic Liver Disease

Diane Smith

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Jan 31, 2022, 8:26:32 PM1/31/22
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Its a different Doppler ultrasound transducer or head. This Is what they use also to be sure your renal arteries are not kinked- a Doppler ultrasound of the renal arteries.


Sent from my awesome Blue iPhone 13

~Diane


On Jan 31, 2022, at 3:11 PM, 'Mark de Buisseret' via PLD Polycystic Liver Disease <polycysticl...@googlegroups.com> wrote:

Not after the locals. Overall theres odd sensations by the blockages and about same level as dialysis sessions.

Diane Smith

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Jan 31, 2022, 8:27:40 PM1/31/22
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So local anesthetic helps? That is great!


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~Diane


On Jan 31, 2022, at 3:26 PM, Diane Smith <smith...@mac.com> wrote:

Its a different Doppler ultrasound transducer or head. This Is what they use also to be sure your renal arteries are not kinked- a Doppler ultrasound of the renal arteries.

Marianne Pope

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Feb 1, 2022, 8:32:03 AM2/1/22
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Hi Diane
Haven’t been in touch as have been pretty healthy since my stint in hospital , Christmas before last.
I was very underweight having followed the diet and had a very extended liver.
A friend of mine is a naturapath. She read up on PLD and then gave me a few things to take , all natural and vitamins and I followed the Medical Medium , having celery juice every morning before any food.
We are all different but I have now put on weight (eat most things in moderation) know what my liver does not like! My liver has gone down a lot and I feel much fitter. I am 65 in May and feel very grateful that I am not suffering as much as others.
Hope you are well


Marianne
Www.varca.com

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> On 31 Jan 2022, at 21:04, 'Diane Smith' via PLD Polycystic Liver Disease <polycysticl...@googlegroups.com> wrote:
>
> I have been vegan since in my 20’s. I am now 74. Yet I am living longer than my school mates. One died, who is younger than I am, of complications from a Cabbage procedure for the heart..
> --
> You received this message because you are subscribed to the Google Groups "PLD Polycystic Liver Disease" group.
> To unsubscribe from this group and stop receiving emails from it, send an email to polycysticliverdi...@googlegroups.com.
> To view this discussion on the web visit https://groups.google.com/d/msgid/polycysticliverdisease/CA81EE91-2065-4E17-8342-7B9D61DC9BE3%40mac.com.

raw...@gmail.com

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Feb 2, 2022, 8:13:31 AM2/2/22
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Thanks for this thread.  

My name is Becky.  My twin and I both have PLD (and much milder PKD).  We are 57--both had liver resections--her's with Dr. Nagorney at Mayo (2014) and mine with Dr. Lin at George Washington Hospital. Dr. Lin did mine laparoscopically (2015) which meant much less scarring.  Despite liver resection,  my cysts continued growing.   I consulted with Mayo (both Torres and Nagorney) but was disappointed that none of their research has been around dietary interventions.  I distinctly remember a conversation with Dr. Torres in which I asked him about that and at the time it wasn't on his radar at all.  That seemed very odd to me since there was robust (even if anecdotal) information online about the PKD/PLD diet.  

I have been following an Ayurvedic diet for about 2 years that has really helped keep my cyst growth in check--this means greatly reduced animal fat, no wheat, no fermented foods, no caffeine, greatly reduced sugar and more natural sugars like honey, maple syrup (there are more specific dietary recommendations particular to body type).  Protein mostly comes from combining mung beans and basmati rice.  The Ayurvedic diet is designed to reduce stress on the liver and detoxify it so that is able to function better and, as a result, maladaptive growths like cysts are reduced.  

I have found less swelling and pressure in my liver area and the growth has slowed down significantly.  I am getting an MRI next month and will compare to growth from two years ago but I'm pretty sure it will be favorable results.   

Sending you all blessings.  becky

Diane Smith

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Feb 2, 2022, 1:59:50 PM2/2/22
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How nice that you both got a resection of your livers. Dr Torres has participated in the keto diet for PKD , but he has specifically told me NOT to lose any weight.


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~Diane


On Feb 2, 2022, at 3:13 AM, raw...@gmail.com <raw...@gmail.com> wrote:

Thanks for this thread.  
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Ivers, Karen

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Feb 2, 2022, 2:04:50 PM2/2/22
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As I recall, you were already at a healthy weight.  :-)    I am now, too, which has helped my BP.

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Diane Smith

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Feb 2, 2022, 2:09:18 PM2/2/22
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My weight goes between 105-111 pounds. I got a smart scale and I weigh each morning.  It tells me my BMI, my molecular imaging (bones), etc 

Diane


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~Diane


On Feb 2, 2022, at 9:04 AM, Ivers, Karen <kiv...@fullerton.edu> wrote:

 As I recall, you were already at a healthy weight.  :-)    I am now, too, which has helped my BP.

Ivers, Karen

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Feb 2, 2022, 2:15:41 PM2/2/22
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Interesting!

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Subject: [External] Re: [External] Re: [PolycysticLiverDisease] Re: Diet
 
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