Re: [External] [PolycysticLiverDisease] Abridged summary of polycysticliverdisease@googlegroups.com - 15 updates in 1 topic

[Ivers, Karen]

I have been following you, Diane, since I got diagnosed with PKD and PLD in 2004.  Because of you, I got connected with Dr. Torres and Dr. Nagorny (who performed my livervresection). I was part of the Tolvapton clinical trial and have been taking Jynarque until recently (liver enzymes went up).  I believe Dr. Torres is going to switch me to a new med that doesn't raise liver enzymes. I am thankful for coming across your groups and am happy to know you are doing so well.

I was never much of a meat eater, but I didn't become a vegetarian until I was in my early 40s.  I was diagnosed with pkd/pld when I was 42.  I am the only sibling out of four in my family who inherited the diseases. My cousins, however, all got pkd except one.  They have already had transplants.  My mom at my age (59), already had a transplant.  We all have (had) rapidly advancing PKD.  I believe Tolvapton and my diet has helped.  I began a low carb diet about a year and a half ago and my numbers have improved.  I have always been low salt and started to avoided caffeine and soy when I was diagnosed with pkd/pld. The only dairy product I current consume is cheese.  I no longer eat eggs and do not consume animal milk. 

I believe my diet has played a tremendous role in my battle with PKD and PLD.  I hope to outlive my mom and uncle, who both passed away from complications of the disease when they were 64.  

I realize people make their own decisions and decide what path they feel they can follow.  I can share what seems to be working for me, but I realize every body is different and not everyone is able or willing to let go of what foods they may crave.  Portion control may help in the balance of things.  Water and exercise help, too!  :-)

Karen

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From: polycysticl...@googlegroups.com <polycysticl...@googlegroups.com>
Sent: Tuesday, February 1, 2022 12:56:20 AM
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Subject: [External] [PolycysticLiverDisease] Abridged summary of polycysticl...@googlegroups.com - 15 updates in 1 topic

 

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• Diet - 15 Updates

Diet

Diane Smith <smith...@mac.com>: Jan 31 11:04AM -1000 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.. ...more

Mark de Buisseret <mde...@aol.com>: Jan 31 10:15PM 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 ...more

Diane Smith <smith...@mac.com>: Jan 31 12:21PM -1000 Thanks Mark. How long have you been On dialysis. Did you also get COVID ?   Sent from my awesome Blue iPhone 13   ~Diane     ...more

Diane Smith <smith...@mac.com>: Jan 31 12:30PM -1000 Mark   The ct scan shows all your blood vessels are also blocked     Sent from my awesome Blue iPhone 13   ~Diane     ...more

Diane Smith <smith...@mac.com>: Jan 31 12:30PM -1000 Did you get the vaccines?     Sent from my awesome Blue iPhone 13   ~Diane     ...more

Mark de Buisseret <mde...@aol.com>: Jan 31 10:41PM 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 ...more

Diane Smith <smith...@mac.com>: Jan 31 12:43PM -1000 Mark I feel so badly for you       Sent from my awesome Blue iPhone 13   ~Diane     ...more

Mark de Buisseret <mde...@aol.com>: Jan 31 10:55PM 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. ...more

Mark de Buisseret <mde...@aol.com>: Jan 31 11:02PM 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 ...more

Diane Smith <smith...@mac.com>: Jan 31 01:29PM -1000 Wow I did not know this. I’ve gotten an ultrasound without dyes. Usually I get a yearly mri again without dyes   Sent from my awesome Blue iPhone 13   ~Diane     ...more

Diane Smith <smith...@mac.com>: Jan 31 01:31PM -1000 Did the unblocking hurt?   Sent from my awesome Blue iPhone 13   ~Diane     ...more

Mark de Buisseret <mde...@aol.com>: Feb 01 01:09AM 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 ...more

Mark de Buisseret <mde...@aol.com>: Feb 01 01:10AM Not after the locals. Overall theres odd sensations by the blockages and about same level as dialysis sessions.   Sent by Mark de Buisseret Email: mde...@aol.com On Mon, 31 Jan 2022 at 23:31, ...more

Diane Smith <smith...@mac.com>: Jan 31 03:26PM -1000 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 ...more

Diane Smith <smith...@mac.com>: Jan 31 03:27PM -1000 So local anesthetic helps? That is great!   Sent from my awesome Blue iPhone 13   ~Diane     ...more

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[Mark de Buisseret]

The latest PKD diet is to have limited dairy but more if you are on phosphate binders,  an ordinary level of meat and cow milk. Do not drink alternatives as they tend to have other things on the banned list. Salt alternatives are banned. Balanced amount of veg but must be well cooked.  Watch for potassium.

Mark

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[Mark de Buisseret]

Eggs are fine limited to 5 a week max

Sent by Mark de Buisseret Email: mde...@aol.com

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[Diane Smith]

This is in the UK only on dialysis

Sent from my awesome Blue iPhone 13

~Diane

On Feb 1, 2022, at 7:58 AM, 'Mark de Buisseret' via PLD Polycystic Liver Disease <polycysticl...@googlegroups.com> wrote:

Eggs are fine limited to 5 a week max

To view this discussion on the web visit https://groups.google.com/d/msgid/polycysticliverdisease/1140319534.3682650.1643738311292%40mail.yahoo.com.

[Mark de Buisseret]

No.

Its for everyone approaching or on dialysis.  Stages 1 to 3 are normal balanced  diets.

Some dieticians show you what to do to breach diet rules as well.

M

Sent by Mark de Buisseret Email: mde...@aol.com

On Tue, 1 Feb 2022 at 20:23, 'Diane Smith' via PLD Polycystic Liver Disease

<polycysticl...@googlegroups.com> wrote:

https://groups.google.com/d/msgid/polycysticliverdisease/5BE36665-BC9F-444A-B372-99303044DE75%40mac.com

.