Re: [PolycysticLiverDisease] Digest for polycysticliverdisease@googlegroups.com - 6 updates in 2 topics

[Stacey Kupczyn]

Hi!

May I please ask what a resection of the liver surgery entails and when/why you did it?

 I am 59 and have PKD and severe PLD. I have over 100 cysts on my liver and of course my kidneys are significantly enlarged. I've always had issues finding doctors providing correct treatment for my issues with my liver. They always said it was gi issues. My pattern is that within a year or two I start to vomit and cannot eat or drink. Three times I had the liver cysts drained. There was immediate relief after the needle was removed from the stomach. It would last different amounts of time. Since I had so many issues it was then it was recommended to get a liver dr. that specializes in this so I went to a world renown hospital. I started having my symptoms and did all the GI tests asked of me and vomited through them. The doctor refused to do anything about my situation. He said that the  interventional radiologists looked at by ultrasound/mri and said the cysts were not an issue - they would not consider draining them. The liver doctor agreed with them and would not perform surgery.  I didn't eat for seven months.  During this time, I reached out numerous times to relay my rapidly declining condition and had my gi dr and pcp reach out to them also. Whatever went in was vomited up. I dropped 74 lbs and was actually dying. I reached out to a distant cousin whose team  saw that there were two large cysts pushing on my stomach. So she asked her Chief surgeon to help me. Even he didn't believe me...he really focused on me having an eating disorder. My cousin insisted that he perform the surgery and he did it laparoscopic.He unroofed several cysts but found when he went in the cysts that had been previously drained were severely infected (septic). So my same day procedure ended up being a five day hospital stay with pumping me with lots of antibiotics.

So I slowly recovered and found an awesome team of doctors...FINALLY!!! I just did genetic testing that my nephrologist asked me to do.  The results indicate I don't actually have PKD. I am a rarity .My father, grandfather, and Aunt all had PKD but not PLD. Because of these results, I cannot start Tolvapton. There are other trials for another drug but I cannot take that medicine because there is no data on the impact on the liver. My nephrologist reached out to several other doctors and geneticists to try and obtain more information and is having my case further investigated. I was the only person out of 13 direct family and cousins that was diagnosed. My son has it and we are going to test my daughter. My kidneys are functioning at 50% which is relatively good at this point in my life. Liver is functioning fine but is so enlarged along with my kidneys that I may have to have a transplant. That is why I asked about the resection of the liver....in a very long winded way!!

If anyone has any advice or anything else they want to share...I'd appreciate it!!

Thank you!

Stacey

On Wed, Feb 2, 2022 at 2:55 AM <polycysticl...@googlegroups.com> wrote:

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• [External] [PolycysticLiverDisease] Abridged summary of polycysticl...@googlegroups.com - 15 updates in 1 topic - 5 Updates
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[External] [PolycysticLiverDisease] Abridged summary of polycysticl...@googlegroups.com - 15 updates in 1 topic

"Ivers, Karen" <kiv...@fullerton.edu>: Feb 01 05:49PM 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       Sent from my Verizon, Samsung Galaxy smartphone Get Outlook for Android<https://aka.ms/AAb9ysg> ________________________________ From: polycysticl...@googlegroups.com <polycysticl...@googlegroups.com> Sent: Tuesday, February 1, 2022 12:56:20 AM To: Abridged recipients <polycysticl...@googlegroups.com> Subject: [External] [PolycysticLiverDisease] Abridged summary of polycysticl...@googlegroups.com - 15 updates in 1 topic   External Email Use Caution and Confirm Sender     polycysticl...@googlegroups.com<https://nam10.safelinks.protection.outlook.com/?url=https%3A%2F%2Furldefense.com%2Fv3%2F__https%3A%2F%2Fgroups.google.com%2Fforum%2F%3Futm_source%3Ddigest%26utm_medium%3Demail*!forum*polycysticliverdisease*topics__%3BIy8v!!GF3VTAzAMGBM8A!nD5bHhwkG-MbMMESR5enQGZR2QNTGOM8iaZSdqxdI8j8XsAc0OUdDYPmR5vsh-5XchQ%24&data=04%7C01%7Ckivers%40fullerton.edu%7Cd3e3e3817d694ae6497308d9e5585 7ce%7C82c0b871335f4b5c9ed0a4a23565a79b%7C0%7C0%7C637792989864209163%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000&sdata=qLnaS%2BMBn9d9Sqkv4C%2Fv73f1lZ2yj48GkNRpQG%2F0MuM%3D&reserved=0> Google Groups<https://nam10.safelinks.protection.outlook.com/?url=https%3A%2F%2Furldefense.com%2Fv3%2F__https%3A%2F%2Fgroups.google.com%2Fforum%2F%3Futm_source%3Ddigest%26utm_medium%3Demail**A!overview__%3BLyM!!GF3VTAzAMGBM8A!nD5bHhwkG-MbMMESR5enQGZR2QNTGOM8iaZSdqxdI8j8XsAc0OUdDYPmR5vsdOXpqx4%24&data=04%7C01%7Ckivers%40fullerton.edu%7Cd3e3e3817d694ae6497308d9e55857ce%7C82c0b871335f4b5c9ed0a4a23565a79b%7C0%7C0%7C63779 2989864209163%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000&sdata=6ufKs2oD1f3uJ19O%2BYvn3wrTPTjoplkeDAHtaHMGe%2B8%3D&reserved=0> [http://www.google.com/images/icons/product/groups-32.png] <https://nam10.safelinks.protection.outlook.com/?url=https%3A%2F%2Furldefense.com%2Fv3%2F__https%3A%2F%2Fgroups.google.com%2Fforum%2F%3Futm_source%3Ddigest%26utm_medium%3Demail**A!overview__%3BLyM!!GF3VTAzAMGBM8A!nD5bHhwkG-MbMMESR5enQGZR2QNTGOM8iaZSdqxdI8j8XsAc0OUdDYPmR5vsdOXpqx4%24&data=04%7C01%7Ckivers%40fullerton.edu%7Cd3e3e3817d694ae6497308d9e55857ce%7C82c0b871335f4b5c9ed0a4a23565a79b%7C0%7C0%7C63779 2989864209163%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000&sdata=6ufKs2oD1f3uJ19O%2BYvn3wrTPTjoplkeDAHtaHMGe%2B8%3D&reserved=0> Today's topic summary View all topics<https://nam10.safelinks.protection.outlook.com/?url=https%3A%2F%2Furldefense.com%2Fv3%2F__https%3A%2F%2Fgroups.google.com%2Fforum%2F%3Futm_source%3Ddigest%26utm_medium%3Demail*!forum*polycysticliverdisease*topics__%3BIy8v!!GF3VTAzAMGBM8A!nD5bHhwkG-MbMMESR5enQGZR2QNTGOM8iaZSdqxdI8j8XsAc0OUdDYPmR5vsh-5XchQ%24&data=04%7C01%7Ckivers%40fullerton.edu%7Cd3e3e3817d694ae6497308d9e5585 7ce%7C82c0b871335f4b5c9ed0a4a23565a79b%7C0%7C0%7C637792989864209163%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000&sdata=qLnaS%2BMBn9d9Sqkv4C%2Fv73f1lZ2yj48GkNRpQG%2F0MuM%3D&reserved=0>   * Diet - 15 Updates   Diet <https://nam10.safelinks.protection.outlook.com/?url=https%3A%2F%2Furldefense.com%2Fv3%2F__http%3A%2F%2Fgroups.google.com%2Fgroup%2Fpolycysticliverdisease%2Ft%2F612d65feb1d2ee69%3Futm_source%3Ddigest%26utm_medium%3Demail__%3B!!GF3VTAzAMGBM8A!nD5bHhwkG-MbMMESR5enQGZR2QNTGOM8iaZSdqxdI8j8XsAc0OUdDYPmR5vsv-D1kOU%24&data=04%7C01%7Ckivers%40fullerton.edu%7Cd3e3e3817d694ae6497308d9e 55857ce%7C82c0b871335f4b5c9ed0a4a23565a79b%7C0%7C0%7C637792989864209163%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000&sdata=Hswf%2Bea7bDZNJkoBNCYPBTAJT4N50NqidbHZb3z%2B7ko%3D&reserved=0> 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<https://nam10.safelinks.protection.outlook.com/?url=https%3A%2F%2Furldefense.com%2Fv3%2F__http%3A%2F%2Fgroups.google.com%2Fgroup%2Fpolycysticliverdisease%2Fmsg%2F252cb61f300da%3Futm_source%3Ddigest%26utm_medium%3Demail__%3B!!GF3VTAzAMGBM8A!nD5bHhwkG-MbMMESR5enQGZR2QNTGOM8iaZSdqxdI8j8XsAc0OUdDYPmR5vszUKSr5A%24&data=04%7C01%7Ckivers%40fullerton.edu%7Cd3e3e3817d694ae6497308d9e5585 7ce%7C82c0b871335f4b5c9ed0a4a23565a79b%7C0%7C0%7C637792989864209163%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000&sdata=wDcPMFU3%2F2Oe4AdgIsFStV7QqAsUNZMZABnSnahXMdc%3D&reserved=0> 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<https://nam10.safelinks.protection.outlook.com/?url=https%3A%2F%2Furldefense.com%2Fv3%2F__http%3A%2F%2Fgroups.google.com%2Fgroup%2Fpolycysticliverdisease%2Fmsg%2F256a579cc7177%3Futm_source%3Ddigest%26utm_medium%3Demail__%3B!!GF3VTAzAMGBM8A!nD5bHhwkG-MbMMESR5enQGZR2QNTGOM8iaZSdqxdI8j8XsAc0OUdDYPmR5vsHlMPGE8%24&data=04%7C01%7Ckivers%40fullerton.edu%7Cd3e3e3817d694ae6497308d9e5585 7ce%7C82c0b871335f4b5c9ed0a4a23565a79b%7C0%7C0%7C637792989864209163%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000&sdata=kMtpvwVN2wBhWk1mX%2B8XxwxNDuZDhojUSyLqPwv0NQA%3D&reserved=0> 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<https://nam10.safelinks.protection.outlook.com/?url=https%3A%2F%2Furldefense.com%2Fv3%2F__http%3A%2F%2Fgroups.google.com%2Fgroup%2Fpolycysticliverdisease%2Fmsg%2F256fd4acd1290%3Futm_source%3Ddigest%26utm_medium%3Demail__%3B!!GF3VTAzAMGBM8A!nD5bHhwkG-MbMMESR5enQGZR2QNTGOM8iaZSdqxdI8j8XsAc0OUdDYPmR5vstfvJcbo%24&data=04%7C01%7Ckivers%40fullerton.edu%7Cd3e3e3817d694ae6497308d9e55 857ce%7C82c0b871335f4b5c9ed0a4a23565a79b%7C0%7C0%7C637792989864209163%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000&sdata=Nh8%2B27FyOSswHAa8lrm%2BE4Oh8auopRqBwHQmUbhYKPY%3D&reserved=0> 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<https://nam10.safelinks.protection.outlook.com/?url=https%3A%2F%2Furldefense.com%2Fv3%2F__http%3A%2F%2Fgroups.google.com%2Fgroup%2Fpolycysticliverdisease%2Fmsg%2F257740fd2e16c%3Futm_source%3Ddigest%26utm_medium%3Demail__%3B!!GF3VTAzAMGBM8A!nD5bHhwkG-MbMMESR5enQGZR2QNTGOM8iaZSdqxdI8j8XsAc0OUdDYPmR5vsiE3CCRQ%24&data=04%7C01%7Ckivers%40fullerton.edu%7Cd3e3e3817d694ae6497308d9e55857c e%7C82c0b871335f4b5c9ed0a4a23565a79b%7C0%7C0%7C637792989864209163%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000&sdata=a041EYAcAGzxmHYf08y1K11JjGIuaXPcjKRL99vDyCA%3D&reserved=0> Diane Smith <smith...@mac.com>: Jan 31 12:30PM -1000   Did you get the vaccines?     Sent from my awesome Blue iPhone 13   ~Diane     ...more<https://nam10.safelinks.protection.outlook.com/?url=https%3A%2F%2Furldefense.com%2Fv3%2F__http%3A%2F%2Fgroups.google.com%2Fgroup%2Fpolycysticliverdisease%2Fmsg%2F2577deb8a4516%3Futm_source%3Ddigest%26utm_medium%3Demail__%3B!!GF3VTAzAMGBM8A!nD5bHhwkG-MbMMESR5enQGZR2QNTGOM8iaZSdqxdI8j8XsAc0OUdDYPmR5vsAt9DiY0%24&data=04%7C01%7Ckivers%40fullerton.edu%7Cd3e3e3817d694ae6497308d9e5585 7ce%7C82c0b871335f4b5c9ed0a4a23565a79b%7C0%7C0%7C637792989864209163%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000&sdata=ltLnrkNf4NgdjqwMw6ZoRx2NiJQ38hR8zzKavCc%2Bp1I%3D&reserved=0> 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<https://nam10.safelinks.protection.outlook.com/?url=https%3A%2F%2Furldefense.com%2Fv3%2F__http%3A%2F%2Fgroups.google.com%2Fgroup%2Fpolycysticliverdisease%2Fmsg%2F258177e5a1c23%3Futm_source%3Ddigest%26utm_medium%3Demail__%3B!!GF3VTAzAMGBM8A!nD5bHhwkG-MbMMESR5enQGZR2QNTGOM8iaZSdqxdI8j8XsAc0OUdDYPmR5vso5FSxuE%24&data=04%7C01%7Ckivers%40fullerton.edu%7Cd3e3e3817d694ae6497308d9e5585 7ce%7C82c0b871335f4b5c9ed0a4a23565a79b%7C0%7C0%7C637792989864209163%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000&sdata=4Qt9RjxGSEvY%2BLZyWiGXsx5iuWg16471IPJIrnzs3ZM%3D&reserved=0> 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<https://nam10.safelinks.protection.outlook.com/?url=https%3A%2F%2Furldefense.com%2Fv3%2F__http%3A%2F%2Fgroups.google.com%2Fgroup%2Fpolycysticliverdisease%2Fmsg%2F25832f51b8ddf%3Futm_source%3Ddigest%26utm_medium%3Demail__%3B!!GF3VTAzAMGBM8A!nD5bHhwkG-MbMMESR5enQGZR2QNTGOM8iaZSdqxdI8j8XsAc0OUdDYPmR5vsh2eqbi4%24&data=04%7C01%7Ckivers%40fullerton.edu%7Cd3e3e3817d694ae6497308d9e5585 7ce%7C82c0b871335f4b5c9ed0a4a23565a79b%7C0%7C0%7C637792989864209163%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000&sdata=33dWBXMWPDcJq1xZ%2FhvOa5rBbtnyDsZPuaxksCLzHPs%3D&reserved=0> 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<https://nam10.safelinks.protection.outlook.com/?url=https%3A%2F%2Furldefense.com%2Fv3%2F__http%3A%2F%2Fgroups.google.com%2Fgroup%2Fpolycysticliverdisease%2Fmsg%2F258d2c6240c4a%3Futm_source%3Ddigest%26utm_medium%3Demail__%3B!!GF3VTAzAMGBM8A!nD5bHhwkG-MbMMESR5enQGZR2QNTGOM8iaZSdqxdI8j8XsAc0OUdDYPmR5vsn88uxSQ%24&data=04%7C01%7Ckivers%40fullerton.edu%7Cd3e3e3817d694ae6497308d9e55857c e%7C82c0b871335f4b5c9ed0a4a23565a79b%7C0%7C0%7C637792989864209163%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000&sdata=Dy5y6IO271aG6AKvMF6dLo2JKyaXraBHHawvxV0ikh4%3D&reserved=0> 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<https://nam10.safelinks.protection.outlook.com/?url=https%3A%2F%2Furldefense.com%2Fv3%2F__http%3A%2F%2Fgroups.google.com%2Fgroup%2Fpolycysticliverdisease%2Fmsg%2F25940c9486bdb%3Futm_source%3Ddigest%26utm_medium%3Demail__%3B!!GF3VTAzAMGBM8A!nD5bHhwkG-MbMMESR5enQGZR2QNTGOM8iaZSdqxdI8j8XsAc0OUdDYPmR5vswssDOdA%24&data=04%7C01%7Ckivers%40fullerton.edu%7Cd3e3e3817d694ae6497308d9e5585 7ce%7C82c0b871335f4b5c9ed0a4a23565a79b%7C0%7C0%7C637792989864209163%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000&sdata=TjFsJIDYc0xK9QMMQambDJDQsRtHTWG8ujF%2BeknTgeo%3D&reserved=0> 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<https://nam10.safelinks.protection.outlook.com/?url=https%3A%2F%2Furldefense.com%2Fv3%2F__http%3A%2F%2Fgroups.google.com%2Fgroup%2Fpolycysticliverdisease%2Fmsg%2F25ab660513c4d%3Futm_source%3Ddigest%26utm_medium%3Demail__%3B!!GF3VTAzAMGBM8A!nD5bHhwkG-MbMMESR5enQGZR2QNTGOM8iaZSdqxdI8j8XsAc0OUdDYPmR5vs9Iw1HGA%24&data=04%7C01%7Ckivers%40fullerton.edu%7Cd3e3e3817d694ae6497308d 9e55857ce%7C82c0b871335f4b5c9ed0a4a23565a79b%7C0%7C0%7C637792989864209163%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000&sdata=%2BAjX0uYYJI3%2B3hL17o%2F1gE736g1Vd%2Bvl4vsijxWdcWo%3D&reserved=0> Diane Smith <smith...@mac.com>: Jan 31 01:31PM -1000   Did the unblocking hurt?   Sent from my awesome Blue iPhone 13   ~Diane     ...more<https://nam10.safelinks.protection.outlook.com/?url=https%3A%2F%2Furldefense.com%2Fv3%2F__http%3A%2F%2Fgroups.google.com%2Fgroup%2Fpolycysticliverdisease%2Fmsg%2F25ad125fe62de%3Futm_source%3Ddigest%26utm_medium%3Demail__%3B!!GF3VTAzAMGBM8A!nD5bHhwkG-MbMMESR5enQGZR2QNTGOM8iaZSdqxdI8j8XsAc0OUdDYPmR5vs7SusJgY%24&data=04%7C01%7Ckivers%40fullerton.edu%7Cd3e3e3817d694ae6497308d9e55 857ce%7C82c0b871335f4b5c9ed0a4a23565a79b%7C0%7C0%7C637792989864364677%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000&sdata=2oNZhuiOnXX%2FnSA41HErESRG%2BdQL4aWXuy2nHBRJxc4%3D&reserved=0> 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<https://nam10.safelinks.protection.outlook.com/?url=https%3A%2F%2Furldefense.com%2Fv3%2F__http%3A%2F%2Fgroups.google.com%2Fgroup%2Fpolycysticliverdisease%2Fmsg%2F26022a184d19f%3Futm_source%3Ddigest%26utm_medium%3Demail__%3B!!GF3VTAzAMGBM8A!nD5bHhwkG-MbMMESR5enQGZR2QNTGOM8iaZSdqxdI8j8XsAc0OUdDYPmR5vsec9MAPM%24&data=04%7C01%7Ckivers%40fullerton.edu%7Cd3e3e3817d694ae6497308d9e55857c e%7C82c0b871335f4b5c9ed0a4a23565a79b%7C0%7C0%7C637792989864364677%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000&sdata=F8D572ZZb6X4UqSz2bIq2ASeUQnHRwdRsy3t0Q9pZMo%3D&reserved=0> 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,

Mark de Buisseret <mde...@aol.com>: Feb 01 05:56PM 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   Sent by Mark de Buisseret Email: mde...@aol.com On Tue, 1 Feb 2022 at 17:49, Ivers, Karen<kiv...@fullerton.edu> wrote: 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     Sent from my Verizon, Samsung Galaxy smartphone Get Outlook for AndroidFrom: polycysticl...@googlegroups.com <polycysticl...@googlegroups.com> Sent: Tuesday, February 1, 2022 12:56:20 AM To: Abridged recipients <polycysticl...@googlegroups.com> Subject: [External] [PolycysticLiverDisease] Abridged summary of polycysticl...@googlegroups.com - 15 updates in 1 topic  | External Email Use Caution and Confirm Sender |           | polycysticl...@googlegroups.com | Google Groups | |   Today's topic summary View all topics - 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 |   Back to top | You received this digest because you're subscribed to updates for this group. You can change your settings on thegroup membership page. To unsubscribe from this group and stop receiving emails from it send an email topolycysticliverd...@googlegroups.com. |       -- 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/BYAPR08MB47893106A14B59B488E75194C1269%40BYAPR08MB4789.namprd08.prod.outlook.com.

Mark de Buisseret <mde...@aol.com>: Feb 01 05:58PM Eggs are fine limited to 5 a week max   Sent by Mark de Buisseret Email: mde...@aol.com On Tue, 1 Feb 2022 at 17:56, 'Mark de Buisseret' via PLD Polycystic Liver Disease<polycysticl...@googlegroups.com> wrote: 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   Sent by Mark de Buisseret Email: mde...@aol.com On Tue, 1 Feb 2022 at 17:49, Ivers, Karen<kiv...@fullerton.edu> wrote: 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     Sent from my Verizon, Samsung Galaxy smartphone Get Outlook for AndroidFrom: polycysticl...@googlegroups.com <polycysticl...@googlegroups.com> Sent: Tuesday, February 1, 2022 12:56:20 AM To: Abridged recipients <polycysticl...@googlegroups.com> Subject: [External] [PolycysticLiverDisease] Abridged summary of polycysticl...@googlegroups.com - 15 updates in 1 topic  | External Email Use Caution and Confirm Sender |           | polycysticl...@googlegroups.com | Google Groups | |   Today's topic summary View all topics - 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 |   Back to top | You received this digest because you're subscribed to updates for this group. You can change your settings on thegroup membership page. To unsubscribe from this group and stop receiving emails from it send an email topolycysticliverd...@googlegroups.com. |       -- 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/BYAPR08MB47893106A14B59B488E75194C1269%40BYAPR08MB4789.namprd08.prod.outlook.com.     -- 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/1719472847.3685198.1643738208047%40mail.yahoo.com.

Diane Smith <smith...@mac.com>: Feb 01 10:23AM -1000 This is in the UK only on dialysis   Sent from my awesome Blue iPhone 13   ~Diane

Mark de Buisseret <mde...@aol.com>: Feb 01 08:33PM 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: 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   Sent by Mark de Buisseret Email: mde...@aol.com On Tue, 1 Feb 2022 at 17:56, 'Mark de Buisseret' via PLD Polycystic Liver Disease<polycysticl...@googlegroups.com> wrote: 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   Sent by Mark de Buisseret Email: mde...@aol.com On Tue, 1 Feb 2022 at 17:49, Ivers, Karen<kiv...@fullerton.edu> wrote: 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     Sent from my Verizon, Samsung Galaxy smartphone Get Outlook for AndroidFrom: polycysticl...@googlegroups.com <polycysticl...@googlegroups.com> Sent: Tuesday, February 1, 2022 12:56:20 AM To: Abridged recipients <polycysticl...@googlegroups.com> Subject: [External] [PolycysticLiverDisease] Abridged summary of polycysticl...@googlegroups.com - 15 updates in 1 topic  | External Email Use Caution and Confirm Sender |           | polycysticl...@googlegroups.com | Google Groups | |   Today's topic summary View all topics - 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 |   Back to top | You received this digest because you're subscribed to updates for this group. You can change your settings on thegroup membership page. To unsubscribe from this group and stop receiving emails from it send an email topolycysticliverd...@googlegroups.com. |       -- 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/BYAPR08MB47893106A14B59B488E75194C1269%40BYAPR08MB4789.namprd08.prod.outlook.com.     -- 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/1719472847.3685198.1643738208047%40mail.yahoo.com.     -- 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/1140319534.3682650.1643738311292%40mail.yahoo.com.       -- 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/5BE36665-BC9F-444A-B372-99303044DE75%40mac.com.

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Diet

Marianne Pope <marian...@gmail.com>: Feb 01 01:31PM 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   Sent from my iPhone

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[Diane Smith]

I am Diane. I had a liver resection when I was 50. I am now 74 the oldest PKD patient from the mayo   My story is here:

http://www.polycysticliverdisease.com/html/diane.html

Sent from my awesome Blue iPhone 13

~Diane

On Feb 16, 2022, at 6:54 PM, Stacey Kupczyn <staceyj...@gmail.com> wrote:



To view this discussion on the web visit https://groups.google.com/d/msgid/polycysticliverdisease/CAG8RO3%3DddXVvbxpSRoX2yQyMfeu6iqa9OupckM5CCyeXOcGnxg%40mail.gmail.com.

[Susan Hurley-Glowa]

Hi Stacey,

I can’t offer you any concrete help, but I can offer you my deepest sympathy for what you have been going through. I am so lucky that my PLD isn’t active. It is so frustrating to read that the doctors weren’t listening to you. I hope that others on this list can give you good advice, and that doctors can find effective ways to help!

Best Wishes,

Susan

To view this discussion on the web visit https://groups.google.com/d/msgid/polycysticliverdisease/CAG8RO3%3DddXVvbxpSRoX2yQyMfeu6iqa9OupckM5CCyeXOcGnxg%40mail.gmail.com.

Susan Hurley-Glowa

shurle...@gmail.com

Author of Songs for Cabo Verde: Norberto Tavares’s Musical Visions for a New Republic (Eastman/Rochester Studies in Ethnomusicology, 2021)

[Diane Smith]

Dear Stacey Jeanne

Do you write music? How wonderful!

Sent from my awesome Blue iPhone 13

~Diane

On Feb 17, 2022, at 4:35 AM, Susan Hurley-Glowa <shurle...@gmail.com> wrote:

Hi Stacey,

To view this discussion on the web visit https://groups.google.com/d/msgid/polycysticliverdisease/7BBD73C4-1B1D-40B8-B1D3-123FAD4116E4%40gmail.com.

[zoe shadesofgreeninc.net]

Aloha Diane,

Did you get my email I sent to you yesterday.

Glad to see you pop up on my email.

Lmk

Love,

Zoe🌺

Sent from my iPhone

On Feb 17, 2022, at 8:29 AM, 'Diane Smith' via PLD Polycystic Liver Disease <polycysticl...@googlegroups.com> wrote:

 Dear Stacey Jeanne

To view this discussion on the web visit https://groups.google.com/d/msgid/polycysticliverdisease/07EB1A8F-3493-4338-8B3C-867E035AED81%40mac.com.

[Diane Smith]

Yes I got it Zoe   I am so happy this day from your email. I think someone has declared today , a Be Nice to Diane Day.    

I love today because it is working a near veg diet and I had a bilateral removal of my fallowing tubes and uterus at the same time as my liver resection at the Mayo. Liver cysts have hormone receptors that is why many of the avoid foods contain hormones (like soy).  See 

www.polycysticliverdisease.com › pdf › EstrogenBiliaryTree

http://www.polycysticliverdisease.com/pdf/electronmscp.pdf

Try the website: www.polycysticliverdisease.com

Sent from my awesome Blue iPhone 13

~Diane

[Diane Smith]

Yes yes yes!!!

Sent from my awesome Blue iPhone 13

~Diane

On Feb 17, 2022, at 9:04 AM, Diane Smith <smith...@mac.com> wrote:

Yes I got it Zoe   I am so happy this day from your email. I think someone has declared today , a Be Nice to Diane Day.