Re: [PolycysticLiverDisease] Digest for polycysticliverdisease@googlegroups.com - 5 updates in 1 topic

[Stacey Kupczyn]

Thanks Diane and Susan for your thoughts! I appreciate it! 

Stacey

On Fri, Feb 18, 2022 at 2:55 AM <polycysticl...@googlegroups.com> wrote:

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• Digest for polycysticl...@googlegroups.com - 6 updates in 2 topics - 5 Updates

Digest for polycysticl...@googlegroups.com - 6 updates in 2 topics

Susan Hurley-Glowa <shurle...@gmail.com>: Feb 17 08:34AM -0600 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   > 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 <mailto:polycysticliverdi...@googlegroups.com>. > To view this discussion on the web visit https://groups.google.com/d/msgid/polycysticliverdisease/CAG8RO3%3DddXVvbxpSRoX2yQyMfeu6iqa9OupckM5CCyeXOcGnxg%40mail.gmail.com <https://groups.google.com/d/msgid/polycysticliverdisease/CAG8RO3%3DddXVvbxpSRoX2yQyMfeu6iqa9OupckM5CCyeXOcGnxg%40mail.gmail.com?utm_medium=email&utm_source=footer>.   Susan Hurley-Glowa shurle...@gmail.com   Author of Songs for Cabo Verde: Norberto Tavares’s Musical Visions for a New Republic <https://boydellandbrewer.com/9781648250217/songs-for-cabo-verde/> (Eastman/Rochester Studies in Ethnomusicology, 2021)

Diane Smith <smith...@mac.com>: Feb 17 08:29AM -1000 Dear Stacey Jeanne   Do you write music? How wonderful!       Sent from my awesome Blue iPhone 13   ~Diane

zoe shadesofgreeninc.net <z...@shadesofgreeninc.net>: Feb 17 06:32PM 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   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,   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   On Feb 16, 2022, at 6:13 PM, Stacey Kupczyn <staceyj...@gmail.com<mailto:staceyj...@gmail.com>> wrote:   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<mailto:polycysticl...@googlegroups.com>> wrote: polycysticl...@googlegroups.com<https://groups.google.com/forum/?utm_source=digest&utm_medium=email#!forum/polycysticliverdisease/topics> Google Groups<https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!overview> [http://www.google.com/images/icons/product/groups-32.png] <https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!overview> Topic digest View all topics<https://groups.google.com/forum/?utm_source=digest&utm_medium=email#!forum/polycysticliverdisease/topics>   * [External] [PolycysticLiverDisease] Abridged summary of polycysticl...@googlegroups.com - 15 updates in 1 topic<x-msg://19/#m_-8589128686487268315_group_thread_0> - 5 Updates * Diet<x-msg://19/#m_-8589128686487268315_group_thread_1> - 1 Update   [External] [PolycysticLiverDisease] Abridged summary of polycysticl...@googlegroups.com - 15 updates in 1 topic <http://groups.google.com/group/polycysticliverdisease/t/700a11f160e1c341?utm_source=digest&utm_medium=email> "Ivers, Karen" <kiv...@fullerton.edu<mailto: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<mailto:polycysticl...@googlegroups.com> <polycysticl...@googlegroups.com<mailto:polycysticl...@googlegroups.com>> Sent: Tuesday, February 1, 2022 12:56:20 AM To: Abridged recipients <polycysticl...@googlegroups.com<mailto:polycysticl...@googlegroups.com>> Subject: [External] [PolycysticLiverDisease] Abridged summary of polycysticl...@googlegroups.com<mailto:polycysticl...@googlegroups.com> - 15 updates in 1 topic   External Email Use Caution and Confirm Sender     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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<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<mailto: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

Diane Smith <smith...@mac.com>: Feb 17 09:04AM -1000 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 <smith...@mac.com>: Feb 17 09:05AM -1000 Yes yes yes!!!   Sent from my awesome Blue iPhone 13   ~Diane

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