Hi All

[Marie Ursitti]

Hi All - I don't know how many follow this group anymore or if it is still running.  If you are, please let me know.  Not sure if any of you heard, but Diane Smith the  founder of this group, passed away on Wednesday.  She went peacefully in her sleep.

As you all must know if you knew Diane, she was a beautiful person who cared deeply for others.  This group was one of the most important things in her life.  I first met Diane when I was 27 years old, almost 30 years ago.  She remained my dear friend this whole time.  She helped me find my way to the Mayo Clinic where I met the best doctors to help me with my illness.  I am forever grateful.  She saved my life and will always have a special place in my heart. 

I hope this email reaches some of you.  I don't get notifications anymore from this group, not sure why, but to whoever this reaches and is still fighting the fight with PKD and PLD,  I wish you good health.

Take care - Marie Ursitti

[zoe shadesofgreeninc.net]

Marie, we’ve spoken, but wanted to let you know I received this. 

You summed up everything I wanted to say.

I’m sorry for the loss we all fell for the woman who saved so many.

With much sorrow,

Zoe 

Sent from my iPhone

On Nov 2, 2024, at 11:19 PM, 'Marie Ursitti' via PLD Polycystic Liver Disease <polycysticl...@googlegroups.com> wrote:



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[isdzaan]

Hi Marie and all of you,

Thank you so much for sending this notification, sad though it is.  The only comfort is that she went peacefully, after all the battles she fought. 

I, too, am one who was much helped by Diane and all her efforts.  I remember when I was first diagnosed, but the doctor didn't really know anything more than the name PLD.  So I went to the internet and found Diane's website, where I set about learning all I could.  I sat all alone in the middle of nowhere, listening to the lectures by Dr. Torres on the website, and that made all the difference. 

Now I wonder what will happen to the group, and to the website, because it is important to me and, I am sure, to others still fighting the good fight.  Is there anyone willing and able to follow in Diane's footsteps, and take over?  I certainly hope so, and am, of course, willing to help in any way I can.

    All the best,    Marie-Louise

[Tanya Wilson]

Thank you, Marie.

I too found Diane’s website after my doctors said there was nothing they could do. I got so much help thanks to all her hard work and grace for sharing it with so many searching for answers. 

Rest easy,

Tanya Wilson

P. S. There are Facebook groups for those still searching for answers and support. 

Sent from my iPhone

On Nov 3, 2024, at 12:34 AM, 'isdzaan' via PLD Polycystic Liver Disease <polycysticl...@googlegroups.com> wrote:



To view this discussion visit https://groups.google.com/d/msgid/polycysticliverdisease/9cda73fb-6cbe-4660-9c8f-1ac08cc90b8b%40gmx.net.

[Mark de Buisseret]

Hi

Od like to send my condolences and hope the group carries on like Diane would want.

My health has taken a downward turn since suffering COVID in 2021. My walking has gone particularly bad and my blood has gone thick so my central vein blocks at the base of my neck requiring unblocking. When it is blocked my left arm swells up and sometimes it's so bad my fingers swell so much I can't use them. This is because fluid comes into the arm but can't get out. The arm goes heavy and tight but not painful until the unblocking. This process is not at all pleasant. Luckily the draining starts immediately.

Mark

Email: mde...@aol.com

To view this discussion visit https://groups.google.com/d/msgid/polycysticliverdisease/9cda73fb-6cbe-4660-9c8f-1ac08cc90b8b%40gmx.net.

[Susan Hurley-Glowa]

Thank you for this message about Diane’s passing. I also sought out and benefited from her work as I learned about PLD. Luckily for me, I have the gene but it has never progressed past multiple small cysts  to become a problem. Diane’s site and this group helped me to fully understand PLD’s nature.

I have also appreciated Mark’s responses as he shared his views and treatments over the years. Mark, I am sorry that you are going through a bad time and sincerely hope you keep fighting through the next challenges with your health. 

My best wishes for all of you. 

Hugs, 

Susan in the US

Sent from my iPhone

To view this discussion visit https://groups.google.com/d/msgid/polycysticliverdisease/341048595.4086183.1730625122503%40mail.yahoo.com.

[Mark de Buisseret]

Thanks Susan.

The good news is that I'm still about having beaten COVID in 2021 by a really close shave. It's had its effects but every day since my birth has been a fight. The flashbacks are slowly dying away but I dread COVID jab time. I don't know whether to have it or not because either way I could end up in hospital.

Marlene A Osgood and Mark E A de Buisseret
01749 344478
Email: mde...@aol.com

https://groups.google.com/d/msgid/polycysticliverdisease/E8AFF3AB-5D1E-4AD6-9DD2-2DD29F5DA193%40gmail.com

.

[lori]

Hi my dear ones, 

My heart aches to hear this news. Diane's beauty emanated through her words, her smile and her whole being. I am another one whose life was saved because of Diane and all of you. I don't know what I would have done if her website hadn't come up during my times of near-hopeless searching on the internet. I am profoundly awestruck to think of how many of us found a place of belonging, belief and healing because of Diane. I am joining all of you in sending her all of our endless love and gratitude as we grieve together.

So much love and well wishes to each of you, 

Sas (Lori) 

[zoe shadesofgreeninc.net]

Lori,

Not a favorite way to hear from you, but happy I did. 

We are all grieving the loss of our commander in chief.  She was such a special Angel who helped so so many when we didn’t know which way to turn.

There is a special place in Heaven for her.

Thank you all for writing on this page.

My sincere condolences go out to Jimmy who has been her love and her rock.

So sad,

Zoe

Sent from my iPhone

On Nov 4, 2024, at 1:17 PM, lori <sase...@gmail.com> wrote:

Hi my dear ones, 

To view this discussion visit https://groups.google.com/d/msgid/polycysticliverdisease/2fad2d1c-3565-4dc0-8737-70cb2a7b5a80n%40googlegroups.com.

[jeedee1984]

I no longer use this email address much but signed in for something and saw this shocking news! I guess I thought Diane would live forever. Since I haven't been receiving updates, can anyone say what happened?

Like others, I found this site many years ago and Diane's energy and passion for helping others and sharing her journey was such an eye opener that others were out there! She gave so much of her time to figuring out her diet, walking voraciously and always being the connector for people to Mayo. 

As with all of you, I'm sure, I have had many health issues/ journeys throughout the years but kept working until retirement two years ago. We decided last year to move near Mayo Clinic because we were often traveling so much between Arkansas and Minnesota. Turns out, it was a good choice, because I learned in June that i have a cancer that is associated with transplant, either soon after or 10 years after. Mine was found 10 years after, though it took a while. I will be having my 6/6 planned chemo on 11/20 and hopefully the PET scan shows clear. I never though I would have cancer after so many other issues. Turns out, it doesn't matter! 

I recognize several names that are still here. Diane would be so proud to know she's still bringing people together and hopefully educating others. I don't know if there is another administrator who can add another email address for me but if so, the main one I use is dewe...@gmail.com.

With much sadness as well as respect for someone who displayed her passion and never backed down. She was a champion for us all!

Diane Ellis

[Diane Smith]

This is Diane’s husband Jimmy

I will use this email address to update you about Diane’s ceremony, etc

I will send you her obituary, etc.

Please send me your current email address.

Email me: jesmit...@icloud.com

I am communicating with others in her PLD & PKD groups, and would be happy to share some of what I have learned living 30 years with a PLD/PKD sufferer.  We went through her liver surgery together.

Sent from my iPhone

Jimmy

(J.E.Smith,M.D.)

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On Nov 9, 2024, at 11:49 AM, jeedee1984 <jeede...@gmail.com> wrote:

I no longer use this email address much but signed in for something and saw this shocking news! I guess I thought Diane would live forever. Since I haven't been receiving updates, can anyone say what happened?

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[Mark de Buisseret]

Please accept our condolences in your sad time. 

Thanks

Mark 

Marlene A Osgood and Mark E A de Buisseret

Somerset

United Kingdom
Email: mde...@aol.com

https://groups.google.com/d/msgid/polycysticliverdisease/D96CD1E5-0A02-4BF3-9C5A-73E2E9C54832%40mac.com

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[zoe shadesofgreeninc.net]

Aloha Jimmy,

I’m so very saddened to hear Diane has passed.

She meant so much to so many. She was our leader, teacher and friend. I would reach out to her when I was having questions. She led me to the Mayo Clinic where I thankfully met Dr. Torres and eventually had my liver resection from Dr. Nagorney. I have since had a successful kidney transplant and owe so much of my journey to your incredible Diane.

Please accept my sincere condolences for your loss.

Much Love,

Zoe

Sent from my iPhone

On Nov 10, 2024, at 6:17 AM, 'Mark de Buisseret' via PLD Polycystic Liver Disease <polycysticl...@googlegroups.com> wrote:

Please accept our condolences in your sad time. 

To view this discussion visit https://groups.google.com/d/msgid/polycysticliverdisease/207446808.628673.1731248203116%40mail.yahoo.com.

[isdzaan]

Dear Jimmy,

Upon returning from a trip, I found your message, and am glad I have the opportunity to send you my condolences.  She spoke of you often, and I feel that your help for Diane energized her to be able to help so many others, me included. 

It is much appreciated that you feel able to continue sending updates and other communications to us.  As you know, PLD is so rare that one seldom finds doctors who have any idea about it, much less know what to do about it.  So please do send anything you prepare to

    Marit...@gmx.net

because my isd...@gmx.net mailbox has sadly been filling up with spam, and thus, messages can be overlooked.

If there should be anything I could do for you in this sad and difficult time, do please let me know.

    With best wishes,    Marie-Louise Liebe-Harkort

To view this discussion visit https://groups.google.com/d/msgid/polycysticliverdisease/D96CD1E5-0A02-4BF3-9C5A-73E2E9C54832%40mac.com.