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Diane Smith

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Nov 5, 2023, 12:33:16 AM11/5/23
to jsmit...@icloud.com

Sent from my awesome Blue iPhone 13

~Diane

Mark de Buisseret

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Nov 5, 2023, 5:49:48 AM11/5/23
to polycysticl...@googlegroups.com
Are you ok?

Sent from Mark de Buisseret
38 Willow Drive
Shepton Mallet
Somerset
BA4 5JU
Email: mdebuis@ aol.com

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Mark de Buisseret

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Nov 5, 2023, 8:38:41 AM11/5/23
to 'Mark de Buisseret' via PLD Polycystic Liver Disease
Hi

We have survived 2 autumn storms without harm and flooding in our part of Somerset.

The only drug limits given in any form are that there are no Non Steroidal Anti Inflammatory Drug painkillers until you are on dialysis. Even where you are these are very last resort painkillers. 

Another group of drugs they dont like using in ANY quantity unless you are in a life threatening state is Steroids. This is because all steroids rot your bones.

My mother had yo have them on a daily basis however as she had PKD and PLD but had both kidneys removed. During this process her adrenal glands were removed as they were buried amongst her kidney cysts as the kidneys had grown around them. This causes Addison's Disease as you lack cortisol which directly controls your heart. JFK had Addison's but not because of this cause.

Another time when steroids will be used is if you are in dire straits in an attack of Covid. My hospital tried giving steroids on a group of patients as a last ditch attempt to save them. Some recovered in a few days whilst others avoided needed life support and then gradually improved. They then spread reports around the world. I myself are writing this email because I was given steroids as part of my covid fight and as a direct result beat a 5% chance of survival. It has added to my bone damage now in every bone but Im alive. In continuous agony pain but alive. Theyve put my pain meds up but even so its insufficient.

I am now in the age group for a shingles jab because of my fragile health. Despite having many preventative jabs and other drugs and many qualifying conditions my General Practitioner whom I havent been able to get an appointment with for at least 4 years has decided for some unknown reason that I do not qualify so I have a fight on my hands to get one even though my consultant and everyone else agrees I qualify

Mark


Sent from Mark de Buisseret

On Sun, 5 Nov 2023 at 10:49, 'Mark de Buisseret' via PLD Polycystic Liver Disease
Are you ok?

Sent from Mark de Buisseret
38 Willow Drive
Shepton Mallet
Somerset
BA4 5JU
Email: mdebuis@ aol.com

On Sun, 5 Nov 2023 at 4:33, 'Diane Smith' via PLD Polycystic Liver Disease

Sent from my awesome Blue iPhone 13

~Diane

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Marie Ursitti

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Nov 8, 2023, 11:48:58 AM11/8/23
to jsmit...@icloud.com, 'Diane Smith' via PLD Polycystic Liver Disease
Hi Diane - I saw your below email but nothing was in it.  Were you responding to my question about vaccines?

thanks - Marie Ursitti

On Sunday, November 5, 2023 at 12:33:17 AM EDT, 'Diane Smith' via PLD Polycystic Liver Disease <polycysticl...@googlegroups.com> wrote:



Sent from my awesome Blue iPhone 13

~Diane

Marie Ursitti

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Nov 8, 2023, 12:07:35 PM11/8/23
to 'Mark de Buisseret' via PLD Polycystic Liver Disease
Hi Mark -  I am guessing your response was to my question on any vaccine restrictions?  I am wondering if vaccines are too much  for the kidneys and liver to process. Some we need and some we just get.   Do they or can they make cysts grow larger?  I am asking this question in regards to my 16 year old daughter who has kidney and liver cysts.  

Thanks - Marie

Mark de Buisseret

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Nov 8, 2023, 7:42:33 PM11/8/23
to polycysticl...@googlegroups.com
The only ones affected are ones I stated.

Eventually yesterday I won the fight to have a shingles jab!

Mark

Sent from Mark de Buisseret
38 Willow Drive
Shepton Mallet
Somerset
BA4 5JU
Email: mdebuis@ aol.com

On Wed, 8 Nov 2023 at 17:07, 'Marie Ursitti' via PLD Polycystic Liver Disease

Neus

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Jan 10, 2024, 1:48:49 PMJan 10
to PLD Polycystic Liver Disease
Hi
Does anyone know anything about Diane?

El dia dijous, 9 de novembre del 2023 a les 1:42:33 UTC+1, Mark de Buisseret va escriure:

justushw

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Jan 10, 2024, 3:01:45 PMJan 10
to polycysticliverdisease
Has anyone heard from Diane,?


Marianne Pope

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Jan 10, 2024, 3:56:23 PMJan 10
to polycysticl...@googlegroups.com
Hope all is ok 

 Marianne
07703298550

Sent from my iPhone

On 10 Jan 2024, at 20:01, justushw <just...@comcast.net> wrote:



MARIE Ursitti

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Feb 3, 2024, 9:03:05 PMFeb 3
to polycysticl...@googlegroups.com
Has something happened? 

On Jan 10, 2024, at 3:56 PM, Marianne Pope <marian...@gmail.com> wrote:

Hope all is ok 

zoe shadesofgreeninc.net

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Feb 3, 2024, 9:15:37 PMFeb 3
to polycysticl...@googlegroups.com
I just texted her.
Hopefully all okay
I’ll let you know 

Sent from my iPhone

On Feb 3, 2024, at 6:03 PM, 'MARIE Ursitti' via PLD Polycystic Liver Disease <polycysticl...@googlegroups.com> wrote:



Marianne Pope

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Feb 4, 2024, 5:51:43 AMFeb 4
to polycysticl...@googlegroups.com
Thanks 

 Marianne
07703298550

Sent from my iPhone

On 4 Feb 2024, at 02:03, 'MARIE Ursitti' via PLD Polycystic Liver Disease <polycysticl...@googlegroups.com> wrote:


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