PKD

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Marie Ursitti

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Aug 28, 2023, 12:22:13 AM8/28/23
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Hi All -  Hope everyone is doing well.  My 16 year old daughter had an ultrasound to check for kidney and liver cysts.  It turns out she has  5 small renal cysts in total. She also has one nonobstructive Kidney Stone. No liver cysts at the moment.  Not sure if she will develop liver cysts later on.   I myself didn't get diagnosed till I was 27.  I had my liver resection at the Mayo when I was 43years old. I haven't reached out to Dr. Torres yet but I plan to.  Does anyone else have teenage children with Kidney cysts/liver cysts and if so how did you proceed? 

Thanks - Marie Ursitti

Diane Smith

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Sep 2, 2023, 4:29:47 PM9/2/23
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Dear marie
Dr torres gave a lecture once that if the ct scan was fine enough it would show liver cysts

I am sorry i took so long to answer   I have a broken hip

Sent from my awesome purple iPhone 14

~Diane


On Aug 27, 2023, at 6:22 PM, 'Marie Ursitti' via PLD Polycystic Liver Disease <polycysticl...@googlegroups.com> wrote:


Hi All -  Hope everyone is doing well.  My 16 year old daughter had an ultrasound to check for kidney and liver cysts.  It turns out she has  5 small renal cysts in total. She also has one nonobstructive Kidney Stone. No liver cysts at the moment.  Not sure if she will develop liver cysts later on.   I myself didn't get diagnosed till I was 27.  I had my liver resection at the Mayo when I was 43years old. I haven't reached out to Dr. Torres yet but I plan to.  Does anyone else have teenage children with Kidney cysts/liver cysts and if so how did you proceed? 

Thanks - Marie Ursitti

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Mark de Buisseret

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Sep 2, 2023, 4:35:05 PM9/2/23
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Hi

Kidney stones can be caused by high pth due to overactive parathyroid glands. One of the reasons for this is kidney disease but its not the only cause. I have it and its playing hell with my bones. Women suffer through other hormonal damage too.

Id have the PTH checked at some point.

Mark

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

On Sat, 2 Sep 2023 at 21:29, 'Diane Smith' via PLD Polycystic Liver Disease
Dear marie
Dr torres gave a lecture once that if the ct scan was fine enough it would show liver cysts

I am sorry i took so long to answer   I have a broken hip

Sent from my awesome purple iPhone 14

~Diane


On Aug 27, 2023, at 6:22 PM, 'Marie Ursitti' via PLD Polycystic Liver Disease <polycysticl...@googlegroups.com> wrote:


Hi All -  Hope everyone is doing well.  My 16 year old daughter had an ultrasound to check for kidney and liver cysts.  It turns out she has  5 small renal cysts in total. She also has one nonobstructive Kidney Stone. No liver cysts at the moment.  Not sure if she will develop liver cysts later on.   I myself didn't get diagnosed till I was 27.  I had my liver resection at the Mayo when I was 43years old. I haven't reached out to Dr. Torres yet but I plan to.  Does anyone else have teenage children with Kidney cysts/liver cysts and if so how did you proceed? 

Thanks - Marie Ursitti

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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/1082202987.1233866.1693196529527%40mail.yahoo.com.

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Mark de Buisseret

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Sep 2, 2023, 4:35:44 PM9/2/23
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I have PKD too.


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

On Sat, 2 Sep 2023 at 21:29, 'Diane Smith' via PLD Polycystic Liver Disease
Dear marie
Dr torres gave a lecture once that if the ct scan was fine enough it would show liver cysts

I am sorry i took so long to answer   I have a broken hip

Sent from my awesome purple iPhone 14

~Diane


On Aug 27, 2023, at 6:22 PM, 'Marie Ursitti' via PLD Polycystic Liver Disease <polycysticl...@googlegroups.com> wrote:


Hi All -  Hope everyone is doing well.  My 16 year old daughter had an ultrasound to check for kidney and liver cysts.  It turns out she has  5 small renal cysts in total. She also has one nonobstructive Kidney Stone. No liver cysts at the moment.  Not sure if she will develop liver cysts later on.   I myself didn't get diagnosed till I was 27.  I had my liver resection at the Mayo when I was 43years old. I haven't reached out to Dr. Torres yet but I plan to.  Does anyone else have teenage children with Kidney cysts/liver cysts and if so how did you proceed? 

Thanks - Marie Ursitti

--
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/1082202987.1233866.1693196529527%40mail.yahoo.com.

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Diane Smith

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Sep 2, 2023, 5:18:03 PM9/2/23
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PLD i did not know thst high parathyroid can cause kidney stones


Sent from my awesome purple iPhone 14

~Diane


On Sep 2, 2023, at 10:35 AM, 'Mark de Buisseret' via PLD Polycystic Liver Disease <polycysticl...@googlegroups.com> wrote:

I have PKD too.

Mark de Buisseret

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Sep 2, 2023, 5:25:11 PM9/2/23
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The parathyroid sometimes becomes overactive which pushes up pth causing calcium to come out of your bones. There are two possible treatments. 

1. Cinacalcet tablets
2. There is a surgical option nicknamed the renal necklace where a surgeon cuts out one or all of the parathyroids. Theres two either side of your neck hence the necklace. Although that is a minor op as your blood adjusts you can be very sick. Some end up in itu in really bad cases.

 Mark


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

On Sat, 2 Sep 2023 at 22:18, 'Diane Smith' via PLD Polycystic Liver Disease

MARIE Ursitti

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Sep 2, 2023, 8:15:12 PM9/2/23
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Okay this is helpful. So she should get a CatScan tto check for liver cysts.  She had an issue with thyroid a few years ago.  She had a tiny bald spot on her head and at that time her thyroid was out of range. The doc said it related.   Now my daughter has been losing her bottom eye lashes. My husband has thyroid issues it runs in his family. Plus one of his sisters has Hashimotos disease.  

On Sep 2, 2023, at 5:25 PM, 'Mark de Buisseret' via PLD Polycystic Liver Disease <polycysticl...@googlegroups.com> wrote:

The parathyroid sometimes becomes overactive which pushes up pth causing calcium to come out of your bones. There are two possible treatments. 

Mark de Buisseret

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Sep 2, 2023, 8:40:16 PM9/2/23
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Firstly the thyroid is a different organ than the parathyroid. Both are located in the neck but produce different hormones. The Thyroid produces cortisone which controls your heart and bp. It also controls the fight or flight response. If theres a fault normally its fixed hy medicine I think.

Yes its possible to have PKD as well as PLD as cysts can be found anywhere. I have kidney, liver and skin cysts. If anyone has PKD like me you should also have a spine check. A fault with one of the genes that causes PKD also cause Spina Bifida Occulta and or Scoliosis. Ive got all three. If theres a chance of either get a scan to look at your spinal nerves.

Pkd cysts spread throughout the major organs inc pancreas, Liver, Heart and Brain. PKD can also cause Mitral Valve Prolapse. My brother has that and sadly has this with this PKD. If you have issues with breathing or bp talk to drs about your heart.

Its possible for cysts to burst releasing the contents into your blood stream. Liver cysts about to to go make your mood rubbish. Then it goes without pain and you feel a bit fluey fir a couple of days. Kidney cysts are similar except the pain when they go is excruciating and if close to a nerve it spreads along the nerve.

In the last week ive had both go. The kidney first went and unusually the pain came up the front left and in my jaw. It was bad. for a few mins. Tonight a liver cyst went in the same area and i got a sudden rush of warmth and slight pain.


Mark

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

On Sun, 3 Sep 2023 at 1:15, 'MARIE Ursitti' via PLD Polycystic Liver Disease

MARIE Ursitti

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Sep 2, 2023, 9:33:32 PM9/2/23
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Wow Mark. That is something.  Did you ever have a resection or your kidneys cysts cauterized?  Dr. Nagorney cauterized I think two big kidney cysts lon my kidneys the same time I had my liver resection about 13 years ago.
Samantha my daughter does have scoliosis and so do I .  I never knew the correlation between PKD and Scoliosis.  Glad I know now.  Thank you.  

On Sep 2, 2023, at 8:40 PM, 'Mark de Buisseret' via PLD Polycystic Liver Disease <polycysticl...@googlegroups.com> wrote:

Firstly the thyroid is a different organ than the parathyroid. Both are located in the neck but produce different hormones. The Thyroid produces cortisone which controls your heart and bp. It also controls the fight or flight response. If theres a fault normally its fixed hy medicine I think.

Marianne Pope

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Sep 3, 2023, 6:33:54 AM9/3/23
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Hi Diane. 
Hope you are okay. Also was thinking of you during the hurricane and hope all okay. 
I had shiatsu when I went away - my liver felt amazing after. 

Marianne

 Marianne
07703298550

Sent from my iPhone

On 2 Sep 2023, at 21:29, 'Diane Smith' via PLD Polycystic Liver Disease <polycysticl...@googlegroups.com> wrote:

Dear marie

Marie Ursitti

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Nov 4, 2023, 11:53:41 AM11/4/23
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Hi All -  Are there any vaccine restrictions on those with PLD and PKD that we know of?   Do vaccines cause cysts to grow?

Thanks - Marie
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