Support for large belly

[jo arch]

Hi all, and first I’d like to wish all you moms out there a lovely and healthy Mother’s Day. Yay Moms! 

About two weeks ago I started having sharp pains in my liver and kidneys. I have had 2 of the cysts drained and am still feeling the sharp stabs. 

Today, I stuffed my huge “7-‘mo pregnant” PKD belly into a one piece swimsuit and discovered my cysts didn’t hurt as much. My belly doesn’t hang and flop around as much because it was supported so every movement is a little less painful. 

Have any of you tried belly support? Like maternity underwear? 

Thoughts? 

Thank you, 

Jo 

[Diane Smith]

Jo,

I am responding for Diane.  She is in an assisted living facility and is extremely weak right now, and unable to respond.

From your description of your symptoms, it seems as though you may be ready to consider some options.  First, if you are able, you might consider getting a consultation with Dr. Vincent Torres at the Mayo Clinic in Rochester, Minnesota.  He is probably the world’s leading authority on PKD, including those who also have PLD.  

Diane was at your stage of PLD 30 years ago.   She was fortunate to see Dr. Torres who has worked with Dr. Nagorney, who has the most experience of any surgeon treating severe PLD.  Diane had a partial hepatectomy, which relieved her symptoms.  It was very effective treatment.  Her life (and mine) changed dramatically after that brilliant surgery.

But, a starting point for you would be to contact Dr.Torres and see what he thinks.

Vicente E Torres MD 

19 E Mayo Building

Division of Nephrology

200 First Street SW

Rochester MN 55902

(507) 266-7093  

(*his secretary was Brenda, but she may have retired )

Good luck to you,

Jim Smith (Diane’s husband)

Sent from my iPhone

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On May 11, 2024, at 6:06 PM, jo arch <joa...@gmail.com> wrote:

Hi all, and first I’d like to wish all you moms out there a lovely and healthy Mother’s Day. Yay Moms! 

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[jo arch]

Hi Jim, 

How is Dianne? For some reason, your email was lost among all my spam…

I am so sorry to hear she is weak. Her strength was always so inspiring. We had lunch one day at Mariposa many many years ago, and I was so taken by how she was able to take charge of her diet and condition. She is a beautiful woman. 

Thank you for the information.  I am on a limited income but will check with Dr Torres. I am going though the initial testing phases for a kidney transplant with UCSF, which I would love to avoid. 

Please give my best to Dianne, and to you. She had mentioned how she was so fortunate to have you as her husband and life partner. I wish you strength and love across the miles. 

Me ke aloha 

Jo

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