Connect
← Return to Post-op care locally after surgery at Mayo?
Discussion
Post-op care locally after surgery at Mayo?
Visiting Mayo Clinic | Last Active: Jul 7, 2020 | Replies (13)Comment receiving replies
@amywood20
Hi Amy,
I'm glad you are here as part of our community! I had PKD too, but I don't anymore... I received a laparoscopic bilateral native nephrectomy (to remove my PKD kidneys) at the same time I had a living donor kidney transplant. I had my major surgery at Mayo and coordinated my recovery and Physical Therapy with my local team. I have been very successful with a blended team effort (some Docs at Mayo and some locally). In your case it would be awesome to have your post care set up and ready to go locally before your surgery takes place. Depending on what computer systems your local teams use you can either share medical records automatically through EPIC or you can have them sent back and fourth in less automated ways.
PS if you have PLD evidence show you should NOT take Estradiol or Estrogen because it causes the liver cysts to grow in volume.
Replies to "@amywood20 Hi Amy, I'm glad you are here as part of our community! I had PKD..."
Connect
@jolinda Thanks for the info and congrats on a successful PKD surgery. In terms of the estradiol/estrogen, none of my medical professionals here seemed to know about that. I was on HRT for three years before learning from others I should not be taking it. I stopped it on my own July 2019. Went to Mayo in October and the PKD/PLD specialists were shocked that my family practice doc, OB/GYN, nephrologist and liver specialist had no clue. Last month I did do a telemedicine appointment with an OB/GYN at Mayo because after six years of not having a period (am not on birth control) and lab work indicating I am post menopause, I have started bleeding again. In my discussion I did mention to the Mayo OB/GYN about my PKD/PLD and the estrogen issue. She wanted to put me on Premarin cream, noting due to how it is administered, it should not be an issue compared to an oral pill. She was concerned about bone health. I have another call with her at the end of the month to go over new lab work she had me do here locally.