← Return to Primary Sclerosing Cholangitis (PSC)

Discussion

Primary Sclerosing Cholangitis (PSC)

Transplants | Last Active: Jun 10 6:35am | Replies (93)

Comment receiving replies
@sandyjr

Thank you for your quick reply. I am in shock even though I think I knew this was coming. I am new to this website so do not know how to navigate it well. My daughter turned 43 yesterday...I am so glad she had a great/and happy birthday. This is probably too much information, but her husband is psychologically abusive and everyone wants her to leave him, but I think she is afraid as well as he holds the health insurance. She is in a very bad place with a lot of stress. I do not know if the health insurance would cover her out of state. I do not think her disease has progressed too far and that is why I would like for her to be able to get information/opinions from Mayo. The liver biopsy was done at our local hospital and a second opinion was received from Mount Sinai Hospital, so I think the diagnosis is accurate. She lives only about 5 miles from me and this year has been hard for both of us. I was diagnosed with breast cancer for the second time in April and she started her journey about that same time....just blood work then. The first specialist she went to could not seem to get approval for the tests that she needed and she ended up in the ER with a Crohn’s attack and the doctor that took care of her is excellent. He has ordered and gotten approval for every test possible as far as I know. She and I support each other...she took me for my surgery and to my Dr appointments. No wonder her Crohn’s flared up. Of course I would do anything for her. We live in NJ and none of the Mayo sights are remotely close. I did read that they have places that work with them and maybe act as intermediaries, but I cannot find any information. Please forward me info and websites so that I can at least feel like I am helping. Thanks Colleen. I am on your website, only in the breast cancer part.

Jump to this post


Replies to "Thank you for your quick reply. I am in shock even though I think I knew..."

Sandy. I was treated locally in my state of Kentucky. And I received excellent care here, and after 8 years, I had to be listed for for a transplant here. When some some complications developed, my local transplant team arranged for me to be seen at Mayo, where I transplanted in 2009.
It sounds to me like your daughter has a supportive doctor who will answer her questions about this.

How does that sound to you?

@stella25, with your PSC experience, do you have any ideas to help Sandy deal with her daughter's new PSC diagnosis?

Sandy, when you say that Mayo has "places that work with them and maybe act as intermediaries", I believe you are referring to the Mayo Clinic Care Network https://www.mayoclinic.org/about-mayo-clinic/care-network

Excerpt from the website
"Mayo Clinic is deeply committed to caring for all those who need hope and healing, but we recognize that not everyone wants or needs to travel to Mayo Clinic for care. Today, innovations in the delivery of care can ensure that people have access to Mayo Clinic medical expertise no matter where they live.
The Mayo Clinic Care Network uses technology and physician collaboration to deliver a full spectrum of medical expertise to communities across the country and throughout the world. Through the network, Mayo Clinic collaborates with local providers, complementing local expertise and providing additional peace of mind."

It doesn't look like there is an official Care Network partner in NJ. But as Rosemary says, many patients of Mayo Clinic return home and Mayo experts coordinate care with local providers. If you call Mayo, they can answer these questions more knowledgeably, including information about out of state insurance etc.