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Transplant List & immediate family not in "circle of trust"


#1

Hi,

My husband is on the transplant list, It’s one of our deepest regrets that his support squad/inner circle can’t include some core members of his immediate family because of a pattern of toxic behavior that actively makes it harder for us to stay positive/live a normal life.

I know there’s no right/easy answer to this but - What would/have you say about the transplant to those that just aren’t capable of being confidential/supportive yet are immediate family in the local area?

Has anyone been in a similar position? I’d love to learn about how others have approached this and how it worked out.


#2

CER87,
Just saw your post before bedtime. Right now your top priority is your husbands care. If someone or something’s going to cause distress to your home then I wouldn’t tell them. While I’m a big believer in having your family and close friends fully knowledgeable about your condition and educated about PSC, if there’s some that are prone to volatility then I’d not include them. If they find out through someone misspeaking you’ll just have to tell them your husbands life depends on very stringent care and peaceable environment. Tell them at the proper time you’ll share more but right now he’s fragile. Maybe they will shut them up.
Good luck on the transplant. Let us know if there’s anything we can do.

Mark
PSC 2011 / Transplant 2015


#3

I am in a similar position…not exactly the same. It boils down to the same issue though: family not normal and supportive. I was so hoping to find some support here. It is a place where my family is not, and I can discuss how I feel about their lack of support for me. I agree with the previous reply that suggests leaving out the toxic people. I am trying to learn this myself. I feel abandoned, even betrayed, by certain family members. Understanding the connection between trusting them and experiencing misery is vital to keeping them at a safe distance. Personally, it hurts me a little each time I read an article about some loving relative going under the knife to save someone. I don’t have that. I’m just not that important to them. I feel for you. Surround yourselves with people who genuinely care for you. Keep others at a distance. PSC is hard enough without people causing more problems.
<3


#4

Thank you both for your input - we’ve decided to go vague and just focus on the positive with them as we do publicly. The ins and outs of all this are too obscure to really get people to understand the nuances of how different cases can be and what the written literature looks like versus the wonders of modern medicine my husband has experienced these last two years.

If my husband wants to share it at the last moment - we’ve drafted non disclosure agreements for them to sign should my husband change his mind. It won’t mean much more than their word but the hope would be it would be enough to make them think twice. At least giving us an out from a strangers inquiry - “You know, I’m a little surprised at what you’re saying- who said this?”