# Support and Caregivers **URL:** https://forum.livingwithpsc.org/c/support/14.md [Latest](https://forum.livingwithpsc.org/latest.md) · [Categories](https://forum.livingwithpsc.org/categories.md) --- ## [About the Support and Caregivers category](https://forum.livingwithpsc.org/t/about-the-support-and-caregivers-category/20)
**Author:** [@system](https://forum.livingwithpsc.org/u/system)\ **Replies:** 0\ **Last updated:** [June 6, 2016, 9:16am UTC](https://forum.livingwithpsc.org/t/about-the-support-and-caregivers-category/20 "2016-06-06T09:16:59Z")
Having a rough time? We're here to listen. --- ## [I need to vent about my experience with PSC](https://forum.livingwithpsc.org/t/i-need-to-vent-about-my-experience-with-psc/5436)
**Author:** [@opheodrysaestivus](https://forum.livingwithpsc.org/u/opheodrysaestivus)\ **Replies:** 8\ **Last updated:** [September 28, 2026, 7:33pm UTC](https://forum.livingwithpsc.org/t/i-need-to-vent-about-my-experience-with-psc/5436 "2026-09-28T19:33:52Z")
I’m feeling really bad right now and just want to share my situation. I went to the doc in 2021 because I was suddenly nauseous every day. They ran a million tests, told me I had Crohn’s disease, and sent me on my way. A… --- ## [Joining Care Givers](https://forum.livingwithpsc.org/t/joining-care-givers/4806)
**Author:** [@ModSupport](https://forum.livingwithpsc.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [November 9, 2021, 10:04pm UTC](https://forum.livingwithpsc.org/t/joining-care-givers/4806 "2021-11-09T22:04:51Z")
Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them. … --- ## [Ferritin 461](https://forum.livingwithpsc.org/t/ferritin-461/5496)
**Author:** [@Lasardo](https://forum.livingwithpsc.org/u/Lasardo)\ **Replies:** 2\ **Last updated:** [January 30, 2025, 2:16pm UTC](https://forum.livingwithpsc.org/t/ferritin-461/5496 "2025-01-30T14:16:52Z")
I am recently diagnosed with PSC. For now, we are simply monitoring with --- ## [Mental Health - Relearning how to be 'OK' with PSC?](https://forum.livingwithpsc.org/t/mental-health-relearning-how-to-be-ok-with-psc/5187)
**Author:** [@TiredTiger](https://forum.livingwithpsc.org/u/TiredTiger)\ **Replies:** 7\ **Last updated:** [May 9, 2023, 1:34am UTC](https://forum.livingwithpsc.org/t/mental-health-relearning-how-to-be-ok-with-psc/5187 "2023-05-09T01:34:34Z")
Howdy, This will be a bit of a story…But I need to get it out… I (37M) was diagnosed with PSC back in 2010 after routine bloodwork found elevated LFTs, no other symptoms. It all remained very quiet and well behaved unti… --- ## [Coffee and being a Mormon](https://forum.livingwithpsc.org/t/coffee-and-being-a-mormon/5106)
**Author:** [@Eldermen02](https://forum.livingwithpsc.org/u/Eldermen02)\ **Replies:** 10\ **Last updated:** [February 4, 2023, 7:10am UTC](https://forum.livingwithpsc.org/t/coffee-and-being-a-mormon/5106 "2023-02-04T07:10:44Z")
I’ve been looking a lot into the research on coffee benefits with PSC. I’m struggling with the choice of drinking coffee as I belong to The Church of Jesus Christ of Latter Day Saints, and part of our “health creed” is n… --- ## [Women - quitting alcohol advice](https://forum.livingwithpsc.org/t/women-quitting-alcohol-advice/5098)
**Author:** [@Sarahpeach555](https://forum.livingwithpsc.org/u/Sarahpeach555)\ **Replies:** 0\ **Last updated:** [November 2, 2022, 3:09pm UTC](https://forum.livingwithpsc.org/t/women-quitting-alcohol-advice/5098 "2022-11-02T15:09:19Z")
Hi ladies. I wanted to drop a message on here to help anyone who is trying to quit drinking and is struggling to stick to it. I’m 29 years old and have quit drinking for my psc. I’ve always been a fun life and soul of … --- ## [Do you tell your friends about psc?](https://forum.livingwithpsc.org/t/do-you-tell-your-friends-about-psc/4362)
**Author:** [@eck620](https://forum.livingwithpsc.org/u/eck620)\ **Replies:** 11\ **Last updated:** [November 2, 2022, 2:59pm UTC](https://forum.livingwithpsc.org/t/do-you-tell-your-friends-about-psc/4362 "2022-11-02T14:59:12Z")
Hi all - I’m a 35 y/o PSCer living in the Detroit area. I was diagnosed at age 30 and have been living with it secretly since then; my immediate family knows and so does my wife’s, but none of our friends. Alcohol is ty… --- ## [We Lost Another Warrior Today](https://forum.livingwithpsc.org/t/we-lost-another-warrior-today/4284)
**Author:** [@MzzP](https://forum.livingwithpsc.org/u/MzzP)\ **Replies:** 15\ **Last updated:** [December 21, 2021, 2:55am UTC](https://forum.livingwithpsc.org/t/we-lost-another-warrior-today/4284 "2021-12-21T02:55:27Z")
James Redford, Robert Redford’s son lost his battle with PSC yesterday. Transplanted in 1998, I believe, with bile duct cancer returning and his patient but losing WAIT on the transplant list. I’m early stage. Diagnos… --- ## [Worries from Mom](https://forum.livingwithpsc.org/t/worries-from-mom/4328)
**Author:** [@Tmo8](https://forum.livingwithpsc.org/u/Tmo8)\ **Replies:** 0\ **Last updated:** [November 11, 2020, 8:27pm UTC](https://forum.livingwithpsc.org/t/worries-from-mom/4328 "2020-11-11T20:27:43Z")
Hi everyone Mom here, I have an update on Seth he has UC/small duct PSC diagnosed age 16 for UC age 17 for PCS, he’s now 21! He went back to the ER for IV steriods this weekend, which terrify him due to horrible side af… --- ## [Bad Days - When do they end?](https://forum.livingwithpsc.org/t/bad-days-when-do-they-end/2276)
**Author:** [@MzzP](https://forum.livingwithpsc.org/u/MzzP)\ **Replies:** 11\ **Last updated:** [October 24, 2020, 5:15am UTC](https://forum.livingwithpsc.org/t/bad-days-when-do-they-end/2276 "2020-10-24T05:15:06Z")
It’s one of my bad days. They seem to always come the day after I hang out with friends I haven’t seen for a while and as I watch them, I sometimes feel a twinge of jealousy of their freedom. I struggle hard with this … --- ## [Colectomy with UC and PSC](https://forum.livingwithpsc.org/t/colectomy-with-uc-and-psc/2913)
**Author:** [@Worriedwife](https://forum.livingwithpsc.org/u/Worriedwife)\ **Replies:** 30\ **Last updated:** [June 19, 2019, 7:46am UTC](https://forum.livingwithpsc.org/t/colectomy-with-uc-and-psc/2913 "2019-06-19T07:46:45Z")
Hi, Just wondering if anyone has any advice or has had similar experience with uc and psc . My husband’s uc has been flaring for the past yr, cannot take steroids as they caused fluid collections in the pancreas. … --- ## [Live Donor Denied](https://forum.livingwithpsc.org/t/live-donor-denied/2959)
**Author:** [@Eric1](https://forum.livingwithpsc.org/u/Eric1)\ **Replies:** 5\ **Last updated:** [April 2, 2019, 4:47pm UTC](https://forum.livingwithpsc.org/t/live-donor-denied/2959 "2019-04-02T16:47:36Z")
Frustrating week. I have been listed since November with a low MELD and relatively decent quality of life, but my best hope for a living donor was denied this week during the last test, as our anatomy didn’t line up well… --- ## [Increasingly frustrated](https://forum.livingwithpsc.org/t/increasingly-frustrated/2754)
**Author:** [@AutoimmunetoStars](https://forum.livingwithpsc.org/u/AutoimmunetoStars)\ **Replies:** 3\ **Last updated:** [October 20, 2018, 3:10am UTC](https://forum.livingwithpsc.org/t/increasingly-frustrated/2754 "2018-10-20T03:10:49Z")
I’m frustrated. My enzymes keep fluctuating (ALT and AST, GGT) and there’s no answer as to why. I’m going to see a Hepatologist Dec 20 (hopefully earlier, but I can’t guarantee that)because my Gastro did every test possi… --- ## [Transplant List & immediate family not in "circle of trust"](https://forum.livingwithpsc.org/t/transplant-list-immediate-family-not-in-circle-of-trust/2540)
**Author:** [@CER87](https://forum.livingwithpsc.org/u/CER87)\ **Replies:** 3\ **Last updated:** [October 11, 2018, 10:23pm UTC](https://forum.livingwithpsc.org/t/transplant-list-immediate-family-not-in-circle-of-trust/2540 "2018-10-11T22:23:52Z")
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… --- ## [Why is diagnosis taking so long?](https://forum.livingwithpsc.org/t/why-is-diagnosis-taking-so-long/42)
**Author:** [@loriersea](https://forum.livingwithpsc.org/u/loriersea)\ **Replies:** 8\ **Last updated:** [July 27, 2018, 8:25am UTC](https://forum.livingwithpsc.org/t/why-is-diagnosis-taking-so-long/42 "2018-07-27T08:25:21Z")
Hi, everyone. I'm new here, and very frustrated. About a year ago, my husband started having stomach discomfort. We just assumed it was stress (at the time it started, I was pregnant with our very unexpected third chil… --- ## [Progressing Stage?](https://forum.livingwithpsc.org/t/progressing-stage/461)
**Author:** [@Gloria](https://forum.livingwithpsc.org/u/Gloria)\ **Replies:** 4\ **Last updated:** [June 6, 2018, 8:26pm UTC](https://forum.livingwithpsc.org/t/progressing-stage/461 "2018-06-06T20:26:32Z")
Hello, All. I think we've entered into a new realm of this horrid monkey on our back, PSC. My fiance is not doing so good emotionally, nor physically. To sum it up, he's beat. Walking up the stairs to our bedroom he's ou… --- ## [How do you cope with PSC?](https://forum.livingwithpsc.org/t/how-do-you-cope-with-psc/605)
**Author:** [@MarleneH](https://forum.livingwithpsc.org/u/MarleneH)\ **Replies:** 17\ **Last updated:** [April 15, 2018, 12:17am UTC](https://forum.livingwithpsc.org/t/how-do-you-cope-with-psc/605 "2018-04-15T00:17:36Z")
I got diagnosed with PSC back in 2012 and probably had it all the way back in 2009 – 2010. I remember when I got this diagnosed how it felt like a punch to my very core. I could literally see all my dreams and hopes for… --- ## [Frustrated w good blood results?](https://forum.livingwithpsc.org/t/frustrated-w-good-blood-results/1551)
**Author:** [@Eric1](https://forum.livingwithpsc.org/u/Eric1)\ **Replies:** 13\ **Last updated:** [April 7, 2018, 12:50am UTC](https://forum.livingwithpsc.org/t/frustrated-w-good-blood-results/1551 "2018-04-07T00:50:06Z")
Am I the only person who gets irritated with improved results? This may sound strange. But w feeling so poorly, and having so many other bad results coupled w a bilirubin that's now barely evelevated, drives me nuts. No… --- ## [First to kickstart this topic](https://forum.livingwithpsc.org/t/first-to-kickstart-this-topic/1963)
**Author:** [@jbird](https://forum.livingwithpsc.org/u/jbird)\ **Replies:** 4\ **Last updated:** [December 19, 2017, 2:38pm UTC](https://forum.livingwithpsc.org/t/first-to-kickstart-this-topic/1963 "2017-12-19T14:38:16Z")
So I have only just joined this group but I already love the ideas being thrown around. I noticed this topic and that no one had posted anything so as a religious person myself I thought I would share one quick thought f… --- ## [Crisis Help Line](https://forum.livingwithpsc.org/t/crisis-help-line/1175)
**Author:** [@ModSupport](https://forum.livingwithpsc.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [January 4, 2017, 8:48pm UTC](https://forum.livingwithpsc.org/t/crisis-help-line/1175 "2017-01-04T20:48:30Z")
Are you in crisis, or maybe even feeling suicidal? Do need someone to listen and to support you right now? Take a deep breath, and find the helpline in your country: USA Canada United Kingdom http://www.nhs.uk/Con… --- ## [Low Platelet Count](https://forum.livingwithpsc.org/t/low-platelet-count/720)
**Author:** [@Tiffanie\_D](https://forum.livingwithpsc.org/u/Tiffanie_D)\ **Replies:** 6\ **Last updated:** [May 19, 2016, 7:31pm UTC](https://forum.livingwithpsc.org/t/low-platelet-count/720 "2016-05-19T19:31:56Z")
I am in the process of getting on the liver transplant list, so I am doing all of the pre testing and procedures that are needed. I had blood, drawn, xrays, sonograms, etc, which all came back normal, except my echo. The… --- ## [Not Sure whats going on](https://forum.livingwithpsc.org/t/not-sure-whats-going-on/740)
**Author:** [@Jackal](https://forum.livingwithpsc.org/u/Jackal)\ **Replies:** 12\ **Last updated:** [April 13, 2016, 2:37am UTC](https://forum.livingwithpsc.org/t/not-sure-whats-going-on/740 "2016-04-13T02:37:17Z")
My husband was told he has PSC. He did MRI scan and shows the the extrahepatic ductal system is of narrow calibre. The intrahepatic biliary tree shows marked stricturing with alternating areas of segmental dilatation. Ki… --- ## [Lifestyle changes/ planning with your caregiving spouse](https://forum.livingwithpsc.org/t/lifestyle-changes-planning-with-your-caregiving-spouse/809)
**Author:** [@Dolphin5](https://forum.livingwithpsc.org/u/Dolphin5)\ **Replies:** 2\ **Last updated:** [February 16, 2016, 1:38am UTC](https://forum.livingwithpsc.org/t/lifestyle-changes-planning-with-your-caregiving-spouse/809 "2016-02-16T01:38:01Z")
Have you tried to make a change in your lifestyle to reduce pressure/ stress on you and the loved one/s who take care of you ? Have you made or are you thinking of making changes in your living arrangements in anticipati… --- ## [My kid is making ME crazy!](https://forum.livingwithpsc.org/t/my-kid-is-making-me-crazy/800)
**Author:** [@Jeffsmom](https://forum.livingwithpsc.org/u/Jeffsmom)\ **Replies:** 6\ **Last updated:** [February 14, 2016, 10:49pm UTC](https://forum.livingwithpsc.org/t/my-kid-is-making-me-crazy/800 "2016-02-14T22:49:07Z")
Just wondering if other parents encounter this situation and how do you handle it. My son is 25, was diagnosed with PSC in May of 2015. He has had ulcerative colitis since he was six. Was diagnosed with Aspergers at age … --- ## [Waiting on test results](https://forum.livingwithpsc.org/t/waiting-on-test-results/799)
**Author:** [@Patty\_J](https://forum.livingwithpsc.org/u/Patty_J)\ **Replies:** 4\ **Last updated:** [February 14, 2016, 6:35pm UTC](https://forum.livingwithpsc.org/t/waiting-on-test-results/799 "2016-02-14T18:35:41Z")
Hello, My husband was diagnosed with PSC in August 2010. He has been and still is free of symptoms. He had a routine ERCP done this past Friday and a suspicious very small area was found. The doctor did brushings of t… --- ## [Tired, Cranky Without Appetite - Help Me, Help Him](https://forum.livingwithpsc.org/t/tired-cranky-without-appetite-help-me-help-him/348)
**Author:** [@Gloria](https://forum.livingwithpsc.org/u/Gloria)\ **Replies:** 7\ **Last updated:** [November 17, 2015, 1:36am UTC](https://forum.livingwithpsc.org/t/tired-cranky-without-appetite-help-me-help-him/348 "2015-11-17T01:36:32Z")
I've hit some sort of wall here, guys. My loved one's conditions are progressing and his attitude about it all are shifting. The cirrhosis is blooming like the flowers out our windows (that I can't open because he's cold… --- ## [Update on severe PSC exacerbation](https://forum.livingwithpsc.org/t/update-on-severe-psc-exacerbation/751)
**Author:** [@GmaTD53](https://forum.livingwithpsc.org/u/GmaTD53)\ **Replies:** 2\ **Last updated:** [October 18, 2015, 3:43am UTC](https://forum.livingwithpsc.org/t/update-on-severe-psc-exacerbation/751 "2015-10-18T03:43:13Z")
My husband had a severe exacerbation of his PSC in early Sept. As I've posted previously, he was scheduled for Transplant evaluation testing for the week of Sept. 14th at Cleveland Clinic,mbutmwasmgettingnvery sick a few… --- ## [How to deal with relatives that don't understand your illness](https://forum.livingwithpsc.org/t/how-to-deal-with-relatives-that-dont-understand-your-illness/524)
**Author:** [@Stephen](https://forum.livingwithpsc.org/u/Stephen)\ **Replies:** 3\ **Last updated:** [May 30, 2015, 2:47am UTC](https://forum.livingwithpsc.org/t/how-to-deal-with-relatives-that-dont-understand-your-illness/524 "2015-05-30T02:47:26Z")
http://www.huffingtonpost.com/ilana-jacqueline/chronic-illness\_b\_4499187.html This is an excellent article. --- ## [Describe the best kind of support person for you](https://forum.livingwithpsc.org/t/describe-the-best-kind-of-support-person-for-you/644)
**Author:** [@Dolphin5](https://forum.livingwithpsc.org/u/Dolphin5)\ **Replies:** 4\ **Last updated:** [May 16, 2015, 9:26pm UTC](https://forum.livingwithpsc.org/t/describe-the-best-kind-of-support-person-for-you/644 "2015-05-16T21:26:46Z")
Can you paint a word picture of how you would like your spouse, partner, significant other, caregiver (or whoever is watching your back)to respond to your illness. Some things you might consider are; - Would you want you… [Next page](https://forum.livingwithpsc.org/c/support/14.md?page=1)