[Sorry I had sent this out the first time using the wrong type of message format. This one let's you respond directly to the thread.]
Ben's Friends is made possible by generous donors who help pay for the costs of maintaining our network. They share with us, and we would like to share your story with them. Post what Ben's Friends has meant to you!
In your post, we'd love to hear a bit about your Ben's Friends story: how you were welcomed, what the support of your peers did for you, how Ben's Friends has made a difference in your life and your family's life, or how being here has changed how you cope with your rare disease. Or anything else you can think of!
It doesn’t have to be long. And if you’d rather share your story privately, send a PM to me, or to ModSupport (find them in the members section.) Would you rather do a video testimonial? Even better! Send a PM to ModSupport. They will tell you the easiest way to do one.
Your turn! What has Ben’s Friends meant to you?
Mark Wilson, Moderator
When I was first diagnosed in June of 2014 I went online to find out what PSC was. Scared me to death until I found this support group! First and foremost I found support and hope! Then I found a wealth of information from people living with my rare disease! I was also linked with people who got how I was feeling when family and friends didn’t get it…why I looked healthy but still was debilitatingly exhausted. This group is helping me to grieve my old self while finding balance in my new life. When a family member or friend makes a cruel comment I have this group to turn to so I can process and move past it! In addition it connected me to research sites and the PSC registry so we can help Scientists find a cure for this awful disease!
I was first diagnosed with Crohn’s (1991) and then with PSC (2004), so it hit me hard but maybe not as hard because I was used to managing my life with Crohn’s (lethargy, abdominal pain, bowel issues, and weight loss). Over the last eleven years I have been managing both illnesses – survived colon cancer in 2011 with a full removal of my colon/large intestine – and pretty much lived in denial. I worked and traveled constantly for my job, ruined my marriage, didn’t take care of myself, and sabotaged all my relationships since my divorce eight years ago.
Just recently, I threw in the towel and have applied for disability so I can focus on my health, my two kids, my outlook, my relationships, basically get my life back. This site has helped me along the way. Each time I read about someone bouncing back it inspires me to keep on keepin on until I get my transplant.
Thank you to everyone at this site, to those that donate to help us, and to my family and friends for their unconditional love and support.
I joined Ben’s Friends for support when my husband’s PSC was exacerbated in 2014. Jim had been diagnosed at age 47 with PSC and was fortunate enough to have no problems with his disease until just after his 64th birthday. I was welcomed into the group and felt an immediate connection with quite a few people. Their comments and suggestions were very helpful and I read everything to my husband. After his horrific hospitalization last Fall, I discussed this on the site and received very empathetic and kind comments & support.
Recently I posted what has happened…my beloved husband passed away from his dreaded PSC on October 27th, 2015. I have received some inspiring, sympathetic, empathetic, and uplifting replies to my post called “The Final Road.” I have cried reading each and every response. I know that I’ve been comforted knowing that these replies are genuine and come from the heart. I will continue to support Ben’s Friends and hope to help fight PSC somehow, someway and I will comtinue to pray that a cure for it will be found so no one else has to suffer the way my husband did. Liver failure is a horrible thing, and to see it happen so quickly ( worsening end of July, hospitalized 6 weeks later with hopes of getting a transplant, but passed passed away 6 weeks and 4 days after that hospital admission). Thankfully, we were able to get him medically transported to our home in Macedon, NY 2 days before he died. PSC has forever changed me. I commend you all for the wonderful job you do to allow people to connect for the support they need. God bless you!️
I was diagnosed with PSC in October 1991 by the end of December 1991 I was giving only weeks to live and by the grace of God I received a liver transplant on Christmas Eve 1991. My story started in August of 1991 I was a 16 year old athlete super excited to start my senior year in high school. My basketball team was invited to a tournament in south Lake Tahoe. I was thrilled! You see basketball was my first love, it’s all I ever wanted to. So we get settled in Tahoe and out of the blue I had diarrhea and it was non stop. I didn’t know what was going on but I was too embarrassed to say anything. After returning home my symptoms seemed to progress and I was going to the bathroom 8-10 times a day and I was cramping. As school started in September I was unable to make it pass 3rd period because I was going to the bathroom so frequently. It was so urgent I was not always able to alert my teachers I just had to go!! I finally went to the doctors and he couldn’t figure out what was going on. He new it was my liver but the but not the cause. I was sent to a specialist and was told that I needed a tube to drain my bike but that I should be good in a couple of months. A biliary tube was put in but before I was released from the hospital they had received my pathology report on the endoscopy. I won’t ever forget this day for two reasons it was the day Magic Johnson announced he was HIV positive and I was told that I need a liver transplant. I was told I had 3 choices of transplant centers UCLA, USF or Stanford. My mom asked who was the best. At the time is was UCLA so my mom said then that’s where we’re going. My doctor quickly explained to my mom that the there is a long wait list and I probably wouldn’t make it. My doctor then explained that Stanford is available and can take me now. I would be the only person on the list since it is a new program. Long story short I went to Stanford that day not long after admission I was finally diagnosed with PSC. My life has forever been changed. PSC can completely disrupt your life if you let it. I was recently retransplanted in June of this year after 23 years PSC came back and was determined to take me down but God said NO!! This time I was within hours of death and received another life saving liver transplant. My story is long so I will stop here. However I will post more of my story regarding symptoms and the things I went through prior to my second transplant. I hope my story is helpful.
I owe the healthiest years of my adult life in large part to Ben's Friends. I was diagnosed with PSC in 2001 when I was 19 and promptly ignored the disease until I was hit with hardcore symptoms in 2013 and was referred for liver transplant. I was frustrated with the established treatment plan (do nothing until sick enough for transplant) and cast a wide net for alternative options. Ben's Friends discussions tipped me off on the use of oral Vancomycin to treat PSC. I brought the research to my doctor (much of it pulled from Ben's Friends) and I tried it out for myself. The last two years have been a miracle: no fatigue, no cholangitis attacks, no itching, and normal liver values. Everyone on Ben's Friends has been very supportive and the board has been incredibly useful for swapping ideas and experiences. This place gave me hope and I have learned a ton from the experiences of other people.