Quantcast

Primary Sclerosing Cholangitis (PSC) - Online Support Group

Just got to the PSC party


#1

Hey Everyone, my name is Kurt, I’m 37, I live in Phoenix, AZ and I was diagnosed with PSC and UC just three weeks ago.

It all started just after Christmas when I developed diarrhea that didn’t go away. I went to my primary doctor a couple weeks later where they took blood and I submitted a stool sample. The blood test revealed elevated liver enzymes so they referred me to a GI specialist and to get an ultrasound. Stool samples were negative, but the ultrasound revealed a kidney stone (which I knew I had, so that was no surprise).

I didn’t much care for the 2 minute consultation I had with that GI, so I called the Mayo Clinic instead. They recommended that I send them any test results and a list of symptoms prior to my first visit, so I created a journal of sorts documenting medical history, timing of symptoms (including itchy skin for a number of years) and sent it all their way. My first consultation was with a hepatology specialist and after a half hour of talking with her and reviewing my blood test results, she felt everything pointed to PSC and UC, but wanted to confirm through other tests. She scheduled me for more blood tests, an MRI and a colonoscopy. A few days later, I met with the hepatology specialist again and she confirmed PSC, and their GI confirmed UC. Hepatologist told me that she and I would become good friends, lol.

Though the diagnosis shook me and my wife, I will say that the people at Mayo have been fantastic to work with. From my first appointment there to an official diagnosis was only 3 weeks. I feel very fortunate that I was able to get in there with those experts and they were able to figure this out so quickly.

Fortunately, the PSC is largely asymptomatic at this point, but the UC is taking center stage. GI prescribed me balsalazide which I’ve been taking for almost two weeks now and it seems to be helping with the UC pretty well.

I’m not quite sure what to think at this point. I think I’m still in the phase of not having fully accepted the diagnosis yet, but I’m getting there. At least now I know why I’m so itchy and tired! I thought the itchiness was from caffeine, so I stopped caffeine altogether and that didn’t really make much of a difference. And I thought my fatigue was from the fact that I have a (now) 4 year old super active daughter. Never thought any more of those issues. But now I know…

My wife and I have done a lot of digging online about this disease and what it will mean for our lives moving forward. There is a ton of information out there and it can be overwhelming at times, so we try to just take it in small doses and learn as much as we can.

Anyway, sorry for the rambling post, but I just wanted to introduce myself, tell my story and say hello to the group. I’m sure we’ll get to know each other well soon and I’m happy to have found such a supportive group

  • Kurt

#2

Kurt,
Hello and welcome to this PSC community. I’m glad you found us and I trust the information you will glean from here on this forum will help you as you live your life with PSC, prepare for the future and always have hope.
I’m so glad you dumped that GI doctor as quick as you did. You made the right decision to go to Mayo and put yourself under the care of a hepatologist. Stick with them, they will be your friend through these years ahead and when the time comes will help you get on the transplant list.
I know that the diagnosis and all that you are learning about liver disease has been frightening. You are thinking about your wife and daughter and what will happen to them. Well, you are going to walk this road together and will need one another through it all. Concentrate on living one day at the time. When you have good days, try and not think about the PSC or UC and when the days become difficult, surround yourself with those you love and they will help you through the difficult days. Don’t give up hope, don’t stop planning for all the dreams you and your wife have for your daughter and future children possibly in time. Although there is no cure for PSC yet, you must just face that and do all you can to live a normal life. I know it will be a struggle at times, but you still must bear up with it all. Don’t hide all this in a shell, it will eat you up. You need to educate those close around you that you know care about this disease. This is nothing you have caused, it is not because you were a drinker or anything like that. It just happens to some of us and that’s just life. Could be cancer, could be a bad foot with diabetes, well we just have PSC!
We are here for you Kurt so if you have any concerns, questions, etc. feel free to ask. Once again a warm welcome to you. And as you said, forgive my rambling as well.

Mark
PSC 2011 / Liver Transplant 2015


#3

Thanks for the warm welcome, Mark. My wife is my rock and she’s already been a huge support. Whatever comes, we’ll get through it together.

I’m sure I’ll have a million questions but it’s good to know this group exists. I’ll definitely be on this site a lot.

Kurt


#4

Hi Kurt,
So much of what you wrote resonated with my experience when first diagnosed with PSC. I had been diagnosed with UC about ten years before, but now, this new animal called PSC took center stage. Learn together. It will affect both of your lives as the years go on. The challenge is to live life as normal as possible, doing the things you love to do. Share what PSC is about with people. Having been a teacher, I decided not to hide the disease from people. It was amazing to me how supportive people were.

Mayo in Rochester, MN was helpful to me after another hospital took me off the transplant list because they saw abnormal cells that looked like cancer to them. Mayo is top flight! They did another ERCP procedure, reviewed the cells with the oncologists and said I did not have cancer. They put me back on the transplant list. Within the year, I received a living donor liver transplant. That cured my PSC.

This forum exists so you can “ramble.” That’s how you learn. You will find some good friends here.

Paul


#5

Thanks for the reply, Paul. My wife and I have definitely been learning as much as we can and we’ve been sharing with those close to us. The research can be overwhelming at times, so we take it in small chunks. I’ve been very happy with Mayo so far and I’m sure I will continue to be as I continue on my journey.

I’m happy to hear that you got the right doctors involved, they were able to get you back on the transplant list and that you are now PSC free. That is fantastic news!

Though the idea of a transplant scares the crap out of me, the idea of being potentially free of this disease and living my life sounds great! I’ve read a few posts about people having a transplant and being PSC free and it gives me hope :slight_smile:

-Kurt


#6

How do you get a refferal to the Mayo clinic? I live in SLC Utah. Does anyone know if there is one around my part of the woods?


#7

Tsohg,
Mayo Clinic has liver transplant programs in Arizona, Florida and Minnesota. You should be able to get an appointment without a referral. For more information go to this web site and contact them directly. I hope this helps.

Mark


#8

Hi Kurt,
There is some serious truth to your post title. I now have a few wonderful new friends since my diagnosis January 4, 2018. One has moved to Seattle for transplant center, and just last night a bunch of us went out dancing. Another that I also connected with thru the FB PSC groups - I will head to her home town and I will be back with horses. Have not ridden since my early teens and raised my own on the farm. Finally, another reached out from this board and we talked for the first time last week. She is the caregiver to her husband who was transplanted in the last year. There is a lot to be said sharing our journeys with those that know and understand. For myself, it has restored a bit of my faith in humanity actually. Feels good, real good to connect.

I know well the overwhelming feelings you speak of. 3 1/2 months in, its still a mind mess. I’m an information freak and I literally have to tell myself No as PSC is big and it’s a big deal and everyone truly has a different story and path. Yes, we still live Life, but it now has an unexpected twist that I’m not sure I’ll ever feel at Peace with.
I found this forum while researching. I feel very safe here to express as needed, let it out and know we are here… and the party is always going! :slight_smile:
Jennifer

Ps. When I first posted here a woman wrote: Be Kind To Yourself, Love Your Liver. Never in my wildest dreams did I think I’d be reading something like that… but it’s our Truth. Give yourself the down time you need to process… for myself, it’s pretty lonely and I’m learning how to ask for support