Diagnosed January 2018

Welcome New Member Introductions
1

Hi Everyone,
3 weeks later I’m finally able to introduce myself. I could not do so sooner as it made my reality that much more REAL and I have been struggling with it as is. I’m a 53 yr old, single female. In May of 2017 all my blood work was fine. Standard physical in October 2017 and my liver enzymes ALT, AST and ALP were quite high. I freaked as this was not at all the norm for me. My diet is good clean food 98% of the time, always had a healthy weight, I exercise and my worst vice was alcohol to deal with stress, etc. My primary care doc suggested we wait 6 six weeks and test again - I was like heck no and found a hepatologist. I also read A LOT about what can cause everything to go so haywire.

Like many of you understand, I had a ton of blood work done over the next few months at varying intervals and my AST and ALT came back down into normal levels by end of December 2017. My ALP remained high but had also decreased. Other blood markers showed issues with my Liver, some very high. I did have some bone markers low and high - but she was not concerned. At this juncture an MRCP was recommended (MRI of my bile duct). Sure enough, I have preliminary PSC. This also explains the small discomfort I feel that I thought to be acid reflux or just the need to eat antacids.

PSC is autoimmune based and according to my doc there are three types.
I forget what type 2 is - as when she explained it, I knew I didn’t have it. Type 3 is more autoimmune based and attacks other organs or ducts or veins etc. Type 1 typically only attacks the bile ducts themselves. We then tested my IgG 4 levels to determine if possibly I have Type 3 PSC. If so, she recommended a liver biopsy to confirm. And if this was confirmed, then going on immunosuppressants was recommended to assist in slowing the progression of the disease. As it turns out, I don’t have Type 3. I have Type 1 and my doc said that she does not recommend suppression as they have found that in a Type 1 diagnosis that it is more detrimental than beneficial. She also said no liver biopsy unless absolutely necessary due to infection risk.
The good news is my ultrasound showed no issues with any organs and the liver fibroscan (liver rigidity) was in normal range. So like many of you it’s now just a wait and see game of what’s next and when. The flip side of good news is that the IBS issues I had in 2015 and the beginning of 2016 are now explained. Colonoscopy was done after they had ceased so we did not do the 20 plus biopsies, just the standard 2 or so. So part of me knows that IBS and UC are very likely in my future. I also do not doubt that a lot of the physical sicknesses and issues I’ve had since 2014 are related.

I too have done a ton of reading and research. I don’t like the fact I already show signs of the disease itself and other issues related to it. It’s unnerving that I’ve had it for a bit of time already. And it seems Time is my greatest Fear. I’ve always lived my life knowing all will work out based on my Actions. To deal with a disease that cares nothing for my actions was a big pill for me to swallow. Simply, what is will be and there is nothing I can do to change this.

I don’t know how many times I’ve been to hell and back emotionally in the last 3 weeks. I do know, I’ve never cried so much, felt frozen and numb to the point I could not move for up to 20 hours a day. Panic attacks came and went like the norm of life. To deal with this alone has been the wildest ride ever. I have distant family but nobody to truly comfort me 1-1, and this I found was the most difficult as how does one cope with a new reality like PSC and function and find the energy to research and understand. Knowledge at times a downward spiral, a double edged sword. Even now as I type my experience I can feel the tightening in my chest and the beginning of numbing in my fingers. However, here I am.

It’s interesting how our perspectives change with a diagnosis like PSC. I have had many moments of Ahh Hah that were a long time coming and I have found that it’s easier to make decisions when they do. I’m not recommending making drastic decisions during times of serious emotional and physical upheaval- I’m saying listen to all of it if you can, as I have found, I am letting go of many things, feelings, thoughts, actions, even “things” that just now seem so OBVIOUSLY wrong for me or not necessary. I hope this makes sense.

It seems so wrong to be planning my retirement in my 60’s-70’s not for travel and fun and living Life Up but possibly for serious illnesses or new liver if I’m a lucky recipient. This messes with my head too as sure I can save for my disease (which still pisses me off!) but who will be here to help me through it? Having family can be hard as it hurts to watch them go through it, or the guilt one might feel about putting them through it and being so dependant. However, EMBRACE it if available to you. They are a true gift.

3 weeks later - I woke up today and was like, wow, I feel “normal”. I didn’t feel like lying in bed for hours, even if I did for a couple. But this morning it was more just taking in the “chill” I felt and allowing myself to enjoy it. I don’t trust it to last as I know how vulnerable I am now and I know that this is all very new. It will take time to digest it all and from here cope and deal with what comes next. However, today I could see Light and not just Dark. Embrace those days. Time is not only our enemy but also our healer if we listen and allow it to be so.

Love and Peace and Light to all here

3 Likes
2

MZZP,
Thank you for your sharing your story with the group. I first of all want to tell you that there is hope, there is a continued outlook for a full life and that you just have to take one day at a time. You are doing all the right things from what I’m reading so just keep educating yourself all you can about PSC. Alcohol at this point is a definate NO. It will only compound the disease progression, so please discontinue. Don’t think you will have to retire in your 60-70’s. If you follow your doctors guidance, stay as active as you can to keep your strength up, when the time comes possibly for a transplant down the road, you will make it. I had my transplant at 51 and today and doing great, working 40+ hours a week and loving every minute of it. It’s very important that you engage your family or close friends in your diagnosis. You need a good support team in place, you need to educate them about the disease, and I’d suggest you take someone with you to each appointment with your hepatologist who can take notes and help you remember the things you need to ask and those things you are afraid to ask. Don’t bottle it up all inside but reach out to others. You’ll be pleasantly surprised how it will affect your over all outlook on life.
We are here for you, to answer any questions you may have and help you along the way. Good luck and again a hearty welcome.

Mark
PSC 2011 / Liver Transplant 2015

3

Hello Mark,
Thank you. Your positive outlook is uplifting even if I yet to really feel it myself. My cousin, she had PSC for 20 years, 10 with a new liver. None of the complications or cancers that ensued took her out - she fought and beat them all one by one. The final straw was the stint put in her portal vein prior to transplant could not be removed in full as it was too long and a portion of it had to be left in at transplant time. It was the continued build up of scar tissue that eventually killed her. This disease is so rare and to have 2 of us in the family have to face it gives me much pause.

So, thank you much for the warm and thoughtful welcome.

1 Like
4

Thanks for your reply MzzP. One thing that has really been something that I have advocated for is that we avoid stents like the plague unless absolutely necessary. I think sometimes the doctors performing ERCP’s are not considering the fact that scarring will occur around the stent. I’m sure they are mainly just trying to get bile to flow and don’t always consider the other. As sick as I was, they never put a stent in my bile ducts, and thankfully I never had one instance of infection, hospitalization, etc. I believe the stents are breeding grounds for infection and cause multiple other complications over time. The day of my transplant, I walked into the hospital infection free and was able to go through the surgery and afterwards without some of the complications our other patients here on the forum have gone through. So, in all this, I just encourage you to mention to the doctor doing these procedures on you to try and just do balloon dilation whenever possible and avoid the stents. Take care and let us know how you progress.

Mark

5

MzzP, there were several lessons I learned in going through my UC and resulting jpouch that really helped me deal with the roller coaster of psc:

Focus long term-we still have to get through the daily grind, but if you dwell on the daily “stuff”, it will drive you crazy. Focusing long term helped keep me grounded.

Develop a sense of humor. It will be vital.

Accept the fact you will have bad days. They will happen and helps to make you appreciate the good days.

Remember that any day out of a hospital is a damn good day.

Never give up.

I hope this list helps.

6

Hi Jeff,
Yes - I’m working on this daily. It’s a fine balance for sure. I don’t wish to deny myself the time to grieve what once was and at the same time, Life doesn’t stop and so neither can I - even if at times I’m not sure my purpose here anymore. My life has been a hard ride for 4.5 years both mentally and physically due to factors that were not fully in my control… and PSC plus a few other incurable physical ailments just put me over an edge in less than 2.5 months. I’m scared for my body and what it can or cannot handle as I seem so vulnerable to so much the past 10 plus years.

That said, developing a sense of humor is high on my list - thank you for your raw and straightforward advice. :slight_smile:

Mark - my doc feels the same about stents as you. Your experience with PSC gives me fresh hope even if a part of me is jealous that you are on the other side - but jealous in all the right ways of hoping I too one day join you with open mind and heart.

1 Like
7

Mzzp.

Thank you so much for sharing your story. Do not lose hope. It is very scary hearing this diagnosis. My 33 yr old husband was just transplanted 2.5 months ago. It was a wild ride…hard…painful, yet full of unbelievable joy and understanding. He is doing so well…the transplant was such a beauiful gift. We didnt know that it would look and feel the way that it did after all of the struggle (he was deathly sick and his meld was not going high enough to qualify for a liver)

I will agree with you-family is definetly tough. Sometimes a disease like this brings people together, sometimes it doesnt. We found great care and support on this site and also an awesome mentor that made recommendations that got us through this (along with LOTS of prayer!)

Looking back we are so glad we got to go on this journey. We have a newfound thankfullness for life. Each day has become so beautiful and important.

You never know what the future holds. (I believe God is watching over you and leading you to something really beautiful…who knows, maybe youll fall in love on this site with someone wonderful who truly understands you!!!)

Im so thankful that you were able to come on here and share what you are going through. Most of us have been there. I am proud of you for getting up today and deciding to keep on living! Live passionately. Chase after your dreams!! Travel!!!

I hope that you get insurance organized. Please private message me if you have other things you want to discuss. You have support here for you and people who care.

Marissa

1 Like
8

Hi MzzP,
Your story strikes a familiar tone. I think many if not most, of us PSC’ers can identify with the intellectual need to know and absorb all you can about this foreign disease. And, we can identify with the emotional roller coaster, the feel good days and the feel lousy days that are all part of PSC.
Try to do something about the loneliness issue. Ask at your hospital if they know of a transplant support group. I found one before I had a transplant and they were a wonderful support for me. It doesn’t have to be a group. It can be a friend or the social worker at the transplant hospital. They are a good source to help find a support group. And, this blog is filled with caring people. You can write and communicate as much or as little as you like. I got a lot of my support from people on this blog. A transplant cured my highly advanced case of PSC six years ago. I wish you many more good days than bad days. Follow what your hepatologist says and take your meds all the time!

9

Thank you so much… I’ve read and re-read your note many times. Today I don’t feel the hope and tears and frustration come easily. But I did get up and will go on my walk and clear these negative cobwebs and take on my day.
I so love the power behind your belief in me and what’s to come.
Many blessings to you and your husband and very happy to hear he is doing so much better now that he has made it to the other side. Your story like so many others leaves me at a loss for words really - and mostly, they give me the knowledge that anything is Still Very Possible.
Even for me

10

Hi Paul,
It is always feels good to hear that this still daily roller coaster is “normal”. I can have such a good start or end or middle but have yet to have a full day of just being. As I slowly let my close friends and family know, it just drains me still, sometimes to the point of feeling nauseous. As I mentioned earlier, it just makes my new reality so Real to talk about PSC. Once this passes, I do feel better… so I know.
I’m truly struggling and worn down from the past 4.5 years and finding the strength to fight this! something I cannot change the course of just still takes the wind outta my sails. I met my match and my tools are worn and I’m scared on many levels.
Your suggestions are priceless - funny how these things don’t come to mind even though I know hibernating and withdrawing (which is what I do when times are hard) is Not in my best interest. How I forget the “obvious” even when I know it will be hard, but in the long run, make life easier.
Thank you and many blessings to you on your journey. It brings smiles to hear you are doing so well 6 years later.

11

Dear MzzP,

PSC can turn your body’s immune system towards destroying your liver that saps all the strength out of you. It is a cruel disease. I feared what people would think for awhile. The mention of liver disease immediately leads people to thinking alcohol abuse or Hepatitis C from needle sharing. Neither were a correct conclusion, but you know how people are. My career played a large part in helping me deal with this issue. I started my adulthood as a teacher. As you know, teachers talk a lot, explain things to their students, correct mistakes and cheerfully recognize it when the students get it right. I moved on to be a principal, school chief financial officer, school superintendent and grad school instructor. But, I never stopped being a teacher. I made a conscious decision to educate people about PSC and what was happening to my body. All of these positions kept me in the public eye, so it was impossible to hide the tired look in my face, the jaundice and water retention that were obvious to any observer. So, I began teaching everybody who wanted to learn about PSC and my choice to keep working until I no longer could.

I even explained the disease to seventh grade health classes. People are caring and compassionate. For some, it is hard listening about dangerous diseases, while others feel that the mask has been ripped off and they have seen the reality of the disease in a real person that they know. It widens their understanding that not all of us drank our livers into disease. And, it naturally leads them to want to know how (and if) you will get better and what are the treatments. The response from people I worked with and met gave off positive energy that helped to get up and go to work every day. It was a teachable moment every time I told the story to someone. I felt good to be out in the open. I felt courageous telling people I did not know the future, but that right now I am not willing to yield to what the disease was doing to me.

People respond very positively to you. They go out of the way to check on you, and engage you in conversation. The social interactions of human beings produce positive, healing energy in you. I felt surrounded with people that care and understood. Three years later, a group of my co-workers (teachers, custodians, staff, administrators) huddled outside in front of the middle school’s sign, coatless in the winter with the message on the board, “Get well, Dr. Toughbugger.” I was just waking up from transplant surgery when my wife gave me that picture. It meant so much to me to know they were all thinking and praying for me. I had the picture posted on the wall so I could see it all the time. It made me smile and feel better.

You can find your own experiences to unleash that healing energy others provide when they know what you have. The negative fears I kept inside just went away. When asked, I told people about the ups and downs, the roller coaster you feel. What you wrote in your email about not much energy reminded me about what I went through and learned. During the day, I had trouble staying awake and had no energy. At night I could not sleep. I learned from doctors at the hospital that the liver does at least 500 things for the body. Sleep and awake are just two. When the liver is not well, it does not produce the Seratonin enzyme that keeps you awake and Melatonin enzyme that makes you sleep. They had me try medicines that helped overcome the sleepy tiredness and some to help me sleep. I wish I could tell you that was a perfect cure, but it only helped make things better. Any little bit of relief from PSC symptoms was greatly appreciated!

I was diagnosed with PSC in 2000. Some people with PSC get along pretty well as a chronic disease with medical management. Not me. My liver got so bad that I had to resign my job in 2010. I continued to deteriorate. I was placed on the Transplant List in Milwaukee in 2009. You can be listed in more than one transplant region. So, I also get listed in Univ. of WI, in Madison, Wisconsin and finally Northwestern Memorial Hospital in Chicago, where I received a living donor transplant in February 2012.

It is a long journey, and it calls upon you to keep your endurance strong and your spirits positive. On a routine visit to the transplant hospital, a nurse asked me if I was depressed. I thought a moment and answered that sometimes, SOMETIMES I have those low moments in private when I think about all that I face and the uncertainty that goes with it. The nurse thanked me for being honest and said, anyone with serious illness that doesn’t admit they get depressed is lying. They gave me an Rx for depression. I used it once and a while over three years. After my transplant, I found it in the medicine cabinet, smiled to myself that I needed this at one time, but not any longer. I threw it away and let it fade into just another chapter in my PSC journey.

I hope you find something I wrote to be helpful to you. There is a healthful energy in others around you. Healing comes from within. Letting go. Risking what others might think. Being strong if you face rejection or suggested fears about your progress. Brush them aside, though real they may be. You are in the fight for your life. Through it all you will win. Write if you want to talk about things. Anytime.

Best regards,

Paul R. Hain, Ed.D.

P.S. Nausea? Ask your doctor if they will write an Rx for Ondansetron Orally Disintegrating Tablets, USP 4mg. This really works well at controlling nausea. Let it dissolve under your tongue for fastest relief.

2 Likes
12

Paul,
Your story was a lot to take in, the reality of it all still shakes me up but your strength and fight and personal experiences gives me much hope too. Thank you for being so open and honest and sharing, there is much for me to learn as right now I’m still just so angry and upset about it all on so many levels. I fought so hard to get where I’m at and to find out now that where I’m headed is so dark and unknown is beyond my comprehension. How does one become OK with this and live like it’s the norm to have this weight hanging over our heads and eventually upsetting our life path with extreme sickness that we hope to live through?

I don’t know - today is a rough day of reality for me as I kinda preferred not knowing my future as nothing I do is gonna really change it. And I’m struggling to fight… not every minute of my day but still much to often and this conflicts so strongly with how I would normally approach major life obstacles.

Growly morning… lol, thank you for listening!

13

Dear Mzzp,

I have some hopeful and helpful information. I was diagnosed with PSC and UC at age 50 and am 68 now and still hace my original liver. PSC is unpredictable and that means you may keep your normal life and activities for a long time.
My life became limited by fatigue five years after diagnosis and I retired. PSC changed my life but didn’t end my life. I had different plans but those had to change and in some ways for the better. I started a support group for people for PSC. My hepa. helped me contact other patients and was our medical advisor. When that group ended I went in to other interests.
Some good news is medical research is closing in on treatments and cures for PSC. I’m very optimistic. I’ve been in 3 clinical trials. Just google “clinical trials” and you will fund a government site listing all clinical trials. Search for PSC and you’ll find PSC trials.
I recommend that newly diagnosed PSCers attend a PSC Partners conference. This year it’s in Sacramento in June. It’s expensive but I rhink they offer free admission if you need it. You will meet hundreds of people with PSC and find lots of support. They have doctors and researchers who make informative speeches and answer all your questions. These conferences make you feel much better and you leave very well informed.
Finally, PSC is a marathon that lasts many years. You may feel grief, depression, frustration and self pity during this chronic illness. You mental attitude can go a long way towards you satisfying happy future. I’ve certainly learned not to sweat the small stuff. I’ve gotten a lot of help frim a book called “How to Be Sick” by Toni Bernhard. She has been bedridden for 14 years by a mysterious disease. She teaches acceptance and compassion. But, most importantly you must find your own path to joy and life even though your body is ill.
Another good online support group is Chronic Babe which is upbeat but recognizes the difficulties of chronic illness. Chrinic Babe helps us deal with rude comments and unwanted advice from well people and helps build suppirt networks. There are several online sites supporting folks with chronic illness.
I wish you the best and hope your PSC is slow with few complications. Love your liver and be kind to yourself.

14

Mzzp,
I think those with psc face a decision of balancing acceptance of having psc and wanting to live life as they want. How far do we go before it becomes denial? These decisions are pretty personal.

The kicker of this mental roller coaster is that there is no one good answer that fits everyone, as they vary by situation/person.

But having a solid mental grounding will be of immense help in dealing with psc.

1 Like
15

Hello Jennifer,
More wonderful information, thank you so much. And thank you for sharing your story with me as I work toward unfrazzling my brain about my diagnosis and what it means to build a support group. This is the hardest part for me Now - being so very single and not surrounded by long time close friends, readily available family or a partner. I was nervous for rotator cuff surgery 2016-2017 on my own but it went well and this does give me some courage to face PSC on my own while I figure out how to better accept this disease that took my cousin, ask for help and understand just what it means to “need” help. I foresee my planning brain having to learn to roll better with unknowns lol

Many blessings to you and 18 years and counting. I tell my 85 year old neighbor that I plan to catch up to her one day, and I really do.

1 Like
16

Yes, that seems to be a very consistent theme here - Solid Mental Grounding. I appreciate you circling back as each day for me still seems to roll around from one extreme to another - just maybe not as often.
Progress :slight_smile:

17

Hey there, MzzP!

I see you’re in Seattle. I’m in Seattle as well, and I’m happy to provide any advice or support that I can. Feel free to get in touch or not–no hard feelings either way. :slight_smile:

Take care,
Derek

18

Hi Derek,
You know, I actually broke into tears seeing this post - thank you.
I will be in touch as Yes, I could really use some extra mojo as I digest my new reality. And just hearing you are here and in Seattle truly changed up my vibe / attitude this day…
I’ll take it!

19

Dear Mzzp,
It is tough to have health problems and be alone. Please consider me part of your online health support group. You made a great first step by finding a hepatologist. I hope you will find a liver support group. Another disease PBS is similar to PSC and more common. You might have better luck finding a PBS group. ( primary biliary sclerosis). I would not recommend a transplant group unless your disease is very advanced. You might ask your Dr. for help finding or starting a group. Starting one takes minimal effort. If you can afford it, seeing a counselor helps a lot.
Please write again if you have questions or need moral support.
Jennifer

1 Like
20

Hi Jennifer,
Thank you. It’s just so overwhelming at times is all. Like today - just such a beautiful day and all I feel like doing is crying. So not me! I am scared and although I refuse to stop my life and put my goals and dreams on hold, it’s just a lot to process doing life let alone adding in this plus some other health issues that came about at the same time as my PSC diagnosis.

Baby steps and as I find some greater balance I will reach out further, just right now I can’t take anymore - this is where a partner would be so wonderful. They can do some research for me and tell me about it versus the hours I’ve spent already so I can focus on my Life. Or that person to just hold me and say it’s gonna be OK… hang in there, I’m here. To give ourselves this Support and Process the reality of it all… not sure how to make this happen. But I’m trying and today is just that day of total… mental sadness.