Newly diagnosed and feeling lost

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Hi everyone, thank you for adding me…I’m a bit lost and upset at the moment. I can hardly sleep or do much at all with myself.

I’d been having stomach problems since August last year and kept being told it was an ulcer or gastritis. The tablets never worked and I kept getting severe pains. I went through brain surgery in October to remove an AVM from my right frontal lobe. I had hoped to have a normal life after this. Then in December a doctor wondered if the pains could be gallstones so I had an ultrasound. They noted sludge and a fatty liver at the time but said little about it and focused back on the stomach again with gastritis. The pains continued even after diet and lifestyle changes with a big attack two weeks ago where I was admitted and told there was an infection in the gallbladder and they were going to remove it. I was so put off by the chaos of the hospital as they mixed me up with another patient that I requested to be moved to the care of another hospital in my area when I was discharged. The pain continued for over a week and I ended up in A&E again. I then had a severe attack on the Monday and woke up jaundiced on the Tuesday. My GP took blood tests and sent me to A&E at the new hospital where I was admitted. They did an MRCP and thought it was a stuck stone that had passed. They assured me there was nothing to worry about. After a meeting yesterday the specialist said she was still waiting on the is or is it blood test but that all signs pointed to PSC. Not much more was mentioned about it, only that it maybe could be managed but never cured. Is there any possibility that there could be another explanation for abnormal bile ducts?

She still plans on removing the gallbladder in 6 weeks time.

At the moment I am pretty devastated and don’t know what to do with myself, I have a young daughter, 3, and a lovely partner. I really wanted to have another child and a normal life but I feel all this has been ripped away from me in a brief conversation yesterday. I’m so lost at the moment and frightened of what lies ahead for me and my family. Financially we’re not in a good position as I was off work recovering from surgery so I’ve got not sick pay. I’m going to go back to work this week but I’m very tired a lot so can only do part time. I’m assuming applying for life insurance is pointless?

Sorry for my long post…

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Good Morning,

Im sorry that you have had to go through so much to get a proper diagnosis, years can go by before doctors diagnose you correctly with PSC. My doctor told me that the narrowing of bile ducts can occur when something is blocking them , like a stone, but in my case there was nothing and so I was diagnosed with PSC about 3 months ago.

I know how you feel , as I too initially felt lost and like my life had been taken away from me. Its easier said than done but concentrate on the positive, enjoy your daughter and your partner, everyday is a gift and never give up, Im sure you will live a long life. Keep a positive mind and try to not stress as that wont help you much. Many people live years before needing a transplant.

As for being tired all the time,thats part of PSC. Try drinking coffee, I was not a coffee drinker until after my diagnosis and it has helped me maintain a full time job as before I would get extremely fatigued at about 3, and now my body maintains a steady energy level throughout the day. I wont say Im super energized and bouncing off the walls, but Im good. Coffee has also helped me with my digestion as well.

I would suggest changing eating habits, but it sounds like you have already done so. Ive read different things that work for different people like drinking water with lemon, or drinking milk thistle. These of course are not cures, they help some people with managing symptoms. There are also medications you can consider like Urso, again not a cure, just helps improve your quality of life.

I suggest you find a good hepatologist in your area who will monitor you closely moving forward and help you determine the best time to get you on a transplant list.

Dont be scared, many of us are living with PSC, and many have survived it as well. Be Hopeful. we are here if you need anything.

Best Wishes
Vasni

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W33,
Sorry you are going through the wringer. That happens too many times.
I can’t answer your question about another explanation for abnormal bile ducts. An MRCP is a good diagnostic tool, as is an ERCP, which is invasive and subject to complications.

Keep in mind that a diagnosis like psc will take some time to get used to, to understand what psc is, what it does, and what can be done about it. True, the vast majority of what can be done is to treat any symptoms when they appear.

If it is psc, I would highly recommend you get to a liver specialist, a hepatologist, as they are much more familiar with liver disease than a gastro or GP.

Fatigue is a rotten symptom of psc. For your question of life insurance, I think that if you obtain it prior to diagnosis, it will be much easier than to obtain it after a diagnosis of liver disease.

One of the best things you can do, whatever the diagnosis is, is to focus long term while still getting through the daily stuff. Know that you will have bad days, but you’ll get through them.
Jeff

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Good afternoon -
I’m sorry to read you’ve had such a wild ride the last 8 months. I was diagnosed in Jan. 2018 after my liver enzymes were off the charts in October 2017. I’ll be honest, I did not waste any time getting to a hepatologist, skipped right over my PC and GI suggestion as I know my body and this was so very “un normal” as my enzymes were fine in May 2017 and always have been (I get blood work done 2x per year for other issues). I had lots of blood work at different intervals (all liver markers were way Up), ultrasound (all organs looked good etc), MRCP (showed preliminary schlerosing of my common bile duct), Fibroscan (normal). So right now my only issue, 5 months later is my ALP enzyme is still high and my fatigue is better explained as are other autoimmune issues that never made sense but now do. AST and ALT both came back down into normal levels within a couple of months.

As others have said, PSC is not the end of the line but we can certainly expect it to challenge us in ways we’ve never expected. Your fear and confusion I can relate to. The first strong month I was literally immobilized and had to force myself to “Keep Moving” and today, I still incorporate this mantra as I still have my pissed off, frustrating, scared and just overwhelming days where I’d prefer to shake my fists at the sky versus appreciate the sweet song that I’m still here and able to fight.
My fear and anger have not subsided beyond I have no choice but to accept this is my path and the clincher is nothing I will do will stop it. I’m not sure at what point we become more go with the flow of PSC diagnosis or if we ever do based on all the tough autoimmune side effects that come with it.

I still have folks to call when I need, and if one doesn’t pick up, I keep calling numbers. Sometimes just to hear a person talk helped to break my cycle. I’ve never cried so much, felt so incredibly helpless (I’m a single, very independent person and to not be able to have a say in my life health path just goes against my being in every way), felt so insanely overwhelmed, slept so much, couldn’t get out of bed so much… studied and read so much… you name it. I also have had panic attacks. Not just the PSC but my life is very unstable in so many areas due to the past 5 years and PSC diagnosis plus cervical cancer issues at same time put me over an edge Nov to Jan. diagnosis.

That all said, here is it March 21 and I’m doing better - far from content, but better. It is so normal what you are feeling. Please don’t ever feel you need to apologize. Continue to gather up your support system, whatever that means for you, and fight to see specialists in this area - it breaks my heart what you’ve gone through due to pure inexperience.

You’ve come to a great place for support and knowledge. There are also two FB sites that I joined that have also been very beneficial. I’ve already connected in person with a man from Idaho who will be relocating to Seattle for imminent transplant due to center expertise and insurance reasons, hoping to be able to provide a place as needed during his journey. Another woman in WA state, we both share the love of horses and I will go visit her in May! So on the upside, I have met some very wonderful and caring folks and encourage you to make time to reach out. My experience is still, most average folks just don’t “get” the magnitude of what we feel and face and I learn so much from reading other’s words.

Finally, I did start on Prozac (very small 10mg a day) and it made a difference late last year. I also have a back up of anti-anxiety meds to use when needed. For me, when a panic attack comes one and within hours I’m still struggling, this is when I take it. If in public, I have to take right away. Just how it rolls for me. My point, if there are other methods to support you during this hell window, please don’t hesitate to ask and fight for them. And fight we do - but it is Our Peace of Mind and Personal Well Being. Not theirs. Never forget this.

Much Hugs and Luvs…
Jennifer

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W33JNN,

I hope you are having a better day today. I was diagnosed with PSC 2 years ago and it blindsided me. Here’s my response to your post (sorry if this comes off a bit short, I’m pressed for time today):

  1. If you fight fatigue with caffeine then make sure you are drinking a ton of water. Caffeine will dehydrate you. Also, coffee is acidic in nature and tends to rip my stomach up and cause my colitis to flare up, I would suggest a lightly caffeinated tea instead. I personally stay away from caffeine.
  2. Take 10-30 minutes in the middle of the day to meditate, this can help with your fatigue and emotional stress. Plenty of great apps out for this, I just started using Headspace on my iphone. Close your eyes and work on your breathing, don’t listen to the mean voice in your head, BE KIND TO YOURSELF.
  3. Get 30 minutes of cardio per day. I use a stationary recumbent bike because I have lower back problems. I usually watch tv or play video games while I ride. This will help with your energy levels and your happiness. If you can’t do 30 minutes, then try to take a 10-minute walk in the sunshine. Yoga is fantastic too, just to stretch and feel renewed.
  4. I hope this doesn’t embarrass you but I think you should reach out to a mental health professional (therapist). Your life has become incredibly stressful and you should not try to handle it on your own. People who are sick are also prone to depression. We are sick. Therefore, it is a good idea for us to seek mental health help. My wife goes with me, it has made us 10x stronger and helps her understand what’s going on with me. It also helps me understand the stress it causes her. And finally, it helps me understand what’s going on with me. We cry, we laugh, and then we walk out healthier. Every time.

All of the points mentioned above should help you and don’t be scared to invite your spouse and daughter to join. For instance: have a tea party every morning with your daughter; have the whole family meditate for 10 minutes at 6 pm every night; take a family walk around the block after dinner; go to family therapy (family therapists exist and are wonderful).

Respond back with questions or concerns or let me know what works. This group is here to help!

Wishing you the best,
Eric

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