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