At 56 years old I’ve had UC for over 20 years. I’ve mostly managed it with diet, having only occasional issues. My health has mostly been good since then and I have been active and kept in shape. My PSC journey started in 2017. I had battled very bad itching and general fatigue for a couple of months. After multiple doctors visits I eventually had a set of blood tests done (prompted by obvious jaundice.) This led to a hospital admission, four days in hospital, multiple scans (MRCP) and blood tests and a diagnosis.
It also lead to my first experience with Cholestyramine which helped the itchiness reduce greatly. It was such a relief to get sleep.
I hoped things would settle from there and I could get back to a more regular life and look forward to being fully engaged with and available to my children. Unfortunately my symptoms got worse and my numbers rapidly got worse including a raised INR. Less than six months later I’m dealing with fatigue that limits my activity, a renewed itchiness, and only fitful sleep. I also progressed to a MELD of 20 from an initial number of 12. I know everyone’s experience is different and basing outlook on others time-lines is not helpful but nonetheless I feel discouraged and cheated out of good health.
I’ve taken to learning as much as I can and trying to be an active an informed partner in any discussions with my doctors. Perhaps the most fundamental thing I’ve learned is that since this is a rare disease many doctors have little experience with it. It has been critical to find a skilled hepatologist and not a regular GI doctor. Its also been helpful to have a GP who is willing to get enough information to be a actively involved.
I’m only now catching my breath in this process and looking around to see what the possibilities are.
Thank you for sharing your life with PSC after these past 6 months. I am very glad to hear that you have found a good hepatologist. I truly believe this is the key to getting the very best outcome with PSC. How have your labs been over these past 6 months? I see your MELD is currently 20. Has your hepatologist discussed getting you on the transplant list? If not, I would encourage you to have that discussion sooner than later. MELD scores with PSC can jump rapidly within a short amount of time, or they can climb slowly over a number of years. We are about the same age, I’ll be 54 next month. I was diagnosed with PSC in 2011. In the fall of 2014 my MELD had climbed to 12 so my hepatolgist and I had the discussion about getting me listed. I went through the transplant evaluation in December 2014 and was listed in January, 2015. In April of 2015 my MELD jumped to 19, and then in the middle of July it jumped to 36. I was transplanted two days later. Not trying to cause any undue concern, but things can move rapidly and being on the list puts you in the best position should your situation take a turn for the worse.
We are here for you though no matter what course you decide to take. Please feel free to jump in any time and respond to other posts and do keep us informed of your progress.
Thanks Mark. I have had discussions about the transplant list and process. It is daunting. I’m facing the reality that it may be the best path assuming it becomes an option.
My labs are never good news. The ALT/AST/Bilirubun numbers only seem to go up. My bilirubin is more than twice as high as when first tested. I have a new set of labs coming next week so I’m hoping I can reverse the trend of bad news.
Got my latest blood tests back and my MELD increased again to 23. Its been a quick journey over the last 6 months from a score of 12 to 15 to 20 and now to 23. Have hepatologist follow up with a doctor who also works directly with the transplant center.
From the way your MELD score keeps climbing, I want to encourage you to pursue getting your transplant evaluation and listing as soon as you can. You need to be on the list so if things continue to get worse you will have a good chance of getting a liver. Do it now while you are relatively healthy and can make it through the evaluation process good then when you need it you will be ready.
You need to have a good support system of family or close friends in place that will be willing to commit to care for you post-transplant. You will need them to accompany you to the evaluations. You have got to demonstrate to the transplant team that you have the care team ready and willing to help. You will find though after transplant that your energy levels will get better every day and before you know it you will be back to full stamina. We are all different and all have different circumstances but I’m hoping that yours will be a textbook transplant with no complications.
Keep in touch and let us know how things go for you.