Hello all! I just joined the site. Just a little about me. I was diagnosed with psc and ulcerative colitis in January of 2005. The year before I was diagnosed I had started itching. Our dryer had quit so I was trying different detergents and then different lotions, etc. November of 2004 I finally went to the doctor. By that January they had diagnosed the psc and colitis. From there I was referred to the Mayo Clinic ( closest transplant center). Throughout the years I have dealt with the fatigue and itching the most. I have had ercp’s about every 2-3 years. Overall mostly held steady on everything and concentrated on family and work. My kids were 8,7 and 4 when I was diagnosed, they are now 21,20 and 16. About 2 years ago my meld jumped from a 6 to an 8 in one year. In April it jumped to a 12. My doctor has said that at a 15 is when they will transfer me to the transplant team. I also have severe portal hypertension, several small ulcers in the lower part of my stomach, and esophageal varicies. My bilirubin is just under a 3, so not overly high yet. However my last ercp did not change any of the numbers. Any ways that was a long way to say high. Hoping I will have insights to add as I have had this now for over 13 years.
Jan,
Welcome to our growing family of PSC patients and family members. I’m glad you found us. Please feel free to ask anything that comes to mind PSC related and we will do our best to help. I would encourage you to start getting your labs at least every 3 months now that your MELD has started to climb. If it shows stable after 6 months you might could back down on the frequency, but with PSC MELD can jump quickly as disease progression increases. I can only speak for myself as an example to you of why I mention the need of frequent labs. Hopefully yours will progress at a much slower rate.
In January 2015 I was listed for transplant with a MELD of 12. In April, 2015 it jumped to 19 and then in July it jumped to 36. I was transplanted two days later. Keep a close eye on it and I do encourage you to get listed as soon as they will let you. Make sure you are getting good exercise daily. My hepatologist suggested 30 minutes 5 days a week. For the most part I walked on the tread mill or if the weather was nice enough walked up and down the street. It’s critical to keep your core strength up to be ready for surgery eventually. Also, you may start noticing muscle wasting especially in your face first. Try to keep a good protein intake. When things get worse, try shakes like Boost or other similar high-protein shake drinks. They are available in the grocery store in generic store brand as well.
Take care and do keep in touch with us.
Mark
PSC 2011 / Liver Transplant 2015
Yep my doctor wants them taken again in 3 months. I just had them taken in June and July. I also forgot to mention that they have found ascites and I am now on a low sodium diet, which so far has brought down my swelling and helped me lose 10 lbs.