Liver transplant - Let's support each other

@gaylea1 I am so sorry to hear that. My son has been having ERCPs every 3 months for the past 2 years. He has never experienced pancreatitis or any other problem. They always have him start antibiotics the day following his procedure & liquids only for the 1st 24 hours. He had a stent that they sometimes replace & sometimes remove. I have heard from others of bad experiences. My son had his gallbladder removed 2 years ago. They did a liver biopsy at that time & found him to be stage 4 cirrhosis. Following that procedure he developed cholangitis & his 1st bile duct stricture. His MELD was 34. He was not on the transplant list at the time. They did an emergency ERCP & placed a stent. That was when his transplant team decided he would be evaluated for transplant. Since that time his MELD has come down and has been in the range of 15 - 17. His last ERCP was this past Monday. The center was taking strict precautions. He was tested for Covid-19 48 hours prior to the procedure. Was wiped down & temperature taken day of. No visitors were allowed in. We dropped him off & picked him up. The only time my son complained of pain was a slight sore throat after his very 1st ERCP. Has not experienced that since. Have all your ERCPs been done at the same facility? Maybe want to look into trying another doctor.

@stella25 I had a complete liver transplant (non-living donor) a year or so ago. My MELD score was over 30 at time of transplant. As a result I have blocked bile ducts and also undergo ERCPs. None of them have been what could be described as even tolerable. Three failed miserably but I now have only one stented bile duct. I was supposed to have it evaluated March 16th but the ERCP was cancelled. Has your son ever experienced Pancreatitis due to an ERCP? I'm asking because every time I have one I get this debilitating outcome. I end up in hospital anywhere from 7-10 days immediately following an ERCP. The pain is worse than any labour pains and lasts a long time. I am on morphine, demerol, gabapentin and tramadol to help relieve the pain. Eating any solid or semi solid increases the pain so I have clear fluids only during this time. Recovery takes months as eating becomes an issue. I am wondering how many other people go through this with ERCPs? I've heard it is common and to be expected but I've only found one other person who goes through this as well on this site.

@stella25 I had a complete liver transplant (non-living donor) a year or so ago. My MELD score was over 30 at time of transplant. As a result I have blocked bile ducts and also undergo ERCPs. None of them have been what could be described as even tolerable. Three failed miserably but I now have only one stented bile duct. I was supposed to have it evaluated March 16th but the ERCP was cancelled. Has your son ever experienced Pancreatitis due to an ERCP? I'm asking because every time I have one I get this debilitating outcome. I end up in hospital anywhere from 7-10 days immediately following an ERCP. The pain is worse than any labour pains and lasts a long time. I am on morphine, demerol, gabapentin and tramadol to help relieve the pain. Eating any solid or semi solid increases the pain so I have clear fluids only during this time. Recovery takes months as eating becomes an issue. I am wondering how many other people go through this with ERCPs? I've heard it is common and to be expected but I've only found one other person who goes through this as well on this site.

@contentandwell PSC is a progressive rare autoimmune disease of the bile ducts where the ducts become inflamed & scarred & are eventually narrowed & blocked preventing bile from flowing properly. The bile builds up in the liver which leads to damage and/or cirrhosis (my son is stage 4). There is no known cause & currently no proven treatments to change its course or slow its progression. In addition to the jaundice, extreme itching, fatigue, irregular sleep patterns, risk of HE, vitamin deficiency & weight loss, PSC patients also experience deterioration of muscle mass, bone loss, IBD, cholangitis, esophageal varices, ascites, increased risk of developing cholangiocarcinoma & cancer of the colon to name a few. We know of PSC patients who are far worse off than my son & have a MELD of only 6 or 7. My son is on a myriad of medications to manage his symptoms. He also undergoes ERCP every couple of months to sweep out his bile ducts, replace a stent & check for cancer. Both my husband & I would love to be his living donor but unfortunately we are past the cut off age. Yes, we are using various social media outlets to find a donor. I am in awe of these people that we don't even know who have offered to be my son's donor. We are truly humbled by the courageousness & generosity of all those who offer. It is a pretty rigorous screening for donors once they get past the health history questionnaire. God bless them all:-) I am not familiar with NASH. I will need to read up on it so I better understand. Have you been transplanted or still waiting? My best to you.

@stella25 I am really not familiar with PSC and why that makes it more important to have a living donor so he can be transplanted sooner. My problems were caused by NASH cirrhosis. What are the unique risks that PSC patients have?
I hope you do find a donor for him. I have seen where people have even found them by posting on Facebook. I always marvel at what generous spirits those people must have, to go through that for a complete stranger. My son and daughter both volunteered but that was for me, their mother, so a completely different situation.
JK

His MELD is currently 17. We are searching for a living liver donor for him. He has PSC and like many other PSC patients, living donation is the best solution. PSC patients are at a disadvantage since they face unique risks and disease-specific complications not factored into their MELD. We have had 10 - 12 potential living donors for him but all have been rejected for one reason or another. I have faith the right donor will come at the right time:-)

@stella25 That's excellent that he is now happy with his new transplant center. We were not happy with the first transplant center that we looked at, recommended by my PCP, so I did my own research and chose Mass General in Boston. We could not have been happier than we were with the care there, and it still continues.
It really is so important to be comfortable and confident of your transplant center. Hopefully he will be transplanted some time relatively soon. Is his MELD getting high enough yet to make him a potential candidate soon?
JK

I had a liver transplant at Mayo Phoenix 6-2018. I lost about 65 lbs. during the first year and became concerned with my rapid weight loss. I began taking medical marijuana edibles to help stimulate my appetite. I researched this treatment and discovered that the cannabis can increase the Everolimus levels three fold. That would raise the Everolimus to a dangerous level so I immediately stopped taking the edibles to maintain safe therapeutic levels. I would like to caution other transplant patients to avoid this potentially dangerous combination. I would be very careful with any alternative treatments such as CBD oils or any other supplements without your Doctor’s approval. We have come too far to make mistakes with herbal supplements. Take care and stay safe with this SARS-CoV-2 Pandemic.

I had a liver transplant at Mayo Phoenix 6-2018. I lost about 65 lbs. during the first year and became concerned with my rapid weight loss. I began taking medical marijuana edibles to help stimulate my appetite. I researched this treatment and discovered that the cannabis can increase the Everolimus levels three fold. That would raise the Everolimus to a dangerous level so I immediately stopped taking the edibles to maintain safe therapeutic levels. I would like to caution other transplant patients to avoid this potentially dangerous combination. I would be very careful with any alternative treatments such as CBD oils or any other supplements without your Doctor’s approval. We have come too far to make mistakes with herbal supplements. Take care and stay safe with this SARS-CoV-2 Pandemic.