Badges (2)

About

Member has chosen to not make this information public.

Posts (39)

Sun, Apr 19 2:09pm · Liver transplant support group in Transplants

@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.

Sun, Apr 19 10:48am · Liver transplant support group in Transplants

@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.

Sat, Apr 18 10:24pm · Liver transplant support group in Transplants

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:-)

Sun, Apr 12 8:52pm · Liver transplant support group in Transplants

@contentandwell My son's previous transplant center was not meeting his needs. It was my son's choice to transfer & a good choice it was!!

Fri, Apr 10 11:50am · Liver transplant support group in Transplants

How sweet of you Rosemary to be thinking of others! My son, with PSC & listed for transplant, is holding his own. Staying positive & strong. He recently transferred his care to another transplant center. It was a bit of a process but it is complete & official as of last week. His wait time will follow him to the new center. We continue our search for a living donor & are extremely excited to be working with his wonderfully amazing new team of care providers. Wishing all a healthy, happy & blessed Easter season. May we all be safe & find peace in our pandemic isolation:-)

Thu, Feb 27 7:58pm · Liver transplant support group in Transplants

My son has had 5 ERCPs in the last 2 years. They always give him anesthesia. He has never experienced a problem with any of the procedures. He is always prescribed an antibiotic to avoid infections, pancreatitis, etc.

Mon, Feb 10 8:22pm · Liver transplant support group in Transplants

Hi Rosemary! Congratulations on your 11th anniversary!! You are amazing & such an inspiration to us all. I had so many questions when my son was listed for liver transplant a year ago. You were a huge source of comfort as you graciously answered those questions & extremely generous in sharing your own experience with all of us. I am forever grateful to you. To update you on my son. His MELD was at 34 when he was listed. It has since dropped and has remained fairly steady between around 14 & 17. Of course this makes it almost impossible for him to receive a deceased donor's liver. We have been reaching out to family & friends for a potential living donor. So far we have had 8 donors come forward. Unfortunately, all have been rejected for one reason or another. We continue our search & remain positive & hopeful. I am in complete & total awe of the individuals who have offered. True hero's:-) My very best to those of you who have been transplanted. May good health shine upon you. Prayers & love to all those waiting to be transplanted. You are not alone. We are with you:-) xoxo

Aug 30, 2019 · Liver transplant support group in Transplants

Luckonetj did you have PSC? My son with PSC had a blocked bile duct & cholangitis last December. His MELD was 34 at that time. He was evaluated & placed on the transplant list. Since then he has stabilized with a MELD of 13. His best chance for a transplant now would be a living donor. His doctors monitor him closely, especially for esophageal varices & acsites.