Hello friends. Seeking recommendations, urgent. I am a brand new member of this group, my husband was just diagnosed with PSC four weeks ago. He is currently hospitalized for an infection that they have not yet specifically pinpointed, but we believe is either in the biliary tract or a stent that was put at the base of the tract. He has two masses in his liver-- only one reachable --brushed for testing and came back non- cancer but atypical. On 8-25 he was rushed to a local ER upstate stabilized with spectrum of antibiotics and then transported to NYU in Manhattan. Still here. Right now I think his gastro has not been aggressive enough, and this ERCP could have gone better. (Granted we are complete novices.) left lobe of his liver is still completely blocked, we thought we would get multiple stents in but Gastro only got one in at the base. She never heard of vanco trials I have read about in this group and made no diet recommendations… Please help send any recommendations for a premier ERCP – PSE specialist in the New York City area or nearby! Thanks everyone and God bless. Liz
Rose,
Thanks for your post and we are glad to be of help. I’m sorry your husband is suffering from the biliary infection. My gut feeling on this is that the stent has been in there way too long and has become blocked and infected. A couple of questions. Who is doing the ERCP’s? Is it your regular GI doctor or have you consulted with a hepatologist at a major hospital that does liver transplants? If it’s just your regular GI you need to run as fast as you can away from that doctor and get to a hepatologist asap! He/she is best qualified to treat your husbands liver disease especially PSC. Secondly, the fact she hasn’t heard of vanco trials is another reason I suspect she’s just a regular GI. Find yourself a transplant hepatologist. I had 5 ERCP’s in the 4 years from diagnosis to transplant, and not once would the advanced endoscopist insert a stent. He said it was too risky for infections and he only used it if the situation was dire and he had no choice. He’d rather go in every other week with an ERCP than risk the infections associated with stents.
I hope this helps and that he gets better soon! I’d also ask about putting him on URSO. This drug helps thin the bile, it’s not a cure but it does bring some quality of life. I was on 1200 mg a day for the entire time I had PSC.
Mark
PSC 2011 / Liver Transplant 2015
Thanks so very much Mark. The stent was only put in 2 wks ago. His main duct was down to 2mm and they deemed it vital. Concern is now that stent is allowing bacteria to travel upward into his liver to the congested left lobe and this is where the infection is originating. However they’re not 100% certain, still waiting for certain cultures to tell the whole story. I will ask about the bile thinning meds. Right now they want to do another ERCP tomorrow, and correct this "plumbing " issue while he has all the antibiotics in him,
His G.I. does specialize in liver issues, although not sure how much of them include PSC. Guess best way to ask her outright how many she has done? We also met with a hepatologist/liver transplant MD here in NYU hospital. He is 50-50 about a. 2nd ERCP. My husband and I both thought it would just be great to gather a second opinion about all of this from somebody, and for her too much time available.
In appreciation
Liz
Liz,
Ok, well two weeks makes more sense but that’s about as long as they usually leave stents in. I just remembered the 4 weeks but that was his diagnosis date. You will get varying opinions on the URSO. Some doctors tell you that it doesn’t do any good, but I can tell you first hand with living with PSC for 4 years at least since diagnosis that URSO did do good. No, it doesn’t cure PSC, but it gives the patient a quality of life for more extended periods of time between ERCP’s. It will bring liver panel levels down sometimes into normal ranges, but don’t let that make you think wow he’s getting better, no it just helps with the living life to it’s fullest issues that I always press. And when and if he needs a transplant and the right one becomes available, he’ll be just fine. I do encourage you to educate your family about PSC. You will need their support through this process which may take years. You will have to educate not only your family, but healthcare folks like nurses and technicians that PSC is a non-alcoholic liver disease not acquired from drinking liquor. So many assume that liver disease is caused by bringing it on yourself, and that’s not always true and certainly not with PSC. He will need you to be his advocate, to speak up for him at appointments when he doesn’t remember what to ask, or is embarrassed to ask. This is a fight that takes a lot of team work. We will be here to be an encouragement and help along the way as you reach out to us here in this forum. Take care and stay in touch.
Mark
I have 2 doctors to recommend:
1, ERCP specialist: Dr. Franklin Kasmin: http://doctor.webmd.com/doctor/franklin-kasmin-md-2c800ca6-6eaf-4830-9e9e-484374ac5af7-overview
2. Heptologist/Transplant Specialist: https://weillcornell.org/brett_fortune_md
Dr. Kasmin diagnosed my son in August 2016 with PSC/Crohn’s. He is no longer seeing my son becasue he specializes in ERCP, which my son has no need to have at this point.
Dr. Fortune is handling the PSC and we are in the process of getting him started on Vancomycin. Seems like a real good doctor, and very accessible to my constant emails.
Good luck!
Thank you for all that advice and support Mark. I appreciate the candor and help! Good to know about the perception of alcoholism and effects of URSO especially. Question: they haven’t said anything about leaving the stent in temporarily. I thought some people have had them in for years? Also why are low numbers is not necessarily a sign of progress with PSC?
Thank you Jace!! We will be getting a 2nd opinion from them for sure. I really appreciate your help.
Best wishes. We are all in this together!
RoseSharron
September 4 |
Thank you Jace!! We will be getting a 2nd opinion from them for sure. I really appreciate your help. Visit Topic or reply to this email to respond.
In Reply To
jace0221
September 1 |
I have 2 doctors to recommend: 1, ERCP specialist: Dr. Franklin Kasmin: Dr. Franklin Kasmin, MD, Gastroenterology | New York, NY | WebMD 2. Heptologist/Transplant Specialist: https://weillcornell.org/brett_fortune_md Dr. Kasmin diagnosed my son in August 2016 wit… Visit Topic or reply to this email to respond. To unsubscribe from these emails, click here.
Rose Sharon,
PSC progresses at different rates in each patient. Often after an ERCP intervention the liver lab numbers do drop back into normal range and could stay there for quite sometime, but eventually the ducts will become strictured (blocked) again, the numbers go up, especially bilirubin levels, itching increases, RUQ pain, back pain sometimes and then it’s time for another intervention. In the cases I have heard of, stents are left in only for a short amount of time. Some patients have to have them changed out on a regular basis, but if left in too long they can and will become clogged, which then sends the numbers way up. Unless absolutely needed, I would hope your doctors would avoid stents. Stents are an infection waiting to happen!
Mark
Case in point Mark. We are again here in the ER with second infection in 2 wks, making this 2 stents in less than a month and both causing infections. They are Offering us option of changing this stent but now dubious these are right for my husband. Any alternatives out there? Thanks everyone!!
Rose,
I would ask the doctor if he would be willing to just leave the stents out this time around, and do labs again in one or two weeks. Just keep an eye on labs and not do the stents for now. That’s what I would want done for me, but every situation is so different. But I’d certainly appeal to the doctor. Beats the repeat infection.
Mark
Thank you. Will ask him. 