After spending a couple days in the ER I was informed I am in need of an immediate ERCP and getting my gallbladder out. I don’t have a hepatologist in the area since I just moved to the area. The ER I was at was not associated with an experienced hepatologist to perform an ERCP. I elected to be released from the ER to go to another ER associated with an ERCP specialist. Problem is all the ERs Georgetown, Sibley, Johns Hopkins have terrible reviews. Any recommendations or advice would be great.
If your willing to travel to North Carolina, Dr. Jorge Obando at Duke is the very best as far as I’m concerned. He did all of mine and I never had a glitch. He works out of Duke-Raleigh hospital as well as Main-Duke in Durham. Here’s his bio.
Mark
Thanks for such a quick reply but I am mot able to travel at this time. My ER doc recommended I go to another ER asap. Trying to find the best solution in a hurry and within proximity to home and family.
I tell you what I’ll do. I’ll email the director of hepatology at Duke and see if he has a recommendation in the DC / VA area for you. Hopefully he will respond this evening.
Wow that would be amazing! Thanks again for your kindness and help.
Hello again. I heard back from the hepatologist. He personally does not know anyone up there in that region of the country. In general though he would suggest Johns Hopkins. One of the keys when choosing a doctor to perform the procedure is to make sure the person performing it is a specialist in advanced endoscopy. That the doctor does this day in and day out. He/she is not a resident, or a doctor in training, but is a skilled, seasoned specialist in the field. I would encourage you to make sure unless absolutely necessary to not use stents in the ducts, but to endeavor with balloon dilation to open up and clear the blocked ducts. If stents do have to be used, they will need to be changed out or removed in a few weeks to avoid possibility of infection. ERCP’s do come with risks, but in the hands of a skilled specialist in the field you should be fine. If you find that you are satisfied with this doctor, use him/her each and every time moving forward. I’d call their office first thing in the morning “or” show up at the ER if you are running a fever over 101.5 and make sure the specialist is the one who sees you.
Hello Fccmark, thanks for checking I do appreciate it. Unfortunately, I ended up going to the ER at Sibley Memorial. But it ended up being a good experience overall, they were able to conduct my first ever ERCP. That being said a plastic stent was placed near the sphincter on the bottom right side of one of my ducts. I returned home after a few days and went back to work. My bili which was around a 9-10 (normal 2-2.5) would not go down. The Docs planned to conduct an IR procedure the week of Thanksgiving but I had plans to visit family. That was a bad decision because a few days later what I though was food poisoning after travel was really a full on out cholangitis attack which led to an infection. I rushed to the ER after Thanksgiving dinner and ended up in the ICU for a couple days went through another ERCP. Stent was taken out because of bacteria and potential infection cause. Made it through one day then woke up in the middle of the night in the hospital vomiting blood for approximately 1.5 hrs. Back to ICU, endoscopy, banded 7 bleeding varices. A total of 9 days in the hospital along with some hemoglobin issues during last few days but eventually made it out of hospital. My body is swollen bottom half beyond belief including abdominal distension (feel like I am pregnant) which has been brutal can barely walk (supposed to be getting better). Have a follow up in the am, another endoscopy! Yay. Being positive but almost didn’t make it through on two occasions in the 9 days. Was a healthy and athletic male prior to all of this. Diagnosed in 2016 and first major life impacts. Have two small children which makes it even more difficult. On top of all of it I got frozen shoulder during the 2nd endoscopy because of the position I was in while knocked out. Gained 25 in fluid weight while basically eating nothing for two weeks. Never knew all this could happen. Trying to stay positive. Any info, thoughts, comments would be helpful. I tried to write this as quick as possible so I prob left a lot of the details out.
So sorry to hear you have gone through all this recently. I hate when they have to use stents. As I’ve said many times they are breading grounds for infection. I’m very sorry you ended up with one. I hope things will improve for you soon. Hopefully they can get that fluid retention off of you soon. It is one of the side effects of liver disease and it appears you have it pretty bad. I’m not familiar with your hospital. Is it a hospital that does liver transplants? You need to be under the care of the best of teams that deal with liver disease. Hopefully this is the case. Take care and do keep in touch.
Mark
Hey, yes I have read multiple post regarding stents and urged my Doctors not to put any in during the ERCP. But they seemed to be set on it no matter what I said. I was at Sibley Memorial Johns Hopkins (has transplant center and some of the best docs out there). The Dr. that conducted the ERCP is supposedly an expert. That being said they only went through the right side of the ducts as they said the left side was too strictures.
The second ER Hospital I went to was University of Michigan Ann Arbor. The Dr that conduct the ERCP really did a great job she spent 2-3 hrs on me and was able to get through and dilate the left side of the ducts along with taking the stent out. I spent the 9 days there and completed my endoscopy without any additional banding this am. Many Thanks for your replies it is really great to discuss this with someone who is so knowledgeable. Even if it’s just venting and getting my version out.
I think if I were you I’d stick with the second doctor at University of Michigan. With some persistence, she was able to open up both sides. You’ve got yourself a specialist in the field. I’d use her each and every time if you can. You’ll probably have more ERCP’s before it’s over, but getting that left side open should buy you some time. We are here for you so don’t hesitate to send us a word.
Merry Christmas to you and yours,
Mark
Great insight, I have been teetering back and forth but you definitely cleared it up. I think I will have move forward with U of M.
Hi Mark, I’m new to sure but saw this post from 2019 and see you’re in NC. Our17 year old daughter just had MRCP and pediatric hrpatologist has referred us to an ERCP specialist in Charlotte and we have a consultation this week. There is a stricture in common bile duct and liver. Sounds like balloon is preferable to a stent? I’ve heard we should screen for cancer at the procedure using brushing or FiSH technique. One we meet, we’ll have a better idea of whether to go to Duke or another center. Do you have recommendations for dr. At Duke or Atrium (was CMC)? What about ErCp procedure? Thanks!
Hi,
Yes, when they do the ERCP procedure if this is your daughter’s first one especially, they will certainly do brushings for cancer screening. Unless a stent is absolutely necessary I’d stay away from stents. The balloon dilation is part of the procedure I believe either way. Another thing, make sure the doctor performing the ERCP does these every day. You don’t want an inexperienced doctor/resident. This is an invasive but necessary procedure. I always had the same doctor do mine every time at Duke. Of course, the doctor will do what he/she believes is in the best interest of your daughter.
As far as Duke goes here are a few recommendations to consider.
- For her Hepatologist, I’d strongly recommend an appointment with Dr. Andrew Muir. He is the chief of hepatology at Duke and is the doctor that I saw and who got me on the transplant list when it came to that. Here’s a link to his bio and contact information. There’s an informative video there as well. https://www.dukehealth.org/find-doctors-physicians/andrew-j-muir-md-mhs
- For her Advanced Endoscopy Specialist, my only recommendation from experience is Dr. Jorge Obando. The very best in my opinion! He primarily works out of the Duke-Raleigh Hospital but he does do some at Duke main. You’d have to ask. https://www.dukehealth.org/find-doctors-physicians/jorge-v-obando-md
Now for CMC, Charlotte, I only went there a few times since I got my transplant finally at Duke. Here’s a link to their liver transplant page. They could direct you to the best hepatologist that treats PSC there. I have been in contact with several who got a transplant there due to their PSC. https://atriumhealth.org/medical-services/specialty-care/transplant/liver-transplant
Sorry I don’t have any good suggestions as far as CMC is concerned. I personally would avoid UNC Chapel Hill. I know several who’ve had transplants there but Duke really has treated me with excellent personal care. I’ve heard some stories about UNC. With it being a State hospital, things are run just a little different from privately owned Duke. I hope this is of some help.
Mark
Mark Wilson, Moderator
Primary Sclerosing Cholangitis (PSC) Support Group
PSC 2011 / Liver Transplant 2015
