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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Seeking the best hospital to treat psc


#1

My husband was recently dial with PSC. As of now he has no symptoms except for high liver enzymes. We are searching for the best place to be seen by a liver specialist. Any suggestions? We are willing to travel the US to find one to treat this terrible disease.


#2

Good Morning!!! I am in early stage PSC and I am being treated by wonderful woman at the Dartmouth Hitchkok Medical Center in Lebanon New Hampshire USA. My providers name is Kimberly Pollis APRN. I love her. She is kind, caring, warm and compassionate. Very intelligent too!!!! Kim of course works with a great group of physicians in the gasterenterology dept at Dartmouth. I highly recommend this group for the treatment of PSC. The only thing though, is that when it comes to transplant time, I will need to go to one of the medical facilities in Boston Massachusetts. Best of everything to you and please keep in touch!!!!!!


#3

Thank you so much. Best of luck to you.


#4

Dear SQ,

The Mayo Clinic in Jacksonville, FL performs more liver transplants, I believe, than any other US Facility. It's a nice setting and excellent hepatologists. The wait list for transplant is faster moving than most other regions and they have a very high success rate.

Stay Strong and best wishes,

EAD3


#5

Choose a medical school/teaching hospital within reasonable distance to your home. You will be making many trips. Research ALL available US hospitals at http://UNOS.org. Some hospitals only do cadaveric transplants. Seriously consider one that does both cadaver and living donor transplantation. You may never need a transplant, but I did, and had to take a time wasting path to get a hospital that did both.

I was personally on a cadaver transplant list for 3.5 years near death, when the the head surgeon recommended finding a live donor for a liver and going to a hospital that does both. I received a liver graft from my daughters childhood girlfriend 2.5 years ago. Both of us are doing fabulously. Mine was done at Northwestern Memorial Hospital, Chicago.
I would also recommend Froedtert Memorial Hospital/Wisconsin school of Medicine in, Milwaukee (cadaver only). And, University of Wisconsin Medical Center, Madison, WI (cadaver and living)

Teaching hospitals retain hepatologists and surgeons better than non-teaching hospitals. They are also privy to the latest research and treatment on PSC. MY THOUGHTS AND PRAYERS GO WITH YOU.


#6

Thank you. I so appreciate your advice. We currently live in Myrtle Beach & I am seeking out hospitals that do both transplants. The closest to us would be Duke. Not sure about it though because two friends did not have the best care there. That is why I posted the question on here. I value the opinion of others going through this. Best of luck to you. I hope for many healthy years ahead for you.



Paul Hain said:

Choose a medical school/teaching hospital within reasonable distance to your home. You will be making many trips. Research ALL available US hospitals at http://UNOS.org. Some hospitals only do cadaveric transplants. Seriously consider one that does both cadaver and living donor transplantation. You may never need a transplant, but I did, and had to take a time wasting path to get a hospital that did both.


I was personally on a cadaver transplant list for 3.5 years near death, when the the head surgeon recommended finding a live donor for a liver and going to a hospital that does both. I received a liver graft from my daughters childhood girlfriend 2.5 years ago. Both of us are doing fabulously. Mine was done at Northwestern Memorial Hospital, Chicago.

I would also recommend Froedtert Memorial Hospital/Wisconsin school of Medicine in, Milwaukee (cadaver only). And, University of Wisconsin Medical Center, Madison, WI (cadaver and living)



Teaching hospitals retain hepatologists and surgeons better than non-teaching hospitals. They are also privy to the latest research and treatment on PSC. MY THOUGHTS AND PRAYERS GO WITH YOU.

#7

I agree that the research hospitals are the way to go, if you're able to do it. Since it's a rare disease, I think it's better to go to a hospital that sees a lot of cases. In addition to having more experience treating PSC, the research facilities tend to be much more up-to-date on current trials, recent research, etc. As we all know, there isn't a cure and, frankly, the disease just isn't very well understood.

I ended up choosing Mayo Clinic in Arizona. Dr. Keith Lindor is there and he's one of the leading experts on the disease. I found that Mayo was very well versed on the disease / treatment and also more open-minded about treatment. My local doctor had seen a few cases, but his perspective was that it shouldn't be treated (ie, just monitor until my liver really becomes really ill). He indicated that the research on Ursodiol wasn't statistically shown to be effective. Mayo said that's true, but that it is effective on some patients and has very few side effects, so it's worth a try (of course too high of a dose can be harmful). Mayo (and Lindor specifically) conducted many of the Urso studies, so I took their guidance. Since starting Urso, my liver values have come down significantly - they told me lower values won't cure the disease but it generally improves your outlook.

Anyway, I know Urso is an entire subject on its own (Mayo had some interesting thoughts that I'll have to post separately), but my point is that you'll be closer to the center of gravity by going to a research center. And I think that is the best shot you can give yourself when dealing with a disease that isn't well understood. They'll have more cutting edge info. Mayo was also very professional and organized - great experience all around. It isn't cheap to make the trip, but if you have the ability to travel, I highly recommend it.

Btw, Duke was on my list of potential hospitals - I had heard good things, so I'm surprised your friends had a bad experience. I live nearby as well (Charlotte) so it was a logical one.

Good luck to you and your husband - I hope you find a doctor you like.

§ H


#8

Thank you so much for your reply. May I ask why you did not choose to go to Duke since you live in Charlotte? Were you not concerned about getting sick & having to travel to Arizona? Just wondering because we are trying to find a specialist soon. I appreciate your feedback

R the II said:

I agree that the research hospitals are the way to go, if you're able to do it. Since it's a rare disease, I think it's better to go to a hospital that sees a lot of cases. In addition to having more experience treating PSC, the research facilities tend to be much more up-to-date on current trials, recent research, etc. As we all know, there isn't a cure and, frankly, the disease just isn't very well understood.

I ended up choosing Mayo Clinic in Arizona. Dr. Keith Lindor is there and he's one of the leading experts on the disease. I found that Mayo was very well versed on the disease / treatment and also more open-minded about treatment. My local doctor had seen a few cases, but his perspective was that it shouldn't be treated (ie, just monitor until my liver really becomes really ill). He indicated that the research on Ursodiol wasn't statistically shown to be effective. Mayo said that's true, but that it is effective on some patients and has very few side effects, so it's worth a try (of course too high of a dose can be harmful). Mayo (and Lindor specifically) conducted many of the Urso studies, so I took their guidance. Since starting Urso, my liver values have come down significantly - they told me lower values won't cure the disease but it generally improves your outlook.

Anyway, I know Urso is an entire subject on its own (Mayo had some interesting thoughts that I'll have to post separately), but my point is that you'll be closer to the center of gravity by going to a research center. And I think that is the best shot you can give yourself when dealing with a disease that isn't well understood. They'll have more cutting edge info. Mayo was also very professional and organized - great experience all around. It isn't cheap to make the trip, but if you have the ability to travel, I highly recommend it.

Btw, Duke was on my list of potential hospitals - I had heard good things, so I'm surprised your friends had a bad experience. I live nearby as well (Charlotte) so it was a logical one.

Good luck to you and your husband - I hope you find a doctor you like.


#9

I didn't have anything against Duke, but after a decent amount of searching I felt like Mayo would be the best choice. Honestly, Dr. Lindor's credentials sold me. I'm lucky to only have limited symptoms at this point, so my current plan is to make the trip to Arizona once per year. If I get more sick, I may have to re-evaluate depending on how it goes. However, I'm still seeing my local GI doctor (I have ulcerative colitis as well) and Mayo was fine coordinating with him. So I do regular bloodwork, colonoscopies, etc here in Charlotte and keep Mayo apprised of the results between visits. If it works for your situation, you might consider doing something similar. Also, I have no idea if this is accurate, but I felt like being in the Mayo system would help me if, at some point, I need a transplant.


#10

You sound exactly like my husband. He also has uc & high liver enzymes. We moved to MB from the Charlotte area about 1 1/2 years ago. His dr here suspected PSC. We had never heard of it before. We may follow in your footsteps. I looked up Dr. Lindor. Looks very knowledgeable. I feel like we need to go wherever we have to for his health. You have been so very helpful. Thank you for the advice. Best of luck to you. Hoping you will remain healthy for a very long time./>


R the II said:

I didn’t have anything against Duke, but after a decent amount of searching I felt like Mayo would be the best choice. Honestly, Dr. Lindor’s credentials sold me. I’m lucky to only have limited symptoms at this point, so my current plan is to make the trip to Arizona once per year. If I get more sick, I may have to re-evaluate depending on how it goes. However, I’m still seeing my local GI doctor (I have ulcerative colitis as well) and Mayo was fine coordinating with him. So I do regular bloodwork, colonoscopies, etc here in Charlotte and keep Mayo apprised of the results between visits. If it works for your situation, you might consider doing something similar. Also, I have no idea if this is accurate, but I felt like being in the Mayo system would help me if, at some point, I need a transplant.


#11

Glad I could help! You actually sound similar to my wife - she did most of the researching for my doctors, haha! Best of luck to you guys as well - keep us posted.

SQ said:

You sound exactly like my husband. He also has uc & high liver enzymes. We moved to MB from the Charlotte area about 1 1/2 years ago. His dr here suspected PSC. We had never heard of it before. We may follow in your footsteps. I looked up Dr. Lindor. Looks very knowledgeable. I feel like we need to go wherever we have to for his health. You have been so very helpful. Thank you for the advice. Best of luck to you. Hoping you will remain healthy for a very long time./>

R the II said:

I didn't have anything against Duke, but after a decent amount of searching I felt like Mayo would be the best choice. Honestly, Dr. Lindor's credentials sold me. I'm lucky to only have limited symptoms at this point, so my current plan is to make the trip to Arizona once per year. If I get more sick, I may have to re-evaluate depending on how it goes. However, I'm still seeing my local GI doctor (I have ulcerative colitis as well) and Mayo was fine coordinating with him. So I do regular bloodwork, colonoscopies, etc here in Charlotte and keep Mayo apprised of the results between visits. If it works for your situation, you might consider doing something similar. Also, I have no idea if this is accurate, but I felt like being in the Mayo system would help me if, at some point, I need a transplant.


#12

Dear SQ,

Dr. Lindor is nationally known as a top-flight PSC expert. He was in Chicago (near me) until he moved several years ago. I am sure he would be an excellent Hepatologist for your husband.


#13

Thank you. I am feeling like he may be our guy. Appreciate your input.



Paul Hain said:

Dear SQ,

Dr. Lindor is nationally known as a top-flight PSC expert. He was in Chicago (near me) until he moved several years ago. I am sure he would be an excellent Hepatologist for your husband.


#14

I would suggest you look into the program at Duke University Medical Center in Durham, NC. They have a terrific team of doctors, surgeons, etc. that have provided excellent care for me these past 4 years. I will share a few links of some doctors to consider.

1. Dr. Carl Berg - he is the director of liver and kidney transplant at Duke. http://www.dukemedicine.org/find-doctors-physicians/carl-l-berg-md

2. Dr. Andrew J. Muir is a hepatologist at Duke. http://www.dukemedicine.org/find-doctors-physicians/andrew-j-muir-md-mhs

3. For ERCP's I know of no one better than Dr. Jorge Obando. He does this day in and day out and has done 4 on me the latest being last Thursday. A very excellent surgeon/doctor. http://www.dukemedicine.org/find-doctors-physicians/jorge-v-obando-md

Hope this helps you.


#15

Thank you. Duke is close to us. But I haven’t heard the best things about them. I appreciate your list of doctors. I will definitely look them up. Best of luck to you



fcmmark said:

I would suggest you look into the program at Duke University Medical Center in Durham, NC. They have a terrific team of doctors, surgeons, etc. that have provided excellent care for me these past 4 years. I will share a few links of some doctors to consider.

1. Dr. Carl Berg - he is the director of liver and kidney transplant at Duke. http://www.dukemedicine.org/find-doctors-physicians/carl-l-berg-md

2. Dr. Andrew J. Muir is a hepatologist at Duke. http://www.dukemedicine.org/find-doctors-physicians/andrew-j-muir-m…

3. For ERCP’s I know of no one better than Dr. Jorge Obando. He does this day in and day out and has done 4 on me the latest being last Thursday. A very excellent surgeon/doctor. http://www.dukemedicine.org/find-doctors-physicians/jorge-v-obando-md

Hope this helps you.


#16


can you recommend a specific dr. At the Mayo Clinic in Jacksonville?


EAD3 said:

Dear SQ,

The Mayo Clinic in Jacksonville, FL performs more liver transplants, I believe, than any other US Facility. It’s a nice setting and excellent hepatologists. The wait list for transplant is faster moving than most other regions and they have a very high success rate.

Stay Strong and best wishes,

EAD3


#17

Well, I’m happy to this about Mayo in AZ since I’m moving there in a few years!




R the II said:

I didn’t have anything against Duke, but after a decent amount of searching I felt like Mayo would be the best choice. Honestly, Dr. Lindor’s credentials sold me. I’m lucky to only have limited symptoms at this point, so my current plan is to make the trip to Arizona once per year. If I get more sick, I may have to re-evaluate depending on how it goes. However, I’m still seeing my local GI doctor (I have ulcerative colitis as well) and Mayo was fine coordinating with him. So I do regular bloodwork, colonoscopies, etc here in Charlotte and keep Mayo apprised of the results between visits. If it works for your situation, you might consider doing something similar. Also, I have no idea if this is accurate, but I felt like being in the Mayo system would help me if, at some point, I need a transplant.


#18

Anyone here use anyone in NYC? We are going to Weill-Cornell, Dr. Robert Brown. He was referred to us by a friend of ours who is a transplant doctor at Leahy Clinic in Boston. Just wondering if anyone has gone there, Cornell, and their experience.

Thanks


#19

Hi R the II,

Just reading some of the conversation and thought I would make a little comment. I think whatever hospital you feel the most comfortable with that's what you need to go with. I'm not sure if you realized it or not but Carolinas Medical Center in Charlotte is Region 2 for North Carolina. They have an excellent transplant program there and I completed my transplant evaluation there in April. Dr. Schmeltzer is my hepatologist there. This was a second listing for me as my primary is Duke which is region 1. If you end up needing transplant you may consider listing in both regions of North Carolina. Region 1 consists of Duke and UNC and Region 2 CMC in Charlotte. Here's a link to the heptatology department at CMC in Charlotte if you want to take a look. http://www.carolinashealthcare.org/liver-transplant

Here's the bio on Dr. Schmeltzer - http://www.carolinashealthcare.org/body.cfm?id=8061&action=detail&ref=3359

Mark

R the II said:

I didn't have anything against Duke, but after a decent amount of searching I felt like Mayo would be the best choice. Honestly, Dr. Lindor's credentials sold me. I'm lucky to only have limited symptoms at this point, so my current plan is to make the trip to Arizona once per year. If I get more sick, I may have to re-evaluate depending on how it goes. However, I'm still seeing my local GI doctor (I have ulcerative colitis as well) and Mayo was fine coordinating with him. So I do regular bloodwork, colonoscopies, etc here in Charlotte and keep Mayo apprised of the results between visits. If it works for your situation, you might consider doing something similar. Also, I have no idea if this is accurate, but I felt like being in the Mayo system would help me if, at some point, I need a transplant.


#20

Jeffsmom we booked an appointment with Dr. Brown for next week to seek a second opinion. how was your experience with him?
His current G.I. wants to do a second ERCP on my husband (second one in two weeks) and I feel we should be a little bit more cautious, as we now have an infection.
Liz