79yr old Father recently diagnosed

My father was just recently diagnosed with PSC, and until the last few months was healthy, active and living the life. Since diagnosis, we have been to a Gastroenterologist who referred us to Oregon Health Sciences Univ where I feel like we were shuffled through, tested some more and told there is nothing we can do and sent home to our local GP. At OHSU transplant cut off age is 75, I feel like they just didn’t care and if he had been 4 years younger might be eligible for a transplant. My father’s numbers are extremely high, unfortunately I’m not yet familiar with all the lab test names. I should also mention he was symptom free until 4 months ago. Now he has lost over 35 lbs, has jaundice and has had 2 ERCP, but no large blockages. I guess I’m wondering, is there any hospital or physicians out there who even consider further treatment for someone my father’s age? This is so overwhelming for all of us. Thank you all for your time and also thank you for all your postings, I’ve received more education here and outside in our medical community.

Dadboy.
Welcome to the community and sorry for your dad.

I am in Australia so a long way from you but here are the rules etc for transplant here in Australia which closely follow the American rules.

In over 5000 transplants since we started records in Aus only 5 person were over 70yrs.

See attached link as this will tell you the main reasoning why

https://aasldpubs.onlinelibrary.wiley.com/doi/full/10.1002/lt.24446

Good luck

See Dr. Scott Naugler, MD, FAASLD, AGAF
Assoc. Prof. of Medicine
Medical Director of Liver Transplantation
Medical Director of Multidisciplinary Liver Tumor Group
Oregon Health & Science University

He now has experience with oral vancomycin that may help your poor father. I can refer you if you would like me to - email me at Cynthia.buness@gmail.com

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That is a kick in the teeth. It can sometimes be a heartbreaker in deciding who gets a transplant. Another is that some people are too sick to transplant when one is available.

I wish I had something more comforting, but I am sorry your dad and the family are in this position.

It was mentioned at OHSU and might be an opinion, but thank you for the offer and I appreciate everyone for the support. To have somewhere to turn for advice or just reading others posting has been a God send.

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Thanks so much, I appreciate all the information because it has been suggested that both myself and my brother be monitored. My brother was diagnosed with IBS 2yrs ago. So any information, suggestions, or experiences on this disease is valuable to me.

Thanks so much for your response. The rational side of me knows your right, we were just caught totally off guard and diagnosed with a disease we had never even heard of or knew existed. I had no idea…I will get educated and continue to follow the stories and information here. Thanks for everything you do for the PSC community.

Dadboy,
I spoke with the chief of transplants at Duke Medical Center this afternoon about your father. He said they have no age limit on transplants at Duke. Right now, the oldest liver transplant they have done is 77 years old. He did say though, that certain criteria have to be met so that the patient can safely be transplanted at that age. Here are the main ones he mentioned.

  • No major heart issues like stents due to blockages, etc.
  • No kidney issues
  • Must have a good active lifestyle and exercise regularly.
  • BMI can’t be excessive.
  • In other words, his health is doing really great except his liver needs transplanting.

If you feel he might meet these criteria I would be glad to put you in touch with them so you can get an appointment for your Dad. Of course, it would require a move at least temporarily to North Carolina. He said, often they will have a liver turn up that another transplant hospital couldn’t use and they have to transplant within a couple hours, so nearness to the transplant hospital can be critical.

I hope this helps and do feel free to Private Message me if you believe this is something you might be interested in pursuing.

Mark
PSC 2011 / Liver Transplant 2015

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Mark,

I can’t tell you had appreciative I am that you reach out on my father’s behalf. To be honest it brought me to tears.

After reading the criteria, all are negative except for the stents. He had two stents placed 13 years ago, and has no issues since that time. My father has always been active and healthy.

Last August before he started having some symptoms, he was tearing down a 100 year old barn and recycling the wood along side my husband and sons. It was Thanksgiving that he had

his first really bad day, fever/chills and stomach discomfort. The following Monday they put him on antibiotics and scheduled his second ERPC, which turned out he had no blockage in large

bile duct and got us our referral to Oregon Health Sciences University. Since November he has lost almost 35 pounds and most of his muscle mass and the fatigue is horrible.

We did not get an appointment to OHSU until January 14, and that was because the Gastroenterologist who performed the ERPC procedures knew someone in the Hepatology department.

After MRI and blood work, we met with two different doctors who said there was nothing further they could do because transplant was the only option left. Two days later we were back to our local

GP, who gave us the final words from OHSU and recommended we contact Hospice as soon as possible to make arrangements for the future.

Do you think there is even a possibility that they might review his records? I know about the CAROLT risk assessment and he scores 43%(very high risk).

Would love to hear your thoughts. Again, thank you for taking the time to reach out to both the Chief of Transplant and myself.

Sincerely,

Kristine Denney

The stents being put in 13 years ago and the fact he was in excellent health prior to the liver disease, may not be a show stopper. I’d at least make contact with the transplant center and see if they will allow you to send his records over to them for consideration. If they are willing to see him then make a trip out. I’ll send you a message with the contact information.

Mark

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I am sorry your father is facing this at age 79. My transplant team told me that age was not a factor. (Northwestern Memorial Hospital, Chicago, IL) I was transplanted 8 years ago at age 65 years. The desire to live and the willingness to meet the challenge head-on are how I overcame hurdles with PSC. It sounds like your father has enjoyed his life living it to the fullest. I would continue doing the same. Meet each medical step with sureness and confidence. You can work with more than one transplant center. Gastroenterologists can only give you so much information. The specialist of the liver is a Hepatologist. I think that is to whom you should be directing your questions about your father’s PSC treatment. I worked with three different transplant centers, all in the midwest and learned they all did not disqualify a patient because of age. I wish you the best of outcomes, and like the others, will be glad to answer any questions I can.

Paul

I am 76, was diagnosed with PSC about 10 years ago after having jaundice, fatigue, reverse poop and pee colors, etc. Initially I was having big problems with “flareups” and was really getting depressed about it. Since then the symptoms have been sparodic, LFTs have been mildly high at times and other times have been almost normal and I have been able to lead a fairly active life. Recently the symptoms have returned LFTs have gone up again and I just finished up a second round of Levaquin to hopefully clear up an infection. I feel OK right now and am hoping I can be selected for Vancomycin trials being undertaken by the Mayo clinic. I try to avoid eating things that I know are hard on my hep system-fatty or fried foods, donuts etc and it seems to help. When I am fatigued I just rest and ride it out, so far I have been able to get through it and get my energy back. I just had my 5th metabolic panel blood test in a month, hoping things have improved. I have had friends and relatives offer to be tested for a living donor transplant but so far I’m not at that stage yet. BTW, I live in Independence, Oregon.

Indy, I am glad you seem to be doing well, and I hope you get good news about one of your potential donors if and when that time comes.

I thought the cut off was 70. I’m 62 & was worrying about it. I guess it depends on who is planning to do the transplant.

Seniors with far-advanced end-stage liver disease are high-risk for liver transplantation and have poor survival rates. In addition, seniors older than 65 have worse outcomes than those who are 60 to 65, and studies have shown increased mortality with increasing age as a continuous variable.