Hi my name is Jackie. I'm new to this site. I was dx with PSC in 2010 by Dr. Lindor at Mayo clinic in Minn. He left there a year later and I haven't had a hepatologist since. But I have been getting yearly ultrasound. Okay a little more background- not sure if its relevant- I had a total pancreatomy with islet cell transplant in 2011. They removed my pancreas and transplanted the islet cells into the portal vein of my liver, I suffered from hereditary pancreatitis for over 20 years.
So to my first question, my u/s last year said "diffusely abnormal appearance of the liver likely in relation to the patients reported psc. There is limited evaluation of the intrahepatic biliary system due to associated attenuation of the ultrasound beam. This also limited assesment for focal hepatic lesions. Common duct is normal caliber.
This years says : The liver echogenicity is diffusely hetergeneous. This was described on last years report but appears new when compared to the 2011 study. This is felt to be related to the patient's psc and is worrisome for developing biliary cirrhosis. Diffuse hepatic heterogeneity, which is felt to be secondary to the patient's psc and probable developing biliary cirrhossis. Extensive hepatic hetergeneous steatosis is also a possibility.
I have an appointment with a new hep dr. on June 18th. What questions should I be asking? Like I said after Dr. Lindor move to Az. I haven't seen anyone for my psc. Should I be concerned about my ultrasound results? I have honestly been pretending that there was nothing wrong with my liver. Hoping it would just stay the same. But I have never had a test result say that it was "worrisome'. Any advice would be appreciated. I am feeling a little overwelmed.
I don't know very much about interpreting imaging studies. However, my boyfriend has PSC and we went to Mayo in Rochester just this spring for his 3rd six month check-up. We met with a wonderful nurse practitioner named Andrea Gossard. She was intelligent, comforting, honest, and frankly a joy to talk to. We asked many many questions and I left feeling that my loved one was in wonderful hands, no matter what scary things are ahead for us. I hope you end up with her all though I am sure all the physicians at Mayo are top notch. The BF also sees Dr. Talwalker and thinks highly of him as well.
A hepatologist at a teaching hospital where they hold a teaching position is more likely to remain on the medical staff. Therefore, I suggest getting a hepatologist at a teaching hospital where they do both cadaver and living donor transplants. If there is no such hospital in your geographical area, go to the local hepatologist, and let them know of your prior PSC diagnosis along with your complete medical history. Have the ultrasound medical records sent to him/her before your appointment.
An MRI of your liver is more revealing of PSC than an ultrasound. The "worrisome" comment is something that could be cleared up by an MRI, a liver biopsy or an ERCP. A liver biopsy is usually performed to confirm the diagnosis. The ERCP is a brushing sample they do through an endoscopic (down your throat) procedure while you are sedated. Neither are as bad as they sound. You are better off knowing what the disease is than pretending it does not exist. Once you know, there is treatment that can help you remain healthy. PSC is a very unpredictable disease. Some people get sick in a hurry, while others live on for many years without any problem. Taking control of the problem is the first step. Good luck.
Wanted to run this by you guys and hopefully gets some input. Was just discharged after having a rough go round with PSC Anyway my primary Doctors all said my blood numbers were all normal. Being the curious patient that I am I looked them up. I’m a VA patient and in the VA you can look up labs and tests when there available. So the blood work showed Chloride High 109 normal range is 98-107,
Alkaline Phosphatase was high at 141 Normal is 45-117. Why didn’t my doctors advice me of this?? Anyone have an idea??
As to the diagnosis of PSC stick with a specialist who is up to date in this area. The Mayo clinic's researchers are probably the best informed about PSC..
Ask your present specialist, and general practitioner whether they have seen the following Mayo website about The Revised Natural History Model for Primary Sclerosing Cholangitis:
Check also with your pharmacist. Mine fortunately has a PhD and specialized in liver biochemistry. He has been of help to alert my MD's about possible problems caused by the various medications I have been prescribed.by the three specialists I have been seeing each for unrelated problems,
Many of us who are too old for a liver transplant may be surprised to learn that it may take quite a while before we reach the end-stage phase, Some other illness may get me first. My problems started in 1999 and at the age of 83 I am not complaining. Apart from the inconvenient effects PSC for which there is medication providing some symptomatic relief, I try to live a full life.
My heptologist is at the local University teaching hospital and the first person to suggest that my blood tests and symptoms were possibly indicative indicative of PSC was this specialists grad student intern.
My favorite resource for labs is Labtestsonline.org where you can look up any test and they will provide you with some ideas about what high or low results mean. I work in healthcare and recommend my patients use this when they are confused about specific numbers. In regards to your chlorine, the website says "An increased level of blood chloride (called hyperchloremia) usually indicates dehydration, but can also occur with other problems that cause high blood sodium, such as Cushing syndrome or kidney disease. Hyperchloremia also occurs when too much base is lost from the body (producing metabolic acidosis) or when a person hyperventilates (causing respiratory alkalosis)."
It looks to me like your chlorine was only a tiny tiny bit high, perhaps they decided it was due to a little dehydration or if you were stressed, hyperventilation. My guess is that they weren't worried about it at all and didn't even think to mention it to you because there was nothing to be concerned about.
However, your alkaline phosphatase is definitely significantly high. The fact that they said your labs were all normal when your alk phos was elevated is bothersome. The only thing I can think of is that they meant it was "normal" for you as a PSC patient and they don't expect it to go back down to "normal" for a completely healthy person. My understanding is that your liver enzymes will probably always be elevated because your liver is suffering constant stress due to your PSC.
I'm sorry you had this experience. It's nice that healthcare is moving to a place where patients are allowed more access to the data and can double check things. However, it does cause stress when we realize our physicians are human and fallible just like anyone else. Don't ever be afraid to ask questions and probe for answers from your physicians if it helps you sleep at night.
I hope you are feeling much better after your discharge. Have a good week!
Stephen Arthur Ristenpart said:
Wanted to run this by you guys and hopefully gets some input. Was just discharged after having a rough go round with PSC Anyway my primary Doctors all said my blood numbers were all normal. Being the curious patient that I am I looked them up. I'm a VA patient and in the VA you can look up labs and tests when there available. So the blood work showed Chloride High 109 normal range is 98-107, Alkaline Phosphatase was high at 141 Normal is 45-117. Why didn't my doctors advice me of this?? Anyone have an idea??