Sodium: 139
Bilirubin: 0.9
Creatinin: 0.7
INR: ? (I entered 1.1)
ALT: 234
AST: 131
Alk Phos: 612
With a MELD of 7 you are doing pretty good I would say although your ALT, AST and Alk Phos are not in normal range. As long as your bilirubin stays down you will probably not notice many symptoms. When that starts climbing though the itching will begin and that will be a good signal to check labs again. I hope you continue to do well. Please let us know if we can help with any questions in the days ahead.
Mark
So I have a few questions because Iām concerned and not really sure what to expect going forward. Iāve had right side pain going on now for over 3 months. I got an ultra sound, CT and now MRIā¦ I also had an endoscopy done for some biopsies as well. My liver is enlarged at 20cm so mildly enlarged from my understanding. My blood work has come back pretty normal, so the concern was why so much pain but nothing to indicate anything as far as my liver. Well my MRI I got done said possibility of primary sclerosing cholangitisā¦ so looking at my paper work Iām assuming because I have beaded intrahepatic biliary tree. I tried looking up what would be associated with a beaded biliary tree and all I could find was PSCā¦ also I have some dilation of my common hepatic ducts and well as some narrowing intrahepatic biliary treeā¦ I guess my question would be is it possible to have normal blood work and have PSC? Seeing that itās on my MRI paper work is pretty scaryā¦ so I guess from reading all these comments above, itās hard for me to understand how I could be having all of that going on in my liver but all my blood work is normal.
Mindy,
Hi, and thanks for your post. From all that you are indicating, my first impression is you need an ERCP to rule out the strictures in your bile ducts. Please, Please make sure you see a hepatologist to have this done and not your local GI doctor. Most are not specialists in the treatment of liver disease, especially PSC. Even with normal labs there could be blockages, maybe not enough to raise bilirubin level too high but still enough to cause pain. Iād have this checked out. Please avoid taking any NSAIDās for pain relief like Advil, Motrin, Alieve, etc. Only Tylenol and no more than 3,000 mg a day. Keep in touch and let us know how things go.
Mark
PSC 2011 / Liver Transplant 2015
Mark,
Thank you so much for your reply. I see my doctor on Friday so Iāll hoping get an answer is to what the next step is. Thankful he does specialized in the liver, they made sure because the concern was how my liver was enlarged to 20cm with no blood work issues. Thank you so much, I havenāt taken anything for pain because Iām so worried to take anything. The thought of causing more pain is scary itās self. I do have a few questions if you donāt mind me asking. Is it common to have server right abdominal pain with PSC? Sometimes I feel Iām crazy for feeling that way. Would a liver biopsy be something I should take to him about as well? And they say an MRI is pretty accurate on a diagnosis for PSC is that true? I guess apart of me is because it says possibility, that thereās a chance it could be wrong. I hope all is well with you and again thank you so much!
Mindy
Mindy,
Yes right abdominal pain is very common with liver disease including PSC. It often will travel around to your back on that same right side. My dear wife and daughters a many a night when I returned from work would rub my back and feet to help me feel better. For me, when the pain got really bothersome it was my indicator I needed an ERCP to clean out my bile ducts. Itās fine to take Tylenol for any discomfort you are having. Just take 2 500 mg capsules no more than 3 times a day.
MRCP which is an MRI of the liver and other abdominal organs is one of the methods used to look at the biliary tree and see if there are any strictures (blockages) in your bile ducts. The gold standard though to get an absolute diagnosis of PSC is the ERCP procedure, which is an advanced endoscopic procedure that they go down your throat, into your stomach and out and into the common bile duct. From there they can check out your pancreatic duct and the bile ducts of your liver. Itās am amazing yet invasive procedure that you should not allow just any GI doctor to perform on you. Make sure you use a hospital that does these all the time that is associated with a liver transplant center. They may also want to do an endoscopic ultra sound as well to check for cancer, etc.
Just take it one day at a time, have a good support system in place to be with you through every appointment, etc. There is hope, help and a life with and past PSC. Let us know if we can be of further help. Iāll be thinking of you on Friday.
Mark
Mindy,
Pain can vary patient to patient. I had some sharp pains occasionally, but had a lot more of what I call ātwingesā, which would be very low-grade pains that would last a second or two. Maybe just enough for me to notice and say hi. There was a nasty pain that put me in the hospital a month before my transplant. My doc never said or got excited about any of my pain levels.
Sometimes I would like to tease myself whenever I got an RUQ pain or twinge and think, āWell, there goes another bile duct.ā
On you question of a biopsy, that is usually not the best way to diagnose psc. One member posted several weeks ago to the effect that the pain involved was not worth the benefit.
Jeff
My liver readings were over 1,000. An ultrasound was ordered & they found a large mass in my kidney. Once it was removed we thought all was well. But, shortly after the kidney was out I started getting itching, vomiting/dry heaves, fever & chills. My doctors couldnāt figure out what was going on. My bile duct had a stricture in it about 15 yrs. ago. I asked my doctor to check it out. MRIs & CT scans point towards PSC. Iām now Vit D deficient & liver enzymes still not normal. I get a colonoscopy in November & am waiting to get scheduled for my liver biopsy. Meanwhile, Iāve read many people can live a normal life. Some 10-25 years before they need a liver transplant. Then they lead a normal life after that. When I first found out about the possible diagnosis, I was devastated. Now the only time I really worry about it is if Iām going to be away from the state for a week or more. Then Iāll have a prescription for an antibiotic in case fever & chills return. Iāve had to miss work for doctor appts & tests, but others at work miss a lot more days than me so I donāt feel guilty. Besides, my boss knows itās for health reasons. Continue to make plans for the future. This disease is unpredictable. Donāt assume the worse.
How do you find out about different stages? How many stages are there?
Merry,
Thank you for your post. I know the news of possible PSC is overwhelming, but I want to assure you there is hope amidst the trial you are entering into. We will be here to help you all the way through as best we can, providing you information etc. I would not put my hope in the 10-25 years before transplant. Although it canāt be ruled out, thatās not what we are seeing in the cases I am familiar with. If you get PSC in younger years it is possible that there will be a longer amount of time. There are so many variables and each patient is different. Just take one day at a time, educate yourself, involve your family. It is very important that you do that and that they understand whatās going on with you. Itās not in your head, and you will need their 100% support through these years before eventual possible transplant.
Just a couple questions I would ask you. I assume you have copies of your most recent labs. Use the MELD score calculator below and let us know what the reading is. MELD score goes from 4-40 with 4 being the least liver damage and 40 being the worst and at a critical stage of needing a transplant. I was transplanted at MELD 36. As far as stages, cirrosis stages are from stage one through stage 4. Colonoscopy is normal for PSC patients. I would hope they will do an ERCP procedure soon. That is the āgold standardā to determine with out a doubt it is PSC, as they are inside your bile ducts and can see whatās going on and dilate and get the bile flowing again. Often after the first ERCP you might have a long period of time when things seem normal again, then when the bilirubin starts climbing again you will know itās getting time for another intervention.
Well hereās the link. Please let us all know how you are doing and what your MELD score is. One final important point. If it is determined that you do have PSC, please transfer over your complete liver care to a hepatologist associated with a transplant center. Your local GI is not equipped to fully treat your disease in most cases.
https://optn.transplant.hrsa.gov/resources/allocation-calculators/meld-calculator/
Mark
PSC 2011 / Liver Transplant 2015
I had several ERCPs to put in stents in my bile duct. My MELD score is 7. I just turned 60. So what is the average length of time between diagnosis & liver transplant? I wonāt know my cirrhosis stage until I get my liver biopsy done. My doctor said all tests point to it being PSC & gave me a paper on it. She also said until the liver biopsy is done the diagnosis wonāt be 100% made.
Ooops. I mean my MELD score is 10.
Merry,
It would be hard to put a pinpoint on the average but probably somewhere around 10 years. Some of us were not so fortunate. My time from diagnosis to transplant was 4 years. Now, Iām sure I had PSC for many years before diagnosis but didnāt know I was having issues since I was not losing weight or itching. But in reflecting back I for many years have had a natural sun tan even in the winter and mainly in my face. So that tells me that something was back there that I just didnāt realize. I was diagnosed in 2011 after a period of weight loss and then the itching. They did a liver panel which came back elevated pretty high. Then after MRCPās, Endo-ultrasound and ERCP the diagnosis was confirmed. If your ERCPās indicated PSC that is probably what you have. When I was diagnosed they said I had a perfectly healthy liver but then over those 4 years it deteriorated and at transplant was like a burnt shriveled up hamburger.
I was listed for transplant in January, 2015 with a MELD of 12. In April the MELD went to 19 and then the middle of July the MELD climbed to 36. I was transplanted two days later. So you can see we are all so different. My first biopsy was probably 2 years after diagnosis during a liver study I participated in. At Duke Medical Center biopsy is not a requirement to establish whether a patient has PSC or not.
Keep in touch.
Mark
So an ERCP alone can be the diagnosis. It was confirmed with the blood work & MRI. I guess the biopsy is for staging. Thanks for the information!
Merry,
Yes, the biopsy shows the stage of the cirrhosis. The ERCP identifies without question that it is PSC or not. If the doctor performing the ERCP can visually see the strictures in the bile ducts, the beading, etc. he can give a correct diagnosis from my experience. When I was first diagnosed with PSC, they told me based on the imaging that my liver was perfectly healthy at the time. Then over time the disease of the bile ducts with lack of bile flow then destroys the cells of the liver causing cirrhosis. Hope this helps.
Mark
John,
Iām just checking in to see how you are doing?
I was thinking about you (everyone one here) & hoping you all are doing ok.
AJ