Primary Sclerosing Cholangitis (PSC)

@contentandwell Your post is bringing back memories I had put out of my mind. During the last few of months of chemo I put on 50 pounds due to water retention. It got so bad I was diagnosed with congestive heart failure. I spent a week in the local hospital. I went home for a week and then was admitted again. This time my PCP sent me to Mayo where I was diagnosed with aHUS a disease that was slowly damaging my kidneys. It took several months of treatments and adjusting my meds before I got rid of all that fluid.

I did have mobility issues big time. I showed no symptoms until my early 40s when during a routine lab draw my labs were all over the place. My diagnosis was attributed to 100% alcohol. I did drink in my 20s and 30s however it seems real fishy to me this was the only reason given what I consumed. I did have an MRI that recommended Ercp however it was never conducted due to risk factors given my higher INR. I also never had a liver biopsy done.

Also I was tested for celiacs and was positive for both gene pairs however I have not had a small intestine biopsy yet due to my recent transplant.

I’m just very fortunate to have been transplanted and have been doing well 2 months post op.

So to answer your question, I’m not sure I guess 🙂

@rodney9999, @marvinjsturing, @contentandwell
Wow! Just look at us. Different medical issues, and the same bothersome swelling. I think it really illustrates what my doctors have always said about us each being different. I marvel at the skill and knowledge that my doctors used to discover my disease and necessary care that led to my transplant. It was a miserable and frightening journey. There were times when I didn't know whether I would live long enough for transplant. I celebrate that I am beyond that, and as a result I take good care of these precious life saving organs. However, my heart is heavy with concern and caring for those who are currently experiencing their own complex issues while waiting and hoping for a transplant.
@contentandwell, I still shed tears,and so does my family when we remember those times.
@marvinjsturing, I commend you for the strength and determination that you have demonstrated to bring you where you are today.
@rodney9999, I am happy that you are doing well with your new liver. Thank you for posting this question about swelling. Regardless of the underlying cause for transplant we are here for each other. I welcome you to continue to ask questions and to read (and participate) in any of the discussions on Connect. You are among friends here and we would be happy to help you adjust to your new way of living with a transplanted organ.
Rodney, I only asked you about the PSC because there is a PSC Page that contains up-to-date research information about PSC as the search is ongoing for a cure. https://connect.mayoclinic.org/page/psc/

You will get better results searching for the condition when fully written out instead of the initials. I think you are talking of primary sclerosing cholangitis. I may have it misspelled. If so I came up with this site: https://pscpartners.org/nutrition/ . I honestly have never heard of this one... but there are many conditions I have never heard of.
ZeeGee

When I look up stuff for PSC, I often get info for PBC. Why? What are the best foods for PSC. I know there are several diets out there and I know some people are hung up on fats and carbs, pro and con, but disregarding people’s ingrained beliefs, what would be the most healing foods for this condition?

Has anyone with PSC had a positive or negative experience with any particular diet? What experience has anyone has withKeto or high fat, low carb diet?

Hi @sandyjr,
I moved your message to this conversation about PSC so that others could read more of your story to help with your question. Simply click VIEW & REPLY in your email notification to find your post.

Would you be able to share a few more details (in this discussion) about your daughter’s diagnosis?

Hi, @sandyjr. I have located some nutritional information for PSC patients that I am sharing with you. But first, I want to remind you that PSC is a chronic disease, and one must be careful to maintain a healthy lifestyle and diet. It is necessary that your daughter follow the advice of the doctor who is supervising the PSC.
http://pscpartners.org/nutrition/
In the Nutrition section on this website it reads "There is no specific PSC diet and most patients do not have to make any changes, except to continue to eat in a healthy, sensible way. But many PSCers have related digestive issues, such as ulcerative colitis and other gut problems, and need to stick to a specific diet, as advised by professionals."

I also recommend this link to the Living with PSC Podcast. http://pscpartners.org/living-with-psc-podcast/
Each podcast is presented by a leading PSC expert. Any and All of them are worthwhile for both you and your daughets to view. I suggest that you both begin with:
EPISODE 2 – DR. CHRIS BOWLUS: DIET & EMERGING TRENDS
EPISODE 10 – DR. VALENTINA MEDICI: NUTRITION AND PSC

Sandy, What did you and your daughter learn from the podcasts that will be helpful for her to maintain a healthy diet?

sandyjr. I am concerned because I do not know if you got the nutrition that I sent to you. How are you? Your daughter?

I have tried a whole lot of meds, and ended up with the miracle worker Rifampicin. 1x150mg a day keeps the itching away!