50 liver cysts

andrey1496

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Jul 28, 2020, 1:24:29 AM7/28/20

to PLD Polycystic Liver Disease

Hello everyone!

I am new to this forum and wanted to share my story. I am a 40 year old male, 6 feet1in, 193 lb. Two weeks ago, my gastro ordered an abdominal MRI as part of the investigation about upper left side pain.

The MRI found 50 small cysts in the liver, the largest being 2cm. There was also one cyst on the tail of the pancreas (1mm), and one very small cyst on one kidney and the MRI also picked up a part of the lung, which had a 3mm

nodule (technically a micronodule). The hepatologist said the cysts are tiny and most of my liver area is healthy tissue.

All my blood tests came back normal.

My hospital has a Liver Board, a symposium of liver specialists that meets every week and talks about special cases, going over patients' images. The Liver Board did not think I had a PLD (I do not know why),

but they could not offer any other diagnosis, having ruled out everything else. So, a "mystery" cause, essentially. Their plan is blood tests every 3 months and MRI annually to watch it.

I was quite shocked when I learned about it. 50 cysts at the age of 40? I never had any problems with the liver until last year when I had a cytomegalovirus (CMV) infection that caused my LFTs to indicate

temporary liver damage. Since the recovery from the virus, all LFTs and US of the liver was normal as of Oct 2019.

Anyway, I have a couple of questions:

1) Is it "normal" for PLD to have as many as 50 cysts?

2) Are there any questions you can suggest I should ask the Liver Board?

I would appreciate your comments and questions!

Sincerely,

Andrey

Mike Lyons

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Jul 28, 2020, 2:18:25 AM7/28/20

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Hi Andrey,

It's a surprise the doctors don't think you have PLD. Please let us know your diagnosis when you have it.

I have at least a hundred cysts. Most are quite small. My liver CT looks like a picture of a cauliflower.

Mike

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Rebecca Wilkinson

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Jul 28, 2020, 12:24:57 PM7/28/20

to PLD Polycystic Liver Disease

Hi Andry and members of this group.

I have never really introduced myself but thought I would today.

My name is Rebecca. I am 56 and have PKD and PLD. I have an identical twin sister who has both as well. Oddly, my sister's cysts are large whereas I have what is called profuse inundation meaning innumerable small ones that look like grape sized blisters on my liver. My father had it, but he was tall like you Andry (6'4" 220 lbs), and never really suffered any negative effects from the cysts, just enlarged liver but his size could accomodate it. He died of lung cancer unrelated. My sister and I are more petite (5' 5") so it was not only uncomfortable (my sister looked like she was pregnant and for me my liver was pressing against my solar plexus and pushing out my ribcage) but also dangerous.

My sister tried many interventions that had no success--aspiration with alcohol, fenestration with the cysts being "shaved", and dietary changes such as reducing protein--but they were not effective so she had a liver resection through the Mayo in Rochester with Dr Nagorney in 2014. She had a very bad reaction because of bile leaks and almost died but survived through surgery with Dr. Paul Lin at GWU hospital in DC. I know that many here have likely had success with Dr. Nagorney but he cuts across the body laterally and Dr. Lin goes in laproscopically and vertically if he can so that is a consideration if you are contemplating surgery. Both are, of course, very dangerous because both lead to possible bile leaks which can be deadly. FYI my sister is doing well and the cyst growth has abated.

I had the surgery a year after my sister in 2015 because of the pressure on my solar plexus, performed by Dr. Lin. It went well in the sense that I recovered without complications and had no life threatening bile leaks; however, I did not recover from the anesthesia for 24 hours and there was concern that I might not. Thankfully I did. Unfortunately, 4 years later, my cysts have continued to grow again causing pressure in my stomach and solar plexus. This was really disappointing because not only had I been hoping that this would permanently stop the cysts from growing, but I had also believed that menopause (because of reduced estrogen) would slow the growth. I do not feel like surgery is a viable option again, unless it becomes more life threatening, because of my response to the anesthesia and the danger of bile leaks.

I had considered taking part of the trials that Dr. Torres with HALT-PKD was conducting with out of Mayo clinic but the results were not very promising so it didn't seem worth going to Rochester once a month. I don't know if there is any more promise on that front...

As a result I have been motivated to find alternative interventions. I will say that I had a very positive response to going on an Ayurvedic diet. I am not advocating this for anyone else, just really happy for myself that it had such a positive impact. The Ayurvedic diet basically eliminates wheat, chocolate, caffeine, fermented goods, vinegar, red meat, dairy, sugar (you can eat honey and maple syrup). I went on an Ayurbedic cleanse which also included herbs that help detoxify the major organs, especially the liver. I didn't lose much weight on the diet which was fine (went from 126 to 120 which is about right for my height) but my liver did reduce, especially in the left side where I was experience so much pressure against the stomach and rib cage. I have continued on this diet for 4 months now and the distension and pressure is greatly reduced. I plan to stay on it for a year and see what the CT scans show. That, of course, will be the ultimate measure of change. If anyone is interested in doing the cleanse, I did it through Dr. Douillard who is based out of Colorado but there are plenty of people who provide people with the herbs and give structured guidelines to do the cleanse.

Again, I am not recommending this for anyone else, just saying that I have had some initial success with it and plan to continue on it and see if it continues to stave off the cysts growth or, even better, reduce the size even more. Anyone is free to backchannel me if you want to chat about this.

Back to Andry, it seems like if you have a larger frame and you are not experiencing any problems as a result of the cysts, then your liver should be just fine (most of us, when we have blood tests, find that our livers are functioning just fine). As I mentioned earlier, my father had cysts but he didn't even give them a second thought.

Blessings to you all on this listserv and let's hope someday we find a way to prevent or treat this. Rebecca

Rebecca Wilkinson

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Jul 28, 2020, 12:29:52 PM7/28/20