Any one with Liver Disease who had a VSG?

Hi All,

I hope I can post enough information to make sense without rambling too much.

I posted a while back with my story (I have a rare liver disease called AIH which is advanced to cirrhosis with high portal tension). At the time I wanted advice about pregnancy (I'm 29 and would love a family).

Things have moved on since then, my liver doctor told me I am not healthy enough to survive a pregnancy because I have something called high portal tension (short explanation below). I can consider a baby if I lose weight and have a liver transplant. (I was hoping the order could be pregnancy, weight loss, transplant, but it looks like it has to be weight loss, transplant, pregnancy... if well enough).

The portal vein feeds blood through the liver where it is cleaned and filtered. My liver is being attacked by my immune system and leaving scars, the scar tissue around the vein causes it to narrow and create high blood pressure in the vein (I think this is how it works), the body then forms new weak "varicose" veins in the liver intestines and stomach, and these are a high risk of bleeding.

My surgeon is great an he is doing a lot of research into VSG with liver disease and high portal tension and I know he will only perform surgery if he is confident I can survive it. (My liver doctor recommended wls as I will need a liver transplant in the future and need to get to a healthy weight quickly so the transplant can be performed, as I am on steroids weight loss without surgery is even more difficult than usual and I have been unsuccessful trying).

For cirrhosis in general wls is ok, there is a lot of research that a restriction procedure (such as a VSG) and not a malabsorption procedure is effective without too mu*****reased risk (one main reason is that the whole digestive tract is still accessible via gastroscope in the event of bleeding). The weight loss can even help liver function (so the portal pressure may lesson and I may even be able avoid a transplant and have a healthy pregnancy/normal life span). However for people with high portal tension (in the severe catagory... I.e. me) no wls is recommended. This is due to increased bleeding risk.

Currently we will measure my portal tension again and if its below the "severe" range they will immediately do surgery (I've been told they would seize the window of opportunity so I would not have a great deal of notice to prepare myself).

In case my portal tension is too high the surgeon may take a calculated risk by performing the surgery anyway (since I need the transplant) and try to mitigate risk with blood transfusion and ensuring the surgery is performed at a center with a liver transplant unit. However this is still to be decided (he is still assessing the risk). 

My question to these boards is (sorry it took so long to get here) have any of you had wls with cirrhosis (with high portal tension), did/do you have any complications?

I do trust my doctor to make the right decision (if surgery is safe) but for myself I would love to hear from someone with experience. I would be quite worried to be the first patient to undergo wls with high portal tension.

I'm so sad to read your story.  I know first-hand about wanting to get pregnant and not being able to.  (I have two adopted children.)  And I certainly know about obesity. 

I don't know about liver disease, and the risks of surgery, but I have one suggestion on losing weight before surgery.  I don't know if it will be helpful, but it helped me pre-op.

Have you tried sticking to a low carb diet?  I was very obese 385 pounds worth, and I was told I had to lose 50 pounds before they could safely do the surgery.  They had me eat as I would post surgery. I ate three meals per day, comprised of 4 ounces of dense protein and all the low-carb veggies I wanted.  I chose to eat low carb because I know carbs cause cravings for me.  The only carbs I'd eat were from dairy and low-carb veggies.  No bread, pasta, potatoes, sweets, etc.  This worked for me, and I lost the 50 pounds and had the surgery.  I'm now a normal BMI at 163 pounds. 

I know it is hard to lose weight while on steroids, so maybe this isn't feasible.  But I just wish there was some way to help! 

I wish you the best in this struggle.

best wishes,

Carol

Hi Carol,

Your reply means a lot to me, it's hard to explain how much I want to be able to give my partner and I a child and I'm finding quite a lot of the time people aren't able to understand. So reading your reply was quite emotional for me. Thank you.

I'm certainly up for trying anything so I will speak to my doctor about the kind of diet you followed (i have to take care with high protein because of the liver). I'm currently 245lbs and 145lbs is the highest weight possible for my height (5ft6) to be in a normal BMI and eligible for transplant. So I need to lose exactly 100lbs. 

Thanks again for your message xxx

I have AIH as well and my liver is late stage fibrosis or cirrhosis (depending on where they take the biopsy it seems!)/  portal hypertension and enlarged spleen.  It was my liver doc who suggested WLS for the reasons you suggest ... decreasing risks in case I ever need a transplant.  As far as risks, I think as long as your LFT and PT are ok things should be ok for surgery.   its important to tell your WLS surgeon that you NEED to keep up with your liver medications immediately following surgery ... you dont want to go more than a day or 2 without those or risk a flare up.  I was able to swallow my huge cellcept within 2 days but it was uncomfortable and ended up getting a liquid form for the first 2 weeks.  anyway, if you want to talk further about this or how it's helped me, hit me up on facebook or email (I'll message you the details).  it's kind of a unique situation so maybe I cna be of some help or relieve some concerns for you!

Oh Pete you've given me so much hope! Thank you :D I have the exact same issue, late stage fibrosis / cirrhosis (depending on biopsy site) no complete cirrhosis seen, but I certainly have had the complications associated with cirrhosis (plural effusion, ascites, pancreatitis) 

I will definitely email and FB you :) can I ask what your portal tension was at the time of surgery?