An update to my current status.

A big thank you for all the well wishes to those who have left comments and messaged me.

It turned out that I was not having an organ rejection last fall but rather a bile duct stricture. I spent over 20 days at the Toronto General Hospital leading up to and during the holidays. My enzymes were the highest ever, I had a fever and had turned yellow. 

 Over the holidays, which by the way is the worst time to be treated at a hospital, two attempts were made to place a stent in my bile duct via a PTC procedure ( a percutaneous transhepatic cholangiography tube.) This is where they puncture a hole between your ribs between the lung and intestine to work their way into your liver. This failed because the angle of the duct was too though to negotiate with their instruments.

Now because the bile duct is strictured, my bile stays in my liver and I turn yellow. If untreated you die. They therefore leave the tube open to allow for the bile to drain into an attached bag. The bag is drained 4 times a day. The output is about 1.3 litres a day. Bile helps to emulsify the fats in food in your small intestine. So for now, the fats are passing through my system unprocessed which in the long run would have an adverse effect on my health.

Three weeks into January, I met with my surgeon who gave me three options.

1) A double balloon ERCP procedure. This is a procedure where instead of going through your ribs (which failed in my case) they go down your throat through your stomach and intestine and try to access the bile duct from the bottom. They are only giving me a zero to 10% success rate. This is because 2 days after my transplant, my bile duct disintegrated and was rebuilt with part of my small intestine. This procedure is called a Roux en Y. Because of the extra distance this creates, they need to add extensions to their equipment making it much harder to manipulate (more angles to deal with.) The biggest risk in this procedure is puncturing your intestine. I am also looking at replacing the stent several times.

2 Rebuild the bile duct again. This operation takes many hours to perform with a high risk of a bleed out. In addition, they already rebuilt my bile duct two days after my transplant and it strictured. This can happen again.

3 Get another transplant. This means getting on a waiting list for a liver. No guarantees, as this could all happen again.

Because the bile duct suffers from loss of oxygenated blood during and after surgery, 70% of liver transplant patients have bile duct problems. Of this, the % is higher for those (like me) who got a living donor partial liver. The partial donated liver does not come with all the plumbing. The other thing I found out is, the liver is the only organ that regenerates itself to 100% but the bile ducts do not.

I have opted for the ERCP procedure and am waiting until March 20th for the appointment. In the meantime, because I am losing an extra 1.3 litres of fluid a day, I need to go to the day unit at the transplant department twice a week to receive a litre of saline intravenously. I am already drinking lots of fluids to flush out the anti-rejection meds as they are extremely hard on your kidneys and risking dehydration could cause my kidneys to fail. 

I was very fortunate, my wife took 7 months off to be with me every day. She recently just returned to work.

I am looking forward to do my walkabout at the next PDAC in March.

....

My wife was at the hospital from 6:30 am till 10pm each day I was in the hospital. Many times it caught up to her. The medical textbook on the chair Medical care of the Liver Transplant Patient which she bought for a couple hundred dollars was her favorite pastime reading.  My hepatologist had contributed a chapter in the text. 

My bile bag since the holidays. The tube line penetrating my ribs has been replaced twice already. Each time necessitating a trip to the emergency department (once by ambulance.)

and me at a recent visit to the day unit to get my semi-weekly litre of saline. The procedure takes over 3 hours, so I bring my laptop to monitor my trades. I have made many new friends who have had liver, double lung, heart, and kidney transplants at the Toronto General Hospital.

Best of trades to all

RM