Bleak prognosis

[pear-shaped]

Hello,

We met with the Consultant today. .

It seems that the tiny bile ducts in the liver are blocked with no possibility of stents.

If there is no improvement from the ursodeoxycholic then he will have to go back on the transplant waiting list.

pear

[AyrshireK]

Sorry to hear that Pear - only upside I suppose is he is probably healthier post transplant and has got back some guaranteed waiting time this time round (albeit uncomfortable). At least this transplant has given him that in removing the immediate risk through the cancer.

Fingers crossed if he is relisted your wait will be shorter than last time and 2nd time round all goes better.

Love to you both,

Katie xx

[pear-shaped in reply to AyrshireK]

Dear Katie,

It has been a dark day in the Pear household...

I have just relayed your message to him and he seems to have found it reassuring. He has said he doesn't think he can go through another TX. He is frightened and feels as though this is just another way of dying a slow death...

Hopefully these meds might do the trick...

Pear

[carmik]

Hi

I am so sorry.

Hopefully he will go to the top of the waiting list. Which I think should be the case.

But I can understand how you must feel at having to go through that all over again.

Which transplant unit are you under?.

Please keep me informed and I am here if you want to talk at any time.

Best wishes

[pear-shaped in reply to carmik]

Hello,

Royal Free...

Its all the anxiety of what ifs...

Thank you.

Pear

[PCBnPBC]

5 months post liver transplant myself, I have had an up and down journey so far, but I hope my 2 stents have allayed my problem, a second TX was on the list of options, so I have had to consider this........I guess it depends a bit on your general physical well being, but if that is what it takes......, time to grit your teeth (I have none as my calcium deficiency caused my teeth to be removed for TX) I know that once you have experienced a TX you now know what it entails...... but the alternative is not great either! My thought are with you, and I wish you strength, on today the international day of happiness, I wish you love, strength and happiness.

[pear-shaped in reply to PCBnPBC]

Thank you... I do hope that you are now on the mend and do not face anymore stresses...

Here's wishing you lots of happiness to you and your family...

Pear

[horsey1]

Very sorry to hear your news try and live each day the best you can. Kindest thoughts for you and your family.

[slck]

It was not clear from your post whether these blockages are a result of an auto-immune liver disease or not, but here is my son't story. My son, now age 25 was diagnosed with PSC (Primary Sclerosing Colangitis) 2 years ago. He also has ulcerative colitis. He immediately went on a gluten free, dairy free, low fat diet, and started a regimen of vitamins and supplements that included milk thistle, alpha lipoic acid, selenium, a probiotic, N-acetyl cysteine, and other detoxifiers. While his liver enzyme function values did not go down too much, they were reduced somewhat. One year later he had a follow-up MRCP done that showed that one of the strictures in his liver had disappeared, and there was no further progression of fibrosis or strictures.

About 4 months ago he started using low dose naltrexone (LDN). After the 3rd month, his liver enzymes went down dramatically; 2 to normal and one slightly above normal. If you haven't already done so, and if your condition may be related to an auto-immune condition, I would encourage you to investigate LDN. Start with lowdosenaltrexone.org and also Google Dr. Burton Berkson in New Mexico, who uses LDN combined with many of the above vitamins and supplements to treat a wide range of auto-immune diseases

[AyrshireK in reply to slck]

Sadly Pear Shaped husbands blocked bile ducts are complications from his liver transplant which he only had on Christmas Eve. It is a fairly common issue sadly with transplanted livers, like wise Brummi who has also had a transplant and is also now potentially facing a re-transplant due to the same complication.

Katie

[pear-shaped in reply to slck]

The liver disease was from Hep C.

I do appreciate you taking the time to share this wonderful advice.

I do hope other people do get to see this and take this excellent advice.

Pear.