It all began with non alcohol related chronic pancreatis, pseudo cysts and now necrosis. However he has not become diabetic, he has a blockage in his bile ducts, an enlarged spleen, ascites, and sever varaces in his oesophagus caused by portal vein thrombosis and fatty liver. (he has factor V clotting mutation which runs in our family) We are constantly being told that he is a very unusual case and presented with many complications. Furthermore we have now been told that nothing can be done. His duodenum is too rigid and an attempt to insert a stent to relieve his bile ducts was unsuccessful. No operations are possible due to the high risk of bleeding as the varaces are likely to be present throughout his digestive system. In the mean time his liver is being damaged further, increasingly so because if the bile duct blockage and PVT combined, it's a vicious circle. His doctor was surprised at the extent of damage to his liver and has now said that no operation would be done unless the risk to live becomes greater than the risk of bleeding and no liver transplant will be possible at any point due to the severity of the PVT clot, no vein to connect a new liver to. The medics have told us that there is no way to remove the PVT blood clot and that his liver is expected to deteriorate. This is so shocking and heartbreaking to think of, as his daughter. I'm clutching at straws trying to find anything we can do that could help, hes finally got a referral to see a dietitian but she provided no advise and said she wasn't sure why he had been referred to her, despite the obvious impact that nutrition and diet can have on these organs. I'm desperately seeing any other options while we still have time and would be grateful if any help or advice.
Regards
Rachel
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Rachel299
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I would get him on organic juices, buy a juicer, Jack Lalane is a good one. I am on carrots juice, apple, beet, kale. Blocked bile ducts mean he is not able to eliminate the foods he is taking in or he is very extremely limited in being able to. Orange juice creates bile. There is a chance he can get them open further, I believe, with diet. Without bile, you would not want to feed him meat, cheese, eggs. It takes too much bile to move them through the digestion process. I hope that helps, its how I keep going. I am no authority though but my doctors have been for years amazed by my ability to apply different methods for keeping my liver functiong. I now have had liver cancer for 2 years, I had Hep C for 42 years. I am a cyclist but it sounds that your father cannot exercise. Can you get him out to walk. Good luck. All of this is very hard!
Hi thank you for your advice. Sounds like you have a lot of experience, sorry to hear you are also unwell. Very grateful for some first hand advice, you have confirmed what I was thinking. I have read up on diet and nutrition but because it's not just one problem I've been worried to advise my dad personally as I don't want to make him suffer more. I've considered yoga as you're right he can't exercise. He's becoming very tired now as well as nauseous etc.
In your experience on a juiced and raw and reduced meat and fat diet do you have any tips for keeping weight up as he can't afford to loose any and the fortisip drinks the hospital give him are really full of sugar and artificial rubbish so we try to avoid relying on them.
Its not easy but it is simple. You must count grams of protein. Walnuts are soft, you can grind them to put them into banana smoothies. You can look online to see how many grams of protein he is supposed to eat a day. It does build new blod cells, protein but it is tricky as it can lead to built up ammonia. It sounds like he needs excellent carbohydrates. You can make him oatmeal but buy organic oats, they have the most nutrients. You can add walts to it. They need to be cooked at least 30 minutes and slowly. In the health food stores there are whole grain breads with low sodium but they have lots of protein. Any place you begin, he will improve as he is quite low right now. There are excellent organic yogurts and they are great sources of protein. He may be able tp porocess very soft eggs but fresh squeezed orange juoce with it creates some bile so it can move the eggs out of his body. Our livers can no longer perform much so we have to fuel them. One of the best liver fuels is organic dates but only one or two a day, get the soft ones. I juice a lot of carrots and apples, they move food out of the gut and body, so much pulp ruffage moves it. Kale is a great form of calcium so are bananas. He eats so little it will be not that expensive to buy organic. I do think in Englad your food is not as highly chemically treated as ours with pesticides. You are welcome to ask me anything. I hope you do. I will try to follow your progress with him. I do not expect anyone to follow my way but I am on no medications, I have not been treated for cancer, I will not be. I have refused transplant but with an encapsulated liver tumor just one, they would bump me to the top of the list. Oh I wish for better health yes but I am 64 and I have been in liver failure for many years. Even if you take his feet and massage them it will cause blod flow for the liver. You can raise his legs up and down for him, more blood flow. But get him on high quality organic yogurt as much as he likes. Never feed him food from tins or processed foods, too hard on the liver. Let me hear from you. Good luck dear.
I'm sorry you are having to go through this with your dad. I know its hard, but knowing that you are fighting to help him must be such a huge comfort to him. Even if there is no better options out there, your support makes a big difference to him, I am sure.
I would get a second opinion. And maybe a third.
Where are you? The US? The UK? What kind of doctors are telling you this? Not that they are wrong, these concerns are valid, but I am wondering if a second opinion from a different kind of specialist would be helpful.
Again, I don't have all the information and the advice they are giving you could be 100% correct, but... If the duodenum is too rigid to stent the bile ducts, how about a bile duct bypass? I think there is also a way to insert the stent by going through the duct instead of going through the duodenum. These approaches might have to be laparoscopic surgery, which is more invasive than endoscopic, so the risk of bleeding is greater.
Is it confirmed that varices are throughout the entire digestive system, or is that just assumed? If you could isolate where the varices are, perhaps they could be banded or otherwise reinforced to decrease the risk of bleeding. Decreasing the risk of bleeding could allow more options to try and treat the PVT clot or attempt surgery.
If the portal vein can't be used to connect a new liver, then you can use the other veins in some cases. Perhaps they can do portal vein bypass or a shunt along with the transplant to utilize the nearby veins instead?
None of these things are *the* answer, but I'm trying to demonstrate that there are still possibilities. It is an unusual case with many complications, but that just means you need doctors with higher problem solving skills.
When doctors say "nothing can be done", what they are really saying is "there's nothing I can do". They can't speak to what other doctors are capable of.
Every doctor you talk to might tell you the same thing, but it doesn't hurt to give the second opinions a chance.
Thank you for your advice this is really helpful. Wr are in the UK and I have looked online and seems the US offer a wider range of different treatments, some of which seem unheard of by our UK professionals which surprises me. I feel that the NHS are limited especially as he us such a complex case. You have confirmed what I have been feeling and I will encourage him to seek a second opinion. He has been having banding done on the varaces and luckily the professor actually made time to speak to us on Monday and he seemed surprised that the Liver specialist had given us such limited hope, stating that we can always hope for a miracle! Thankfully the professor said he will speak to the specialist as he has not found any varaces in the stomach, just the oesophagus. The medical system seems so disjointed sometimes and although dad has presented many unusual problems with no apparent cause, I do feel that given the severity of the pancreatis and the fact he has a blood clotting disorder he should have been given anticoagulants at least while he was recovering as PVT is known to be a complication of pancreatis, they also noted that the gall bladder was "sludgy" and the ducts were narrowing but months passed before they attempted the procedure. I can't help wondering if the duodenum would have been less rigid had they done this when they first realised there was a blockage.
Once again thank you for taking the time to reply, you sound very knowledgeable on the subject that k you for the advice
I agree! Can we have breakfast at your house? Organic oats with dates and eggs with fresh squeezed orange juice sounds so good! I think I can hear my liver saying "yes please"
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