Hello. Iâm making this thread for my niece Mallory that was born with PKD Polycystic Kidney Disease with fibrotic liver (recessive). At the time of her birth, her condition was considered not to be text book. This may get a little wordy, so please bear with me. Iâm aware there are threads that already exist about PKD. But due to the rarity of her condition and her present age of 23 years, I thought it was justified. She has baffled doctors by surviving this long, since her parents were told not to expect her to live only a few years at best.
Last week, she became very ill due to a rather large bleeding varacie in her stomach. The gastro intestinal doctor that performed the endoscopy on her said that this varacie he found was the largest he has ever encountered and was going to submit the pictures to be used in medical text books. The only option she had was the T.I.P.S. procedure, and at best it would only last for one year. Less than a week after her T.I.P.S. procedure, she started showing signs of hepatic encephalopathy. She is currently on a list for a liver transplant and was admitted to the hospital today due to a fever. There have been a plethora of other complications she has endured over the years that I wonât get into since I feel they are not relevant to my query here.
Initially we were told that it is possible to treat the encephalopathy with meds and diet. She has not been put on meds for this yet. Iâm guessing it is because she wasnât showing signs of it until today. It has only been a little over a week now, so we are still trying to figure a lot of things out.
Iâve been to quite a few different medical sites looking for specific information on the best foods to eat and the worst foods as well. We are aware that a low protein diet is needed, but Iâve read that there are good proteins and bad proteins, as well as good and bad fats that can/will help or hurt. My intention here is to gather specific information related to diet and nutrition relating to her current condition. If there are specific foods to be eaten or avoided, certain fruits and vegetables that work better than others, vitamins and minerals that would be beneficial , either from personal and or professional experience, any help would be greatly appreciated .