Frustrated and dejected

[zvhipp]

Hi, so my father had been discharged from the hospital with heavy ascites, no endoscopy was performed. He went there for a simple constipation on his foot and ended up spending a week. His constipation was solved within minutes but doctor offered to drain his ascites and they did a drain of 2.5litre. He was feeling great and was also given iv diuretics. Suddenly he went in to sleep and developed HE. His ammonia had went up. They treated him but kept giving iv fluids which was bit more than he urinated. The senior doctor advises junior doctor to give him iv no more than he urinates but they didn’t pay attention.

They kept feeding him throwing nasogastric pipe. Even though he was fine Eating with mouth. But did not make him sit up and none of the liquid diet passed his stomach. It all backed out on 4th day when I noticed his pipe full of it and had nurse open it.

They than discharged him saying he won’t make it out of hospital so take him home and see through his end giving him comfort.

I couldn’t believe it as HE was under control, his Liver and Kidney reports are well within range. But iv fluids they gave, totaled his ascites to about 13ltr. They were not interested in draining it. They said it will just fill back up.

He was scheduled for endoscopy to check and band varices prior to this incident. Now at home he eats little, talks but sometimes gets confused. He had blood couple of time in stool. He was 100% improved at home after bringing back from hospital but seems internal bleeding is keeps raising his ammonia for which I keep giving lactulose and rifaximin, it does it’s work.

Now, we sent his reports to specialists abroad and they said his symptoms are fairly treatable but evl banding and regular drain as needed if not controlled by diuretics. He urinates up to liter which is no less than liquid he consumes.

But no doctor is willing to help. Just don’t see him making long if he keeps bleeding.

[Laura009]

Sorry you are not happy with the treatment your Father has been receiving but l fail to see how specialists abroad can say they can treat him just by seeing his reports and not seeing him in person. Best of luck !

[zvhipp in reply to Laura009]

Thank you. We also showed his reports and did a video conference to doc in another city and they gave same positive response but due to Covid 19 restrictions we can not travel there as it’s about 600 miles. And he is not in position to travel by road.

[TT-2018]

I am sorry to hear about your father and wish you the best and hope that things improve. Whilst waiting for my transplant, I would regularly build up with fluid and was drained up to 14 litres every three weeks. It comes with a risk from infection and I ended up getting peritonitis. If the diuretics work, it is definitely a safer way to proceed.

Good luck with everything.

[zvhipp in reply to TT-2018]

He seems to be near 12-14 liters approximately considering his size based on previous drain. He is urinating average 1 to 1.3 liter per day and takes Dytor 10 Plus once a day. So diuretics do work but we can’t give him higher dosage as it will affects kidney and he has ckd. Drain will help him to manage his ascites or keep them under control for few weeks or may be longer but Doctor is not willing to drain more as he says it will just come back. I did argue that I understand that part but presently we need to give him symptomatic relief. They are not willing to do endoscopy either.

[Hidden]

We are sorry to read your father is unwell with liver disease.

If you have concerns regarding your fathers care, we would suggest to consider contacting the The Patient Advice and Liaison Service (PALS) department at the hopsital he is under the care of. Here is a link to the PALS NHS page:

nhs.uk/common-health-questi...

[AyrshireK in reply to Hidden]

Unfortunately zvhipp is one of our foreign based members (India) and has had issues with appropriate care for Dad since day one.

Katie

[zvhipp in reply to AyrshireK]

yes, here things are different. We have to go visit different facilities for endoscopy, ascites drain and iv fluids etc as major hospital are turned into COVID patient facilities. They are just denying him a chance to prolong his life or provide some relief from symptoms to make him comfortable even if it may be temporary because transplant is not an option for him and they just Don’t see him living without new liver for long term which we understand very well. He is at home in bed, tired, drowsy sometimes. Eats very less, talks with us but with ascites he struggles to get up on own. It’s sad as we feel we are just not able to get a treatment for him and letting him die before his time.

[123AF]

Hi There,

I am so sorry you are going through this. I’m not sure about your area but there are medical transport services here that are able to transfer patients unable to travel. My husband just received a transplant days ago and we were flown on a medical jet. Try to research medical transport services to see if there is anything available to get him to a higher level of care.

I hope this helps,

123AF