Bilirubin levels staying high
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Dear Katia, I am so very sorry for all that your family is going through but glad that things are starting to turn around.
When my Teddy was in Home Hospice, like your palliative care, we could order helpful things from them like the wheelchair. I had also ordered a “commode” to keep by the bed so Teddy didn’t have to be transferred to the loo. We were lucky as well to have him in a hospital bed which makes it easier for the patient to get up and out of bed. I am sure that being home is the best medicine Dad could have. I wish for his continued improvement. Yes, please try to keep us updated and thanks for this update, I sure know how busy you and your Mum are.Right, I don’t know where to start…
Dad stayed in hospital for 6 weeks! Yes, SIX weeks!! It almost killed his will to live.
He came back home to us last Saturday. He is receiving palliative care at home. ( in his case, flushing of the biliary bag, washing, …) Mum and myself are also looking after him 24/7.
Rather amazingly, it is like he is coming back to life, bit by bit! He had ascites when he left hospital and needed 2 punctions a week. Now, his belly is flat!!!
He stopped eating in hospital and then had an gastric occlusion .
He is now eating , slowly, small stuff, but went from nil by mouth to solid food in a week.
I don’t understand it fully other than he feels good here.
The ascites going away is really puzzling to me.Anyway, I will try and keep you updated on what happens next!
( also, for the first time in ages, his bile is green rather than bloody!!! And his jaundice is less and less obvious.)
However he is very weak. We use the wheelchair to take him to the loo.
Anyway, I must go!
All the best to you.
Dear Katia,
Hoping the antibiotics do some good and gives your dad some relief. Think of you all.
Hugs,
DarlaHi everyone,
Thanks for your replies.
The news are not so good. Dad has just been admitted to hospital with yet again another cholangitis. I have no idea if antibiotics will work on him anymore as he has had so many.
This is so hard.Katja…..our Percy responded to a similar questions in re: to bilirubin. This is his answer:
” I only know that the bilirubin excretion is related to the the breakdown of the hemoglobin which >120 days old(10-15%); and the production of bile is between 500-1000 ml daily.
I think the bilirubin level is depended on how effective the liver can process the fat in food, remove the toxins, and recycle the bile acid through gluconjugation and the disease state of the liver.(ie: liver tumor burden etc.)I think the rate is different for each individual. and most of the time, you have to change the plastic stent in 45-90 days depend on the individual. My sister-in- law changed hers every 60days most of the time. It is more related to the function of the liver(the bile flow) rather than the changing of the stent.”
Hope this helped, Katja.
Hugs,
MarionKatia, so sorry that you had to post this report. Teddy had stents but fortunately never had a problem with them. Not sure what is going on as the stents usually bring the Billie down! I can only send love, hugs and prayers over to you!
Oh Katia,
I am so sorry you are going through this. I wish I could help with the stent problem, but I have no experience with them. I am sure someone will chime in soon. Please hang in there and keep us informed of your dad’s progress. Praying the bilirubin comes down so he can have additional treatment.
Melinda
Hello there,
Well, the past few weeks have been more than eventful.
After the amazing news that the PIPAC is working to get rid of dad’s peritoneal metastasis, we had , only a week after he came back from his 2nd round of PIPAC treatment in Germany, to come back to earth with an almighty crash as dad ended up in hospital again with the dreaded cholangitis.
Yes, you guessed it, the jaundice is back. He stayed in Hospital for 2 weeks. To sum it up:
He now has 4 metallic stents. He came home last Friday. Bilirubin was 9. Today it is 12.
Yes, TWELVE!!!!
He is so weak and also realizes that if his bilirubin level does not go down, he will not be able to have any further treatments. ( he needs to be at a maximum of 2 for the bili in order to have the PIpac.)
This is so frustrating. I think he is losing hope. And well, I can understand why.
So my question is’: do you think it is possible for those levels to ever go down again?? He has a super wide stent now, near the duodenum and we really hoped that would do the trick. It clearly does not.
The other incredible thing is that in almost 5 months, his tumour has not grown in size, but he now has those bilirubin problems. Why? I don’t get it. I really don’t.
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