Living with jaundice? Stage 4

Hi Savona16. You are right, no one can say how long your Dad has left. When my partner was very ill I also found the lack of information frustrating, you just want to know so you can prepare yourself! If the journey has taught me anything its that every case is different. My partner presented with jaundice, and that was the reason he was diagnosed. I think you have to be prepared that things could happen very quickly or take weeks. Perhaps a phone call to macmillan would help. I wish I could be of more use, I remember that feeling of uncertainty so well, I even felt guilty when I asked how long they thought he had left, as though I was wishing him away. It certainly isn't that, we need to ask in the hope that we can care and cope better, I hope someone with a more similar experience will help you more. I just want to say that I hear you, Pam xx

Hi Savona 16

These are wise words from Needing Friends. Unfortunately, even the best medics cannot say how long someone has. The only other advice I can add is to take each day as it comes.

Our experience like Needing Friends was that my husband developed jaundice at the time he was diagnosed. After surgery it went away but the cancer returned and my husband became jaundiced towards the end of his life.

Feel free to pop in here to let us know how you get on.

Squeaky

Hi Savona..sorry to read you are going through this with your dad.  My husband was diagnosed with pancreatic cancer in November last year.  One of his first symptoms was jaundice. ... it took about 6 weeks for him to be admitted to hospital and for the stent procedure to be performed successfully...after 3 attempts....he was so jaundice by then he was bright yellow.  His bilirubin levels were over 600...should be normally less than 25.....it was getting very critical by that stage and the Drs were worried ...you see bilirubin is toxic when left in the body ..it is supposed to be excreted via the bowel .......you ask can he live with this?...the best answer is no one can when it reaches a certain level.....it shouldn't be in the body at high levels ......

As with my husband i believe he is end of life as he hasn't eaten anything in over a week, he doesnt produce much urine, his feet and ankles are swollen,  he is very weak and sleeps most of the day.....i think everday whether it will be his last...the nurse said maybe days and that was 6 days ago ....you just don't know....iwas a district nurse for 6 years and from my experience i have seen patients go into a coma for days before they pass then others that were talking and reminiscing with family during  the day who passed in their sleep....I just want to be ready but all i can say is that I have faith at that moment  I will be ready... me and the kids are around my husband daily in lockdown enjoying him and the lovely weather. It's sad my husband is only 59 ... but such is life....

.im thinking of you and your family

Take care

Carli xxx

I do feel guilty for asking these questions but I hate all the guessing and uncertainty. I'm due my baby in less than 6 weeks now and I'm starting to struggle mentally with it all. 

Thank you for your message! Its a horrible thing to have in common but it's somewhat nice to know someone else knows what I am going through. 

Thank you again Pam. 

Hello Squeaky, thank you for your message! I'm trying to take everyday as it comes but there seems to something new everyday now.

I'm sorry to hear about your husband. Dad never had jaundice at the start and has only come in the last few days. They won't stent as it's too risky with how unwell he is already. He seems to be getting more yellow everyday which is scary. 

Hello Carli, I'm sorry to hear about your husband. That's such a young age. Dad is only 64 himself. 

They won't stent dad as they are saying it's too risky with corona and how weak he is due to his weight etc 

He's been living with us since May last year so it's been scary seeing the decline especially in the last week or so. We also have a 3 year old and I'm 34 weeks pregnant. 

He is still eating, small amounts so I'm hoping that still means we have longer left. We've also just had a hospital bed delivered so hoping that will make him more comfortable. 

He's obviously a fighter and wanting to spend as much time with you as possible. 

I'll be thinking of you. 

Take care xx 

Anytime I can help, I'm here xx