Block duct/High bilirubin
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Andie wrote:How lovely four girls. You will always have a shopping partner.
Yes, I am looking forward to that stage. At the moment I am just a taxi driver for all their after school activities !
I’m not looking forward to the time when I say ‘ Well in my day…..’ or ‘You’re not wearing that !’ I am sure it will come all too soon but in the meantime I still think of myself as young !hugs
Jemima
Jemima wrote:As for the babies…well I have four girls. The first was good as gold so we thought baby number 2 would be terrible, and then number 3, and then number 4……but they all slept well, fed well, and played well. However, the teenage years I am SO not looking forward to. The eldest is 8 and we can see small glimpses already of what we have in store !best wishes
Jemima
How lovely four girls. You will always have a shopping partner. My son will only come with me now if the promise of a cookie break is an option! My son is 9 and I can already see small glimpses of the teenage years too. Looking back he has been an angel really, it’s just now his halo seems to be slightly falling lol
Best wishes to you all
Hi Andie
Sorry I can’t help on the symptoms front. When my mum has been yellow she has had all the itching, nausea etc that usually goes with it. I hope that your Dad continues like this for a while yet as it sounds like he is doing well despite the symptoms he does have.
As for the babies…well I have four girls. The first was good as gold so we thought baby number 2 would be terrible, and then number 3, and then number 4……but they all slept well, fed well, and played well. However, the teenage years I am SO not looking forward to. The eldest is 8 and we can see small glimpses already of what we have in store !
best wishes
Jemima
The babies, holidays and happy memories are the thing that give your dads the strength to keep fighting. We all want more time, to see more. They will be valuing every day and be so proud of you all for fighting alongside them.
Andie – my cousin is exactly the same, her second daughter has been so difficult right from day one (christmas day!) ‘if I’d had her first she’d be an only child…’ is a direct quote!
Me, I’m likely to experience a fall – my son slept 7 hours on his first night at home and cut his first tooth today without noticing! And I barely noticed being pregnant (through my dad’s diagnosis, whipple etc) and walked 3 miles over four or five stiles 12 hours before he was born. So any baby with issues or problematic pregnancy would have me reeling.
I’ll just keep on with the assumption that further offspring will be the same…
Thanks all.
We were told Dads bilirubin level was rising on average 5 per day. Which is how I have worked out that it may be in the 400s.
He is very day glow yellow but has no itching or other symptoms, apart from eating less.
Dad has now ordered Ensure drinks to help give him extra nutrients, he only likes the juice flavour. Hopefully these will help him.
Kate, I will ask about creon, thanks.
Jen, our Dads are fighters and positive thinking is the way to go. I’m hoping Dad is still around in June after our florida trip, as he so wanted to hear all about it, and if it’s up to my Dad then I know he will fight tooth and nail to still be here.
Now onto the one child policy. I had a terrible pregnancy, 9 months of sickness and hospital admissions, which put me off having anymore. Mainly due to how would I cope looking after my son if I had the same sort of pregnancy. Luckily our son slept well once he hit 3 months of age, apart from the teething stage, but my those 12 weeks were tough lol. We just seemed to settle into our own little bubble and we decided we would stick with one. This allowed me to work part time, working hours that still lets me take and fetch him from school and attend class assemblies etc. He has lots of friends but I do often wonder if we should have had another, perhaps then he would argue with them instead of me! My cousin had my goddaughter the same time I had my son, and I must admit she was an angel from day one, but her little sister is the total opposite. My cousin said if she’s had her first there wouldn’t be a second lol!
Andie: My husband Tom also has high bilirubin level, his highest was 24.9 which is (I belive) 2490? Currently his is at 9 or 900 and he has never experience any of the itching or brain confusion that so many others experience. His external drain accumulates about 100ml every 24 hours.
So, just be thankful that your dad does not experience any of the itching as it can be unbearable so I hear. As long as he has some color to his stools it does mean that some bile is getting through. When/if the stool turns white (no color) then there is no bile getting through into the intestine.
Feel free to ask any questions if you need more detailed info!
Go with God, and KEEP KICKIN’ THAT cancer.
Margaret
Andrea – I think it’s so wrong for doctors to give a time frame… how are they to know how long someone will fight? I would have to say that his bile is draining, at least to some extent. I hope, along with everyone else, that he has much MUCH longer then he was given! He sounds like he is doing really great! So glad to hear he is not in pain, and still able to eat small amounts. Dad drinks a boost (with extra calories) every day to help him get a bit of extra nutrients, and try to help keep his weight steady.
I’m also loving (and giggling at) the one child policy conversation! My daughter (who was actually Dad’s first grandchild) was a dream as well. She has also helped us all through the last 9 months, so I know what you mean Kate! She’s 14 months, and we want a second eventually too… I don’t know if I could handle one that didn’t sleep after having Katelyn, who was sleeping through the night almost immediately! My sister (due in January) is having a boy – my Dad’s first Grandson. He WILL be there to hold him – I’ve decided I can’t continue sit and wonder IF it will happen, I am just going to believe that it will. He won’t give in before then, and hopefully not anytime soon AFTER he’s born either!
Jen
Ha, ha, Katja…..leave it to chance. All my children turned out fantastic. They differ with their needs and wants.
Hugs
MarionAndie,
I’m fairly sure that no amount of drinking could produce light coloured urine if no bile was getting through. It has to be draining somehow. What makes you say your dad’s bilirubin must be in the 400s? Is that just because it was increasing all the time? My dad’s was 450 initially, and he was itchy, pale stools, dark urine, and felt really really unwell. As soon as his stent started working some of those things started to improve. So I’d say your dad is draining some bili. Is he a dark yellow colour? Does he take creon? The doctor (who trained in US) told us that it was important dad take creon right from the diagnoses (regardless of whether his resection was successful). This helps with digestion and might be something to ask about your dad’s fullness.Marion, I’m rather worried about your view on the ‘one child policy’ – my baby, born April, has been the easiest baby you could imagine and a wonderful grandson to help my mum and dad through his illness. We are contemplating another child, but I was sort of hoping it would take after its big brother?! I will get a shock if number 2 doesn’t sleep through, or cries etc…
Kate
Andie…sorry for the confusion on my end however, I am glad to hear that the answer pertained to your question.
Just wanted to ask: are you really sure about the one child policy? I had been so very impressed with my first son that I thought for the next to be just as easy to raise. Well, I was in for a surprise, as my daughter was anything, but easy although, I could not think of having a better relationship with her than what I have with her now. My second son (the baby of the family) was the easiest of all my children. I also have become a grandma and am able to experience loving him to pieces all the while returning him to Mom and Dad for the harder parts.
Best wishes to you,
MarionHi Marion,
That’s what I thought. Some bile must be flowing which is good to hear.
I think you have got me mixed up with Jen and her sister though, (our stories are very similar) as far as I know I’m not expecting another child, the one I’ve got is more than enough lol!
Thanks again for your reply,
Best wishes
Andrea
Andie….It appears that much of the bile is continuing to drain therefore, some of the other issues such as clay colored stools and the itching associated with build up of bilirubin have not surfaced. That is great news. I wish for it to continue and for your Dad to stay this well and that he can hold his first grandchild real soon.
Best wishes,
Hugs
MarionMy Dads Bile duct is completely blocked by tumor growth and kinked metal stent. Despite having 3 stents and an external drain we were told there was nothing else they could do for Dad and that he had 3-4months left.
This was in September and we are half way through our 4 months.
Dad is eating little and often, he has lost a little weight but he doesn’t have any other symptoms that he should have. He did go through a stage where he was sleeping mid afternoon but he hasn’t done this for the last week.
His urine is slightly dark first thing but throughout the day is light which we are putting down to the amount he drinks.
He collects 200ml of bile in his external bag per day.
But we can’t understand why he is not itching and his stools are normal colour. Does this mean some bile is getting through?
He is in no pain and apart from the occasional feeling of fullness which is says is annoying he seems to be doing really well considering.
His bilirubin must be in the high 400s (40s). Has anyone else not had the usual symptoms that usually come with biliary obstruction?
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