Please……i need your thoughts.
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Hi Chelle,
Hope you get some answers soon. I know my Dads scans etc kept getting cancelled. We went to Leeds Monday and he was seen by the consultant, had a CT scan and was given the results in the same day. We were so impressed, unfortunatley it wasn’t good news but the care we were given was superb.
It is very very common to itch with jaundice, though for some strange reason my Dad has never suffered with the intense itching. If you type itching in the cc search engine you should find out more about it and how to help it.
Sending best wishes to you and your Mom
Andrea
thanks slittle.
Thanks for your reply. Sorry o hear about your husband ordeal with diagnosis. My mum got ct scan today, maybe get results tomorrow, though i really think its more likely to be at least 48 hours. Poor mum been in since Friday with the scan being cancelled twice in last 2 days. They say that with all the urgent cases they are very busy. (snowing her, people falling every 2 minutes.lol)
I managed to see her last night, poor soul is still very jaundice, and itching like nothing ive ever seen. Apparently this is normal?? Can anyone confirm this?
Thanks for all your replies and help answering all my questions.
Hope you are all ok
Chelle xxxxxxxxxxxxxxxxxxxxxxxxxxx
Dear Chelle – My husband had mild jaundice for a few months PRIOR to being diagnosed. He is rarely jaundiced now. He felt increasingly poor over a 2 year period, but no diagnosis despire going to the doctor’s ever 4 to 6 weeks. We changed doctors and had a diagnosis within a week. It’s been 4 really tough months. Even in an illness we experience grief – anger, denial, bargaining, etc. You will experience a lot of feelings and you just need to feel them while you seek more information and await the doctor’s review of records and diagnosis. Our thoughts and prayers are with you. Blessings, Susan
yes she has been told to droink and drink, them drink more,lol. They do seem to be very good with her i must admit. That must have been terrible for your dad, building himself up to get procedures, only to be let down again.
I do know there is sludge in the gallbladder, so hopefully it is this causing the blockage rather than the cyst/tumor.
My mum has managed to eat today which i am so glad about. Hopefully get to see her tomorrow depending on if i can get my kids watched for afew hours.
Thanks for responding. It has helped so much, i feel so much clearer on many things that were related to this.
You have been a great source of information, compassion and strength.
Chelle
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Hi Chelle,
I can understand your frustration. The not knowing is the worst. I’m an only child, my Mom doesn’t drive so I had to do 5 weeks of hospital visits, not that I minded. The hardest part was trying to keep things normal for my 9 year old son, but we did, you do find the strength to keep going.
Our hospital was terrible, Dads procedures kept being cancelled, which meant he was often nil by mouth for procedures that never happened, and nothing got done at weekends or bank holidays. This effected everyones stress levels. Once he was diagnosed with CC things did move quickly. He was sent to the Liver hospital and his stent was fitted. He was home 5 days after his first stent procedure.
I’m not 100% sure about gallbladder removal, my friend was in a few days but it took a few months for her to recover. They did it with key hole surgery.
I’m sure if they suspect infection they will act fast with antibiotics. My Dad developed a bad infection after his second stent was added. He had a very high temp and was sweating alot, so much you could have rung his pjs out. They treated it first with normal antibiotics but when it wasn’t working they gave him IV antibiotics and they got the infection undercontrol. You will tell if your Mom has got infection, shivers and chills are another sign.
I’d write your questions down and next time you go ask the doctor to answer them.
Get your Mom to drink LOTS, this helps.
Hopefully your hospital is more on the ball.
Good luck
Chelle:
Gross intraheptic duct dilation means that there is a narrowing of a bile duct in the liver. This could be from a tumor, cyst or sludge and if they do an ERCP (which they did for my Tom) they can then see if it’s sludge, and if so they can clean it out and would probably still place a stent. If it’s a tumor closing it off they can probably place a stent (which they initially did for my Tom) and also they will get brushing’s to test for cancerous cells. If it’s a cyst they would remove it if possible.
Gall bladder removal is not a risky operation. I have had mine removed and went home the next day. Recovery from that depends if it was done via a lap procedure or the old conventional way (longer incision). Regardless the recovery time to be back to normal is about 5 weeks.
Infection levels are generally determined by the white blood count. Anything under 10,000 is considered normal. When that count is over 10,000 then they will start iv antibotics.
If the blockage is determined to be a tumor, and surgery is a viable option, then it’s possible that they may consider a liver resection, but that would depend upon the placement of the tumor and if the liver artery is impacted. Tom was able to undergo a left liver lobe resection for his inital surgery. However 18 months ago he presented with another tumor that was wrapped around the hepatic artery so could not have surgery. He underwent radiation and chemo which killed the tumor. They could not insert a stent because between the tumor and the radiation, that portion of the bile duct was destroyed. He now has an external drain to keep his bilirubin at more normal levels.
I know the waiting for test results is awful and scary, but if your mom is in the hospital, then I’m certain that her docs are doing all they can to find out the source of her higher than normal liver function levels.
hugs,
MargaretHi Andie,
5 Weeks!! wow. Well we havent heard today how things are. I have 3 young kids, and being the weekend i cannot get up to the hospital. I am beside myself with worry, its always the unknown that is the scary part.
I understand CT is limited at weekend, but hopefully they do make exceptions in these situations. The ERCP, we expect to be done over the weekend, but again not confirmed.
We were told yesterday that the ERCP, CT, Stent were all the tests going to be done urgently, along with bloods again.
There is no sign of infection at the moment, but the risk is very high they say. They seem more concerned about blood levels than the cyst. Which i think is a good sign.
No antibiotics have been started, but they assure us it will be if they discover anything from blood taken yesterday.
My mum wants everything to be kept as normal as they can be for the kids, they keep her going. I dont want to take them to hospital to see her as i think they will be scared to see their usually fit and well gran in such an unusual environment. It just frustrates me so much when i feel i cant do anything. Suppose thats normal to feel.
Glad to hear results didnt take long for your dad, thats good to hear.
So what does Gross intraheptic duct dilation mean?
Is gallbladder removal a risky op?
How long is recovery?
How bad is the infection that they are worried about/ is it peritonitis they are referring to?Sorry for so many questions again, i feel you have all got great experience on all of this, and would be great to have an insight on what to expect to enable me to gain the knowledge of what (if any of this) we have to face.
Thanks again
Chelle
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Hi Chelle,
With my Dad the CT scan took a few days to get the results. The ERCP results were instant though, and if they can feel your Mom needs a stent fitted they can sometimes do it via the ERCP procedure. They may be able to remove cysts too. They were unable to do my Dads via the ERCP but from this they could tell the blockage was suspicious ie a tumor. This was then confirmed by the CT scan. Then they inserted his stent with the PTC procedure which is done by going directly through the skin into the liver.
My Dad has handled both procedures well.
I don’t know if things are the same in your hospitals but we never seemed to get much information during weekends and CT scans weren’t done either. Hopefully this won’t be the case for your Mom.
On admission Dads bilirubin levels were in the 300s, and 600 before stent was fitted. He was in hospital 5 weeks having various u/s, CT scans, ERCP, PTC. During this time he had to be moved to our specialist Liver Hospital to have his stent fitted via PTC.
Have they started your Mom on any antibiotics? My Dad had IV antibiotics when he was admitted.
Good Luck
Thanks Margaret.
We are in the UK, but docs seem to be doing well at moving quickly. As far as we know the CT is scheduled for today, and possibly the camera down the throat to see the best way of treating the blockage,After reading your husbands levels i feel my mums are not as bad as we first were led to believe. Your husband must have felt terrible.
Thre main reason they say they had to admit her was the risk or infection was too serious to be staying at home with.
I also meant to add yesterday, that when i read my mums notees, they say the diagnosis of ‘cyst’ is inconclusive. I guess this is normal. At least my mum has alittle peaces of mind thinking it is a cyst for now.
How long does CT scan results take if you are in hospital? Do they get read any quicker?
Chelle xx
Hi
Your Mom is in the best place. The proper action can now be taken. Your Moms ducts will be inflammed because of the blockage. The bile isn’t flowing as it should, it is backing up into the liver, hence high bilirubin level. This puts pressure on the ducts in the liver (intrahepatic are ducts in the liver, extrahepatic are out the liver)
Hopefully a CT scan will be done asap, then from that they will be able to have a more clearer picture. You mentioned a cyst, I suspect they will operate and remove the cyst and gallbladder. Once this has been removed then the bile will flow again.
If they do think it’s CC, I think they will put a stent in and this will help the bile to flow.
I’m hoping it’s a cyst but just to be prepared I would start writing down questions you want to ask the Doctor. From experience minds can go blank when the men in white coats appear. With questions at the ready you can get your answers quicker. I’d also start finding names of Doctors with CC experience. If you type it in the CC search engine you will find a list.
Hope it all goes ok.
Thinking of you
Andrea
mamamia:
When my husband Tom went to the doctor in Mar ’08 his:
Alk. Phophsate was 1558, currently it is 958.
Currently his Bilirubin is 9.6 (960) at his all time high for bilirubin was 24.9 (2490)
Those numbers are showing the doctors that something is going on with the liver.Tom had a dilation of a bile duct, they did a scraping and inserted a stent into the bile duct. Cancer was detected from the scraping. He underwent a left lobe liver resection in June 2008 and he is still here fighting!
My advice would be to research all you can on CC. Write down your questions to ask of your mom’s doctors. Get 2nd and 3rd opinoins if possible. Make sure that her doctors have some background on CC or at least have other doctors that they can ‘tap’ into for advice. Tom’s doctors work hand in hand with doctors from St. Lukes in Milwaukee. Mayo Clinic may also be an option in you are in the U.S.
Go with God.
Margaret
Hi all. Well today unfortunately has not been good.
Mum had to be taken in to hospital this after noon. Her doc called to say that the results of blood tests very far to serious, and that she must be admitted ASAP.
I would be very grateful if you could help with results we have from blood tests we got in notes
on 15/11
billburin 106
alt 726
a.phos 809
albium lowand then……
24/11
Albium 40
ALT 721
A.phos 917
billburin 220
sodium 132
creatinine 53This was also noted with urgent surgery opinion, and i read grossintraheptic duct dilation.
It is all doulbe dutch to me,lol.
I am glad mum is in hospital, feel like she is ablee to get a proper rest, and the attention she really needs.
Thanks everyone, looks like be here a while longer.hehe.
Hi Chelle,
If you do get your mums notes today and there are things in them that you don’t understand then ask here and we will help if we can. I’m not saying that we will have the answers, but we will try and help if we can.
Thought you would go for the tattie scone, I guess thats a west coast thing! Sun was shinning here earlier, now it’s snowing again and it’s baltic tonight!!
Best wishes,
Gavin
thanks for your best wishes, and moral support.
Yes indded, a tattie scone is a must, haha.
We should have her notes today, not that i am sure we will understand the medical talk, but heres hoping it will shed a little light on things.
I will ensure that my mum goes into hospital over weekend if things are not improving, not seen her yet today so fingers crossed she looks a little better again. She is my best friend, the only person i truly confide in, a truly fabulous mother.
Keep you updated.
Sun is shining her in Glasgow (although freezing) so heres to a good day to everyone.
chelle, xx
Hi Chelle,
Sorry I read your message wrong regarding scans. But I’m still sure they wouldn’t commit thereslves to saying it was a cyst. When I was researching Dads symptoms and scans, I’m sure tumors give off different rays on ultrasound scans. When my Dad had his u/s they just said they didn’t know and a CT scan was needed,
Hoping for a speedy scan.
Best wishes
Andrea
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