scared newbie

[Insom1]

Got liver scan tomorrow (well in 8 hours time) waited at hospital 5 hour yesterday to be sent home - yesterday told level was 1222 and should have been between 100-150

cant sleep and cant talk to family ..... im scared

[smc555]

Bring someone with you to the hospital. I had to go through this in June. It was the first time I had ever had to go to the hospital for myself. Even though my skin and eyes were yellow and my liver enzymes were in the 1000s it just wasn't registering with me how serious everything was. Please get the support of a friend, or a family member. It helps to have someone else there with you so you have a second set of ears to listen to what is being said to you and to advocate for you. Try to stay in the moment and don't give in to fear and worry. You can try deep breathing to calm your nerves but you need to ask questions of the hospital staff if you don't understand something, have all procedures explained to you, be as focused and aware as possible. I even kept a notebook to write down questions I thought of later to ask. And I paid close attention to everything that was done to me. This actually helped me not give in to fear or worry. Thankfully, I had the support of family and friends. In fact, they were the ones who got me to go to a doctor in the first place. I've always treated any illness I had with natural herbal medicines and strict nutritional diet so kept thinking I could treat this condition as well. Truthfully, I still think I can but I realized that at that time I had to just let go and put my trust in others because my liver had to be stabilized! You can do it - remember to use deep breaths to calm your mind. That helps a lot. Talk to the hospital staff. Ask questions, stay focused, and try to find an advocate. You can do this!

[Insom1 in reply to smc555]

Thank you - I have zero symptons blood tests were done for something unrelated so this is a major shock atm - I know my results show liver is not going to be great but i feel healthiest i have in years after losing some weight so this feels strange,

My husband is coming with me although he has not grasped yet that this is a serious issue ! We have major family event this weekend and i will not allow what happening with me to be a cloud over the event so nobody else in family know whats happening they think im being scanned for indegestion

Your note book idea is great - my first question will be where is best place to go for treatment then contact medical insurance and hope im covered

[Teri8672 in reply to Insom1]

I too was taken by surprise went for itching them that one dr amazing dr said let’s do lab then biopsy then given bad news but my mother had it her mother had it so it runs in my family. Everyone’s body is different so PBC works differently on everyone. My liver dr said it can be 15-20 yrs before you can get a transplant. I’m happy I have only sons no daughters one son is compatible with me so hopefully he will be my donor. Hang in there I’m now seeing a psychiatrist to help with my depression anxiety

[Chazzy]

Know it's a scary feeling and second feel like hours. Try and stay as calm as you can. Take someone with you and get them to explain everything until u totally understand where you are and what can be done!

[Pussycat432]

Try to stay calm insom1 I know that can be hard to do sometimes just as other ppl have said try and take someone with you, you will be in safe hands they are there to help you. The scan dosent take long at all. Best of luck x

[Freddie41]

Hello, you mention medical insurance, so my advice might be something you do anyway. Can you ask for copy of letters from the scan/consultation. That was something I didn't do when I was first poorly. All the best x

[dckimberly]

Good luck! Deep breaths. Get a little notebook. Start taking notes down now. And write down any questions or concerns you might have for when you see your specialists next.

Being scared is ok. It's normal.

But remember, it may not be bad news. It's the unknown that's the worst part, the not knowing.

Please let us know how you get on!

Thinking of you and cheering you on!

Xxx

Kimberly

[cazer in reply to dckimberly]

Hi kimberley my pain in my liver has changed in the last few months...im now getting stabbing pains and cramping quite frequently...i was getting an ache like someone had drawn a line from front to back but its altered...did you get this change...just makes me wonder if the damage is worsening..any thoughts.ta.x

[ducati0872]

What level was 1222? Liver scan doesn't hurt and i am also relatively new to this site but found the responses i was getting to my question were sincere and non judgemental, this is a great place to ask questions, do you drink heavily ?

[Insom1 in reply to ducati0872]

it was my ALT that was 1222 now 1169 so going in right direction.

my ALP was 122 now 198

Scan shows I have a gallstone so that is cause of inflamed liver having levels checked again in 3 days.

Scan also picked up large adrenal cysts which are fluid filled so not a lot to worry about but being referred

I agree with you this is an amazing site

[ducati0872 in reply to Insom1]

im glad you went for the scan, and also pleased that they have found the problem and that there is nothing to worry about , Good Luck

[cazer]

Dont panic it is frightening...i was at home got back from a supermarket shop to find a midwife on the doorstep as i was pregnant at the time..

To be told pack a bag you need to go to hospital as yoir lfts (liver function) ia way off.one level about 900...so understand how u are feeling.id been feeling pretty ill but just thought i was having a really bad pregnancy.

Just remember you are in the right place and they are doing the rigjt things....were u suddenly poorly or what happened?do they have any idea what sort.of livrr prob it is.?

Tell your family just whats happened you need support at moment.best wishes cazer.x

[cazer]

Other things can cause way off liver function tests e.g. gallstones

Blocked bile ducts. So get the scan and let them find out where your prob is coming from.

I found i had excellant treatment from nhs and was referred straight away to liver clinic at queen elizabeths but i did have some other tests before i went as they thought it might be pregnancy related.

Give the nhs a chance then if needed and you are going to have to wait a long time you can use your private policy.

I understand that u dont want to overshadow the party...so if youve got your hubby for support then do what feels right but try to enjoy it.

As kimberley says its the not knowing.dont google as you u wont know what is wromg and there are so.many variations it will just make matters worse.

Dont expect your hubby to get it...mine doesnt even after 17 years so just accept his help that he can give and stay calm.you will b okay i am sure.xcazer

[Dulux]

Where about are you from, you mention medical insurance so I'm guessing not UK???

There really is nothing to worry about a scan, it is likely though to make you aware you may well have a canula line in your arm to inject a contrast medium which enables them to identify the blood structures in the images, so if you don't like injections/needles be prepared.

Scans do not hurt, I promise, but I wouldn't expect instant results, there may well be a number of people who will look over your scan, you will have to become used to waiting for results etc, unfortunately this goes with the territory.

Go to your family event and enjoy it, I really enjoy going to family events, if people ask I tell them, don't go over board, you will get all sorts of reactions, from don't worry a course of pills will probably sort it through to people telling you horrible stories of people they heard of. My advice is not to make yourself into the victim/patient, you don't need to go round telling everyone, once you have facts you can keep people in the loop. I am stuffed as I look unwell and am jaundice, which basically means I glow at night, only joking, but its obvious to anyone I'm not well, if you are well and feel okay then go for it!

Levels are relatively immaterial as far as I'm concerned its how you feel, I have levels which are massively high, I still get up and go to work, the levels are there for the doctors to determine/help with working out how well the liver is processing/working.

Support is critical, true deep down understanding, picking you up when you are down, settling you down when your angry, without support this will be a tough journey, this should be your number one priority.

I hope you get some information on what it may be soon.

[Hidden]

What reading was 1222? Im guessing its part of the Liver function test. There are several enzymes included in the test, ALT, ALP, AST (not in UK) and and extra GGT. With the range you have given I would say it could be the ALP, but the lower end is less than 100. If you do have an enzyme over 1000 you will need to find out why and if its going to settle down, over 1000 is acute inflammation, your Liver is screaming at that level.

Some people also have Iron storage issues that can cause Liver damage, easily cured by giving blood though.

If you have high enzymes it indicates the Liver is inflamed, it doesn't necessarily mean Cirrhosis or that serious damage has occurred. Liver disease is very broad and its only the later stages that cant be recovered.

[Insom1 in reply to Hidden]

ralph the nurse also described my level of 1222 as my inflamed liver screaming for attention I suppose now its down to 1169 it slowly getting quieter hopefully sunday it may be lower although why it should go down with no treatment im not sure

[Insom1]

I feel rather stupid - although I do blame the A&E doctor and the Ambulatory Care doctor who both said that my raised ALT level of 1222 (should be 10-50 ?) indicated acute liver disease.

My liver appears healthy but I do have a gallstone - my liver results are now ALP 198 and ALT 1169 so on slightly up and on down since i first presented at hospital.

Because its my sons wedding tomorrow and I promised to go back straight away if things worsen Ive been allowed home but must be back at 8.30 Sunday morning for more bloods and to see another doctor

Thank you for all your kind words and thoughts ,,,, does it sound totally daft to say I feel guilty for writing on here and after a simple scan its shown i just have an inflamed liver caused they think from a gallstone

[Hidden in reply to Insom1]

Morning

Yes, a gall stone can cause Liver irritation and if thats the cause, then I would say you've had the best outcome there, some unlucky people do just suddenly develop acute Liver failure for no apparent reason, very rare but it does happen.

ALP is found in the bile ducts, ALT is the whole Liver. So your tests are in line with a blocked bile duct causing the whole Liver to become inflamed.

Dont feel guilty at all, anything that causes the Liver to be 1000+ ALT warrants serious medical attention no matter what the cause. If left your gall stone would have made your Liver fail.

[Hidden]

oh yes they can, if they block the bile dict and scar it

[Hidden]

Sorry, you are incorrect. I have followed a person recently who had thousands of microscopic gall stones block pathways high in the billary tree and it caused Cirrhosis.

Whilst its true that a "normal" large gall stone in common bile duct shouldnt be a problem, its doesnt mean that the person should dismiss it. Caution is wise because a gall stone problem can cause Acute cholangitis, Acute pancreatitis etc and they could have gall bladder disease.

[Hidden]

Yes I do know..............

[grace111 in reply to Hidden]

Overview

In-Depth Report

Background

Prognosis and Complications

Symptoms

Risk Factors

Prevention

Diagnosis

Treatment

Surgery

Open or Laparoscopic Common Bile Duct Exploration (Choledocholithotomy)

Extracorporeal Shock Wave Lithotripsy

Other Procedures

References

News & Features

View & Print In-Depth Report »

Multimedia

Gallbladder Removal

Web Links

National Digestive Diseases Information Clearinghouse

American Gastroenterological Association

American College of Gastroenterology

American Liver Foundation

Related Topics

X-Ray

Acute Cholecystitis

Chronic Cholecystitis

Cholangitis

Choledocholithiasis

Gallbladder Removal - Open

Illustrations

Digestive System

Digestive System

Cholecystolithiasis

Cholecystolithiasis

Gallstones, Cholangiogram

Gallstones, Cholangiogram

Kidney Cyst With Gallstones, CT Scan

Kidney Cyst With Gallstones, CT Scan

Cholelithiasis

Cholelithiasis

Gallbladder

Gallbladder

Gallbladder

Gallbladder

In-Depth From A.D.A.M. Prognosis and Complications

Gallstones that do not cause symptoms rarely lead to problems. Death, even from gallstones with symptoms, is very rare. Serious complications are also rare. If they do occur, complications usually develop from stones in the bile duct, or after surgery.

Gallstones, however, can cause obstruction at any point along the ducts that carry bile. In such cases, symptoms can develop.

In most cases of obstruction, the stones block the cystic duct, which leads from the gallbladder to the common bile duct. This can cause pain (biliary colic), infection and inflammation (acute cholecystitis), or both.

About 10% of patients with symptomatic gallstones also have stones that pass into and obstruct the common bile duct (choledocholithiasis).

INFECTIONS

The most serious complication of acute cholecystitis is infection, which develops in about 20% of cases. It is extremely dangerous and life threatening if it spreads to other parts of the body (a condition called septicemia), and surgery is often required. Symptoms include fever, rapid heartbeat, fast breathing, and confusion. Among the conditions that can lead to septicemia are the following:

Gangrene or Abscesses. If acute cholecystitis is untreated and becomes very severe, inflammation can cause abscesses. Inflammation can also cause necrosis (destruction of tissue in the gallbladder), which leads to gangrene. The highest risk is in men over 50 who have a history of heart disease and high levels of infection.

Perforated Gallbladder. An estimated 10% of acute cholecystitis cases result in a perforated gallbladder, which is a life-threatening condition. In general, this occurs in people who wait too long to seek help, or in people who do not respond to treatment. Perforation of the gallbladder is most common in people with diabetes. The risk for perforation increases with a condition called emphysematous cholecystitis, in which gas forms in the gallbladder. Once the gallbladder has been perforated, pain may temporarily decrease. This is a dangerous and misleading event, however, because peritonitis (widespread abdominal infection) develops afterward.

Empyema. Pus in the gallbladder (empyema) occurs in 2 - 3% of patients with acute cholecystitis. Patients usually experience severe abdominal pain for more than 7 days. The physical exam often fails to reveal the cause. The condition can be life-threatening, particularly if the infection spreads to other parts of the body.

Fistula. In some cases, the inflamed gallbladder adheres to and perforates nearby organs, such as the small intestine. In such cases a fistula (channel) between the organs develops. Sometimes, in these cases, gallstones can actually pass into the small intestine, which can be very serious and requires immediate surgery.

Gallstone Ileus. A gallstone blocking the intestine is known as gallstone ileus. It primarily occurs in patients over age 65, and can sometimes be fatal. Depending on where the stone is located, surgery to remove the stone may be required.

Infection in the Common Bile Duct (Cholangitis). Infection in the common bile duct from obstruction is common and serious. If antibiotics are administered immediately, the infection clears up in 75% of patients. If cholangitis does not improve, the infection may spread and become life-threatening. Either surgery or a procedure known as endoscopic sphincterotomy is required to open and drain the ducts. Those at highest risk for a poor outlook also have one or more of the following conditions:

Kidney failure

Liver abscess

Cirrhosis

Over 50 years old

Pancreatitis. Common bile duct stones are responsible for most cases of pancreatitis (inflammation of the pancreas), a condition that can be life threatening. The pancreatic duct, which carries digestive enzymes, joins the common bile duct right before it enters the intestine. It is therefore not unusual for stones that pass through or lodge in the lower portion of the common bile duct to obstruct the pancreatic duct.

OTHER COMPLICATIONS

Gallbladder Cancer: Gallstones are present in about 80% of people with gallbladder cancer. There is a strong association between gallbladder cancer and cholelithiasis, chronic cholecystitis, and inflammation. Symptoms of gallbladder cancer usually do not appear until the disease has reached an advanced stage and may include weight loss, anemia, recurrent vomiting, and a lump in the abdomen.

Research shows that survival rates for gallbladder cancer are on the rise, although the death rate remains high because many people are diagnosed when the cancer is already at a late stage. When the cancer is caught at an early stage and has not spread beyond the mucosa (inner lining), removing the gallbladder (resection) can cure many people with the disease. If the cancer has spread beyond the gallbladder, other treatments may be required.

This cancer is very rare, even among people with gallstones. Certain conditions in the gallbladder, however, contribute to a higher-than-average risk for this cancer.

Gallbladder Polyps. Polyps (growths) are sometimes detected during diagnostic tests for gallbladder disease. Small gallbladder polyps (up to 10 mm) pose little or no risk, but large ones (greater than 15 mm) pose some risk for cancer, so the gallbladder should be removed. Patients with polyps 10 - 15 mm have a lower risk, but they should still discuss gallbladder removal with their doctor.

Primary Sclerosing Cholangitis. Primary sclerosing cholangitis is a rare disease that causes inflammation and scarring in the bile duct. It is associated with a lifetime risk of 7 - 12% for gallbladder cancer. The cause is unknown, although it tends to strike younger men with ulcerative colitis. Polyps are often detected in this condition and have a very high likelihood of being cancerous.

Anomalous Junction of the Pancreatic and Biliary Ducts. With this rare condition, which is present at birth (congenital), the junction of the common bile duct and main pancreatic duct is located outside the wall of the small intestine and forms a long channel between the two ducts. This problem poses a very high risk of cancer in the biliary tract.

Porcelain Gallbladders. Gallbladders are referred to as porcelain when their walls have become so calcified (covered in calcium deposits) that they look like porcelain on an x-ray. Porcelain gallbladders have been associated with a very high risk of cancer, although recent evidence suggests that the risk is lower than was previously thought. This condition may develop from a chronic inflammatory reaction that may actually be responsible for the cancer risk. The cancer risk appears to depend on the presence of specific factors, such as partial calcification involving the inner lining of the gallbladder.

just in case anyone has gallstones and is afraid its highly unlikely to cause death or cirrhosis

[Hidden in reply to grace111]

Like I said I already know.

Its uninformed people like you that are dangerous, a blocked bile duct with an ALT of 1000+ is NOT a normal situation and needs attention

You can wiki all you want

ncbi.nlm.nih.gov/pmc/articl...

[grace111 in reply to Hidden]

that does not mean it a gall stone it could be many other things doctor. i can see you ending up in the pub tonight.

[Insom1 in reply to grace111]

i might but your information i do not drink - never have not a moral thing just a life choice

[grace111 in reply to Insom1]

i wasnt speaking to you dear.

[grace111]

none of us are doctors. and i find your response unkind and unhelpful. but pride comes before a fall.

[romana1 in reply to grace111]

don't listen to nasty people just ignore them. they are not worth it.

[smc555]

Hi, Insom1, I just checked the follow-up posts concerning your initial question. It seems like some of them became a little heated although the basic message was the same. That you should not feel bad or guilty for posting or being worried in the first place. I hope everything went well at your son's wedding and you are doing fine. I knew so little about the inner workings of our bodies. I have become an avid researcher since my own diagnosis of AIH and I feel that everyone on this forum wants to be as helpful as possible. Wishing you the best...😃

[Juamcc]

I would be too. Control your mind and live in the moment. You can't change anything about tomorrow but you can change something right now. Stress can hurt you. I hope everything turns out well