Going in for biopsy results

[Sevetts]

Hi, My name is Shelley.  I was referred to this group by a friend.  Hi PD :)  Anyways, I've been newly diagnosed with cirrhosis, last month.  I've had a colonoscopy, endoscopy and the liver  biopsy done and I am going in for the results on Thursday.    I was wondering if you all had any suggestions on questions I should ask.  Here's what I know so far.  I definitely have cirrhosis, I was told I would definitely need a transplant within the next 5 years, I have trace amounts of ascites, well a month ago I did, I think it's more than a trace now, I know from the colonoscopy/endoscopy that I have gastritis and a hiatal hernia and colitis and that they removed 12 polyps which they are biopsying.. they are also doing a biopsy on the gastritis.  (I've had precancerous polyps before but only 2).  I have a long list of other illnesses.  And right now am fighting a viral and bacterial infection as well as oral thrush.  I'd really like to be prepared with the proper questions when I go in there on Thursday and come out knowing everything that I need to and can know.  Oh, my memory which is horrible now anyways, has gotten much worse and I lose my words a lot and now my spelling which use to be excellent.  Ok... I'll leave it at that before I start rambling.  Thank you for any and all info you have :)

Shelley

[pugdaddy]

Shelley, you're being given (IMHO) excellent advice.  I too have MELD of 7 - and I DO have occasional minor symptoms of HE, so the two are not mutually exclusive.  Aside from a sllghtly elevated INR of 1.1, my liver functions are normal.  Indeed if my INR was the totally normal 1.0 then I would have (a correspondingly normal) MELD of 6;  that modest elevation in INR is what 'bumps' me up to a 7.

BTW a clinical trial commenced a month ago;  a new antifibrotic being tested on humans with NASH: It has reversed fibrosis and cirrhosis in animal models.  Check this link:

http://www.galectintherapeutics.com/technology/fibrosis.php

[Sevetts]

I have a list of things I am going to talk to the Dr about tomorrow and the UW is on the top of the list and my meds are on the list too.  I do have a good group of Drs right now and they are very good about talking to each other and sharing information and treatment plans.  I think I am very lucky in that area. I have friends and family members that think I should change my Primary care Dr.  and I do have some issues with her right now and I've actually thought about changing at times.. but I like her and I've been seeing her for about ten years now.  I know when I talk to her tomorrow the issues I have will be cleared up.  I've been seeing so many Dr's for about twenty years now so Doctors just don't intimidate me like they use to.  I have no problem speaking to them about problems I have with them.  Not disrespectfully of course.  But that sounds like very good advice, waiting to make any major changes until speaking with a Hepatologist. Thank you for all of the info.  I appreciate it. :)  I know my meld score is amazing.  I was shocked, pleasantly of course.  I just need to do what I can to keep it low.  

[Advocate1955]

Hi Shelley,
I see that the link I posted above didn't acutally come through as an active link.  You can cut and paste it into your browser, or here is the contact information for the Liver Care Clinic at UWMC:

Contact Information and Hours:

General Contact (Phone): 206.598.4973
General Contact (Fax): 206.598.4287
Hours: Monday, 8:00 a.m. to 5:00 p.m.
Tuesday, 8:00 a.m. to 5:00 p.m.
Wednesday, 8:00 a.m. to 5:00 p.m.
Thursday, 8:00 a.m. to 5:00 p.m.
Friday, 8:00 a.m. to 5:00 p.m.
Address: University of Washington Medical Center
Box 356166
1959 N.E. Pacific St.
Seattle, WA 98195
Parking Information: Patients and visitors may park at either the Triangle Garage or the Surgery Pavilion Garage. There is also Valet Parking.  

Some meds filter primarily through the liver and some do not, so I wouldn't advise going off of any prescriptions right now, unless you and your doctor decide you don't need them any more.  I would wait until you get in to see a hepatologist at UWMC so he/she can go over the list and work with your primary care doctor to decide.

If the doctor you saw thinks you have Hepatic Encephalopathy, then go ahead and fill the lactulose, but a MELD score of 7 is very low.  Below 6 is considered to be normal, so if the MELD is accurate, I would wait to see a hepatologist before worrying about these things.

Hepatic Encephalopathy and Ascites usually do not present until someone's liver is severely damaged, which I think means that their MELD score is usually higher.  But I am not a doctor, so I don't want to say one way or the other.  Again, a hepatologist is really the only doctor qualified to determine the health of your liver.  

There are different stages of Hepatic Encephalopathy too, just like with liver disease.  Covert HE may not really have very many symptoms that would be noticeable to others.  That gradually progresses to more overt HE, which has signs and symptoms that may be more noticeable to others.  The hepatologist will know whether or not you have HE and whether or not you should take lactulose.

You asked about the three major signs of liver decompensation.  They are ascites, hepatic encephalopathy, and varices.  When the liver becomes severely damaged, the flow of blood into the liver may be obstructed and the pressure may build in the portal vein, which can cause varices to rupture in the esophagus or in the intestines or other places within the digestive system.  It sounds like your recent colonoscopy and endoscopy did not show any problems along those lines.  We don't know for sure if your memory and word finding problems are due to HE, so that's good.  And at the last check you only had trace amounts of ascites, so that's good too.

If I were you, I would just wait and get the appointment with the hepatologist so he/she can assess you and let you know more about the health of your liver, diet and nutrition, restrictions, medications, etc.  I wouldn't recommend any big changes until then.

Advocate1955

[Sevetts]

Thanks mzkity.  I think maybe I will send my husband to get it, then at least I'll have it here if I decide to take it.  I'll talk to my Primary Care Dr tomorrow and see what she says as well.  About the meds list I have, A few different Dr's have prescribed them.  My PC, Cardiologist, Pulmonologist, Oncologist and my Kidney Dr.  I make sure I take the list where ever I go.  As a matter of fact, I keep an extra copy in my purse at all times just in case I forget or in case of emergencies.  It also has a list of all my Dr's and their numbers and all of my health issues and what I'm allergic to.  I was bored one day a few years ago and I could never remember everything I was on and tired of bringing a bag full of meds to my appointments, so I made this "list".  It's been extremely helpful.  The Dr's love it.  Makes it easier on them too.  I'm a little OCD about organization.  And yes, it's exhausting.  And I am definitely going to ask for a referral to the U.W. liver center.  At this point whenever I tell or ask my Dr's for something they normally comply.  I've been dealing with this stuff for a very long time and they know that I know what my body needs and they know I hate going to Drs, so if I ask to go, they are more than willing to accomodate me for any referral, procedure or PT, it's taken years, but we are finally at that point.  Thanks for the well wishes and the welcome.  I wish you all the best as well.  :)

Shelley

[mzkity]

Hi!! I know Advocate will come along and catch up to your post. In the mean time, I'm not as educated as many of the "senior members" on here are. But in reading your post I agree with Advocate, please see a hepatologist. I myself would get the lactulose script filled. Yes I know nobody wants to poop all day long!!
Your med list should be given to the hepatologist. I'm not sure which docs gave them to you but they should probably be gone over by a hepa. I'm sorry you have to go through this. It's tiring isn't it? Wishing you the best of luck out there!! Welcome aboard! :)

[Sevetts]

Hi Advocate.  Actually the Dr didn't say anything about my long list of meds, which I gave him a copy of.  I have them all written down.  I made a spread sheet years ago...with the med name  the mg the dose the dr that prescribed it and what its for and how often I take it.  He said he didn't want to make any changes.  As for diet, he recommended that I lose a bit of weight and exercise and go on high fiber, low fat, low sodium, high protein diet.  I do have an appointment with my GP tomorrow to get the results of an mri I just had on my back...something new is going on there as well.  But, I will ask her for a recommendation to the UW.  She will give me one.  And you're right, my whole attitude towards this, and I've even said to people, "Just one more thing and one more doctor to add to the list".  I already get fluid build up because of my heart so I am on 80 - 120mg of furosemide a day.  But I now know that the reason my upper abdomen swells is from fluid build up as well.  I didn't know that before.  I'm also going to ask her to check my ammonia levels so that I can start keeping track of that as well.  My meld score is 7.  Oh yeah, I'm also going to have her go over my med list and see what she can take me off of.  I've asked her to remove some meds before and she wouldn't, maybe now she will.  I know that some of them are building up in my liver because my meds are effecting me differently now and I told her that a couple of months ago.  She didn't seem concerned.  But hmm, now I don't know if it is the med build up or HE because I was having what I call "episodes" where I'd just all of the sudden get confused for a few minutes.  Here is just an example.. this is what really brought it to my attention that something was not right with my head...   A friend came to visit and we were talking, then all of the sudden I felt like I was an alien or something...(not really an alien) like I wasn't me, I don't know what happened but in the middle of our conversation she stopped talking to me and turned away from me and started talking to my daughter in law.  I stepped outside to clear my head.  I have no idea what I was saying but it was obviously "strange" enough for my life long friend to turn away from me.  I told the Dr. about that and told her that I'd been having more frequent episodes where I'd lose my words, or just feel not quite right in the head.  I don't know if that is being caused by HE or some of my meds building up.  So before I get the prescription for the lactulose filled, I am going to have her check my ammonia levels and go over my med list.  I am on quite a few meds...like I said, I made a spread sheet and I have so many that it takes 1 and 2/3rds pages with the meds I take regularly and the as needed meds.  It's ridiculous.  Anyways, thanks for all of the info.  I will definitely ask her to hook me up with the UW.  I love that you are right in the area. :)  What are the 3 major signs of decompensation?  I'm assuming that ascites and HE are two of them.

[Advocate1955]

Hi Shelley,
I'm sorry that you're having to add one more diagnosis to your list of complex health issues.  I don't know as much about Cirrhosis from NASH as I do about Cirrhosis due to Hep C, but it's unfortunate that your GP didn't figure it out sooner (before Cirrhosis developed).  On the other hand, there isn't really a way to "treat" NASH, as in there isn't really a way to eliminate the problem that is causing the Cirrhosis, so maybe even if the GP had discovered the problem sooner it wouldn't have changed the outcome.  In general, Cirrhosis usually develops over years and decades.  If whatever is causing the scarring to the liver can be eliminated, then the progression of the scarring can be stopped and Cirrhosis can be prevented, but in your case I'm not sure that it could have been prevented.  So, moving forward, I assume that your doctor told you some things that will help your Cirrhotic liver?  For example, try to get to and maintain an optimal weight, as fat in the liver places an extra burden on it.  Try to eat a healthy diet with lots of fresh fruit and vegetables (organic if possible).  Don't drink any alcohol.  Avoid red meat and iron rich foods as iron is hard on the liver.  Don't take any unnecessary medications, as many medications are filtered through the liver and with Cirrhotics, the liver is not functioning as well, so the toxins are not filtered as well, and can further harm the liver.  You may need to limit your sodium intake.  Actually, I would disagree with your doctor and recommend that you see a hepatologist so that he/she can review your medication list and give you some dietary recommendations as well as put you on a schedule for screening for liver cancer.  I think that with your complex set of health problems and your new diagnosis of Cirrhosis, it is important to see a hepatologist.  He/she would probably want to see you about every 6 months to review your liver function and do an ultrasound or a CT scan of your liver.  If you were to develop symptoms of liver failure, a hepatologist would be more likely to pick up on it quicker, which can help in terms of managing the symptoms.  If you were to develop liver cancer, a hepatologist would be more likely to pick up on it quicker, again making the chances of a successful treatment more likely.  Maybe some other forum members will reply as well and give their opinion, so wait and see what other people reply, but I am going to recommend that you call the Liver Care Clinic at the University of Washington Medical Center and make an appointment with a hepatologist there.  
Here is the link to their webpage:
http://www.uwmedicine.org/Patient-Care/Our-Services/Find-a-Clinic/Pages/Clinic.aspx?clinicId=159
As far as how you feel, I don't think there's any right or wrong way to feel.  Obviously you have many complex health issues, so that would be very overwhelming in and of itself, so adding Cirrhosis to the list may feel either a little "numbing" or perhaps "oh well, one more thing to add to the list".  The thing is, right now your liver is probably somewhat "compensated", which means that it's still functioning somewhat well, so you probably have very few or only mild physical symptoms caused by your Cirrhosis.  As you mentioned though, you have mild ascites, and possibly "covert" (mild) Hepatic Encephalopathy.  Ascites is caused by the build up of fluid in your body due to the liver beginning to not function properly, and it can lead to severe edema and fluid build up on the abdomen that causes difficulty with mobility, breathing, etc.  Hepatic Encephalopathy (HE) is caused by the build up of toxins in the system due to the liver not performing all of it's functions properly.  As the toxins build up, ammonia builds up in the brain, causing certain cognitive problems, such as fatigue, sleepiness, confusion, memory problems, difficulty communicating, organizational problems, etc.  These two symptoms (ascites and HE) cause me to feel that your liver may be beginning to "decompensate" (not work well).  The third major symptom of liver decompensation is bleeding varices caused by the build up of pressure in the large portal vein of the liver.  As the pressure builds, people have varices that rupture in the esophagus or in the stomach/intestinal tract which results in bleeding.  These bleeds can be life threatening and sudden.  It doesn't sound like you currently have portal hypertension or varices, which is very good.  Your ascites may be better managed by a hepatologist through both diet and medications.  Your HE may be better managed by a hepatologist as well by taking medication which will cause more frequent bowel movements as well as by eating the proper liver friendly diet and by eating small, frequent meals rather than 2 or 3 large meals a day.  A hepatologist can also help prevent portal hypertension and resulting variceal bleeds.  Again, since you know you have Cirrhosis, and you know it is likely to progress, since we can't eliminate the source of the Cirrhosis, and since you know you have the beginning symptoms of 2 of the 3 major signs of decompensation, if it were me, I would make an appointment to consult with a hepatologist and try to get him/her to manage your liver care.  You're close to the Liver Care Clinic, so that's helpful.  Also, since you will likely need a transplant in the future, getting established with the Liver Care Clinic now will make it so much easier to be assessed and approved to be on a waiting list for a transplant in the future.  They will already know you, they will know that you are complying with their liver care recommendations, they will have all of your records, and they will know exactly when to get you started on the path toward assessment for a transplant.  What did you calculate your MELD score to be?
Advocate1955

[Sevetts]

Sorry it's taken me so long to post about the results.  The results of the liver biopsy confirmed the cirrhosis.  The cause is NASH, I have the exact thing that the dr said, but it's in my file in the other room.. anyways, it amounts to nash.  Thanks to pugdaddy, I was able to figure out my meld score and it is very low.  The Dr said I am no where near a transplant yet.  As for the polyps he said he actually took over 14 out and  that there are a lot more but he didn't want to do anymore right then.  They are precancerous.  He said I will have to have that done every year as well as the endoscopy.  Also said that I am very, very high risk for colon cancer and high risk for liver cancer.  But that he will have my gp add specific blood work to my normal blood work (I get blood work done often) to keep an eye out for that and other things.  We talked about the gerds which is bad and other little things.  He said I don't need to see a hepatologist right now that he will just treat symptoms as they pop up.  Other than that he doesn't need to see me for a year.  I felt very good after the appointment because he didn't really say anything I didn't already know.  But now that time has passed, I don't know.  I'm not sure what I'm suppose to feel, but what I feel is nothing.  I know I have cirrhosis but like it's not a serious thing.  I tend to do that will all of my "diseases".  I don't look different, I don't feel different.  Yeah, I hurt etc. etc.  But I have for years.  I don't feel any different than before they saw this on the ultra sound then through everything else and finally the biopsy.  And if he doesn't want to see me for a year.. then it must not be serious.  That's how my mind works.  Same with my lung dr.  I never ever see her unless I run into bad trouble, then I call her and make an appointment.  My GP doesn't seem to take anything I say serious or she would have caught this 2 years ago when I told her about the pain.  Hmm, maybe had she listened then it would have just been liver disease and not into cirrhosis.  Who knows.  Not real happy with her right now for a number of reasons.  Anyways, I'm not real sure what I'm suppose to do or how I'm suppose to feel.  The only instructions I received were, high fiber diet and exercise.  Oh yeah, when I told him about the confusion he wrote me a prescription for lactoluse....which I didn't fill because I've not had a test for how high my ammonia levels are.  If I don't have to take it, I do not want to add it to my long list of meds I already have.  So, do I just go on like I don't have this?  A lot of the "symptoms/complications" I already have either because of my liver or another illness I have who knows anymore.. and I just live with them.  He's a very nice Dr, takes the time he needs with you, not rushed etc etc.  But now that time has passed I feel like I've had all these tests and procedures, got the diagnosis and just kinda tossed out on the curb.  Has anyone gone through this "stage of emotion or lack of emotion" about this?

[PaulaAnn]

Shelly....

How did your appt go?  Let us know..  its always hard to go to that appt...but knowledge is power.      

Thinking of you and sending hugs..Paula

[Advocate1955]

Hi Shelley,
What were the results of your appointment on Thursday?
Advocate1955

[pugdaddy]

Shelley,

For a MELD score you need these three numbers from your doctor and/or from your medical records;
(1) Creatine level.
(2) Bilirubin level.
(3) INR (a measure of your blood clotting).

With those three numbers in hand your MELD score can be calculated here:  
http://www.mayoclinic.org/meld/mayomodel6.html

Take care,
PD

[Sevetts]

Thank you Dee I didn't think anyone was going to respond.  Now a days I do take a note pad with me so I can write everything down because I know I will forget whatever the dr's say before I even walk out of the door.  I also go in with a list of questions because I forget to ask everything.  Or that I even had anything to ask.    I am drinking water like there's no tomorrow.  My mouth is so dry.  Seriously right after I swallow my mouth feels like a desert again.  I has to be the meds.  Although they haven't done this before and I haven't had a change in meds.  But they have started acting differently awhile ago.  I also have to try to remember to make a chart that I can check off as to if I've taken my meds or not because I forget...so sometimes I might night even be taking them because I don't remember if I have or not, so for fear of doubling them up I just wont take them.  But I keep forgetting to make the chart lol.  I should probably write that down to tell the dr. Do you know if he will be able to give me my meld score on Thursday?  Thanks again for replying to me.  I appreciate it bunches.

Shelley

[Dee1956]

Welcome Shelly, I am sure some knowledgeable people will be along soon.  I just wanted to say hello.  Welcome!
Try to take some notes when you go so you can have everything the doctor says written down, even better is to take someone with you who can listen and take notes.  It is very difficult to remember everything at a doctor visit.
I would tell the doctor about how you are losing words.  
You may need to have your ammonia level checked  High levels of ammonia can be handled with a RX lactulose, it is a sweet syrup that helps to remove toxins that your body can't.  there is also an antibiotic Rimpafin (sp) something like that that can help.
I take it and it really helps me quite a bit with memory, remember words, etc.
For the thrush you might want to eat yogurt or buy some probiotics to help.
I am sorry you are sick, it really makes it harder to think

Try to cut down on salt as much as you can.  Try not to eat red meat, that is hard on the liver and can add to the elevated ammonia.

Try to drink as much water as you can to help your liver flush toxins out
Best wishes, I am sure others will be along soon
Dee