HealingWell
Search Close Search
☰

Newly diagnosed with stage 4 cirrhosis

Support Forums
>
Lupus
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 7/5/2014 3:51 PM (GMT 0)
I was diagnosed this week with stage 4 cirrhosis. I also have lupus and type 2 diabetes that is controlled with an insulin pump. I have never been a drinker.

This diagnosis of cirrhosis scares me. I have no idea what to expect. I have only slightly elevated liver enzymes and I also has enlarged spleen and platelet count of 40000. Had transjugular liver biopsy and no portal hypertension was noted.

I was started on prednisone and go back in one month to the specialist. Just wondering what to expect. I have been fatigued and for 3 weeks was not able to keep down food. I have lost almost 40 pounds in the last year and was not trying to lose weight. I live an active lifestyle and travel extensively. My diet is not as healthy as it should be but I do not eat sweets and limit the amount of red meat I eat.

Just looking for information on what to expect from this diagnosis and how much it can effect my lifestyle. Any information would be greatly appreciated.
Posted 7/5/2014 10:40 PM (GMT 0)
Cathy - Your not alone here with a CTD and ESLD, me too, and I'll fill you in wrt my deal as well ... soon as I get back home. Welcome!
Posted 7/6/2014 12:47 AM (GMT 0)
Hi Cathy -

I'm dealing with decompensated cirrhosis - ESLD with the whole deal: tense ascites, edema, portal hypertension, enlarged spleen, GI bleeding, kidney just barely hanging on and lots of funny stuff going on in my liver that shows up on MRI's and corresponding biopsies, just to keep my doctors crazy (me too). It's caused by very advanced PSC (primary sclerosing cholangitis) which not only wiped out my bile ducts and liver but managed to trigger a severe case of overlapping MCTD as well, which just makes the whole experience that much better (not).

You'll probable drive your doctors crazy too due to the treatment limitations imposed by your liver disease. Sorry about this. Do they have any suspicions as to what caused your cirrhosis? Would certainly help them in treatment options to know of course. Seems your biopsy should have done this?
Posted 7/6/2014 2:15 PM (GMT 0)
I'm so sorry you are both going through this :(

My liver enzymes were slightly elevated at my last workup but I wasn't told what level. I've had my gallbladder removed over a year ago and still have pain. Do you feel pain in your liver area especially after eating something? How do you know if your spleen is enlarged? I have such a pressure/pain in my left side at times under my ribs. The last week or so it has been troublesome and comes and goes. I hate to barrage you with questions but I'm wondering if I should see my gp about this. I hate having to go to the dr all the time.

Sometimes I'd rather just not eat. It's like it is nothing but trouble!
Posted 7/6/2014 3:35 PM (GMT 0)
acquiesce -

Did you have gallbladder stones or was your gallbladder just inflamed? And, when you say your liver enzymes were elevated, which ones? ... ast/alt/alp along with bilirubin? As far as pain is concerned, yes, I do feel a dull ache/pain in my RUQ (right at the lower ribs area). Now most people with liver issues don't feel pain, but I have PSC and the chronic abuse my bile ducts suffer are reflected in this dull ache. If you're still having bile duct issues yourself, even after the gallbladder's been removed, maybe you still have a small stone or something that they missed during your previous surgery.

Yes, an enlarged spleen can cause pain on the left side as well. Your doctor can feel it by palpating the area - if the spleen is quite large anyway. It can easily be seen with US/CT/MRI imaging too.

Maybe starting a new thread makes sense and I certainly don't mind helping you with your issues. Feel free to ask. I'm also active in the hepatitis forum as well.

Cathy/acquiesce -

The overlapping CTD with liver diseases (especially autoimmune ones) is a tricky problem and I am working with an advanced team at the Cleveland Clinic to try and come up with a plan of action for my case. My local Rheumy is a very good doctor but she doesn't want to even touch me it seems, not until we hear back from my Cleveland Team. I can't say as I blame her either, I'm balanced in a very precarious way right now. Just recently, my remaining kidney is starting to show signs of failing and it looks like the CTD is the culprit. The liver disease (via the hemodynamic circulation changes, PHT) can cause the kidney to fail by itself with something called hepatorenal syndrome. But now we find that the kidney is also being abused by the CTD as well, definitely not cool.
Posted 7/7/2014 3:04 PM (GMT 0)
Cathy -

Some other things I should have mentioned wrt your message but forgot to do. They say you have cirrhosis and have an enlarged spleen with a low platelets count, this is all perfectly consistent with ESLD, but this does also indicate that you do have portal hypertension (PHT) which again is exactly what'd expect with advanced ESLD. I'm a bit puzzled by your comment that "no portal hypertension was noted"?

Issues with glucose control and diabetes can also be expected with ESLD. Not sure if you had the
diabetes issue before hand or if it was caused by your cirrhosis, might be interesting to know. Your liver is a store house of sorts for glucose when your body currently doesn't need it. So when you have disrupted portal blood flow (as indicated by cirrhosis with PHT), this management of glucose control/storage/release is impaired and tends to lead to diabetes.

Lastly, your digestive process will lose it's efficiency with the cirrhosis and it's fibrotic compression that will begin to disrupt your bile flow system. Your liver creates bile and it is excreted into your small intestines. There it helps the digestion of food by breaking up fats and with the absorption process of various nutrients, vitamins, etc.. You need to keep your eye on all of your fat-soluble vitamins (A,D,E,K) because they will become deficient. This part of ESLD is a very big problem for me since I have cirrhosis and my form of disease specialized in destroying my bile system. My vit-D(OH)25 is always very low (around 5-8 usually) even with weekly 50,000 unit Vit-D2 supplements. I simply have to make adjustments to how I eat and what I eat.

When you and I have the extra disadvantage of an overlapping CTD disease, well it means that our doctors are really going to have to work very hard for their money (think there's a song about that ...). Again, I'll be here if you have any questions at all. Good luck to both of us.
Posted 7/7/2014 3:11 PM (GMT 0)
ps ... there is at least one plus for us in this whole nasty deal, at least we don't have to count calories, lol. I know I certainly don't and I tend to lean into higher calories rather than avoiding them, otherwise my weight will drop too. Just a little bonus, but oh-well.
Posted 7/8/2014 11:08 AM (GMT 0)
Thanks Bblbt, I should go see the doc. She didn't say which ones were elevated, just that they slightly were. It didn't sound like it was much of a concern at the time. My gallbladder was full of stones and had one blocking the duct to the pancreas if I'm remembering correctly. The surgeon had to actually clean out my gallbladder before he could remove it. It was also inflamed but that could have been from the blockage.

I can start a new thread later, sorry to hijack! :) and thanks for the help, it may be a stone now that you mention it. I'll check into it.
Posted 7/8/2014 7:29 PM (GMT 0)
Hi Cathy,

I was diagnosed 8 years ago with auto-immune hepatitis, they tell me it's brought on by Lupus - at that time I was stage 4. I have had a few flairs and once I was on the transplant list - Livers are pretty amazing, though and if we can stop what is causing the damage a liver can heal itself - As of my last set of tests my liver is functioning at normal levels - BUT each time I have a flair the damage can happen faster and at some point it might not heal itself.

I'll probably never wean all the way off of Prednisone, I also take Mercaptour (that's probably misspelled) - I avoid all fried and greasy foods (but I also have other stomach issues) - when my liver is acting up I watch my iron intake and up the protein I eat.

While I opted not to go with my husband and kids on their drive cross country and back - I have my doctors' blessings to travel, the only restriction has been on a cruise (they told me to only drink bottled water and no produce while off of the ship)

I work fulltime, own a small business, have a family life - I don't feel awesome but honestly, it's not my liver disease causing the issues

I hope the specialist is able to give you answers and reassure you that you can continue your life
Posted 7/8/2014 9:42 PM (GMT 0)
Hi tenXmom - Seems we have the makings of our own little subgroup here, "the advanced liver disease bonus package" ... the ol' LDBP!, lol. Good to know we are not alone and good luck with your battles!
✚ New Topic ✚ Reply