ESLD and Hypoglycemia?

Go to a hepatologist. Now.

Sunflower,

Ok, so my hubby was like yours, getting sicker and sicker and the local GI said he would refer him to the transplant hospital when "it was time." If Mike had waited until that DOC woke up, Mike would be dead!

Do you have a primary care physician? Can he/she do the referral? Most of these insurance companies want a primary care physician to write the referrals anyway.

Is there any chance your hubby is sick enough for an ER visit? Go around the GI doc and get hubby worked up while IN the hospital and maybe they'll refer him out?

ARE YOU SURE you can't self refer in the Transplant Hospital. One other of our members was "waiting" but when she called the center directly, they gave her an appointment.

Big question: Is your hubby clean and sober at this time and/or has he been clean and sober for a long time? I ask this because some of the local docs know the UNOS rule on transplantation...6 months alcohol free before they'll consider for transplant. Ours wasn't clear about that, he was waiting for Mike to figure it out on his own and he wouldn't refer Mike because Mike was still having his cocktails, beer and wine. Not breaking up bars drunk, but a daily drinker...and that is a no no.

We went to the transplant center on a referral from a hematologist/oncologist when Mikes labs were completely crazy and THEN the HEP doc said...IF YOU CONTINUE TO DRINK YOU WILL DIE WITHIN 3 MONTHS!!!!!!

For Mike his pain turned out to be pancreatitis. He had terrible episodes with it and he was admitted to the hospital a couple of times and when they put him on IV fluids, balanced his electrolytes, gave his GI track a complete rest (nothing by mouth, then fluids, then soft foods) and finally sent him home feeling better. His kidneys weren't working right either and that made him feel awful.

I worry whether all the right meds are being used for ESLD for Hep C...BP meds, diuretics, lactulose (and maybe Xifaxan) for hepatic encephalopathy, etc.

Let us hear from you, we'd like to know more about his general health.

Best, Mama Lama

Post Edited By Moderator (hep93) : 9/14/2012 5:47:35 PM (GMT-6)

Sunflower, it sounds as though your hubby is having gall bladder attacks. The gall bladder is attached to the liver on the rt. side. The pancreas is on the left side. Gall bladder problems are fairly common with ESLD. He could have a stone stuck in a bile duct. There is rarely real pain with hep C. If there is, it is described as a "fullness" or pressure pain. I had a 12 cm x 11.5 cm liver tumor and it didn't cause pain. But everyone is different.

Absolutely find another Primary Care doc for your hubby. As ML suggested, you could also try self-referring to a transplant hospital. I know Mayo allows this, as that's how I got in there. It will be worth the trip to get a thorough workup and plan. Your hubby should also get treatment for his small mass. They would probably do chemoembolization to shrink it. With a MELD of 14, he would not yet be eligible for transplant, but a hospital that does transplants may go ahead and put him through the pre-transplant evaluation.

Hugs,
Connie

After reading all this wonderful feedback I've decided that I will be contacting a local family doctor in our area to have him looks at with a new pair of eyes and ask that they do a complete work up on him to figure out where the pain is coming from to include looking at his gallbladder. I will also ask for them to look into the attacks. He had another bad one today. Unfortunately I absolutely have to help him when he has one as he is unable to move when they happen. They require my attention and he will often just yell help from wherever he is (which is what happened today). I am also going to contact MUSC which is our transplant hospital and get him in. You do not need a referral to be seen. I have begun checking his BP during the attacks so I have documented proof of what's going on. I personally think things are much worse than the specialist indicates. He seems to be lost often, the specialist that is. Don't get me wrong, he has been very good to us I just don't feel that everything is being done that can be. He also admitted on Friday that it was just out of his scope of expertise (pretty much confirming the feelings I've had for several months). He is a liver specialist who we named as our PCP because other doctors freaked out every time we went in due to his low platelet count and wanted to admit him to the hospital. We just got tired of it so when we started seeing the specialist in July 2010 we began going to him for everything because he already knew he had liver disease and Hep C and didn't freak out. Now, I'm regretting that decision and I'm going back to a regular family doctor that will refer us out to someone else. The specialist can handle the things associated with the liver disease along with the transplant hospital but that's it. I'm having everything else looked at by other doctors. I'm at my whits end with this. I know this.... for a long time now I've watched him suffer and get worse by the day and I've always said if only I could take away the pain I'd do it in a heartbeat. There will be several heartbeats prior to Monday but on Monday I'm getting him in for a second opinion and tests. My husband says to me all too often..... if I just didn't have this pain I'd be able to get through this, the pain just makes this unbearable and I don't know if I can wait years for a transplant having this pain. We have 3 kids, two still at home. Getting through this is not an option, it's just something that has to be done. So, I will do all the footwork I need to in order for him to have the best care and results instead of being dismissed as frequently as we have been. Thank you all so much for the words of advice and feedback!

Hi Sunflower, I have ESLD and am an insulin-dependent diabetic. I experienced exactly what you are describing.  It sounds to me that your hubby is extremely dehydrated.   I didn't see where you detailed your hubby's pain - it is a generalized pain all over (muscles hurt)?  That can definately indicate dehydration caused by using lactulose and being on a diruetic.  Get some G2 electrolite water (like Gatorade but much less sugar) and get him to drink it for a day in place of water and see if that makes him feel better.  As far as determining if he is hypoglycemic, it is a simple matter to pick up a glucose meter at your local pharmacy.  Test when he is fasting and test 2 hours after he eats a meal.  Anything lower than 80 will make a person feel very weak, shaky, mental confusion.  Anything over 120 would indicate diabetes.  I also had very similar symptoms of the stomach pain, which was relieved by leaning forward while sitting - it was a mild case of pancreatitis caused by new BP meds my endocrinologist had prescribed.  It took me 2 months to figure this out on my own because the pain would come at the same time every day - which was at the END of my medication cycle when I would be about to take that day's dose (instead of shortly after taking the medication).  After I stopped the new BP med, the pain never returned.  Gastros (specialists) do not make very good PCPs - in fact they would prefer you see a PCP for these kinds of issues.  The most important thing is to get his electrolites back in balance, as low potassium due to the diruetic action caused by lactulose and his diruetic will cause mental confusion and severe muscle aches, terrible cramps and can actually cause a heart attack if not treated.  I hope this helps.

When I work hard and become hypoglycemic, there's an easy fix; eat something. It doesn't hurt to hydrate at the same time. Fresh fruit is ideal, as it works quickly and is good for you.