frustrated

In my last post I discussed needing testing but unable to get it due to insurance issues. We now have insurance because I took it to our politicians but I feel our GI isn't responsive.

My husband was diagnosed with Hep C over 13yrs ago and just over the last 3yrs he has gotten progressively worse. His liver has 95% cirrhosis, his spleen is enlarged, he has a genetic problem with his heart, and just over the last two weeks his energy has depleted quite a bit.

In Nov. 2011 he began experiencing a lot of pain in the upper left abdomen area. The doctor said he needed cancer tests but it was probably just an ulcer, so the put him on heartburn meds. In February he was hospitalized for his heart and they wrote it off as a genetic defect that causes palpitations. At that time the hospital said they would write off the bill so I went ahead and asked for the cancer tests. They ran blood work in the hospital and scheduled an ultrasound for two weeks later. Four weeks later we found out he had a tumor on his liver but after running another set of blood work they decided it was not cancer and just a nodule. Since then he has been experiencing a lot of pain where his spleen is. We went in for another ultrasound last week and his spleen is enlarged so much that it's pushing on his diaphram. He also had an endoscopie a couple of weeks ago that showed there was no ulcer and that the veins in his esophagus were enlarged but not bleeding. He is currently on xifaxan, nexium, and furosemide. I don't really understand why he is taking the nexium if he doesn't have an ulcer. The doc seems to think it will help with the sharp pains he is feeling in his upper left abdomen which I believe to be his spleen. We went in for our appointment today and the doctor couldn't see him even though we had an appointment. In addition he doesn't feel anything needs to be done for another six months when we should schedule another ultrasound. Everything I have looked up online says doctors remove the non cancer tumors from the liver just in case but for some reason my doctor doesn't feel it's needed? He also does not seem to be concerned about the increasing pain he is experiencing in his abdomen. He has gone from working 8-10hrs a day to about 4hrs a day max. He sleeps and rests the remaining part of the day. He stays in considerable pain. He is getting discouraged and honestly depressed. I'm having a hard time watching this as I want to fight! Is this normal?????? His MELD is 14 and the doctor says at 15 we should start worrying. Weird because I see from other posts that people go all the way to 37 before a transplant. Should I be worrying?????

Hi, Sunflower. I am sorry that your husband doesn't seem to be getting appropriate care. As for Nexium, it's mostly given for GERD and sometimes just for heartburn.

I suggest you get another doctor, specifically a hepatologist (liver specialist.) An MRI with Gadolinium or a liver biopsy would show exactly what condition his liver is in. I do think the pain he's experiencing is from the enlarged pancreas. Has he asked for a pain med? While his current MELD score is probably not enough to be evaluated for transplant, if he is found to have hepatocellular carcinoma (HCC), his score would be raised to 22.

Sleeping and being fatigued is very common with liver disease, especially hep C.

Hugs,
Connie

Nexium, which is a brand name for omeprazole is used for hiatal hernias, which could be causing some of the pain in his upper abdomen. I take it because some meds are tough on your stomach and it helps prevent damaging it.

The most recent letter we received from the doctor in regards to his ultrasound said... "Impression - stable 15mm hypoechoic lesion left lobe liver. Splenomegaly with mesenteric varices. We will repeat the ultrasound in 6months. Nothing to worry about." All these terms are a little confusing to me but when I looked up "hypoechoic lesion liver" it says the tumors are often removed, particularly if they're causing discomfort, to prevent the danger they might turn cancerous" They are causing discomfort which is why I have concern about just waiting. I'm probably just being overly sensitive.

Hi Sunflower,

Your hubby has it all! All the liver symptoms the patients report as the liver slowly fails and translant become the only option.

My partner was sick a long long time before he got into a transplant program, but we are so glad we had him evaluated there and had THEM track his emerging needs. We were sort of poo poo’d at the local GI doc thought they professed to have a large Hep C practice.

Also, this forum really really helped, because I came to understand that what was happening to Mike’s body in response to liver disease was pretty much what happened to all of them...to varying degrees.
Mike had pain often, which was not the liver, but the pancreas in his case. (Others have gall stones that cause their pain. There are several reasons for pain.) He would have these flare ups and they’d hospitalize him, put him on IV fluids and some morphine, nothing by mouth for 4 or 5 days, and he’d be good to go for a while…no pain meds when he got home.

I think if he were evaluated at a major medical center with a Hepatology department they might help out with the combinatin of problems and give him some guidelines about the path to transplantation. Mike’s MELD was in the 20s when he first went down to Miami, but he was not alcohol free for 6 months. When he got on al lthe right meds…the lasix, lactulose, xifaxan, etc etc, his MELD dropped to 16 for a while. Then it crept back up again over months. The found a tumor int eh liver in Feb 2011, saw it growing in a follow up MRI in April, just two months later, and he got the transplant at MELD 22 on May 1, 2011.

Mike had the really bad leg cramps and tried everything. Especially at night. A triangle wedge pillow we got at one of the big box bedding stores (generally used to elevate the head) was a big help for the leg edema and the cramping. We borrowed a walker for that time in the night, as he fell a couple of times trying to ease up on the cramps. They were AWFUL.

The hardest part for me was to keep saying to a completely depressed Mike…hang in there honey, they said it would be any day. He was ready to give up and talked about not being able to take it any more.
The night he was prepped for transplant he told his nurse that he was “ready” either way. He could not go on. If the transplant didn’t work, he knew he had given it all he could, and he was ready to die. Kinda sad. But it worked out okay in his case.

I just feel in your case, that the situation is serious and should be tracked at a Major med center in the Pre Liver Transplant department by a Hepatologist.

Have you done your estate planning stuff with house, car, DNR, will, kids if appropriate? Don’t have it get to the end before you take about possible bad outcomes. You should take care of stuff now.

Let us know how you are both doing. Remember we have a Caregiver's thread if you want to blow off some steam too. The partners have feelings too.

Carol

I am unable to locate the caretaker forum. Is it the one that says #10?

Sunflower, I agree with ML/Carol that your hubby should be seen at a transplant center. As for "upsetting" the current doc, any M.D. worth his salt will not be "upset" by a patient seeking a second opinion. In fact, they often suggest it. When I was first diagnosed with a huge HCC that had metastasized to a major vessel, the doctors I was seeing at Shands (GI docs) basically said, "Sorry, there's nothing we can do." I could've accepted that death sentence, but instead I made an appt. at Mayo, which has a transplant center. They saved my life. So yes, I absolutely support your getting him to a transplant center. They will do a complete workup with all kinds of tests and scans, to find exactly how his liver and pancreas are doing, and decide what should be done about the liver lesion. They will definitely keep an eye on it and get an early diagnosis and treatment plan so that it doesn't get out of hand.

Your doctor's thinking could well be that he's waiting to see if the lesion turns cancerous. However, docs also don't want to open a patient up who has ESLD unless it's absolutely necessary.

You need to continue being an advocate for your husband. If you have questions regarding how he is being treated (or not treated), by all means seek another opinion.

The very best to you both. Please keep us updated.

Hugs,
Connie