A Long Haul

Hi folks, I posted here about a year or so ago, and all of you were such a big help getting me through my husbands HE symptoms.

A quick recap: my husband was diagnosed with ESLD, cirrhosis and HE almost three years ago. He also has Hep C, diabetes and a constricted heart valve. It was determined early on that he was not a good candidate for heart valve surgery as his platelets were too low for the surgery, and he was not a good candidate for liver transplant because of the heart problem. A real catch 22.

We've struggled on and off over the past few years with the HE, which was the reason why I ended up here for support. You may recall I wrote that he had an obsession with his guns and knives which scared the crap out of me. Fortunately that seems to have been a phase and he hasn't paid them any attention for quite awhile.

His ESLD seemed to be quite stable for a long time, with no other symptoms than the HE, but I'm so afraid that he is now declining.

The doctor noticed some ascites, and put him on a very low dosage of diuretics. 8 days later he ended up in ER with dehydration, high potassium and low sodium. He could not tolerate the diuretics because of his heart problem. The GI doctor then did an exam and heard some unusual fluid in his chest and sent him to the heart doctor. The heart doctor diagnosed him with congestive heart failure. That was two weeks ago.

Both doctors have recommended him for in home hospice care and we have done the intake visits with them. Although he is still on his HE meds (lactulose, xifaxan and zinc), his symptoms are getting harder and harder to control. The main med to control both the ascites and congestive heart failure is diuretics and he can't take those, so there is not much treatment left for him. I am so sad and afraid now that the time seems short. The Dr said his heart could stop at any time, and he is becoming short of breath more often when walking or doing any activity. I'm a wreck, and I also have to hold down a full time job.

Thank goodness for the hospice and friends that will be checking in on him. Have any of you had experience with ESLD combined with congestive heart failure?

Thanks for listening. I have mostly lurked here the past year. You guys have an immense amount of wisdom and compassion. Bless you, Pam

One step at a time... I worked while Mike was in the last six months of his life... and it was very difficult... hard to leave the worries from home and work and work at work.... and very hard to open the door and wonder if he was still with us... hang in there and take it one step at a time..

Sandia

Thanks for all the support and your experiences.

@mama - the procedure sounds interesting and worth brining up. I, however, have a sinking feeling that my husband's general overall health precludes him from having any invasive procedure. Plus, he has been pretty clear that at this point he doesn't want any life saving procedures, anyway. It's so hard so see someone give up, but on another level I understand when so much is wrong.

@sandia - this is EXACTLY how I feel. I always think about that on my drive home. I never know what to expect. At least my husband is keeping a sense of humor about this. He'll call me at work and say "I've got good news!". Of course I always fall for it and ask "what?". And he'll say "I'm still alive!"

@connie - I'm so sorry about your horrible experiences surrounding guns. Thankfully, I'm not afraid of the guns, themselves, it's just I'm afraid of my husband being around the guns. They are all stashed away at the moment.

Today the hospice nurse visited. I took a day off from work as we had a couple of appointments today. Hospice has been concerned that he was still in possession of his car keys, even though he has not driven in several weeks. She talked to him about all the reasons why he shouldn't drive (because he keeps insisting that he can drive and will always self-determine when he can't). He wasn't happy that he was being told he absolutely should not drive, and when I went to get the key, he practically threw a fit. But, end result is that I have the keys now, and I feel better knowing he won't be making a bad decision and decide to take a drive.

This is quite a roller coaster. There are times when he is up and alert and I think, "oh he's fine, I don't know what all the fuss is about" (I think that's called denial) then there are the other times, when he is coughing his deep gurgling cough, and mumbling answers to non spoken questions while he is drifting off to sleep on the sofa in the middle of the day.

Thanks again for your support, Pam