HI! I just found you!!

Jim was DX with liver failure in late August. We've been through weeks and weeks of hospital stays, 2 weeks of skilled nursing facility. and maybe a total of 5 weeks at home.

The DX is now end-stage liver failure. Cirrohsis.

I have so many questions about the issues I've been trying to hack out by myself or with the help of many friends:

Nutrition

Symptoms, and which symptoms are coming from which "failure"

Mental confusion

Financial support

Caregiving support

Medications

Hospice v. Home Health Care

Social interaction

I am excited to have found this forum. I know from being a member of a "cats with diabetes" forum, that there is a huge amount of information to be gathered from those who face a situation on a daily basis.

Our basic story. Jim was an alcoholic, for many many years. He had been feeling lousy for a year or more, and one day in August he turned yellow (jaundice). Immediately into the hospital. 2 weeks there and then transferred to a skilled nursing facility for 2 weeks while I received and healed from a mastectomy (I have, or had, invasive lobular carcinoma and had been going through surgeries and chemo since February). I brought him home from the SNF (although we almost had to sign him out AMA), and he was here 3 weeks before he developed spontaneous bacteria peritonitis and sepsis.

Back to the ER, into ICU, finally down onto the medical floor where he was doing fine before his platelet count dropped dangerously low. Back to ICU, medicine adjustments and continuous platelet and whole blood transfusions. The DRs finally gave up on his, said they would turn him over to hospice, withdrew transfusions and all but supporting medicine, and Jim started getting better.

Back to the medical floor and I had him transferred to a Select Specialty Hospital here in town (Wilmington, DE) where the medical and rehab care was more personalized. During this time, I had radiation therapy for my breast cancer.

Jim came home the day before Thanksgiving. He has Medicare-financed home health care (a nurse, a bath aide who seldom shows up, and physical therapy). We also try to get a private-duty aide overnight 3 or 4 times  a week.

Right now we are struggling with low sodium--an electrolyte imbalance--and blood pressure so low (like 90/60) that causes him to faint or go into "mini-seizures." Mixing this in with some ascites and foot edema.

Jim's GI DR said Jim's not sick enough to qualify for a transplant (only 12 on the MELD scale). He also is 66, which works against him. Jim did not want to go through the vetting process with a transplant team in advance of him getting sicker from the liver disease. I have to respect his wishes, although that is not what I would do.

Jim's GP DR seems fearful of treating this disease at home (Jim is his first liver failure patient since med school) and Jim refuses to return to the hospital (I agree). Jim is not willing to give up home health care for hospice care (where we might get more aggressive medically, like home-based IV medication and a PICC line) because he doesn't want to give up physical therapy.

OK, so this isn't as brief an introduction as it could have been.

But I will be back with specific questions as issues come up for us. I thank you all in advance for your help with Jim.

I'm one of the members who follows threads but has difficulty finding time to post. You have a lot on your plate between Jim's ESLD and your breast cancer. I wish you both the very best.

My husband Gene has ESLD and esophageal cancer that miraculously hasn't spread in almost three years without treatment. His liver was so fragile that we were told Gene would not survive surgery, chemo or radiation. At this time, Gene is receiving palliative care through Hospice. It was a battle initially but finally we have a dream team who understand our unique needs and are providing the support we need. Gene has no need for IV, frequent blood draws, PT or other services usually not provided by Hospice. Our insurance denied home health services saying his needs were not for skilled nursing. Gene is not a candidate for a transplant.

Teresa is a very wise woman and knows what she is talking about. Getting worked up now for the transplant will make it easier when the time approaches. Isn't is amazing how ill our loved ones can be but still are not sick enough for a transplant?

Just as a word of encouragement, Gene had many of the same problems Jim is experiencing now when first diagnosed three and a half years ago. Through trial and error and the grace of God, the issues that were sending him to the ER are now managable at home even though his liver has declined. So you may find JIm becomes more himself before it's time for a transplant. I know Teresa has not had this calm before the storm with Mark. Everyone is different.

Primary Care doctors are easily overwhelmed by the complexity of liver disease. Having a good Hepatologist on the team is essential, some GI doctors are highly skilled at treating Cirrhosis as well.

You will find that you must be a strong advocate for your husband as with encephalopathy, they may not always be able to fight for what they need. Stand up to the doctors, home health or hospice teams if you feel something is lacking or could be done a better day. We live day in and day out with the everchanging medical conditions; others only see a small portion of our loved ones total needs. It is very easy for professionals to lump all liver disease into one catagory and not see how every patient is different from others or from what worked or was an issue even the day before.

Lastly, I want to say you are doing an excellent job. It took me a long time to find out enough to know what was going on with my husband. I listened to the doctors and accepted that nothing could be done to decrease the encephalopathy. Things would have been different had I known then what I know now. Keep up the good fight.

Barb

Hi Venita,

I read through your blogs on you and Jim. You both have been through a lot and you both are survivors.

My husband seems not to respond to the usual medications and procedures and gets good results with trial and error treatment. We have been told by his hepatologist that the only thing keeping him alive is rotating antibiotics and without them Gene would be dead in a week. For over two years Gene is a week on one of his antibiotics and then takes up to a week off before going to the next one on his list. He's taking Cipro, Clindimyacin, Ammoxicylin, Doxicycline as Flagyl, Neomyacin and Rifaximan don't control his encephalopathy well enough anymore. His system needs antibiotics that target the whole body rather than the ones that just work on the dark, damp parts of his body. It's got something to do with the toxins in his blood that his liver cannot get rid of; bacteria add to the toxicity. There is no actual infection beyond the first bladder infection that made his doctors realize that he could not survive major surgery.

For over a year Gene has been seeing an Oriental Medicine Doctor who gives us a new herbal prescription every two weeks that I brew into a murky tea. This doctor has a worldwide reputation and was brought to the US by Stanford University to teach them the art of oriental medicine. As a rule herbs are very dangerous for ESLD but we have been fortunate that what Dr. Yeung prescribes has controlled Gene's encephalopathy by detoxifying his liver.

Gene has not used Lactulosse for many months. His encephalopathy is controled by the herbs and antibiotics and the Grace of God. Occassionally Ammonia levels get too high but it is usually the result of something else off in his body rather than the cause. Several months ago Gene stopped using diuretics as he felt they were too much of a strain on his liver and tended to cause dehydration without controling the ascites. Gene has not needed parasinthesis since his initial diagnosis over three and a half years ago. He has ascites and pedal edema but his weight has remained stable or gone down.

We learned these things through trial and error and touch and go.I'm seeing an overall decline in Gene's liver functioning lately but hang onto the hope that we will have more months together. Next week is our 44 Anniversary and it is a miracle Gene is still here.

Hospice has been helpful in keeping Gene out of the ER or hospital and they are there to hold my hand and offer support in times of crisis or when I'm depressed or fearful.

Forgive me for being long winded. By telling our story I'm hoping you won't feel so alone and perhaps something I've said will work for Jim as well. Bottom line is that everyone does not respond the same way to treatment. Gene's blood pressure had bottomed out at one time. His first hepatologist said Gene's blood pressure could never reach 130 again because of his liver failure. Most days Gene's BP is around 142/75. He is not on medications for Portal Hypertension as they caused his BP to nosedive.

Gene remains on a low sodium, low protein and low glucose diet (since becoming diabetic about six months ago)

Incidentally, dehydration can also increase encephalopathy so it becomes a delicate balance. Gene has been told to listen to his body and what it needs. Sometimes it's hard for me to see him do things I fear are harmful but so far, he's making it far beyond the medical professions predictions. One theory as to why his cancer hasn't spread is that the cancer cells don't like the toxins in his bloodstream. But I give credit where credit is due; I believe in miracles.

Don't hesitate to email me if it is easier to chat that way.

Barb