Post Edited (Jim's wife) : 12/13/2006 7:42:58 AM (GMT-7)
Hello Venita and welcome to HW, It sounds like your plate is quite full, dealing with 2 major illness's. I am my husbands care giver, he has cirrhosis and HepC. He is on the waiting list for a Liver Transplant. I can understand why your PCP is very nervous about treating your husband. It would be best to find a gastroenterologist with experience treating Liver patients or to find a hepatologist. Not all gastroenterologist are experienced, in this area. It makes all the difference in the world. You can be listed for a transplant with a MELD score of 12, he would just not be transplanted with that score. They update the scores every 3 months and as they worsen the score goes up. Nutrition is a big issue with ESLD patients, what is normally recommended is a low sodium diet, some doctors prefer low protein diets also, some do not. It depends on the patient and their own personal needs. My husband is on a low sodium diet, but his doctor wants him to consume high proteins because of his very low albumin, low total proteins, and low platelets. But you need to follow what the doctors tell you to do. The doctors do want the sodium to be a little low, it helps keep the ascites down. They also want the b/p and pulse to run a little low also, most ESLD patient have portal hypertension, which causes varices and ascites. They usually give them propanolol or nadolol to lower the pulse and b/p. They give them lasix and aldactone to help control the ascites. Careful monitoring of the labs need to be done, as these drugs can cause electrolyte imbalance. Lactulose is given for the high ammonia levels that cause confusion, it is not a drug that is just for laxative purposes. They also will in some cases give antibiotics for confusion along with the lactulose. Lactulose can be a life saving drug! I know, my husband has been in comas, stupor, and just plain confused to the point he does not know who anyone is including himself. about the only financial support we get is SSD and my private insurance. You just need to call DHS and see what you qualify for. We have no support groups where I live for care givers, so I get my support from the internet. It is good that he qualifies for Home Health, we don't. Hospice is for comfort care, if you want aggressive at home care, I would stick with Home Health. With a good hepatologist your husband can be stablized to a certain degree, with proper treatment.
Sorry you are going through this and I wish you a rapid recovery from the chemo and mastectomy. You have really been through so much!!! Hugs and Prayers to you!!!
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.