I'm not sure where to start other than to say, thank you Donna Jean for finding this site. I don't know how we got along without it.
My dear husband Gene has had cirrhosis for almost three years. It was very severe when first diagnosed and it has been a battle to get him to the stable state he is in currently. If his Docs had their way, he would have died several times over.
Exactly two years ago, Gene was also diagnosed with esophageal cancer which was discovered on an endoscopy looking for varicies. This was devistating news. Gene was okayed for surgery but fell into a coma following his preop physical due to a mild bladder infection. Following this, we were told surgery, radiation or chemotherapy were no longer options. Within a few months, Gene was placed on home hospice care. Somehow, a miracle happened. Gene's hemoglobin returned to normal and his liver function tests improved greatly after fighting, and I mean fighting to get Gene on continuous rotating antibiotics to control the toxins. Lactulose was only minimally effective at best and after a week off antibiotics Gene would develop hepatic encephalopathy quickly. Hospice tried to withold the antibiotics on the basis that it was unethical to prescribe them when there was no infection and the Medical Director said he would let Gene die before he would write a script. But there is justice, the infectious disease doctor and oncologist required the Hospice doctor to write out the prescriptions for rotating antibiotics.
Gene was in Hospice for seven months but was deemed inelligible when the cancer didn't spread and his liver function improved.
That was a little over a year ago. Gene is still doing okay. Sometimes he is better than other times but the antibiotics keep him clear headed and fairly well coordinated.
We try to live day by day knowing the Cancer could spread at any time. Nobody can explain why such an aggressive form of cancer has not killed Gene in two years.
I seem to be the one having the most difficulty coping recently. I've experienced anxiety, depression and overload being the one who has to watch for subtle changes in Gene's status, struggling with the medical system or lack thereof, dealing with Gene's resistance to my help, worrying about tomorrow and working as a speech pathologist with severely developmentally disabled adults.
For almost three years I've felt so alone. Knowing there is a community of support and information will ease my burden and help me replenish my source of emotional energy.
Forgive me for being so long winded. I don't know how to edit my introduction.
I'm looking forward to hearing from others and sharing what I know. I know life will be much more bearable now.
Hi Barb. Wow you have a lot to deal with.I have severe advanced cirrhosis. I know the antibiotic you are talking about. In my case they won't give it to me cause they said they will only use it if I go into another comma or if my ascetis becomes infected because if my system builds up an immunity to it then they will have nothing for when I am in crisis with the for mentioned conditions.My heart truly goes out to you. This is so much for you to cope with. I've been in comma 4 times after which I stableized on my own by the Grace of God for 6 years.,& am in my 10th year with severe advanced liver disease. They told me to I wouldn't live 2 weeks but by the Grace of God here I am.I am so sorry to hear about you & your husbands situation.You will get a lot of support here & you are not alone.My prayers are with you . later....
Thank you for your kind words and support. It is comforting to know you have stayed on top of your disease for ten years. That's amazing and I'm so happy for you. One coma was enough for us thank you. And that would have been avoided had the medical doctors listened to me when I said there was a problem. Instead we were told to leave well enough alone as Gene needed to have the surgery or he would be dead in a few months.
With Gene, the longest he can stay off antibiotics is about seven days and sometimes he has to switch before his week is up. We were given the line also that should he become resistant to the antibiotics there would be nothing available with a severe infection.The problem is, Gene cannot live without the antibiotics; we tried that and he came close to death.
Gene is taking Cipro, Clindimyacin, Amoxicylin, Doxicyclin, Neomyacin and Rifaximin. Flagyl and Septra have been less effective because they forced him to stay on antibiotics for too long a period of time. Leading up to Gene's coma, he increased his lactulose considerably but it didn't work; only antibiotics did. Lactulose dehydrates Gene without the desired laxative effect.
Our biggest problem has been Gene's lack of adequate medical care within Kaiser and their red tape. His primary care physician stated he didn't want to be involved a year and a half ago because he was in over his head. The GI specialist said there wasn't anything more she could do but, when we insisted, agreed to check Gene every three months. The Hepatoloigis at our local facility is incompetent and the second opinion Doctor at another location is wonderful but too far away to see regularly. Except for lab work every three months, we are on our own. It's so scary. I'm a wreck much of the time but still enjoy life and am grateful for every day we have together.
I've had these pent up feelings for so long now that it's hard to just do a short post.
What are you doing for yourself? Please keep in touch.
Barbara, welcome to the site! You will find others here who will be able to relate to you in caring for a husband or other person with liver disease. Those in the helping professions especially burn out fast when they are caregiving nearly 24/7. You absolutely need to find time for yourself--get a manicure, have lunch with a friend, window shop--anything to get out and give yourself a break.
I think it's a miracle that your husband is still here. I have inoperable liver cancer, and am in the position of not receiving any treatment whatsoever in the 9 months since diagnosis. There is very little that will benefit me, and the treatment that would be the best and most hopeful has been bogged down in red tape, being an "orphan drug" and the first time Mayo here has used it.
I'm glad you found us! Now do something nice for yourself. ;)
Hi Barb, Welcome to the forum. My husband has end-stage cirrhosis, and is in need of a transplant. Our local M.D's and GI doctors were over their heads with my husband also. They sent him to Memphis (3 hour drive) to a hepatalogist on the transplant team, in January. It has helped stabilize my husband as much as possible. My husband takes 1 antibiotic a week for preventative maintenance against infection, he has severe ascites. He has a paracentesis about every 2 weeks, they take 6-8 liters off every time. He has been in a coma also (in 2001). He returned to work in 6 weeks after his coma. Was pretty normal, with a little swelling in his feet til November of 2005. I also like you have a very stressful job (nurse), I have had to cut my hours to take care of my husband, his encephalopathy varies. My heart goes out to you! I know how hard it is, and you have been doing it for 3 years. I have the anxiety and depression also, but it has gotten better since I have started venting here on the forum and also knowing that there are other people, in the same boat that can support me, because they know what it is really like. HUGS and PRAYERS!!!!
Hello Valerie, Tawnya, Connie, Teresa and Barbara, I am thinking about you all and praying as well...Very nice to meet you gals. I am home sick with bronchitis, will catch you all hopefully this eve. Hugs and Prayers to all of you!! I hope you all are having a better day today!
Hi Donna,Sorryto hear your still sick .Take care & I hope you get better real soon .I'll bee watching for you later !Get lots of rest & talk to you later. HUGS .later....
I read your post and see the miracles you are given and I understand your anxiety - my father has cirrosis - he was acctually diagnosed with it a few years ago but just recently went into the hospital with days to live - My family and I moved in with him and he recovered so much he is living on his own and we have moved back home (in just 5 months) - so I know miracles happen and even though my Dad's Drs were great - he was/is definately considered a hospice type patient - it is so hard not to worry - I was just thinking YESTERDAY when I was analyzing my Dad's swollen knees and color - "let it go - he is here!!" It is so hard for me not to worry about every little thing he does - will he strain himself too much, over do etc. - I am his daughter so as a wife I can't imagine the worry...
so I guess what I'm saying is WELCOME and you worry and anxiety is something that is unavoidable - type away... there are people here on this site with so much good information and it helps to feel you aren't alone.
Hi Barb, sweetie don't worry right now about having long posts. Most important thing right now is you talk & get it out before you end up going into full meltdown.How much lactulose was your husband taking? I see inyour post your husband is building up an immunity to some of the antibiotics.Sweetie is there anyway at all you can get involved with a more competent hepatolagist ? My heart goes out to you sweetie. Please remember you are not alone. There are a lot of us here to support you ok? my thoughts & prayers are with you& your hubby. Take care later....
Thanks everyone for being there for me. I can feel your prayers and arms around me and it is very comforting.
It's nice to have someone to talk to and share information. What we get from the medical profession is always in their best interest rather than ours.
We were told that when Flagyl and Septra stopped working it wasn't an actual resistance. Each antibiotic targets certain bacteria that interact with the toxins that Gene isn't able to eliminate. This will happen even when his ammonia levels are WNL. When he rotates to a different antibiotic it goes after the different bacteria that replaced the ones killed off. After weeks or a few months, Gene can go back to the antibiotic that had become ineffective. I personally think Gene could still take Flagyl and Septra but he refuses to try them. If all else fails, he will give them a try. Also Flagyl made him very sleepy.
We did see a wonderful Hepatologist and Infectious Disease Specialist on a second opinion at a different Kaiser Medical Center about 45 minutes away. That was a year ago and Gene says he doesn't have the energy to use this facility even though the Doctors were much more competent and willing to work with us. It's been a year now and a new referal would be necessary to return.
We're well aware that should Gene get a massive infection and he develops immunity to the classes of antibiotics he's on, there is nothing that could be done to save him. However the Hepatologist in Walnut Creek who we trust said the only thing keeping Gene alive are the antibiotics and the Doctor who suggested the rotation deserved a medal. Of course, it wasn't the idea of any Doctor. He further said Gene would be dead in days without antibiotics. We don't agree; it would be weeks. Between antibiotics, Gene tries to go as long as he can before starting up again. Sometimes he can't even go one day and at other times he gone eight to ten days. We're hoping that at some time his liver will improve enough to not need antibiotics.
After all, we have seen miracles already with Gene. When we were in Hospice, they called him Miracle Boy the last few months and jokingly said they had to see sick people. Initially, Gene was on Procrit but after several months his hemoglobin returned to normal and has stayed okay for over a year now. The hospice nurse said this was unbelievable and she had never seen this happen.
I love each and every one of you and also pray for everyone.
Hi Barb, Flagyl is a very fast acting & very potent antibiotic that's why it made him so sleepy. You guys sure are in a catch 22 . I really don't know what to say to you with your last post but please know I am listening to you. Sometimes it's better to just listen. Your not alone sweetie & we are here for you even if all we can do is listen. Keep talking to us knowing this OK? I wish I could be there to give you a big hug. so I am sending you a big hug. Drs. can't say when it's our time tho they try. Only God knows that one. They told me 2 weeks & I'm now here in my 10th year. They called my family so many times to come right away but God had other plans.Hang in there honey miracles do happen. My thoughts & prayers are with you & your husband. Take care. later....
Hi Barb, I am really glad you came to the forum! I have felt the support and prayers myself. I find myself writing long post, but there is always so much that can be said. You are teaching me more about a different approach, to the encephalopathy. It is a miracle that Gene is still here. We have to travel 3 hours to see one but it has been well worth it. My husband has gotten more stable. That has been a miracle to me. Just keep on posting, we are here often. I have to go to bed now, we have a 3 hour trip to Memphis in the morning. My prayers are with you!!! HUGS!!
There is no doubt that it's a Miracle that Gene is still here and I thank God every day.
The antibiotics Gene is using are not standard or approved treatment for hepatic encephalopathy but they are the only thing keeping him alive. Neomyacin was used for encephalopathy before they developed Lactulose and Rifaximin, used for traveler's diarhia also has been shown to help hepatic encephalopathy. I don't think the researchers are motivated to find other treatment. You mention cirrhosis and they think it's just another alcoholic anyway.
Gene's liver problems were silent for most of his adult life; he had Hepatitis A in the army but at the time it was diagnosed as the flu. Gene always got very sick for no reason. In his late sixties he started drinking because his acid reflux was so painful and sipping alcohol soothed the irritation. The Cirhossis developed very quickly and was irreversible even though he did everything right the moment they told him what had happened.
Gene's system is always atypical. Hepatitis A rarely does liver damage but it predisposed him for later problems. Lactulose works for most encephalopathy but not for him. Esophageal cancer kills quiclky without treatment but my Gene is still asymtomatic. The GI specialist suggested another endoscopy to see what was happening but we decided to leave well enough alone. On his second biopsy he developed a bleed and could have died. The doctors wouldn't even do a less invasive surgery to remove the cancer because they said he would bleed to death. His doctor thinks the toxins from his liver are what has kept the cancer from spreading; but I know it's a higher power involved.
But everytime there is a new symptom or pain anywhere in Gene's body, I fear the worst. We were told that when the cancer spreads it will go to his liver first and it will kill him very quickly. The encephalopathy can be a blessing if someone is suffering. But there is nothing to dull the pain for someone who loves another more than live itself.
I'm starting to wake from my nightmare. My new friends on this site bring daylight into my dark terrors. And the feelings of helplessness are being replaced by hope. I do believe, Thy Will Be Done.
Lastly, I agree that nobody can say how much time anyone has.
But when the Doctors offer no hope and tell patients and families the condition is terminal, in many cases our subconcious hears this and it becomes a self fullfilling prophesy.
Hi Barb,Neomyacin is only used for patients that are not tolerant to lactulose. It is not better but it is more tolerated than lactulose & hepatologists are reluctant to use it because they claim lactulose is more effective.They have done a lot of research on encephalopathy & we who suffer from encephalopathy are fortunate they found anything to control it. This laxative flushes a large part of toxins from our body that the liver can no longer flush. Without lactulose I would not have anything to rid the toxins & therefore would not have come thru those 4 commas. Also I would have been in many other commas many times in the past 10 years.W ithout the hand of God & lactulose I would be dead from liver failure!Many Drs. do think cirhosis-alcohol but most do not as there is a long list of reasons for cirhosis & many types of cirhosis Mine was prescription drug use. but the bottom line is the same for all cirhosis tho in some cases with lactulose & other diuritics progression can be slowed or even stableized for a number of years.NASH cirhosis can take many years even decades to do it's dirty work. Biopsy & bloodwork shows them what type of cirhosis it is.Gene is truly a miracle to have survived the bleed during his cancer biopsy & I would also be reluctant to go thru that again if I were Gene. He suffered enough.God has certainly been with him as He has been with me.Barb I am a long time sufferer of hepatic encephalopathy & it is sheer agony, it is NO blessing to any of us who suffer with it. That is the worse part of liver disease!I am so glad that being on the forum is helping you support, sharing experience & knowledge definately let us know we are not alone.I have fought extremely hard to still be here for the last 10 years I could not have done that without God.Yes we can hear when we are outof it or in comma but for most of us it does not become a selffullfilling prophacy tho it does not give us much encouragement.Other other hand it does have that effect for some who do not have the strength to endure. You have to be a survivor to fight & deal with liver disease.This certainly holds true for our spouses , family & occasionally some friends who still stand by us for the long haul.Especially our spouses whom I hold in the highest esteem for what they endure & still stand by us. Hang in ther Barb We are here for you.Please continue talking with us & I give you a lot of credit for your strength.My thoughts & prayers are with you & your husband. later
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there."
I indeed am trying to find something great in each day. What a wonderful and uplifting message you have added to your posts.
I know sometimes I get buried in the muck of daily problems and concerns and forget the beauty in life.
I certainly have been thriving on the support from everyone here on the forum. There is never a critical word and I find it a safe place to speak from my heart.
And I think I'm learning not to make a big issue out of every little change up or down in Gene's energy, mental status or schedule. I just feel so blessed to still have him beside me.
We have plans to getaway overnight at the Rose Hotel for Valentine's Day. For every special occasion, we stay in their Fireplace Suite and have the full romance package. It gives us something to look forward to and so far we haven't had to reschedule any dates. During this period I am wife, friend and lover; not caregiver. I tend to forget my other roles under the stress and crisis of life ordinarily. A social worker once told me to let Gene know when I'm wearing my wife's hat so he won't think everytime I look at him I'm checking to see if he's hunched over, dropping his jaw or moving slower from encephalopathy.
Bless each and every one of you. I cannot find the words to state my appreciation. Even when you are personally in distress, there is always a kind word, hug and prayer for the rest of us.
Hi Barb, you made me cry with your post. You sound like a beutiful person.Forgetting the beauty in life seems to be the first thing we all forget in times of darkness & turmoil, I'm quite guilty of that myself & try to turn myself around. I wrote that message because that's my philophasy to find a reason to get out of bed instead of giving up sometimes.I f I didn't search for one thing each day I'd give up so sometimes all I can find in the day is I'm still breathing but then that's a lot right there. Then it is easy to find things throughout the day.That's excellant advice the social worker gave you. Gene will feel so much better when you wear your wife hat.Well little miss romance, I am so jealous! I am so very happy you do this,that is what memorries are made of. I hope & pray Valentine's plans are extra special this year. You deserve it! Your situation is not an easy one so enjoy every second you can for happiness & getting away like this away from the norm.My prayers are with you all . HUGS. later....
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there."
Hi T, You always lift my spirits to! Thankyou. HUGS & Prayers. Take care later....
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there."
Today I am grateful for Valerie and Theresa and Donna and each and every one of you on the forum. I don't know how I got through each day before meeting you. I only hope I can offer you a fraction of what I have felt from your love and wisdom.
I'm grateful that God has allowed more time for Gene and I to be together and that we manage his symptoms as well as we do on our own. Perhaps because we are on our own. we have learned to trust our instincts and judgement.
I'm grateful that my little lovebird is recovering from his severe and near fatal respiratory infection. For Cupid has made me smile on many days when life was overshadowed by the cloud of illness.
And I'm grateful that I have work I love and that I can make my consultant meeting this morning if I can tear myself off the computer to get ready.
I'm learning to live in the moment and make all plans tentative. This was harder for me to accomplish than dealing with two life threatening diseases.
I hope everyones day is better today than yesterday. We are all still here.
Hi Barb,After reading you post it is indeed a beutiful day! I too don't know how I'd get thru the day without all you good people in here.We can't go to far wrong if we listen to our instincts. we all need to learn that skill & learn to differential between instinct from what we want & what we truly feel in our gut.I'm glad Gene is recovering from his respritory infection. All viral infections are life threatenig to us with liver disease & is too often fatal so I'm especially happy Gene was blessed to come thru this.You sound like you & Gene are very close still despite all this disease does in our lives. Barb can I ask you to share with us how you have attained this? The reason I'm asking is as you know things can get really rough for spouses whom are caregivers & patients whom are spouses. I know I for one would greatly appreciated your input on this.We make any plans we are able to make tenative too,it's not easy & can sometimes be very disappointing & frustrating.My thoughts & prayers are with you Barb.God Bless.later....
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there."
.Take care & I hope you get better real soon 
.I'll bee watching for you later 
!Get lots of rest 
& talk to you later. HUGS 
.later....