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Permalink Reply by Doug on July 13, 2017 at 7:17pm

Cathy, Please accept my deepest condolences on your brother's passing. When I first read the title of your post, "My brother's death cirrhosis", I can't begin to tell you how badly it affected me. Please let me explain, I, too, am dying of cirrhosis of the liver, and I'm close to your brother's age, and I have a sister named Cathy. The only difference is, is that the cause of the cirrhosis that has destroyed my liver is not definitely known. I was addicted to drugs(heroin) for many years and that addiction led me to a 20 year sentence in state prison of which I served nineteen years, eight months. It wasn't until I was released in 2006 did I find out that the damage that to my liver was severe and that a transplant is my only hope. The reason I said that the definite cause is unknown is because there were two possibilities, either I contracted it through my drug use(even through I never shared a needle with anyone) or I contracted it in prison where it could easily be transmitted by a number of different ways. About a year before I was released from prison, I also began feeling like I had a case of the worst flu I ever had and I felt that way almost everyday. Unfortunately, in prison, inmate health care is not a priority and when I did go on sick call it was dismissed as being the flu without any blood work being done. I did find out through research that the virus had been ravaging my liver long before any of the symptoms appeared. Reading your post has brought tears to my eyes, not only because of your loss, but because I know a lot of what your brother had been going through. His repeated attempts to get clean by going to rehab multiple times only to come out and pick up where he left off. I can assure you though that every time he did go to rehab he had honestly wanted to quit drinking, but when he came out of that protected environment and faced daily life, he had to deal with some of the "triggers" that caused him to relapse over and over again. When you said that "I tried everything to save him…. but I guess he didn’t want to be saved. I can safely say that you're wrong about that, because why would he continue to go through rehab after rehab if he didn't want to be saved? Going through rehab is not easy, in fact for me it was the hardest thing I have ever done. Sadly, Cathy you'll never fully understand those "triggers" or the reasons why he continued to drink, all the while knowing full well that he was killing himself. Those of us who are addicts and alcoholics have been described by some as being "master manipulators" in that we can talk ourselves, and most of those around us, into doing anything regardless of the consequences. When I said that his going to rehab and then coming out and picking up where he left off is not only heartbreaking for those he loved and who loved him, but medically it's extremely dangerous. I don't know the length of stays in the rehabs he went to, but when he went in and remained sober for the length of the rehab, his body had cleansed itself of all the alcohol and toxins he had accumulated. So when he got out he started drinking as much as he did before he went in and that much alcohol so soon afterwards was too much for his body to handle. Cathy I don't know if any of what I've said makes any sense to you or not? Please remember that I'm not a professional counselor, but just someone like your brother and I'm only sharing what my addiction put me through. In your post you had said that " I am sure he knew what was going on he knew all about end stage liver because of our dad and I found on his computer that he had Googled end stage liver symptoms. He was jaundiced, bloated, sick to his stomach and had very bad diarrhea he knew what was happening." There is no way that I can know for sure, but putting myself in your brother's shoes, I think that he may have felt that he just wasn't strong enough both, physically and emotionally to go through one more attempt to get sober, and nothing he did was going to stop the progression of the cirrhosis. So he figured let me try and relieve this pain with the only thing he knew would definitely relieve his pain, alcohol. I'm not necessarily talking about physical pain, but the pain that addicts and alcoholics feel when they have done everything they can but nothing seems to help. Cathy please don't blame yourself, and you know that if your brother was here he definitely wouldn't want you to. I've been on the transplant list for quite a while now, but the list is so long and there are some things that need to be checked before they will agree to transplant one. So I'm nearly 100% positive that I'll be dead long before a liver becomes available. I'd like you to do me a favor if you can and that's will you please give me a call? I would like to talk with you. My number is 717-607-9151. Please take good care of yourself Cathy, God Bless

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Permalink Reply by morgan on July 13, 2017 at 9:24pm

What a beautiful outreach Doug.  I too had a brother die of alcoholism at 52.  He had gone on the wagon several times but I think his reality was just too hard for him to overcome.  Much the same for me now.  I cannot seem to overcome my grief of my husbands death.  

The circumstances of your brothers death were very similar to my brother's.  He too said he had the flu.  He said he was going to go see a doctor.  I was 1500 miles away and I was encouraging others closer to go check on him but it was Easter weekend 2016 and it appears he was dead for three days before someone took the time to go check on him.  I too feel so guilty and through my life have wished there was anything else I could have done to change how some of his decisions brought him sadness.  

But now I know sadness.  I know how hard it is to try and find a way to cope.  To manage. To find a way around the battles my brain wants to fight with me.  I have struggled with the grief of death for four and half years and though I have more hours of being out of my hole than I did in the beginning few years, when my brother died I was not any more prepared to cope with loss.  I still grapple with it.  Daily.  And when it hits me now I go way down.  Much more intense.  But then I lost the one man who held me tight.  Who loved me unconditionally.  My dearest darling husband.  It has now colored my entire way of looking at life.  

And when we have a love for someone it is traumatic when the loss happens.  For some reason the mind is unequipped to rationalize the reason for the void left behind.  There is no reason.  I have been looking for it for years.  

I can only say Doug has some wise words and I can hope you will find some moments of respite that allow you some space from the ongoing questioning that you will now do.  If it's any consolation it's what we all do. It's why we are on here posting and reading and asking for support. We are here for each other.  As AnneJ said, I don't know what I would do without you.  I've needed to know I am sane for feeling the way I do.  

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Permalink Reply by Doug on July 13, 2017 at 10:14pm

Hello Morgan, I send my sincerest condolences to you for your loss and thank you for your kind words. I didn't share it in my post with Cathy, but when I was released from prison in 2006, I had moved to a new state because of an invitation by a sister who since has told me two years ago that she considers me dead to her. I moved here and was kicked out shortly after I got here from her home. The reason I've told you that is because the area I moved to is extremely rural and because of the cirrhosis I haven't had the opportunity to make any friends. Now it's not only the cirrhosis I'm struggling with, but unimaginable loneliness as well. I'm single and my days are always spent alone without even a phone that'll ring to break the silence. I have wasted so much of my life from both my addiction and subsequent incarceration that I no longer feel as if I'm living, but merely existing, counting the days until I'm gone. There are many times when I can't tell which pain is worse. Knowing the fact that I will most likely die without ever having someone special in my life has been the most difficult to accept. The best way I can describe the blessing of having that special someone in your life as you have, is have you ever noticed how much more beautiful a sunset is if you have someone you love and care deeply for watching it with you? I think Tennyson said it best when he talked about the pain of losing someone, "I feel it when I sorrow most; Tis better to have loved and lost, Than never to have loved at all." I can sympathize with your feelings of depression Morgan, the depths of which seems infinite at times. Sadly, there's nothing anyone can say that will help and the time it takes for you to come back from that dark place seems to get longer each time. Morgan, I can only wish, and honestly hope, that you will find something or someone to fill that void. As I said to Cathy, if talking to someone who has felt the same pain helps, I left my phone number with Cathy and please use it. God Bless Morgan

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Permalink Reply by Cathy on July 14, 2017 at 1:56pm

Thank you, Doug and Morgan, for your very kind words. Your words have made a big difference to me. You validated my feelings. Often after a funeral, people forget that your life has changed forever and they don't understand why you are not moving on or they don't want to hear about your grief. Just the other day somebody at my work asked me how I was doing? I told them not so well still upset over my brother's death. To that, they replied, "Oh, I thought you would be over it by now"? Needless to say, I was shocked and speechless.

Doug, I want you to know that my brother and I had a very big falling out in September of last year. Due to his disease, he became very abusive towards me because I knew the truth about his drinking and he could no longer fool me. I sent him an email on Christmas Eve wishing him the best and letting him know that I still loved him. In January I reached out to him. I made a promise to myself that I would not react to him if he was not sober. I would talk to him as if he was. He answered and I was so relieved that he was sober. I asked him how he was and he immediately told me he felt ashamed and was sorry for what he had done to me. I told him that it was ok because I loved him and that I was sorry for being so hard on him but I was just trying to fix him and save him. I told him that I realized I did not have the power to that because this was his journey. However, no matter what, I am still behind him and love him. He understood and we moved forward. We started to talk more and the more we talked the more I could hear he was sober which made me so happy. Until one day in April, he didn't return my call and then he didn't return my text. Then finally a few days later he spoke to me. I could hear in his voice he was not sober but I didn't judge him. I acted normal I didn't want to send him over the edge. I just reassured him I loved him and that I was there for him. After that conversation he did not return my calls again....10 days later he was dead. I am sorry I didn't go to him but he probably would not have let me in the building. I am glad we made up and I am grateful for those few last phone conversations.

Doug, I feel you need to reach out to your sister. Let her know how you feel. Do it for yourself and for her. Healing needs to happen there is to much pain when there is no goodbye. That is what I feel now the pain of no goodbye. If my brother had called me and told me he was ill I would have taken him to the hospital and if he didn't make it he would not have died alone and I would have held his hand to the end. But he didn't give me that chance and that pains me more than anything. It haunts me to think that he was probably scared because he knew the end was near and that is something I am having a hard time dealing with.

Thank you all for reading this
x

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Permalink Reply by Cathy on July 14, 2017 at 2:30pm

Thank you, Doug and Morgan, for your very kind words. Your words have made a big difference to me. You validated my feelings. Often after a funeral, people forget that your life has changed forever and they don't understand why you are not moving on or they don't want to hear about your grief. Just the other day somebody at my work asked me how I was doing? I told them not so well still upset over my brother's death. To that, they replied, "Oh, I thought you would be over it by now"? Needless to say, I was shocked and speechless.

Doug, I want you to know that my brother and I had a very big falling out in September of last year. Due to his disease, he became very abusive towards me because I knew the truth about his drinking and he could no longer fool me. I sent him an email on Christmas Eve wishing him the best and letting him know that I still loved him. In January I reached out to him. I made a promise to myself that I would not react to him if he was not sober. I would talk to him as if he was. He answered and I was so relieved that he was sober. I asked him how he was and he immediately told me he felt ashamed and was sorry for what he had done to me. I told him that it was ok because I loved him and that I was sorry for being so hard on him but I was just trying to fix him and save him. I told him that I realized I did not have the power to that because this was his journey. However, no matter what, I am still behind him and love him. He understood and we moved forward. We started to talk more and the more we talked the more I could hear he was sober which made me so happy. Until one day in April, he didn't return my call and then he didn't return my text. Then finally a few days later he spoke to me. I could hear in his voice he was not sober but I didn't judge him. I acted normal I didn't want to send him over the edge. I just reassured him I loved him and that I was there for him. After that conversation he did not return my calls again....10 days later he was dead. I am sorry I didn't go to him but he probably would not have let me in the building. I am glad we made up and I am grateful for those few last phone conversations.

Doug, I feel you need to reach out to your sister. Let her know how you feel. Do it for yourself and for her. Healing needs to happen there is to much pain when there is no goodbye. That is what I feel now the pain of no goodbye. If my brother had called me and told me he was ill I would have taken him to the hospital and if he didn't make it he would not have died alone and I would have held his hand to the end. But he didn't give me that chance and that pains me more than anything. It haunts me to think that he was probably scared because he knew the end was near and that is something I am having a hard time dealing with.

Thank you all for reading this
x

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Permalink Reply by Nancy on July 23, 2017 at 10:58am

Cathy:  I am very sorry for your  loss.  Doug: I lost my husband of 43 years to HCC liver cancer on May 10 of this year.    He was treated for Hepatitis C in 2005-06 and was supposedly "cured".  However, from everything I've read now and after his diagnosis, the virus can hide and continue to cause damage and liver cancer.  He went to the MD annually for physicals and in the past few years the MD never checked his liver function tests.  I am very angry about the MD not being more thorough with his exams.  He told the MD at his physical in both 2016 and 2017 he had joint pain, not as much energy, and just didn't feel himself.  The MD told him he probably had arthritis and needed to lose a little weight and exercise.  When he went back to the MD in Oct of 2017 after his physical in April, he had sharp pain in liver area.  MD told him he pulled a muscle.  But at my insistence MD ordered an ultrasound and there was an 11 cm liver tumor already inoperable.   He passed away 7 months later.  This is my first time posting on any website  and I have found very little anywhere where people talk about liver cancer or liver disease.  I think people think it's a stigma.  His Hep C was from drug use in the 60s.  He also drank a lot in the old days.  I also wanted to tell you Doug: I know someone on the transplant list thru Mayo who was drinking until a year ago.  He is doing pretty good as they told him he had to stop drinking which he did and hes been on some medication (I do not know what).  His color is better, he is feeling good,  and they have told him he is not in dire need of the transplant right now but still on the list.  I know the liver can regenerate depending upon the severity of the damage. 

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Permalink Reply by Doug on July 23, 2017 at 8:15pm

Hello Nancy, I don't know how both you, and Cathy, can carry on as well as you have after losing someone you loved so much? It's unbelievable to me that your husband's doctor could be so inept as to never test his liver function, that's so easily done by simply drawing blood. The symptoms your husband was having in both physicals, 2016 and 2017, are pretty classic signs of liver disease and for his doctor to say it was arthritis is almost criminal, especially since he was having the sharp stabbing pains you described. I agree with you that the stigma attached to cirrhosis is cruel as not everyone develops cirrhosis through drinking or drug use, but nowadays almost everyone will attribute it to those two things. Unlike both you and Cathy the only person in my life that has been affected by my disease is myself. I'm not sure what the medication you spoke of is, but there are a few drugs that have come out in the past year or two that gave high success rates for people who had genotype 1. The one that was prescribed to me, and the one I had placed every ounce of hope I had in was a 12 week, three drug regimen of Solvadi, interferon and ribavirin and after the twelve weeks I was no further ahead than when I started which has only made my depression worse. The total cost for the twelve weeks was a little over a $100,000, The Solvadi was the biggest expense as a 28 day supply of it cost $28,562. Up until a point, the liver will rejuvenate itself, but once scar tissue has developed it's very difficult, if not impossible, to reverse that process. To stop drinking/drug use for a year prior to transplant is a standard requirement, but there is also what they call a MELD score that they use to determine who is in most need of a transplant. They are very selective about who actually gets a transplant and rightfully so. The liver is the second most transplanted organ and there is such a shortage now so being on the transplant list as I am, doesn't necessarily mean that you'll get one soon.  Nancy, as I had told Cathy, I sincerely wish there was something I, or anyone, could say that would help ease the pain you're going through, but sadly there isn't. They say that time will heal all wounds, but for some, time doesn't seem to help, but I pray that it will heal your pain. Nancy I understand that your pain is still fresh, but when you're ready, I would seriously consider taking some sort of legal action against that doctor whose ineptness was the primary reason that you've lost the love of your life so soon. I'm very sorry that you had so much difficulty in finding a place sooner than now that maybe could have helped you. If you ever need someone to talk to I had given Cathy my phone number, but if you think it would help, I'll give it to you also. It's (717)607-9151. Please take good care of yourself and God Bless.

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Permalink Reply by Nancy on July 24, 2017 at 9:03pm

Thank you. I appreciate your kind words. I work with someone who has a friend who was on the transplant list for a long time and was due to Hep C damage from a blood transfusion. He was going in weekly for parencentisis. My co worker was going to donate part of her liver and was ready to go get tested when her friend got a call the transplant team had a damaged liver. He took it. It was in better shape than his was. He is doing very well and it bought him some time. Just a thought.

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