David'sGirlStill Posted March 7, 2009 Report Share Posted March 7, 2009 First of all thank all of you for being here. I found this site and I feel at least there is someone who won't think I'm grieving wrong.My best friend, love of my life, husband closed his beautiful green eyes for the last time on 2/23/09. We were told in Sept 2006 that he had Hepc and cirrhois. He took his meds, we made all our food from stratch and he was doing ok. In July he started developing ascites. In Nov. they discover he has a cancerous lesion on his liver. We went through the endless tests and questions and he was placed on the transplant list with a MELD of 22. We were looking forward to a new lease on life. They said he would start receiving "offers" of a liver in June. He had his good days and bad, frequent hospital visits. BUT he was ok. I took him to the hospital on Thursday night and he was his old self. Laughing and joking, telling me how great our life was going to be. His sodium level was low and he was scheduled to have his ascites drained on Friday. I left at 2am was back there at 6am and he was doubled over in pain. The nurse said she gave him Mylanta, Maalox, and Morphine. HUH!! She claimed he had gas. I had to got to work. I was the onlyt one working thta day. At 5pm our daughter called and said Daddy is being evualated for ICU. His BP was 60/40. Thank God I was in the hospital gift shop when the call came in. Long story short. He was medivac to the transplant hospital. But when we got there they said he had a hole in his bowel(mostl likely from having the fluid drained) and that they couldn't operate. My baby had come to the end of the road. He had sepsis. I said by his side for 4 days as the life slipped out of him. He did wake up long enough to tell me he loved me and the angels were there. BUT he didn't want to go. The doctor's kept saying he wouldn't make it through the day then the night. BUT he hung there going out the figher he was in life. I miss him so. I can't work, I can't sleep. I want to go with him sooo bad. We had watched the notebook and he told me that was the way it was suppose to be. He couldnt leave me here alone. Yet here I sit.Everyone either tells me to snap out of it or I'll fall in love again. I want to scream at them. I have loved this man for 31 years married for 30.Thank you all for listening. I don't know what to do Link to comment Share on other sites More sharing options...
marsha Posted March 7, 2009 Report Share Posted March 7, 2009 Your beloved husband died 3 weeks ago and people are telling you to snap out of it?? This just baffles me, and makes me angry for your sake. I'm very sorry for your loss, my friend, and you've made a good decision to post here. In the 5 months I've been on this site, the outpouring of feelings, support and advice has helped my heart and soul. Because even if we all grieve our loss so personally, there is a path towards recovery (for want of a better word) of ourselves that's universal. To share that makes me feel much less alone. My husband was diagnosed about this time last year with billiary duct cancer, and he died on July 1. To see what cancer does, first hand, is something I wouldn't wish on my worst enemy. He, too, fought, and although I can't seem to stop reliving the nightmare, I also recognize his strength of will, and try to carry that within me daily. I find it also helps greatly to keep telling the story of our love and loss to those who are receptive.As far as others' "advice", you'll get to know which to take to heart and which to chuck out the window. Unless someone has been in this situation, frankly they don't know what they're talking about. Trust your own heart and gut, and come here if you need to vent. For now, please be gentle on yourself, and please continue to post. Peace, Marsha Link to comment Share on other sites More sharing options...
kayc Posted March 7, 2009 Report Share Posted March 7, 2009 David's Girl,I am so sorry you lost your beloved husband. I can't even tell you what I feel like telling those people on your behalf! You haven't even had enough time to get out of shock, to register it, let alone to "snap out of it!" As for telling you that you'll fall in love again, that is a totally inappropriate response. Unfortunately, ignorant people who don't know what to say, say inappropriate things. They mean well, but until you've been through it, you just don't know. I have a friend who HAS been through it and she is one of the worst offenders, but not everyone responds in the same way and we just think different.Please come on line here whenever you want, you will find others who can relate, who understand. We are like a family, we encourage each other, and this is a very compassionate site.Try to surround yourself with supportive people as much as possible and give yourself all the time you need, it will take it, for your healing and adjustment...most of us find it can take years for something of this magnatude. That doesn't mean you'll always feel in as much pain as you feel today, but the adjustment is gradual and you can barely discern any progress until one day you look back and realize you have come quite a ways...that day will probably not be for quite some time. Above all, know that whatever you are feeling is normal and appropriate for the trauma you've been through. Don't be afraid to stand up to people, tell them how you fell, try to do so in a kind way, but do tell them, it's okay to express yourself.We will keep you in our thoughts and prayers.Love,Kay Link to comment Share on other sites More sharing options...
mrspapajohn Posted March 7, 2009 Report Share Posted March 7, 2009 David's Girl - - I am so very sorry for your loss. I truly can relate to your situation. My husband was on a transplant list for four years and went through the ascites and all the other tortures associated with liver disease. He died January 6, 2009. I feel the same way about the healthcare and treatment he got as you feel about your husband's care. Stephen did receive a liver in June 2008. Still, they lowered his immune system so low that his Hepatitis C recurred and was so virulent, it killed him. At least he had a few months of feeling well before he had to start going through liver disease symptoms all over again.As for the counsel of friends, they probably have no idea what you're going through. I still cry each and every day, think of my husband every minute of every day and am unable to go out. Even a trip to the supermarket takes an extraordinary effort of will. I still wish that I could go with him. Life is so empty without your partner and love. The people on this site are wonderful and nothing has helped me like the support I have gotten here. Please keep coming back and keep posting. You are not alone.Kathy Link to comment Share on other sites More sharing options...
David'sGirlStill Posted March 8, 2009 Author Report Share Posted March 8, 2009 Thank you all so much. I'm so sorry for all of your loss's. I haven't had the easiest life nor the hardest BUT this is killing me. Or at least I wish it would. You all have already helped me so much. I took a shower today and I swear it took all the energy I had. Then I went to the grocery store and that was pure torture. I kept thinking he should be with me or I needed to buy this or that for him. I'm sorry for rambling. Thank you for listeningPhyllis Link to comment Share on other sites More sharing options...
kayc Posted March 8, 2009 Report Share Posted March 8, 2009 Phyllis,It's not rambling at all, it's good for you to get your feelings out. It was a long time before I could go get groceries...my daughter or sister had to do it for me...it was one of George's favorite things to do, and the memory just killed me. We always made it an event, it was like the highlight of the week to him...I know, it sounds weird, but when he was growing up, it was a large family and he didn't have food, he went without so his younger siblings could eat.It's going to take time for you to process all of this, let alone adjust...your feelings are right on schedule for you.Take care,Kay Link to comment Share on other sites More sharing options...
Peggy1617 Posted March 9, 2009 Report Share Posted March 9, 2009 I understand exactly what you are going through. I lost may husband two months ago. I couldn't eat, sleep, or even think. I thought I was losing my mind. I would sit and cry and just want to die so that I could be with Rich.I am currently seeing a grief counselor every week. I joined a gym to get out of the house and occupy my mind an try to tire myself out. I still cry and sometimes I am back to where I was two months ago. The other night I had nightmares and had no one to comfort or protect me.I do have some friends that will lend a should to cry on and try to comfort me but they have not experienced what we have been through. This website has others that have and will provide the understanding and support that you need.Take care,Peggy Link to comment Share on other sites More sharing options...
David'sGirlStill Posted March 10, 2009 Author Report Share Posted March 10, 2009 Thank you all for your reply's. It truly does help. I just feel so alone, even when I'm with other people. I have to go back to work tomorrow and I'm scared to death I'll fall apart.I can't think about the next hour and I have to function planning sales. What a joke. I miss him so. I was so sure he was going to be ok. This whole liver disease is a rollercoaster full of false hope. But I just want to be with him. I'm done with this earth. Worse part of it is I know I stuck here.Thanks for listening Link to comment Share on other sites More sharing options...
kath Posted March 10, 2009 Report Share Posted March 10, 2009 Thank you all for listening. I don't know what to doDear DavidsGirlStill,You are doing what you need to do. Keep coming back and sharing your story. I was told that the liver can function entirely normally with only an inch of healthy liver intact. But when it fails, it fails fast. That is what happended to my husband, although his official cause of death was Septic Shock. You had 31 years with your husband. You can't be expected to move through your grief in an instant. I was married for 21, but we were together for 27. It a long time. Long enough to not be able to imagine a life without him, yet that is what we are to do. I am very sorry for your loss. Don't feel like you need to rush the feelings that come your way. Grief has it's own timetable. Sometimes, I think we are just along for the ride. It sort of takes over, directing our thoughts, our sleep, our eating habits. Just do what you can to take care of yourself. Writing helped me. So did reading Bob's favorite books. I found this site much later. Its been a Godsend.Take care,Kath Link to comment Share on other sites More sharing options...
LarrysGirl Posted March 10, 2009 Report Share Posted March 10, 2009 Phyllis, It is really important to give yourself credit when you accomplish "any" task. Going to the grocery store in the beginning was a nightmare for me. We loved shopping together, practically a silly date for us and the first time I went into the store without him I could barely stand it. I couldn't walk down the aisle's where his favorite foods were. I cringed. It is still hard after three years but I can survive it when I never thought I would. In the beginning I wanted to join him desperately. It's taken me a "long" time and the people on this site to get survive this. Please just keep sharing and it will help you heal. Deborah Link to comment Share on other sites More sharing options...
JeanneC Posted March 10, 2009 Report Share Posted March 10, 2009 David's Girl:I can't believe that after this short time, people are actually saying that you will fall in love again. To they totally not get it. That is definitely not what you want to hear. I am sorry that you lost your husband and that you went through this. I know that when it comes to the organs and if they fail, it is just very hard to deal with. My husband had a bad heart and eventually died of sepsis. It just happens so fast. There is no time to even think. One minute they are OK and then it just hits you and they are gone.I hope that you will get through this and we are all here for you.Love,Jeanne Link to comment Share on other sites More sharing options...
fred Posted March 11, 2009 Report Share Posted March 11, 2009 Phyllis, I did not see your post yesterday, I do not check in here as often as I used to. Not long ago, I needed to be here almost every day; now I sometimes need to stay away for a day or two. Unfortunately, I miss things that I should comment on that way, but perhaps it is all part of the journey, part of the healing process. You worried about breaking down at work. I just wanted to assure you that it will happen, and it is perfectly okay. Others will need to understand that you are not going to heal right away. You cannot just put this part of your life aside and go on like it is no big deal. You have lost more than many people will ever have and there is not any way that most of them will ever understand. Unfortunately, you have to live through this loss to have any clue about what it can be like. People will say all kinds of horrible things and you will have to decide whether you love that person enough to set them straight, or just let it go. But don´t try to force yourself ahead, it doesn´t work and will only make things harder. Be good to yourself. (((Hugs))) and Prayers Link to comment Share on other sites More sharing options...
WendyJ Posted March 11, 2009 Report Share Posted March 11, 2009 Phyllis, First let me give you a (((HUG))) and tell you I am so sorry for the loss of your husband. I am usually the first one to tell people not to take it to heart when people say stupid things to a widow/widower as they usually mean well but have never been in our shoes and do not know what to say but know they should say something. Many of us were probably one of those people in the past hoping to say the right thing and really caring but saying something stupid and not even realize it. But I have no defense for someone who says to snap out of it, I would like to snap them out of it ! Please for now, take each day at a time, do not look ahead yet, heck I am in my third year now and I can't even think ahead and am still taking one day at a time. I have had a rough couple years experiencing a few losses and I have to tell you I almost gave up a couple times. You are going to be fine one minute and crying the next, you will even have a couple days in the near future where you will think you are doing pretty good and then the next you are a mess. Yes you will cry in public, you will cry at work and you will have to pull your car off the road even at times. All I can tell you for now is to keep coming here and spill your guts as you will not say anything or be feeling anything that we haven't and we will be here to pull you through every step of the way. Love always,Wendy Link to comment Share on other sites More sharing options...
ForgottenJuliet Posted March 14, 2009 Report Share Posted March 14, 2009 Reading your story made me cry. I am so sorry for your loss. I only spent four short years with the love of my life before he was taken from me by a man with a gun. Its been just over a year now and I cant get through one day without crying. Im only 19 so I get a lot of "you'll feel that love again," "you're still young, you'll find someone else who means as much as he did" and "it will be okay." I had a love with him that most people never get the joy of experiencing. It was love at first sight. I miss him so much and I know if I had spent 31 years with him there would be so much more to miss. Im sorry, Id like to say more but its hard. I still cant talk about it as much as I would like to. I guess thats why Im on here. Your story touched my heart and I just want you to know youre not alone. I hope it gets easier for you. <3 Link to comment Share on other sites More sharing options...
David'sGirlStill Posted March 15, 2009 Author Report Share Posted March 15, 2009 Thank you all for your comforting and kind words. Well I made it through 4 days at work. This is beyond hard. I still can't believe he is really gone. I know I watched him leave this earth, lived through a funeral but I STILL can't believe he won't come home. Thank you all Link to comment Share on other sites More sharing options...
kayc Posted March 15, 2009 Report Share Posted March 15, 2009 Juliet,I'm sorry you are going through this...a lot of people think they're saying something to comfort you and don't realize by doing so, they are invalidating your feelings. It doesn't matter if one is 19 or 90, love and loss is the same. I'm so sorry you lost the love of your life. We are here to help you get through this, please come on line here any time and let your feelings out, it all helps.(((hugs)))Kay Link to comment Share on other sites More sharing options...
Boo Mayhew Posted March 18, 2009 Report Share Posted March 18, 2009 Dear DavidsGirlStillFirstly, I am so sorry to hear about your loss - and I have to say that I was furious when I read that people had told you to snap out of it and that you would meet someone else. I also wish that work would be more supportive of you and let you have a longer compassionate leave.I returned to work after a month and then two weeks later it really hit me - the full ramifications of what it really meant, so then I was off for a further 3 weeks and have just returned to work today. What all of us on this board are doing is the hardest thing that any of us will ever have to do and I don't think anyone has the right to tell you how to feel. ONE DAY AT A TIME ... in the very beginning it was five minutes at a time. My counsellor tells me that this process will probably take me 3 years to work through, and that you learn to live with it rather than "get over it".Here is a quote from one of my oldest and dearest friends and I hope it helps you because she is describing how she feels today after losing her two year old son in 2000. It gives me hope because I know that presently I just want lie down and die so I can be back with my husband:"I didn't know I could feel such levels of emotion, that my heart was that big, that devastation could be so expansive and complete.... over time, that huge vast bottomless hole just fills up with love and then the feeling is almost sublime....but it takes a good long while and oceans of tears to get to that point..."Please try to eat and sleep and keep posting here because I do know that it's helped me and I lost my husband on January 6th this year.BooThank you all for your comforting and kind words. Well I made it through 4 days at work. This is beyond hard. I still can't believe he is really gone. I know I watched him leave this earth, lived through a funeral but I STILL can't believe he won't come home. Thank you all Link to comment Share on other sites More sharing options...
AnnC Posted March 18, 2009 Report Share Posted March 18, 2009 I'm so sorry to hear of your husband's passing. Three weeks is so short a time, you've hardly even realized your loss yet. My ex-husband, who was still a dear friend, also died of liver disease. He had a mutated form of Hep B, which does not go to cirrhosis as often, but when it does it's aggressive and difficult to treat. He had 19 months after his initial collapse. He had ascites too, and lapsed into coma, but always kept fighting and working towards the transplant. They finally reassessed him for the transplant list in May 2004, and he was put at the top of the list and a liver became available. Everyone was so excited, and he was transferred to the hospital with the transplant unit. But he had a staph infection, so they were stabilizing him. The transplant team was standing by, the liver was ready. And then his kidneys failed, and they took him off the list. He had left a DNR should he not get the transplant and his wishes were followed, and he died June 23, 2004. So it is going on five years.Even though we were divorced, I loved him so much I also wanted to follow him. I couldn't believe he had gone somewhere that I couldn't follow him. Over time, much time, that feeling faded, and although I still miss him and always will, I slowly became reinvested in life. Much as I wanted to be with him, I knew I would put those who love me through this same kind of hell if I hurt myself, so I didn't. I know he will wait for me until it's my time to follow him.As far as a timetable, I cried for two years. Then the third year I cried every other day. It's true you never get over it, but you do incorporate the loss into your life, and it is part of your story. It gives you compassion for the grief of others -- if you let it. I have also had friends say the most unfeeling things -- my mother in fact was the worst. But I know it's not said to hurt me -- it's in ignorance of what you're really going through. People just don't know what to say, and they're trying to make you feel better. As a psychologist I work with says, that's not what you need. What you need is someone to walk beside you on this most difficult of journeys. And we on this list can do that. We know how it feels. Ann Link to comment Share on other sites More sharing options...
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