mrspapajohn

My dear Boo - - I have just finished reading your blog and I've had to wait for my eyes to clear before writing this. My husband also died in the wee hours of January 6 and I feel that you and I were sharing some of the same emotions and pain at the same time. I, too, held my husband's hand until he died. Unlike you, I was lucky enough to be able to bring my husband home from the hospital and allow him to die in his own bed with me lying beside him, holding him. Please, please continue your blog. It will be of great help to others like us. I have not prayed since my husband died, but tonight I am praying for you and thanking God that he has brought you to all of us. Kathy

Hi Boo - - I am back in Phoenix and just getting through the days minute-by-minute. My brother-in-law is still looking at housaes in Ft. Worth for me, but I really don't think I'll end up there. Next Tuesday a real estate agent is going to show me some houses right here in Phoenix. Unfortunately, I can't work. I sometimes long for work or something to do just to keep my mind from wandering back to Stephen. I had quintuple cardiac bypass surgery and am not even supposed to lift anything over 8 pounds. The doctor keeps telling me to avoid stress (right!). I can't see out of my left eye and my vision is poor in my right eye, so it's difficult for me to read. I spend most of my day watching CNN and oh, I dread the nights. I have finally come to the conclusion that I am going to be alone no matter where I go, so I might as well move to the most convenient location that I can afford. I know that you are all correct when you say it is too soon to make a big move (2 months on March 6). Just the thought of moving myself, my furniture and belongings (most with deeply held beloved memories) and my two cats across the country seems daunting. It will be hard, but I think I'll be able to handle a move across the city. Thank you and every one who so kindly reads and answers my posts.

I want to start a list of the couples here...I could name many of them but don't want to leave anyone out, so please add your name and the name of the spouse you lost...I want to pray for each of you in this new year. Kay and George Erica and Walter Scott and Kate Tom and Mary Linda Janet and Mike Corinne and Jimmy Jeanne and Alex Derek and Karen Rosemary and Lou Bob and Janet Jean and Walter Bob and Mel Teny and Yiany Mark and Julie Betsy and Carl Harry & Sherry Wendy and Steve Jack and John Karen and Jack Jan and Dale Joe and Marsha Larry and Deborah Kathy and Bob Bruce and Gail Pat and Walter (((Jackie ))) and Fred Charlie and Patti Phyllis and David Lawrence and Jackie Paula and Ken Rob and Cindy Alejandra and Ricaard Kim And Dan Kathy and Stephen

David's Girl - - - I lost my love, my husband, my life, a little over two months ago and I still cry every day - - several times a day in fact. It was just last week that I could bring myself to talk to some one. I even dreaded going to the supermarket because I did not want to speak with the cashier. My heart breaks for you and for all the rest of us that are going through this terrible part of our lives. On my first anniversary without Stephen, I flew to Ft. Worth to spend it with him. Like you, I just wanted to lay beside him and stay there. I cried so much I could hardly find my way to my hotel. I can't give you any words that will make you feel better, because I don't believe there are any. Just please keep coming back to this site. The people here become closer than your family because they have all gone through (and mostly are still going through) this raw, black hole of pain. They let you know that you are not alone and that you are not crazy. Life may go on for most people, but right now, not for us. Maybe someday.

Jackie - - I have not comunicated with you before, but I am so sorry that you have to go through this awful pain. I sincerely pray that next year will be easier than the the last and the next year even easier. You will be in my prayers. Kathy

Teny - - I am a fairly new member of this very sad, but very caring community. My husband of 28 years passed away just over two months ago. I, too, am concerned about the coming month. Not because I have as much going on as you, but, like you, I fear the holiday rituals. My husband was a very religeous man and he loved the Easter season. I'm afraid that I always found it sad, even before his death. I will try to concentrate on the positive side of Easter, though that will be difficult. Congratulations on being able to sleep without a pill. I'm waiting for that day to come, but I believe it is far in the future. I will be thinking about you over the holidays. I sincerely hope that you come through them o.k. Kathy

Boo, and eveyone who was kind enough to respond to my posting - - Thank you so much for your concern. I still cannot believe the openheartedness of people on this site after all they have gone through (and are still going through) themselves. I flew to Ft. Worth on Saturday morning (3/14), rented a car at DFW Airport and promptly got lost. I ended up at the wrong cemetary in Ft. Worth. By the time I found the correct cemetary and my dear husband's grave, it was getting dusk and getting very cold. Still, I stayed and talked to him for two hours. I told hime everything that had happened since he left, how much I and our kitties missed him. I told him things his family was doing and even who was wearing his clothes. I wished that I could just lay beside him and stay there forever. Naturally, the tears flowed. It was a wonder that I could see through my contact lenses to drive back to my hotel. I stayed in Ft. Worth for two days and looked at homes there. My brother-in-law was very kind and very helpful and came with me to every home I looked at. Unfortunately, we didn't see anything that I could live in that I could afford (I don't have much to work with). I was disappointed, because I wanted to be near Stephen, but although I got a lot of comfort at being able to see where he was laid to rest, and the feeling that I was actually talking to him, seeing where he grew up, where he laughed and played and hung around with people he loved and who loved him, it all made me sad, because I know he can never see, feel or touch these beloved things and people again. I don't believe that I will be able to live there permanently. Of course, since I find it so difficult to hide any of my feelings, I cried in front of my brother-in-law. I know that made him uncomfortable. He just didn't know what to say. Although he loved his brother, he has gotten on with his own life, as has the rest of Stephen's family. I have not yet been able to get on with my life, and I know I would just drag them down. Although, at first, I think I would hear from them often, eventually, the calls and visits would slow down and then finally stop altogether. Now I am back in Phoenix and back to ground zero. I just do not know where to go. But as for this trip, bottom line, I would go to see him all over again in a heartbeat, no matter what the cost. It has only been a little over two months since I lost him, and I still cry several times a day, every day. But, the feeling that he was there in FT. Worth, somewhere near me, and that I was doing what we had planned to do together (return to Ft. Worth) was worth the ripping, raw pain that I felt. I plan to return on my birthday in June and again on his birthday in August. Boo - - I think it is wonderful for you to do something with your husband's ashes that will be reminiscent of something he loved. I wish you the very, very best.

Notcoping - - I promised that I would let you know when I went to visit my husband on our anniversary. I flew to Ft. Worth on Saturday morning (3/14), rented a car at DFW Airport and promptly got lost. I ended up at the wrongcemetary in Ft. Worth. By the time I found the correct cemetary and my dear husband's grave, it was getting dusk and getting very cold. Still, I stayed and talked to him for two hours. I told hime everything that had happened since he left, how much I and our kitties missed him. I told him things his family was doing and even who was wearing his clothes. I wished that I could just lay beside him and stay there forever. Naturally, the tears flowed. It was a wonder that I could see through my contact lenses to drive back to my hotel. I stayed in Ft. Worth for two days and looked at homes there. My brother-in-law was very kind and very helpful and came with me to every home I looked at. Unfortunately, we didn't see anything that I could live in that I could afford (I don't have much to work with). I was disappointed, because I wanted to be near Stephen, but although I got a lot of comfort at being able to see where he was laid to rest, and the feeling that I was actually talking to him, seeing where he grew up, where he laughed and played and hung around with people he loved and who loved him, made me sad, because I know he can never see, feel or touch these beloved things and people again. I don't believe that I will be able to live there permanently. Of course, since I find it so difficult to hide any of my feelings, I cried in front of my brother-in-law. I know that made him uncomfortable. He just didn't know what to say. Although he loved his brother, he has gotten on with his life, as has the rest of Stephen's family. I have not yet been able to get on with my life, and I know I would just drag them down. Although, ay first, I think I would hear from them often, eventually, the calls and visits would slow down and then finally stop altogether. Bottom line, I would go to see him all over again in a heartbeat, no matter what the cost. It has only been a little over two months since I lost him, and I still cry several times a day, every day. But, the feeling that he was there in FT. Worth, somewhere near me, and that I was doing what we had planned to do together (return to Ft. Worth) was worth the ripping, raw pain that I felt. I plan to return on my birthday in June and agaon on his birthday in August. I know that every one is different, and believe me, I never realized a human being could feel pain like this and continue to breathe themselves, but if you could get the comfort I got in Ft. Worth, then it would be worth the trip to New Mexico. Just be ready for the rawness of emotions, but also the overpowering feeling of love. MY thoughts and prayers go with you. Be strong and remember that love never, ever goes away. Your husband will always be with you in your heart. And it must make him feel terrible to see you so sad. Please let us know what you do, and if you go to New Mexico, what happened. Kathy

Stephen's and my 28th wedding anniversary is this Saturday, March 14. My love has been gone for a little over two months and I still cry several times each day. I just can't stop thinking about him and picturing the look on his beautiful face when he died. I am traveling to his grave from Phoenix to Ft. Worth on our anniversary and I know already that I will be a basket case that day. I need to speak with him though and to have some contact that day. I have no family or friends in Phoenix. Stephen was very ill and housebound for the last four uears, so our social life was non-existent. Now, I cannot afford where we live and have to move out pretty soon. My problem is that I don't know where to go or what to do. I plan to look at reisdences in Ft. Worth because that is where his family is from. I don't relish the thought of living in Ft. Worth, but at least that is where Stephen is and I could at least visit his grave more often. I have really no family of my own except for two aunts that are both over 88, live in Boston and have enough problems of their own. I miss Stephen so, I would just like to go with him. I feel that there is nothing left for me in this life. Out of the blue, I find myself sobbing and praying for his return, which I know will ever come. Still, it is still not possible for me to picture life without him. I know it is selfish, but I know that no one will ever love me the way he did - no matter what I did or how I looked. I think his greatest joy was making me laugh. I have already donated Stephen's clothes, but I don't know how I am going to pack up this house and move me and my two cats across the country, but there is nothing for me here but sad memories. Does anyone have any suggestions. I really have no one to ask. This site has been my salvation. Kathy

Kath - - That poem is just beautiful. It really touched my heart and made me cry. To every one reaching an anniversary of any kind that is a day of remembrance, you are all in my prayers. Thank you so much for being there. Mrspapajohn

Kay - I am so sorry that you have to give up where you have memories of your husband. I, too, had my income cut in half when Stephen died and I am looking for something that I can afford. Friends have told me that no matter where I go, Stephen will always be in my heart and that is what is important. I believe that and I hope that you believe it too. I will be thinking and praying for you. Kathy

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

Next Saturday, March 14, would have been Stephen's and my 28th anniversary. Since I live in Arizona and Stephen is buried in his hometown (Ft. Worth), I plan to fly in just for the day so that we can spend our anniversary together. I do not plan to tell his family that I am even coming in. They have gone on with their own lives already and I am still greaving as if Stephen died yesterday (actually it has been two months today). I talk to my two cats also, but it seems that other than people who have lost their loves, like the ones who are on this site, are the only ones that truly understand what you and I, and others like us, are going through. Please take care and remember, you are not alone.

Larrysgirl - - Thank you for your reply. Today is two months to the day Stephen died. Actually, he died at 12:45 A.M. and I stayed up until that time last night. You're correct when you say how terrible liver disease is. My mother died from the same thing four years ago and I'm still not over losing her. She was deemed too old to be put on a transplant list. She was very brave also. Stephen took care of her the last two years of her life. It seems ironic that he died of the same thing even after a transplant. I can't believe how much I miss them both.

Teny - - I am so sorry that you are hurting again. My husband of 28 years died on January 6 this year. His extended family lives in Greece and we were planning to go there this summer. This forum has helped me the most and hopefully it will help you too. Take care and take heart. Kathy

larrysgirl - - Thank you so much for your reply. It helped me a lot. Please accept my deepest sympathy on the loss of your husband. After all that suffering and waiting, I can't imagine the disappointment. My husband was listed in Phoenix for four years. After the first two years, I took him to Jacksonville, FL in hopes of having a better chance at getting a liver for him. After retaking all the tests to get listed, which took over a month, the committee told us that Stephen would have a better chance in Phoenix. So, we came back. In April 2008, they discovered a lesion on Stephen's liver that was cancerous. That moved him up on the list. If he didn't get the liver when he did (June 2008), he would have had only days left to live. If only more people would be organ donors. It is such a discouraging and frustrating system. Unfortunately, Stephen's recurrance of Hepatitis after the transplant made him ineligible for a retransplant. I know many people who took their loved ones to other facilities trying and hoping against hope that a donor would be forthcoming. Some were successful. Some were not. It is love that makes us try everything and anything. I believe that you did the right thing. It is just a fact that there are not enough organs for those that need them. I tell every one who will listen to me how important being an organ donor is. Thank you again for your reply. It really has made me feel better. I hope that your pain has eased a little. You will be in my prayers. Kathy

Boo - - Thank you so much for the Nova piece. I recognize so much in the article that I am feeling and experiencing.

Fred - - - I'm sorry tht I don't know the history of your grief, but thank you for the words of encouragement. Every little iota of support and understanding helps. Kathy

Boo - - I am so sorry about your loss. I, too, lost my husband of 28 years on January 6. He was only 56. Like you and your husband, we loved each other's company and because of his long illness, have few friends in the area. I brought my husband from Phoenix back to his home town, Ft. Worth, to be buried next to his father and to be near his big family and many friends. Our 28th anniversary would have been March 14. I plan to fly to Ft. Worth on that day, just for the day, to spend our anniversary at my husband's grave and to speak with him. Like you, I have never felt such pain. They say it will get better. I certainly hope so for both your sake and mine, because there is no joy in this life with pain this raw. Please keep posting and let me know how you are doing. Kathy

KayC and Dusky - Thank you so much for your replies. Your kind understanding is very comforting. Dusky, please acceept my sincere sympathy on the loss of your mate. Kayc, also please accept my sympathy about your husband. I had undiagnosed heart disease also, and ended up having a quintuple bypass, but being very lucky I survived. My husband nursed me through my recovery only to become ill himself. Thank you again for your very kind replies. Kathy

EM - - I believe that we have our loved ones in our heart. We can see them there for as long as we are here ourselves. I talk to my husband all the time. I don't believe that we have to wait until we die ourselves to see them again.

Last June 13, after a four years on the wait list for liver transplant, my husband of 28 years received a new liver. He had endured four years of paracenthesis (fluid removal) endless endoscopies because of bleeding fro his esophogis, weekly blood transfusions, and numerous hospitalizations due to high ammonia (sometimes he didn't even recognize me). He never complained although his suffering was great. He was literally house-bound for four years. He had to take a medecine called "Lactolose" every two hours. Because his liver ws not filtering out ammonia from his blood, this medecine acted as a laxative and he passed much of the ammonia through his stool. He needed so much that he was actually incontinent for the last two years. This was torture for him as he was so fastidious. The cause of his liver disease was Hepatitis c, which the doctors believe he may have gotten from a blood transfusion thirty years ago. When he received his new liver, it was as if our life started all over again. He felt as well as he did the day we married. In fact, we were like newlyweds. I never knew I could be so happy as we planned our future. He resumed driving, taking walks with me, going out to eat and to the movies and doing just about everything we had missed doing during the previous four years. After the transplant, normal follow-up treatment for the first three months was to return to be seen by a hepatologist twice a week. He was given immune suppressants to prevent rejection and the dose had to be closely monitored. After he had been home for three weeks, he was schedued to have the staples removed from his incision. When he went to the doctor on one of his regular twice-weekly visits, he was told that his staples should stay in longer, maybe up to a month. He had a very large incision and the immune suppressants slowed the lealing process. Still, he felt fine. On his next visit, two days later, another Hepatologist said to him, "Let's get those staples out. You'll be more comfortable." My husband told the doctor that his collegue, just two days before, had told him that they should remain in another month. Steve looked at me and said, "What should I do?" God help me, I said, "The doctor knows best. If he says you'll be more comfortable you should have them out." The doctor proceeded to remove the staples. Before we had even left the building, Steve's incision opened and his stomach came out. He ws rushed back into surgery where they repaired the damage and re-stitched him. He was in the hospital only overnight. Still, he didn't complain. He was so grateful for his new liver that anything the doctors did to him was o.k. with him. On his next regular visit, his blood test showed that his new incision was infected. The immune suppressants made him very vulnerable to infection. The doctors lowered the immune suppressants and prescribed an anti-biotic. Stephen still felt fine. BY the time he finally had his staples out for real, they found that the anti-biotic and lowered mmune suppressants has caused slight liver rejection. The stopped the anti-biotic and reopened a hole in the incision and had me pack the hole hole with sterile gauze and coveit three times a day to prevent infection. It worked. The infection cleared up. To preventrejection of the liver caused by the anti-biotic, they increased Steve's immune suppressants significantly. By Thanksgiving, his wound was healing nicely, but he thought he was getting a cold. Because he could not take anything, not even an aspirin without doctor's approval, we returned to the doctor. The doctor said that he didn't think Steve had a cold and he ordered a liver biopsie. IT turns out that Steve's immune system had been so lowered, his Hepatitis C had returned. Except this time, it was the most virulent and deadly form of the disease possible, called fibrosing cholastic Hepatitis . or FCH. His liver had already been damaged. The doctor put him immediately on Interferon therapy, which is no walk in the park. The week before Christmas, after three weeks of Interferon therapy, Stephen had trouble staying awake. I rushed him to the emergency room where we found out that the Interferon had damaged his kidneys. He had acidocious. The doctors got his kidneys restarted and lowered the dosage of Interferon. ON New Years Eve, Stephen started to turn yellow. I panicked and told him we had to go to the emergency room. He begged me not to take him. He said that if he didn't feel better by morning, we could go then. He asked me to put on our favorite CD, The Flamingo's, and we slow danced at midnight. The next morning, January 1, Steve looked like a jar of mustard. By the time I got dressed to go to the hospital, he could not even dress himself. I dressed him and got him into the car. By the time I got him to the emergency room, it took three men to get him out of the car and onto a gurney. His kidneys had failed again and his liver was also failing. That evening, the doctor came into Stephen's room (by now, Stephen was in and out of consciousness) and told me not to worry. He said that Stephen was young and strong, they would restart his kidneys, put him back on a manageable dose of Interferon and they would be able to manage (not cure) his Hepatitis. He then ordered an MRI. When he came back with the results of the MRI the next day, January 2, the doctor told me there was nothing more they could do. Stephen's liver had completely failed, they could not restart his kidneys and now he had a spot on his lung. The doctor called in Hospice and I took him home and put him in his own bed. I asked him if he was comfortable and he smiled up at me and said, "Yes, I'm fine. Don't worry. I'm getting better." These were the last words I ever heard him say. I never got to tell him how much I love him. His sister and his son from his first marriage flew in that night, but I don't think he ever knew they were there. That first night home, Stephen had some awareness because he held my hand tight all night. But by the next morning, January 3, he was in a deep coma. His breathing was very labored. In fact he gasped and fought for every breath. I laid beside him all night but didn't sleep myself. I kept talking to him, but I don't think he heard me. The next morning, January 4, things got worse. Stephen was still gasping for breath, but now his espophagus was bleeding and his mouth kept filling with blood. For the next 24 hours, his sister and I took turns keeping his mouth clear so hat the blood wouldn't drown him. On January 5, the bleeding stopped. His son sat and held his hand most of the day while his sister and I took turns lying beside him, patting him and telling him how much we loved him. At 11:00 P.M. I made his sister and son go to ed. They were exhausted. I told hem that if anything happened, I would come get them. I turned out the bedroom light, lay down beside Stephen and held him as I listened to him fight for every breath. At 12:45 A.M. the sound of his gasping for air stopped. I turned on the light and looked into his face. He was gone. I kissed him, got a cloth and cleaned him up, and then went to get his sister and son. I started to cry and I believe I've been crying pretty steadily ever since. Stephen was only 56. I brought Stephen back to Ft. Worth where his large family is, and buried him beside his father. March 14 would have been our 28th anniversary and I plan to fly to Ft. Worth for the day to spend it with Stephen. I miss him so. What I can't get out of my mind is Stephen's question to me last July, "Should I let him take the staples out?" and my answer, "Yes." I can't help but ask myself that if I had said, "Wait," (my gut had told me wait, but I didn't listen), would I still have my beloved husband? The pain is unbearable because I don't know the answer. Has any one else experienced anything like this? I haven't even heard from his doctors, so there is no one I can ask. And of course, I can't ask my dearest love, because he is gone forever.

Notcoping -- Please accept my sincerest sympathy. I lost Stephen, who was my life, two months ago. March 14 would have been our 28th anniversary. I live in Arizona (at least temporarily) and I brought Stephen to Ft. Worth Texas to be buried next to his father and to be near his large family. On our anniversary, I plan to fly to Ft. Worth for the day just to be able to talk to him. I am hoping to get some comfort from this, but just going to the supermarket has taken extraordinary strength for me, so I really don't know whether this will bring more comfort or more pain (impossible to believe that there could be more pain). I will let you know how I make out so you may have some idea of what to expect. I know it doesn't seem fair to have to worry about finances, but I believe that most of us has lost at least half of the income they had before losing their loved one. I know that up until now, it was something that I couldn't even think about. All I could think about was my loss. Unfortunately, since I can no longer afford to live in the home I shared with my husband, I, too, will have to move. It may help to have a goal, I'm not sure. Please let us know how you make out.

Mossfire - - I lost my husband of 28 years two months ago and it feels like two days ago. It seems that other people, both friends and relatives, have either disappeared or they ignore the fact that Steve has died. I feel alone even when I'm speaking with them. Believe me, you are not the only one alone. I have flashbacks to the minute of his passing, much like PTSD and start crying. I think that it's probably a good thing that I am alone when that happens. I have not tried the bereavement support group, but after reading your entry, along with the answers from others who have gone through what we are going through, I believe that I will try it. I will be thinking about you and pray that you will find relief from this terrible pain.