Was I Part Of The Cause Of My Husband's Death?

[mrspapajohn]

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.

[Dusky]

Mrspapajohn,

The answer to your question is no – you were not in any way the cause of your husbands death or any of the suffering which accompanied his illness. I do however know all about these lingering feelings of guilt because of actions we take during the course of their illness.

The bottom line is that we do the best we can given the circumstances we are faced with at that moment in time. I know all too well what I am speaking of, having made one decision during my Jacks illness, which I feared may have lead to a stroke and total blindness following his initial surgery for brain cancer. It was difficult, especially in the months and years after Jack’s death, to forgive myself. Finally, I realized that Jack would have been the first in line to forgive me. We have such a difficult time as human beings forgiving ourselves. The reality is that we do not need forgiveness – but we feel as if we do. We did the best we could under the direst of circumstances. The other reality is that our loved one would be the first to give us forgiveness regardless of the validity of its need. It is our feeling that we need to be forgiven that haunts us.

It took me years to finally come to the realization that I did the best under a most difficult situation – and – that my mate would be the first to absolve me of any self-inflicted guilt I had. It was the self-forgiveness that was the most difficult.

I tell my story in the book I wrote following Jack’s death. The story I told about my journey through mourning helped me heal. One of the reasons I wrote it was to help others who have traveled trough the similar loss of a mate to also heal. Please let me help you.

I don’t often recommend that someone buy my book, however, in this instance it may be worth your time and effect to do so. If nothing else, visit my web site (listed below) as it may help you through this difficult time. It always helps to know that there have been others that faced similar circumstances and how they wrestled with these emotions after losing a mate.

My web site and information regarding my book follows.

[kayc]

No, in no way, shape or form did you cause your husband's death or suffering. We trust doctors to know best because they are the ones with the education and training and we rely on their knowledge. I've often felt I should have pushed for my husband to see a Cardiologist and maybe he'd be alive today, but I didn't know he had heart trouble, and I trusted that the doctor he was seeing knew what he was doing. We don't know any more than our spouses knew. In my opinion, your husband was a saint and so are you. What you both went through! Please try your best to put any such thoughts to rest, your husband wouldn't want you to be tormented with such thinking, you did your best and that's all any of us can do.

[mrspapajohn]

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

[dpodesta]

There is no way that anything you did could have been the cause, you were going by what an expert (The doctor) told you or advised you. I had a question about my actions as well when Karen died. The night before we were to leave on vacation she felt a tingleing in her left arm. I used to to be an ECA and ride the ambulance so I knew the signs of a heart attack, but I also knew that Karen would get so nervous before a trip that she would make herself sick. We discussed it and decided to go to bed. THe next morning she felt fine and we left for the airport. When we arrived at the hotel on the bus, she went to get up and colasped. She had a major heart attack and there was nothing that they could do. I did something however to help myself and asked a nurse, that if I had taken her to the hospital the night before, would she still be here? The nurse told me that the severity of the heart attack would have ended with the same results. Even if she had been in the hospital, there wouldn't have been anything they could have done, the only difference is that she died doing something she loved to do and that was traveling with me and my son and some friends to Disney World instead of dying in the hospital. March 18th would have been our 14th anniversary so I know the difficulties that are coming up for you. I hope your trip here to Ft. Worth is as pleasant as it can be considering the circumstances. I know this is easier said than done, but don't think about the what if's, or the descisions made during that time you were only going by the advise that professionals were giving you. He could have developed the infection from the staples remaining in and you would have still had the same result. I pray that yo will find some peace in this.

Love always

Derek

[marsha]

mrspapajohn- I am so sorry for the loss of your Stephen. I agree with the rest of the folks who posted. When things have to be decided, like "right now" (per the doctors), you make a decision, one that you feel that's best, because they're the experts, right? For us, Joe's cancer spread so fast, our heads were spinning. I had friends tell me, get a second opinion, but he was going down so fast. I really don't think anything you did, or didn't do, would have changed the outcome. Personally? I've come to the conclusion that doctors don't really know what to do half the time, except react to the situation. Joe was getting heavy IV antibiotics for a staph infection; he developed a bad cough, we went to see his oncologist who said, "use some Musinex". He had fungal pneumonia, and that's what actually killed him, a week later. I could tell by the oncologist's demeaner that he had given up on Joe. Screw him! I'm sorry to get off topic, but this opened up a lot of anger, because Joe was in so much pain. I remember feeling, just help him! But, ultimately, it was in G-d's hands. Peace, Marsha

[Boo Mayhew]

Hi Kathy

I've just read your post and my heart broke for you. Please do not carry this guilt with you. On no account is this your fault - you could only follow the medic's suggestion and you have not done anything wrong at all. I am pasting below something that you may find useful - I hope that you will recognize that guilt is a common sympton of grief. I personally found the contents of this incredibly helpful as I wondered if I was behaving or feeling "normally" until I read it. An old schoolfriend sent it to me and she said it is from "NOVA". Sending you strength across the miles, Boo

Stress and Trauma

Your Day-to-Day Life

Individuals exist in a normal state of "equilibrium" or balance. That emotional balance involves everyday stress, both positive and negative - like being late to work, getting a promotion, having a flat tire, getting ready for a date, or putting the children to bed.

Occasionally, stress will be severe enough to move an individual out of his or her normal state of equilibrium, and into a state of depression or anxiety, as examples.

But most people most of the time stay in a familiar range of equilibrium.

When Trauma Occurs

Trauma throws people so far out of their range of equilibrium that it is difficult for them to restore a sense of balance in life. Both "acute" and "chronic" trauma may be precipitated by stress:

1. Acute stress is usually caused by a sudden, arbitrary, often random event.

2. Chronic stress is one that occurs over and over again - each time pushing the individual

toward the edge of his state of equilibrium, or beyond.

Trauma can come from acute, unexpected stressors such as violent crime, natural disasters, accidents or acts of war. But it can also be caused by quite predictable stressors such as the chronic abuse of a child, spouse or elder.

The Crisis Reaction

The normal human response to trauma follows a similar pattern called the crisis reaction. It

occurs in all of us.

Physical Response

The physical response to trauma is based on our animal instincts. It includes:

1. Physical shock, disorientation, immobilization and numbness: "Frozen Fright."

2. "Fight-or-Flight" reaction (when the body begins to mobilize):

• Adrenaline begins to pump through the body: heart beat increases, perspiration starts, hyperventilation and hyper-alertness

• Increased sensory perception

3. Exhaustion: physical arousal associated with fight-or-flight cannot be prolonged

indefinitely. Eventually, it will result in exhaustion.

Emotional Reaction

Our emotional reactions are heightened by our physical responses.

1. Shock, disbelief, denial accompanies by regression

2. Cataclysm of emotions

• anger, rage or outrage

• fear, terror or horror

• confusion and frustration

• guilt or self-blame

• shame and humiliation

• grief and sorrow

3. Reconstruction of equilibrium - emotional roller-coaster that eventually becomes balanced,

but never goes back to what it was before the crisis - a new sense of equilibrium will be

developed

Trauma and Loss

Trauma is accompanied by a multitude of losses:

1. Loss of control over one's life

2. Loss of faith in one's God or other people

3. Loss of a sense of fairness or justice

4. Loss of personally-significant property, self or loved ones

5. Loss of a sense of immortality and invulnerability

6. Loss of future

Because of the losses, trauma response involves grief and bereavement. One can grieve over

the loss of loved things as well as loved people.

Trauma and Regression

Trauma is often accompanied by regression - mentally and physically.

1. Individuals may do things that seem childish later. Examples include:

• Singing nursery rhymes

• Assuming a fetal position or crawling instead of walking

• Calling a law enforcement officer or other authority figure "mommy" or "daddy" – or at least thinking of them that way

•

2. Individuals may feel childish. Examples include:

• Feeling "little"

• Wanting "mommy" or "daddy" to come and take care of you

• Feeling "weak"

• Feeling like you did when you were a child and something went terribly wrong

Recovery from Immediate Trauma

Many people live through a trauma and are able to reconstruct their lives without outside

help. Most people find some type of benign outside intervention useful in dealing with

trauma.

Recovery from immediate trauma is often affected by:

1. Severity of crisis reaction

2. Ability to understand what happened

3. Stability of victim's/survivor's equilibrium after event

4. Supportive environment

5. Validation of experience

Reconstruction issues for survivors include:

1. Getting control of the event in the victim's/survivor's mind

2. Working out an understanding of the event and, as needed, a redefinition of values

3. Re-establishing a new equilibrium/life

4. Re-establishing trust

5. Re-establishing a future

6. Re-establishing meaning

Long-Term Crisis Reactions

Not all victims/survivors suffer from long-term stress reactions. Many victims continue to re-experience crisis reactions over long periods of time. Such crisis reactions are normally in

response to "trigger events" that remind the victim of the trauma. "Trigger events" will vary

with different victims/survivors, but may include:

• Sensing (seeing, hearing, touching, smelling, tasting) something similar to something

that one was acutely aware of during the trauma

• "Remembrance dates" of the event

• Holidays or significant "life events"

• News reports about a similar event

• When recounting one’s story (e.g. to a therapist, social worker or judge)

Long-term stress or crisis reactions may be made better or worse by the actions of others.

When such reactions are sensed to be negative (whether or not they were intentional), the

actions of others are called the "second assault" and the feelings are often described as a

"second injury." Sources of the second assault may include:

• the criminal or civil justice system

• the media

• family, friends, acquaintances

• health and mental health professionals

• social service workers

• clergy

The intensity of long-term stress reactions usually decreases over time, as does the frequency

of the re-experienced crisis. However, the effects of a catastrophic trauma cannot be "cured."

Even survivors of trauma who reconstruct new lives and who have achieved a degree of

normality and happiness in their lives - and who can honestly say they prefer the new,

"sadder-but-wiser" person they have become - will find that new life events will trigger the

memories and reactions to the trauma in the future.

Long-Term Traumatic Stress Reaction

When someone survives a catastrophe, they often experience stress reactions for years. Long-term stress reactions are natural responses of people who have survived a traumatic event. Long-term stress reactions are most often a result of imprinted sensory perceptions and

reactions in the brain and body. The most common types of long-term stress reactions

include:

1. Re-experiencing the event both psychologically and with physiological reactivity.

• Intrusive thoughts

• Nightmares and distressing dreams

• Flashbacks

2. Numbing, avoidance, and isolation

• avoidance of thoughts or activities that remind one of the event

• avoidance of previous habits or pleasurable activities that the individual engaged in

before the event

• estrangement and isolation

• reduced affect or feelings of "emotional anesthesia"

• partial amnesia

• a sense of foreshortened future

3. Behavioral arousal

• inability to concentrate

• insomnia or interrupted sleep patterns

• flashes of anger or irritability

• startle reactions or hyper alertness

It is not important to know all the symptoms for the stress reactions mentioned above. If you

become concerned about your reactions or how long they last, it is useful to talk to a mental

health professional who is a specialist in working with people who have experienced

traumatic events.

© 2002 National Organization for Victim Assistance, Washington, D.C., USA.

[mrspapajohn]

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

[LarrysGirl]

When I saw your topic I had to take some time before I could reply. I'm so sorry for the loss of your husband and am glad you have come to this site. I think you will find the people here to be a wonderful source of support.

I lost Larry Nov. 16, 2005. He waited over four years also for a liver transplant. Your description of Stephen's life was exactly Larry's existence for the last few years. The transfusions, amonnia problems and many many hospitalizations. He died waiting for his transplant the day before his 50th birthday. A day I will never forget. We were living for the day he would get his transplant and enjoy our lives together once more, like you said, almost newlyweds again. What you wrote made me cry. He held on, never complaining and enduring one set back after another. He was so brave.

I have struggled with a question similar to yours during my grief. During his illness I researched constantly and found a transplant facility I thought may give him, us, better treatment, more chances of receiving a transplant. To this day, I gone over and over in my head, did I hurt him, did I make a terrible mistake in getting him to go to another facility further from home? Would he have possibly survived if I'd let it go and not pushed harder to get bettter treatment? And yes most of these last three years I've felt responsible in some way for his death.

I know I did the best I could, I loved him more than life and I was trying to save his life. And I know you did the same. You loved your husband, you wanted him to heal and to be able to go on with your lives. I think its normal to have those questions so try to be kind to yourself. This grief journey takes time and healing comes slowly. I hope I have helped you alittle. Deborah

[mrspapajohn]

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 Mayhew]

Kathy, I am glad that you found it useful. I have to say that when I read it, it really helped me because I was wondering if I was reacting normally or not. Fred was right too - we can't expect to "pigeon-hole" ourselves into the NOVA piece perfectly, but it serves as a good guide. You take care of yourself and I shall be thinking of you on March 14th. Love, Boo x

[kayc]

Boo,

Thank you so much for taking the time to share that Nova/Stress article with us. I found it particularly helpful in understanding some of my response to recent events in my life coupled with outside reactions and how they have affected me. It helps to know we're normal, sometimes we aren't so sure!

I have saved this for future reference, it was a very well written concise piece.

Kay

[Boo Mayhew]

Kay, you are more than welcome - I found it incredibly useful as a "sanity-checker" and I'm glad that you found it helpful too. Before I was sent it by a friend (who lost her baby son and found the piece helpful herself) I too wasn't sure if I was reacting to my loss "normally". That said, I don't think that the piece will necessarily have covered all possibilities, because we are all different and therefore react differently. I hope you are having a strong day today. Boo

[kath]

Dear Kathy and Deborah,

Your stories are so similiar to mine that I had to cry for a few days before coming back here. Bob had hepatitis C for many years. The doctors suspected something, but were always "watching" it. He died within two years of being diagnosed, the same day he would have been put on the transplant list. I didn't recognize the warning signs. He was so strong and didn't complain. I went around and around wondering "What if I would have done more, knew more, pushed more, insisted more, asked more..."

Kathy, I could feel your joyous relief at your husband's recovery and then your excrutiating sorrrow at having it stolen from you just as quickly. We always thought the transplant would be the magic answer, the miracle we had prayed for.

I overheard my children talking about their dad tonight. They were telling the story of how he had died, before we knew him, and how he watched the paramedics work on his body. He went to the light, but was told it wasn't time yet. I asked what it was they thought he had yet to do. Why was he sent back? They said it was because he had to have them first. That was when he received the blood transfusion that gave him hepatitis. My children accept that he is in a safe and wonderful place and that we are the reason he came back from heaven the first time. They make it seem so simple.

[LarrysGirl]

Hi Kath, I know what you mean, I had to take some time before I could respond because it hit a nerve with me also. I was going to let Kathy know that we have several people on this site who have lost someone to liver cancer, hepatitis c and transplant problems. I am hoping they will post also and share. Like you, We thought the transplant was the answer and I sat and dreamed of the day. I am so sorry for Kathy having gotten her husband through the transplant and then he still doesn't survive. It has to be so hard. I think of all of us who have be touched by this tragedy of liver disease and how quickly they go. It doesn't seem fair. Deborah

[mrspapajohn]

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.

[David'sGirlStill]

My heart goes out to you. This liver disease is like thief in the night. It now appears that the transplant was not the miracle I thought it would be. You didnt do anything wrong. You loved him with all your heart and listened to the professionals. Why wouldn't you? As hard as it is for me to type this, I do believe God takes us home when he is ready. Regardless of anthing

[Boo Mayhew]

Hi Kathy

how are you? How did the 14th go? Cliff's birthday was the 16th and I have been off work for 3 weeks as it really hit me hard a couple of weeks back.

I hope you are alright and coping (a little bit). I'm going to counselling now and it has really helped me, so you may wish to consider that?

Love

Boo

x

[AnnC]

I also lost my ex-husband, Don, to liver disease. We were very close friends after divorce, and became closer when he became ill. He collapsed on Thanksgiving night 2002, vomiting blood, and the friends he was staying with rushed him to the hospital where they did emergency surgery to put a shunt around his liver. He died and was resuscitated three times in surgery. They did a biopsy and found that he had Hepatitis B which had caused the cirrhosis. He lived for 19 months, but had several comas and was on the Lactulose and Interferon and something else I have forgotten, and had to have a low sodium, low protein, all natural diet.

By May 2004, he was exhausted and still fighting, but frustrated. A friend had offered to be a live liver donor, but it didn't work out -- insurance wouldn't cover it, and the friend realized it was a much bigger risk than he had thought, and his wife didn't want him to take the risk. Don had a rare blood type, so that meant fewer livers would be available. At his last hospitalization and coma in April 2004, they said the shunt was clogged and needed to be cleaned out, no problem. But that didn't work. So they said they would replace it. Again, the cirrhosis had progressed to the portal vein, so that didn't work either. As Don said, Plans A and B didn't work, I need a Plan C and they don't have one. They got him stabilized and released him, saying he would need a reassessment for the placement on the transplant list, but his enzymes looked good. After release he called every day to ask his doctor to do the reassessment. But his doctor kept reassuring Don that there was nothing to worry about, his enzymes looked good and they would get him reassessed, don't worry. Don, though, kept saying, We don't have much time. He knew, on some level, that although his health looked good, he didn't have long.

Then he had another collapse and went to the hospital to have his ascites drained again. While he was there, they reassessed him, and put him at the top of the list, and a liver became available. He was flown to the hospital where they had the transplant unit. But he had a staph infection, so they were trying to stabilize him. The liver was there, the transplant team was ready, and then his kidneys failed. They also said, no problem, they would put him on dialysis to jump start his kidneys. Well, the dialysis did not succeed at that. They said they could not keep him on the list when he also needed a kidney, so the liver was given to someone else. He died June 23, 2004.

No, I do not believe you did anything at all to cause his death. For a long time, I blamed Don's doctor, that he didn't get the reassessment set up sooner. But what else could have been done? Don harassed him every day, but the doctor looked at his test results and said they were fine. Things can go south so fast with liver disease, you never know from one day to the next where you are with it. Don's doctors were all stunned when he suddenly went downhill and died. He had looked like an excellent transplant candidate up to about three days before he died.

I did a lot of research after he died, and found that a lot of what I was upset about would not have helped. I was upset that he wouldn't go to the doctor for regular checkups before he got ill. But it turns out that even if they had found the Hep B years ago, there was no treatment to stop the progression of the cirrhosis -- maybe it could have been slowed, but maybe not. And once someone has liver disease so severe that it causes coma and ascites and all the other nasty side effects, eventually the liver transplant becomes their only real option. And it is not a cure -- lots of things can go wrong with the transplant, as unfortunately you discovered.

So many many things have to be so carefully balanced when a person has liver disease, or is living with a transplanted organ, that any even very minor decision might tip the balance -- or nothing at all that you can discover may end up tipping the balance. There is no way to know if that second doctor was right or wrong, since you don't know what would have happened had you followed the first doctor's recommendation -- there might have been a problem with that, also. You are not God, and neither are the doctors. We are only human, with human limitations, doing the best we can with what we know at the time.

Someone wrote something that meant a lot to me while I was still obsessing on these thoughts of blame and guilt. She wrote, You loved him. You would have done anything, ANYTHING, to save him. No sacrifice would have been too great. If you had the power, he would be with you now, well and happy. But you do not have the power. You are only human. You did the best you could, of course, because you loved him so much.

Ann

[kath]

For the last week Bob was hospitalized and being evaluated for the transplant, I didn't know what to pray for. His kidneys were shutting down and he was finally "sick enough" to be put on the list. I was informed of the risks and the rehabilitation and knew it would have been something that he hated, but he loved us and was willing to do anything to go on living. He always said, "What choice do I have?" Bob was my hero. To him, it was a matter of survival. I worried that if I prayed for a liver to become available that he would suffer more and his life would be horribly miserable. I could never pray for him to die, even though I loved him so much and couldn't stand to see him in such pain. So I prayed that he would be held. And I believe that he was. He seemed oblivious to the battery of tests. He was calm, confident and loving, right to the bitter end. He had no fear, only serenity.

To read these stories, I had no idea there were so many affected by liver disease. During Bob's illness, we didn't talk about it to anyone. It was an addict's illness, misunderstood, and it held only bad connotations. The emergency room only gave us information about alcoholics and I wanted to scream at them. I wanted to tell them there is more to it. What I see now is it affected many good, kind, tender people. I want a group hug. We've been through a lot.

[NotCoping]

Kath, For weeks now, I've been beating myself (while feeling a zillion other things) due to the last time my husband Bob was in the hospital. I was really hard on myself today because it is the anniversary of our first date. Reading your post has helped. I've been telling myself that I didn't pray hard enough and why didn't I ask for a miracle even though I've been asking for one for myself for weeks to pull me through. I was just so scared. I had never seen him so bad, and I didn't know what to pray for except for him to get some rest. He was sedated too heavily to open his eyes because he had a breathing tube, but he was fighting it, so he wasn't sedated enough to not know it was there I don't think.

He had biliary cancer which was removed seven years ago through an extensive surgery leaving half of his liver not functioning, but in the end, it wasn't his liver that failed. Later he developed complications due to scar tissue and had to have a biliary tube and three duodenal stents. The stents were necessary because his food wasn't emptying out of his stomach. Ten months later, the tissue around the stents began to bleed and there was nothing they could do to stop it. He was so sick and was throwing up blood - so much so that I can't get the images out of my head. As a result, he developed aspiration pneumonia that turned into infectious pneumonia and couldn't fight it. A couple of hours before he died, he began hemorraging again. How could he have overcome that? I'd seen him miraculously overcome so many other things.

Thanks for listening,

Mel

[AnnC]

Kath,

It's so hateful that they have to be "sick enough" to be on the list. I do understand the reason, there are not enough donors, but I also have this suspicion that my ex-husband, Don, let himself go a little too long untreated that last time in order to get sicker so they would give him a transplant. When friends would tell him they were praying for him, he would say, "Pray for me to get sicker so they'll put me on the list."

I will tell you that I understand not wanting to see him go through more misery. When Don had that next to last hospitalization where they couldn't clean out or replace his shunt, he said that he wanted a DNR order if for some reason he couldn't get the transplant. He wanted to live, he said, he wasn't giving up and he would keep fighting. But if there was to be no transplant, no light at the end of the tunnel of exhaustion and restrictions, and medications and multiple comas and hospitalizations, then he was done. He said he loved life, but he wasn't afraid of death, and if his time had come, he was at peace with that, and with what came next. (We both believed in the afterlife.)

How awful that you had to deal with the stigma. I have run into that also. First, when I tell anyone that my ex-husband, who was gay, has died, they assume it was AIDS. Then when you say liver disease, they assume he was an alcoholic (he almost never drank, maybe one glass of wine every two months!) He caught Hepatitis B, and that caused the cirrhosis. He did probably get the Hep B from his partner, who sadly died many years ago of an opportunistic infection due to being HIV positive.

But it shouldn't matter WHY people are sick -- my great grandmother died of cirrhosis of the liver, and she didn't drink, didn't have hepatitis, and didn't have gay sex! People get sick for many reasons, and the cause doesn't matter.

Group hug, definitely!

Ann