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Comment by Julia A. on April 3, 2013 at 12:56pm

My mother was only 42 years old when she died during February 2012. She had rheumatiod arthritis which was attacking her lungs and along with some habits that certainly did not help the situation. The doctors would not do a lung transplant because they said she was too high risk to do surgery on her. When the doctors took her off sedation I asked her if she she would want to live that way and she silently mouthed that she would not. She had been sick before but never this bad. She died that night and seeing her dead was the scariest thing I had ever seen in my life. I keep playing it over and over in my mind. Even though the doctors said it was hopeless, sometimes I wonder if we had just waited longer maybe some miracle would have happened.

 

Comment by Judy on November 12, 2012 at 11:46pm

I've been so afraid to visit this group because I kept thinking it would totally undo me. But since I am already totally undone, I have nothing to fear!

It will be six months (on the 15th) since my mother died. I just got back from visiting my father, and each time I go up there, I get torn up. This time was really awful, though. My dad doesn't want to feel sad; he deals by not talking about Mother or the hell we went through. I thought by now I would have that horrible picture out of my head -- the one ingrained in my memory when the respirator came off. And then sitting/standing there watching her struggle to breathe for hours. I try to substitute another image in its place, but I'm not successful. She wouldn't want me to focus on that memory I know, but it is really haunting me. I cried hard all the way home (a two-hour drive) and am still real shaky. Is anyone else going through this?

Comment by Jennifer Blackwood on August 28, 2012 at 6:41pm

My mom had been having problems with low blood sugar and became un-responsive so 911 was called, went to the hospital, they brought her sugar up and sent her home. This was done two more times, and the third time she went to the hospital, she slipped into a coma. I kept her on life support for two weeks, and the doctor said there was nothing more they could do. So I took her off of it, which was the hardest thing in my life. She lasted one more week on her own and passed away during the night while I was asleep. I know that's what she would have wanted but it hurts. I still believed in hope and that things would have gotten better. I mean Drs are only human, they make mistakes too. I miss her like crazy!

Comment by Gyla Lynn Darden on August 19, 2011 at 10:41am

My daughter Brittainy Noel Heise went in for a simple procedure (gall bladder surgery). She had been so very sick for over a week before the surgery.  I had taken her 3 times to the emergency room with temps of 102.4 the first time, 104.6 the second time and 106.8 the day they finally admitted her.  The first 2 times they sent her home with antibiotics and pain meds claiming it was an infection. I am a nurse and was concerned because they weren't telling us what type of infection because they didn't know.  I knew that where she was complaining of pain was where most complain about their gall bladder.

When she came back to her room from post-op, she seemed back to her old self. The surgeon explained to me that it was one of the hardest surgeries she had done. He said that her liver was so enlarged it was wrapped around her gall bladder.  He said he had thought about opening her up to do the surgery, but since she was only 18 he didn't want to leave a scar that big. He also told us that she was leaking bile from somewhere, but couldn't figure out where.  He placed a Jackson-Pratt drain to see how much bile was leaking.  I stayed with her that night in the hospital, about 2 am she started vomiting again, high fever and all other vitals were out of whack.  Over the next 2 days she continued to get worse.  Her blood pressure was too low to give her pain meds by injection, and she couldn't swallow them, because everything she tried to put in her stomach came back up.  By the third day she was put on oxygen, because her oxygen saturation was too low in her blood.  I decided that they weren't doing enough to try and figure out what the problem was and had her transferred to UNC Chapel Hill.  The day she arrived the head surgeon of UNC informed me that the surgeon who did her surgery, cut her bile duct completely in 2 in three different places. She was leaking so much bile into her abdomen that it had damaged her lungs. They went in and repaired the leaks that they could at the time, and kept a drain to allow the rest to leak out. By the third day there she had to be put on a ventilator because she couldn't breathe.  By the fourth day she had to be put on a heart-lung bypass machine.  The doctors told me that she would only have a 50% chance of survival on the machine, IF she survived being put on the machine.  She survived 5 days on the machine.  When they removed the machine she had to be put back on a ventilator.  We thought that she was making some progress.  Then her lungs started collapsing.  In total she had over 20 chest tubes inserted to reinflate her lungs. She was at UNC 32 days, on the 32nd day, I noticed that she started having an irregular heart beat. I said to the doctor "She's dying, isn't she?" He said yes, and wanted to know if I wanted CPR done if she had a heart attack.  I told them "no she has been through enough".  She lasted for another 6 hours, when I noticed that her heart was really struggling.  I knew in my heart that she was fighting to stay alive, and I was afraid that she was suffering.  The doctor asked me if I wanted to take her off the ventilator, and I told them "yes".  I couldn't stand to watch her suffer anymore. It was the hardest thing I have ever had to do. 

I sometimes sit and wonder if I wouldn't have taken her off if she would have survived.  I seem torture myself with it. 

Anyone that has to make a decision like this, it is one of the most torturous decisions in the world. 

I pray that those that have to make this decision can come to some peace within themselves.  I still work on it everyday. 

May God bring you all peace, Gyla

Comment by Diane Grell on June 28, 2011 at 4:41pm

My husband passed away on 1/6/09 as a result of smoking meth. He spent close to 2 weeks in the hospital on a resperator. His heart stopped and he had been without oxygen for over 25 minutes before the ambulance got there. The 3rd day in the hospital he suffered another heart attack and that further damaged his brain and his heart from then on it was watching him die a slow agonizing death. It was a long fight with his family who wanted to transfer him to Mayo clinic for a 2nd opinion. (Well, later to find out it was guilt because the sister was smoking with him.) He would have been severely retarded and was reduced to grunts and groans.  I did not want him to die. But I also knew he would not have wanted to live like  that. So, I had a DNR put on him. Suffice to say he did not suffer anymore heart attacks.  So I chose to turn his machines off. They made him comfortable  and he llived another 3 hours before he passed.